Peyton and Hope

2011-03-16T00:21:00.001-07:00

March 8, 2011- We have TWO walkers now!

2011-03-08T23:37:00.000-08:00

I'm so happy to report that Hope has started to walk! It's been a couple of weeks, but I haven't had a good video to post yet. It's been SO fun watching her learn and to see the excitement her face that she has learned something new. Each day she walks more and more and is starting to take new risks such as getting up and down stairs while staying upright. The other day we took a walk around the block, and for the first time Hope walked it! She walked about half of it total and she was clearly very tired once we were about half way through. I held her the rest of the way, but I was such a proud mommy.

I had to run into Walgreens for some eggs for baking yesterday and didn't want to get the whole stroller out just to get one item, so I let the girls walk with me. That was quite a chore, I must say. They both wanted to go in separate directions and Peyton is faster than Hope, and they were both intrigued with everything in the store. Thankfully it was just Walgreens and not a large grocery store. I don't think we would have every made it out! Haha. Even though it took some work, I love that they love to explore their surroundings.

Just wanted to update on Hope's progress! We also have everything confirmed for the feeding program in Seattle! We will be going in three weeks!

February 4, 2011

2011-02-04T13:09:00.003-08:00

Just thought I would update about Hope's feeding program. I found out that Seattle Children's runs a program much like the ones in Austria and Germany. They have done the rapid wean for the G-tube for a while, supposedly, but made a few changes once Markus from German came over and worked with them. They don't wean calories and fluids down to 0% like Austria/Germany does. Hope will more likely be getting 20% calories right before bed and 80% fluids. I felt more comfortable with this, and also felt more comfortable doing a wean with professionals by my side, considering Hope's medical history. It takes a little bit longer than the European program because the body remembers that it will still be getting food, but it is enough for the children to start feeling hunger and feeling enough motivation to eat. So, we will be going to Seattle for two Weeks on March 28. Peyton will be staying with with Justin and we are working out the details for her care during the day while we are gone.

All of Hope's doctors are on board, and her cardiologist was saying that his doctor friend took their child (100% G-tube fed) to Seattle and was successfully weaned.

This particular program has only weaned a little over 40 children and it has been about 80% successful (in comparison to the 95 % success rate of Austria/Germany) The OT told me, though, that the other children who did not wean had specific reasons, like getting sick or having other developmental problems that affected their progress. So the chances of this being a success are fairly great.

I am going to be going up with a friend of mine who also has a child that is G-tube fed. We are sharing costs of traveling so it will be great to have someone along!

The program is two weeks, we will come home on the weekends, and hopefully stay at the Ronald McDonald house. If the house is full, we will stay in a nearby hotel.

I plan to keep fairly detailed updates about Hope's progress while we are there, because many of the mom's blogs that I have read about their children's progress is the reason that was able to find out about these programs and learn about how they work. I know the hopelessness and frustrations that comes with having a child who does not eat, and the success stories that I have read of kids who were just like Hope, have given me that "light at the end of the tunnel" that I wanted.

There are no guarantees of how this program will go with Hope, because she is in control, as well as God, but it's really nice to know how well other kids have done and I am excited for both Hope and our little friend as well. Anyway, just thought some of you would want the update :)

January 8, 2011

2011-01-08T20:18:00.000-08:00

Hope is snuggling with her baby.
The play clothes box was more of a place to sit than it was storage.

Happy New Year!

Another year has come and gone, way too fast I must say. It has been a couple of months since I posted last. Time has flown by so quickly with the busyness and excitement of the holidays.

With the cold weather, we've spend most of our days inside, but the girls have enjoyed a few new things this year. One of their new adventures this year was going to look at the Christmas lights. They really seemed to enjoy them, and whenever we came to new lights, they would shout from the backseat, "lights!" This year is the first year that they've been old enough to really enjoy some of the things that the the holidays bring like opening presents, Christmas lights, and snow. Present opening was fun as well. Peyton, especially, became quite energized throughout the day as she unwrapped more and more toys. To help us have fun inside, their Grandma and Grandpa Knight bought them a little tent with a tunnel to crawl through. They LOVE it and love playing inside of it.

Another thing we started last month was story time at the library. It's been nice to have something to go to that gets us all out of the house. It's funny to watch their personalities when they are in a group. Peyton is a little more shy and reserved. She observes, and then decides what she wants to do. Hope just jumps in and visits or plays.

As far as development and milestones go, both girls are still learning more and more words every day. Peyton uses mostly two word sentences, but has several three word sentences and she even added in a 5 words sentence the other day, "I don't want that sweater." Haha. She used to love all clothes, but now she likes to pick out her clothes and often doesn't want to wear her "sweater." This poses a challenge for me when we are in public and in the cold weather. :)

Hope has many new words and is developing nicely with her OT and PT therapy. She is working on puzzles now and is progressing with her walking. She has just started to leave the couch to walk to something a short distance a way without being prompted. She's done this a handful of times, so hopefully she'll be walking soon!! Her doctor thinks that she may need a brace/shoe insert to help her stabilize more. She noticed that she is having a hard time keeping everything aligned where it should be and that a brace may help her to have an easier time walking. When we see her PT next week we will look into it.

Hope's Dr. is also concerned about her growth. She has really slowed down this year and is still very small, especially in length and head growth. I would LOVE prayers for this. It could be just a nutrition issue since she has spent much of the last year throwing up a lot of her food. We have this under control MUCH more now with the help of one of her doctors, but she has also been referred to an endocrine doctor to make sure that she doesn't have any problems that could be helped now. So we will see about that later.

Hope has continued with the feeding program for her eating. She has made a couple more baby steps. Our next biggest challenge is to get her to chew on something like licorice that she can't bite off so that she can learn to chew.

I have been introduced to a highly successful feeding program that is based out of Graz, Austria. They do Net-Coaching to help babies wean off of the G-Tube. Their philosophies are somewhat different from those we hold in America, but I have talked to several parents whose children had no eating skills whatsoever and were weaned off of the G-tube. Some to liquids like a normal baby, and some to pureed foods or even regular food. I have been in contact with other parents who have done the program as well as the Graz team, and we are hoping to do their Net-Coaching program next month. I am praying a lot about this because I want to make sure it's the right thing for Hope. So far, Hope's doctors and therapists are on board. More to come on that!

God has been so incredibly great to us these past couple of months and He is building my faith daily. I am very excited for 2011 as we will be going through a lot of changes with having two walkers, we will be moving (locally), my husband will have a new job, the girls will start preschool, turn three, etc. All by God's grace, these will be exciting new memories that we will be able to make this year!

2010-10-25T13:51:00.001-07:00

Pumpin Patch

We took a quick trip to Mt. St. Helens for the afternoon....

Getting ready for her first hair cut

First hair cut

October Update

2010-10-25T13:01:00.001-07:00

Reading their new book..
She was a tad cranky, but the bride cheered her up!
If you have kids in your life, then you understand this...... Getting good pics with toddlers is NOT easy!
There's a smile

Birthday "Pancakes" as Peyton would say.....

Tired from a day's play
Happy Fall Everyone!

For Portland, we've had such beautiful weather this fall and we have enjoyed it so much. We've had a busy, busy month with Birthdays, weddings, family visits, and the Pumpkin Patch.

The girls just turned two this past Saturday. We didn't have a birthday party this weekend because we all were in a wedding on Sunday, so we just didn't want to fill the weekend up too much. We did celebrate with my mom and a friend that was over, though, and the girls had cupcakes. Hope played with hers and Peyton just licked the frosting off of the top of hers.

This weekend, my heart was filled with much gratefulness towards the Lord for bringing Hope and Peyton this far. I am sure every parent has a sense of awe at how big their children are getting as each birthday approaches. I know I certainly do. Those moment when I wondered if they would even make it until their first birthday are etched into my memory and still seem very real. Now, as they sit here at two years of age, reaching milestones that we were told they may never reach, I am just in such amazement of how good God is.

The wedding we were in this weekend was amazingly beautiful. Our friend, Heather, did such a fantastic job at planning. Not a detail was missed. The girls did very well. We walked down the isle with them in a wagon and they sat calmly as everyone watched. At the very end, Hope through a handful of flowers. My mom met them on the side, because we knew they wouldn't last through the ceremony with out several disruptions :) I am eternally grateful for my mom's help this weekend!

As far as milestones go, Peyton is increasing her vocabulary incredibly. Considering that at 18 months she had not even said her first word, I am amazed at how far she has come. She is starting to put two words together, express herself, and communicate what she wants more clearly. She really has a mind of her own and is definitely coming in to her two year old, independent, self.

Hope's vocabulary is also quickly expanding. She probably has 40-45 words now that she says. Most have been learned in the past 1 1/2 to 2 months. Her PT reminded me that because she's been working on her speech so much, that could be a big reason we've seen a little plateau in her motor skills, for walking at least. She is still getting much stronger and I'm sure will be walking very soon.

Hope's new glasses prescription seems to be helping her a little more as well. Her OT noticed right away that her hand-eye coordination improved significantly since the last time she saw her. We are also back to patching for 1 hour a day. The hope is that the new prescription and patching will help her want to use her right eye more and hopefully bring her two eyes to work together. We are praying it works so that she doesn't have to have another eye surgery in the future.

Anyway, that's it for now!

September Update

2010-09-13T13:44:00.000-07:00

Today has been exciting! Hope took her first three steps today!!! PT was over working with her. She didn't quite know what she was doing because she was so focused on getting her toy, but I was THRILLED!!

Both girls are developing new words. Hope is learning new words and imitating our words more. Peyton's speech has really taken off. She's communicating very well now. Justin "lost" his keys yesterday and after her bath, she rand out and picked up her toy that she had hid his keys in and said, "keys!" We've been waiting for the day when the girls can remember where they hide our stuff!! Haha.

Peyton is very aware of Hope. She likes Hope to be around when she is and take part in things we are doing. She will take toys from Hope, but usually replaces them with another toy. And if she has too many toys to handle, she will give them to Hope and say, "Niiiice." :)

Peyton has learned the different types of clothing like pants, shirt, shoes, socks, and PJ's. Once she is dressed for the day, she makes sure Hope has clothes too :) It's so sweet to see how thoughtful she is towards her sister. Hope is just as sweet and is learning to communicate that.

Anyway, there isn't too much more to share this month! The girls will be two next month and they will also be in a wedding with us. We are working on throwing flowers out of the wagon. So far, so good! We are spending as much time outside as possible before we go in to hibernation for the winter. We are going to do swim lessons with the girls this fall/winter so we have something fun to do outside of the house. We're very excited for that.

2010-09-13T00:29:00.001-07:00

2010-08-19T10:00:00.001-07:00

2010-08-19T09:55:00.001-07:00

August 17th, 2010

2010-08-16T08:49:00.000-07:00

Well, it's about time for my August update! I have now found an app on my phone that allows me to post pictures onto here from my phone. It's supposed to do videos as well, but I haven't figured out how to make it work yet.

Life has been great. The past few weeks has been pretty crazy. We started off August in Sunriver with a bunch of friends, then went to Dune Fest at the Oregon Coast and camped, and we just got back yesterday from Tri Cities/Hermiston visiting family. Justin had a dinner for his 10 year class reunion so the girls stayed the night with my mom and then on Saturday we packed our day with some Jet Skiing/ Playing in the water, horseback riding (for the girls), and ended the night with some Smore's roasting over the fire pit and watching the meteor shower.

All of this business is so fun, but it can be a little overwhelming with 1 year old twins. I've been running around like a chicken with my head cut of trying to finish the loads of laundry, pack, un-pack, pack, un-pack, pack, un-pack, oh wait, and try to take care of Hope and Peyton! Amidst the craziness, however, God still finds ways to speak to my heart. I often think about the day the girls were born and how I heard the voice of the Lord right before the girls were born. I cannot think about that moment without tearing up. He was so real in that moment, and my panic and fear was instantly flooded with a peaceful calm. I'll never forget the feeling, the sound of His voice, and the peace unspeakable.

The other day, I woke up feeling a little overwhelmed at my long list of things to do for the day, but I opened my Bible to the story about when Jesus visited Mary and Martha. When Martha, overwhelmed by all of the preparations for her guest, asked Jesus, "Don't you care that my sister left me to do the work by myself?" and He replied, " you are worried and upset about many things, but only one things is needed (that's Jesus). Mary has chosen what is better, and it will not be taken away from her." (Luke 10) Feeling thankful for God's written word, I knew the Lord was reminding me to focus on Him when I am feeling overwhelmed and that He can give me the same peace that He gave me the day the girls were born.

So anyway, updates on the girls.

The girls just got weighed and measured yesterday. Peyton is 32.5 inches and 21 lbs 7 ounces, and Hope is 30 inches and 20 lbs 1 oz. Hope was not gaining weight for a while because she was throwing up so much. We FINALLY have resolved that problem (mostly) by feeding her much slower and also getting her feeding pump back to help feeds go slower and also catch her up if we get behind. It's helped, as she's gained 1/2 a lb in the last 2 weeks!

We finally see some progress with Hope's feeds. She loves to try new foods. She won't take bites or chew, but she likes to put new foods in her mouth for the taste. I also had her try a banana, yogurt, and milk smoothie and she like it! So we will continue giving her smoothies out of a cup.

Peyton is talking A LOT now. She has several words and is imitating almost everything we say. Hope is also talking a lot now too. She has 6-8 words that she knows now, and her baby talk is emerging as well.

Hope is so close to walking! She's cruising along the couch and pulling herself up on everything. She's gaining strength and stability.

We are so excited for both of the girls' new progress! Only 2 more months and they will be TWO!

Anyway, time to go do more laundry! God bless.

2010-08-15T14:58:00.001-07:00

2010-08-15T14:50:00.001-07:00

July 10, 2010

2010-07-10T23:05:00.000-07:00

Sitting in their new chairs that my mom got them. She bedazzled them as well :)

At a BBQ- No, it's not winter, but it was getting cold! Had to throw on their sweaters.
Gotta love the facial expressions :)

I asked Justin to put this shirt on Peyton and here's the finished product :) After me laughing hysterically, he says, " Why would you give me a shirt like that anyway?" Oops. I guess that's a mommy no-no ;)

The girls both like putting my sunglasses on

June 25th, 2010-

2010-06-25T12:23:00.001-07:00

More Pics Coming tonight....

We took the girls downtown to the fountain. It was PERFECT for them! They could sit or stand and still play. They had a blast.

I thought I'd post some recent pics since I haven't in a while. A few new things are Peyton can say "up" now, and Hope can point to her nose and mouth now. The picture, above, is from today. Hope used to not even want to touch food, and now this is what meal time looks like. And we are supposed to try and do this three times a day. Today she took 5 bites on her own! She wont open her mouth for me, but sometimes she will take a bit herself. We experimented with a fruit and yogurt smoothy today, since it has more texture than pudding, and it went well. She seemed to like it.

Hope also had an eye appointment yesterday. We've been doing so good at patching that she is actually favoring her bad eye. So we don't have to patch for the next three months. The doctor things she'll go back to using her good eye. We would greatly appreciate prayer for Hope's eyes. The vision in her right eye can still get better.

Anyway, For all of you who have asked for pictures, I hope you enjoy!

June 20, 2010

2010-06-20T23:17:00.000-07:00

The girls are learning all sorts of things these days....

The most exciting right now is that Hope has learned to crawl!!! It was kind of out of now where. She looked as if that's how she had been getting around all along, but it's been great! Each day, she seems to be going longer distances. We were standing in the back at church today and she just took off! Making her way over to the crowd :) (Yes, I re-directed her) The next day, she woke up crying, when I went to check on her, she was standing up in her crib! Same thing happened at her nap time as well. She is also pulling herself up to her knees other things like the couch, toys, and of course, myself :)

Peyton has learned what her teeth are, how to sing, and that if she puts something down the top of her shirt, it will come out the bottom. She's still doing well with her sign language, and some words are finally starting to come out. Peyton is even learned how to put things away, which comes in quite handy as she pulls bottles of lotion and dental floss out of our bathroom drawers on a regular basis ;) She is learning to wipe things as well. You'd thing she has OCD parents by watching her as she uses rags (or anything cloth) to wipe things up like the carpet, the tile floor at our cousin's grad party yesterday, or even the seat on her little tricycle. If finally figured out that she is always watching me clean up Hope's spit up because I am certainly not the "mop -on -your- hands -and knees- type" Hopefully this tidy side of Peyton sticks and she can pass it on to Hope!!! ;)

Oh yes, and FINALLY, the girls have both learned an animal sound! They know the cow sound!

All of this learning is so fun. It keeps us smiling all day long. Now, if only we could catch some sun so the girls could learn that the sky is actually blue and not gray :)

May 26, 2010

2010-05-26T21:20:00.001-07:00

Hello all :) Sorry for the lack of posts lately, my plan is to update at least once a month now, but on top of keeping super busy, my camera has had issues. I hope you all are getting through this terrible weather with out going crazy. I am BEYOND ready for the sun! Hopefully Mr. Sunshine will visit sooner than later so we can get some of his Vitamin D and bronzing capabilities.

The girls are doing wonderful. Not a whole lot of new has gone on during the past month except for a few things:

Hope can push herself from laying down into sitting now- something we've been working on for a long time. She can also pull herself up onto sturdy things like the toy box (like in video). She still has a hard time situating her feet and getting up on everything, but her strength has grown tremendously. Although she's not crawling yet, she can roller herself anywhere and has started to follow us around just like Peyton does. If we go to another room she will roll around and follow us. She is 28 inches long and weighs a little over 20 lbs. She is gaining strength through her core muscles and her legs. She has a little stroller that she used to not be able to walk behind and now, with assistance, she can walk behind her stroller. I think she will be walking and crawling very soon. Hope is still not eating but we went back to her feeding therapist that saw her at the hospital, and so far, so good. She got Hope to play with her food more, so we've been putting food in front of Hope each day so she can get used to textures. She loves to play in smooth textures like yogurt, and she's warming up to the ones like oatmeal.

Peyton is usually busy exploring the house and getting into things. She is very mild tempered and her new little temper tantrums are about the weakest tantrums I've ever seen. She's starting to test her limits a little now, so I'm having to discipline her a tad. Not much though. Peyton LOVES shoes! Each morning, she brings me a pair of shoes and then sits down in front of me so I can put them on her. Her first word was the other day and it was "shoe." She also learned the word, "here." She uses it when she brings me clothes or shoes that she wants me to put on. She even likes to bring me my own shoes so I can put them on myself. She's starting her shoe/clothing awfully young! The greatest thing is that she usually gets one shoe to start with and when she realizes she only has one foot covered, she is able to go find the matching shoe from her bin. Peyton is going to be seen by speech early intervention for her speech delay. We aren't too worried about it because we know it's so common for preemies, but we just want to get an early of a start on helping her as possible. For the mean time, we are trying to teach her sign language. She's learned to sign the word, "more," now and she uses it all the time. It's great that she can communicate to us when she wants something now.

Both of the girls love to play outside and bubbles. If we walk towards the door with Hope, she squeals and kicks her legs, and Peyton waves and runs to the door. They have both learned part of the signs for the Itsy Bitsy Spider. The song plays on their DVD and Peyton comes running from wherever she's at to listen. Both girls have five teeth now. Peyton has three on the top and two on the bottom. Hope has three on the bottom and two on the top. Both girls are also very friendly to EVERYONE. We are doing what we can to teach them boundaries for that.

Both of the girls are learning to play with each other more and more. They can really get a giggle going between them now, especially when they are playing in their cribs.

That's about it for now! Hope you enjoy the pics.

March 31, 2010

2010-03-31T19:17:00.000-07:00

All smiles :) Hope was really into Peyton's chair as well
She liked her hat backwards
Peyton loving on Tazer

Happy Spring! The few days of wonderful weather has been soooo nice! Taking walks and playing out in the back yard has been a fantastic luxury, considering the winter weather has kept us in doors for what seems like a VERY long time!

The girls are doing GREAT! April is considered the last month of the cold and flu season and we made it through with only one little cold! I'm crossing my fingers for all the bugs to continue to STAY AWAY.

Let's see, what's new?

Both of the girls are about 20 lbs right now. Hope's still a little shorter maybe and inch or two.

Peyton is walking almost everywhere now. She has four teeth. She's OBSESSED with her green chair :) Can't keep her out of it. She's eating well and growing and just all around being a sweet light in our lives. She explores EVERYTHING. Of course, this means she's more work. I can't imagine what it will be like when I have to babies strolling around the house like she does. Peyton, alone, keeps me on my toes. Pretty much everything is a phone to her these days. She makes the strap on her highchair a phone, Hopes tubing for her G-tube, the remote, etc. by putting it up to her ear like she does her phone and saying "ha! (hi)" Too cute. She is quite interactive with us now. Her little smiles and laughs are precious.

Hope is doing all sorts of new things. I posted the video where she is showing off her moves. She also likes to dance and "roll it" with her hands. She is still working on crawling. She can do pretty much everything besides crawl. PT says she things Hope will probably crawl about the same time she pulls herself up to stand. She needs to build a lot of muscle in her tummy yet, so we're working on that.

I found a sippy cup that Hope loves! She will drink milk, water and juice out of it. Huge! It's not a whole lot of volume, but it's consistent and she doesn't gag. She still has a tough time eating solids, though, and of course any volume of anything. A good thing with feeding, also, is that Hope is eating all natural foods now! No more formula and Pediasure! We bought a Blendtec blender, well part of it. My mom gifted us with part of the money for it since it's so expensive! But it's been amazing! I make up a batch of food for Hope each day full of fruits, veggies, grains, proteins, fats, dairy etc., and it's ready to go. On top of that, we've made a couple of Potato soups, Green smoothies, sorbet and ice creams and shakes, spaghetti sauce so far. Everything is SO easy to make, SO good, very low calorie, and completely natural. Most definitely worth the money!

Hope saw her eye doctor this month. He said that the eye patching is working. Her eye alignment hasn't changed much, but it has a little. However, he is worried about her right eye (her bad eye) He said it's "unhealthy," that her optic nerve is pale. I have a lot more questions for him since I didn't quite get the clarification that I needed. So I'll talk to him a little more next appointment. I know she's in God's hands, so all will be well. Extra prayers for her eyes would be much appreciated though!

Justin had the privilege of meeting the father of the very first baby to ever receive surfactant for his lungs. Surfactant is a substance that coats the lungs and they greatly helps the lungs of preemies. It was cool to meet one of the people that played a part in something that helps babies so much. I can't remember if both of my girls received it, but I know one did.

Anyway, things are going well. The Spring has Sprung me into spring cleaning mode and we are busy, busy, busy. I hope you all enjoy the videos :) God bless.

February 28, 2010

2010-02-28T22:46:00.000-08:00

Playing Peek-A-Boo
She has a cute little thing she does with her hands when she wants you to pick her up..... :)

And still, I'm writing 2009...... time flies SOOOO fast!!! The girls are 16 months now; almost 1 1/2 year, and they are learning so much all the time. I forgot to mention in my last post that Hope's first little tooth has come in now. I'm sure she'll be super cute with teeth! We went to our friend's birthday party yesterday and it was fun to see her personality with all the people. She definitely is quite the little social butterfly. She was excited to hang with whoever wanted to play with her. Peyton likes people just as much, but she took time to sit back and observe everyone for a bit before really showing her personality.

Hope is rolling EVERYWHERE now; she's a little fireball. I learned today that Hope no longer will stay in one place if left. I sat her on her blanket after feeding her, walked into my bedroom for a couple minutes to brush my teeth, and came out, looked on the blanket, and found no Hope! She had got from sitting to laying down, and rolled across the room. She was grinning from ear to ear, obviously having a fun time with her newfound mobility.

Peyton is learning to put shapes in the corresponding hole. She has a green triangle that she has figured out only goes in one of the holes, and is working on the others as well. She also LOVES to play peek-a-boo. You can see the video for a little snippet. Most of the time when I am feeding Hope, she will come over to the side of her crib and play peek-a-boo with me. It's too cute!

Anyway, didn't mean to write so much! I hope you all doing wonderful.

Progress!!!

2010-02-25T21:52:00.000-08:00

Hope has made some amazing accomplishments this week.....

1) She took 5 bites of oatmeal- no gagging, and opened her mouth for each bite. This hasn't happened since, but that was still pretty cool!!!

2) She's made progress with her sippy cup. She loves water and for some reason, she doesn't mind putting her tongue out for this cup. She's taken a couple small drinks from it, swallowed, and no problem.

3) She's leaned on one arm to reach for a toy that is far away. Normally she'd just sit there and look at a toy that she wanted, but couldn't reach; but tonight, she decided she would actually go for it and did great! PT has been working on this for a long time so they'll be proud!

4) She pushed up on to her hands and knees all by herself! She was rolling around on the ground and I watched her push right up on to hands and knees! She did it a few times! PT has also been working on this for a long time.

Glory to God. Seated on His throne of righteousness, high and lifted up, worthy of all of our praise; Yet at the same time, concerned with our human needs and desires, pursuing our hearts and loving us through all of our fear and failures as well as our victories. THANK YOU LORD for being all that we need, when we need it.

February 14, 2009

2010-02-14T13:22:00.000-08:00

I looooove them :)
Playin :) As you can see, Hope's hair has grown in a little funny. SUPER thick on the top, parted aaaal the way over on the side of her head. Putting it up helps out :)

Hello again! Happy Valentine's Day ya'll. I hope you are able to spend time with your loved ones . We had some close friends visit us from out of town with their three kids and we were able to have a great time watching the kids play and visiting. I think the girls really liked having other kids to play with. Both girls love visitors and just cuddle up with anyone who comes in. Well, usually Peyton will crawl up to them and have them hold her and Hope will wiggle around with excitement.

Both of the girls are doing great still! Peyton has 4 teeth now, she is learning how to feed herself, and has taken about 10 steps on her own. She loses confidence after that and drops to the ground. I imagine she'll be walking very soon. Peyton has learned to share her things more and now likes to sit down and read books. She also likes to shake tables, and get into EVERYTHING imaginable. She's taller now, so she's given me a couple lessons on how to child proof a home. :)

Hope is getting much stronger each day. We are still working on getting her to crawl and move forward. She rolls around to get what she want, so we are trying to teach her that there are easier ways to do that..... like crawling :) Hope has also become quite the comedian. At night, she often gets a little burst of energy and she pulls out every funny thing she can do to make us laugh. We certainly enjoy watching her as she entertains. We've also been able to move Hope off of formula on to regular food. We make up a batch each morning that has all of the foods she needs for the day, puree it, and refrigerate it. So far it's been working great. We are still working with Hopes feeding, no real progress yet, but she'll get there someday!

The girls are playing with each other more lately and having fun together. Peyton likes to look over into Hope's crib and squeal at her while Hope laughs and talks back.

Anyway, that's it for now!

PRAISE! December 4, 2010

2010-01-04T16:36:00.000-08:00

Hope sucked on my finger! Okay, I know it doesn't seem like a big deal, but it is to me!!! She hasn't done that in months! I was praying for her, as I usually do each day, and just asking God to take away the sensitivity in her mouth, as well as her fears about eating and as we were doing her daily oral massage, she sucked on my finger......without gagging! This is a great first bay step towards her goal!! I thought I'd share....God is so good and great and His timing is PERFECT.

Did I also mention she hasn't needed oxygen in 12 days! Satting 98-100 as she sleeps. She will see her cardiologist in a week and I'll bet he'll say her pulmonary hypertension is gone :)

Keep the prayers coming for continued progress! Thanks!

December 30, 2009

2009-12-30T19:59:00.000-08:00

Hope getting kisses from Bethany

Peyton and Broxson, our friend Trevor's son. Too cute!

Posin' in front of the lights on Peacock Lane

All bundled up
Bubbles!

Grandpa Dave and the girls
I hope these facial expressions never end!
She's is such a happy little baby. Since we've been back visiting parents for Christmas, she gets extremely excited to sit with them. It's so cute since she looks like a fish out of water waving her arms, legs, and pretty much whole body.

This was from a while ago but so cute (above and below)

These (above and below) were taken while we were waiting for Hope's heart surgery.
Peyton with her Grandpa Jack
Hope's hat was a little big :) Last year's family pic was in the hospital! It's so nice to be home.

Helping Grandma Shauna make apple cake

Hope with dad showing of her new Osh Kosh overalls that she got from Justin's parents

Grandma Shauna and Peyton in her new Osh Kosh overalls
Aunt Jeni with the girls

Peyton with Auntie Jeni
Our little gift :) This was her first Christmas at HOME!!!

Putting the water in her face from her new fountain toy....

Ta DA!!! Here are the much requested pics and updates :) Both of the girls are doing great! They just get more and more fun each day.

Peyton is making several more sounds and facial expressions. She is pointing at everything that she wants or likes and waving, trying to say hi/bye, and also trying to saw wow (sounds a little more like wa). She's not walking on her own yet, but likes to walk around the house with us. She's just building confidence to try on her own. She got a bath toy for Christmas that makes a little fountain of water and she puts it right in her face and will even try to lap the water up like a puppy. It's super cute. She loves to look at books and look at the pictures. She can be a little shy at first with some people, but most of the time she is very sociable and loves to cuddle with anyone (when she's not wiggling :)n ). She loves to be involved in the things we are doing and explore new things. She can give high-fives and lift up her arms to show excitement. She has a thing for people's teeth. She likes to just stick her finger right in your mouth and play with them. She also knows that faking a cough gets her attention, along with a hacking sound (that is kind of embarrassing in the grocery store, and a WAY cute little giggle) Her personality is quite adorable.

Hope is doing great as well. She has only needed oxygen two days in the past week while sleeping! We are praying that she will keep this up. She is also not on the specialized formula anymore. She's moved to Pediasure which is a little higher calorie and for kids over one year of age. She's tolerated it really well so far. It seems like Hope has just made huge turn as far as development goes. She warms all of our hearts with her constant smiles and peaceful demeanor. She loves having her picture taken. When she sees the flash, she smiles, so it's not hard to get a picture with her smiling. She is saying Da-Da now and is talking a lot! A couple of weeks ago she was saying Da-Da, Ga-Ga, and Ya-Ya, but now she's narrowed it down to just da-da. A few days ago she started clapping. Hope is still eating completely from her G-tube, but as recommended from her OT/PT, we've given her vibrating toys to chew on and she loves them! We've noticed her putting more toys in her mouth, sticking her tongue out more, and just more all around comfortability with her mouth. Hopefully we will be making some more progress with her eating soon! She has a little tightness in the right side of her neck and the stretches we are supposed to do with them SUCK!!! I hate doing them and so does she. Hope also is seeing a new eye doctor now because her other one is leaving the office. He said we need to be patching her eye more to try and catch it up. She we are to patch a minimum of two hours a day on up to 4 or 5. Hope is also building much more strength. If we put her on her hands and knees, she can hold her self up for about 30 seconds now.

In a couple of days, on July 2nd, it will be my actual due date when I would have had the girls had I gone the full 40 weeks. It's been such a great year. They give us constant laughter and joy. I love being able to be at home with them and am thankful that I can.

I hope all of you had a wonderful Christmas and have a great New Year's Eve/New Year! Stay safe in the snow and ice as well!

Love you all

November 21, 2009

2009-11-21T19:49:00.000-08:00

Greetings :) I can't believe it's almost Thanksgiving! Time certainly does go by faster when you have babies! I hope you are all enjoying yourselves as the holiday festivities are starting to kick off. Hope and Peyton had a great first birthday. For only having grandparents over and a couple of friends that stopped by, they were not lacking in gifts. They played all weekend with grandmas and grandpa and by the end of it, they were pretty tuckered out. We gave them a little piece of cake that they didn't really enjoy, but we got to snap a couple of cute pictures and videos while they tried it.

Both girls are doing great developmentally as well. Peyton is eating more and more solids and can chew soft foods. Her nutritionist gave her some Fruit Loops and she liked those. We are still working on getting her to take a sippy cup so we can wean her off of the bottle eventually, but for now, she just likes to bite on it :) Peyton can stand on her own now for 10-15 seconds. She's pretty coordinated with reaching using objects to help her stand up and walk. When playing Pat-A-Cake, she rolls her little arms and tries to say "Roooolll it." It comes out more like "wooooah woooah wooah." It's super cute. She claps and babbles and still smiles a lot. Oh yes, and she has her first tooth!

Hope is coming right along as well. Her personality is coming out as she is learning more facial expressions and making more noise. I've even heard just a few vowel-consonant syllables in there too! She has such a sweetness about her that makes me melt every time I see her little smile. She's still not eating, but she sits with Peyton when she eats and plays and every once in a while, she'll let me give her a bite of yogurt or fruit. Hope is rolling everywhere now and building gaining strength in her core. She sits up for an extended amount of time. We are still working on helping her to catch herself when she falls. She's doing well at sitting on her knees with help and getting up on her hands and knees as well. We are still just trying to help her strengthen her muscles and gain coordination, but she's coming along just as we'd hope her to. Hope's G-tube is working out fine and as we've transitioned to all day feeds, and only TWO medications (she's no longer on her Lasix and Potassium Chloride) , her night time routine is much shorter and feeds go A LOT faster. I would still like to ask you for prayer for her reflux and for her feeding. The Lord has been SO good to us and I am so thankful for what he has done.

Speaking of what He has done, it's been over a year now since you all have prayed for the girls and us. Thank you, with everything in me, for that. Not a day goes by when I do not stop and thank the Lord for how great he is, and for what He has done for us. Looking back, this year has gone by really fast. It didn't seem that way while at the hospital, but it really has gone by so fast. I will look back at this year as the hardest year to year and a half of my life, but also the BEST. If I had not gone through this trial, how would God have shown me how He can lift me out of my despair? Had I not needed peace, how would I have met my Prince of Peace? Had I not needed to trust in someone other than myself, how would I have learned that our God is worthy of our trust, and that is yolk is easy and his burden is light? Had Hope and Peyton not needed to be saved, how would I be able to see that side of God, that reaches into the depths of disease, statistics, and weakness, and brings life. I will always believe in Him by faith, but I feel lucky to have been able to see these sides of God for myself, this side of heaven. Oh, how I wish that the girls never had to have gone through any of the stuff they've been through, but at the same time I praise God for what He has made out of it all. He truly can take any situation and make good come out of it. I'm thankful for God's Word, in that we can learn to know who He is and what He has done and can do, but sometimes it's only in our trials, that we can experience for ourselves, who He is.

Anyway, thank you all for your support during the past couple of years and for all of your prayers.

I hope you enjoy the pictures and your Thanksgiving!

Another classic Peyton face. We had a nice sunny day and I took the girls to the park! They are big enough for the swings now and they had a blast! I don't know who had more fun, though, me or them :) I have some more pics of Hope swinging that I will post later.
Is this not the same facial expression or what !? Haha! "Another picture you guys? Are you SERIOUS!"
My Sweetheart
She LOVED the tissue paper! It kept her attention for quite a while.

Peyton showing off her cowgirl boots! She's such a sweetie.

We tried so hard to get them in their "I AM 1" shirts that Holly gave them. It's REALLY hard to get two one year olds to sit still for a pic.

Trying her cake....not liking it so much
Angel isn't really picking her nose but it sure looks like it! This is her friend that was born a day apart from her in the same hospital. They almost look more like twins than they do with their actual twin sisters.

2009-10-20T19:19:00.000-07:00

Hello :) Both of the girls are still doing great. Hope is doing well with her G-tube. Feeds go pretty fast now and we are just going to be working on the social aspect of eating with her, and trying to make it all a positive experience for her.

The girls are happy and learning a lot. Peyton is getting stronger and quicker as she crawls and pulls herself up on everything. She loves to say "da-da" right now even though she knows other syllables. You can see this in the video posted below.

It is so fun being a stay at home mom. I couldn't think of a better way to spend my days. I miss my job because I loved my job, but nothing really beats spending time with those you love the most.

Anyway, more updates later!

Peyton found this safety belt that goes with their high-chair....it was cute to see how something so simple could entertain her for so long!

October 14, 2009

2009-10-14T21:23:00.000-07:00

Things went GREAT yesterday for Hope's G-tube placement. We arrived at the hospital in the morning, it took about 40-45 minutes total for them to intubate her, get her IV in, do the procedure, and extubate her. It felt like 10! It was so fast! Afterwards Hope was a little cranky so I went to the recovery room and held her. She fell asleep and then woke up once she got in her room. She was in a great mood for the rest of the day! It didn't take long for her to be smiling and playing with her rattles.

The G-tube/ PEG is very simple and easy to take care of. It seems like it might be a little sore for her, but it doesn't seem to be bothering her too much. She will go back in 6 weeks to get the button placed. She shouldn't need to stay the night that time though. The hospital was really great at helping keep Hope isolated so she didn't get sick during her stay. She had her own room and we even had two of our favorite nurses! It was a great surprise to our day!

Thanks for your prayers!

G-tube October 11, 2009

2009-10-11T17:36:00.000-07:00

Happpy Sunday!

I love how the weather has been sooo nice for mid October! I have a few minutes and just wanted to give an update that Hope will be having her surgery for her G-Tube on Tuesday at 10 am. We will be staying over night just to make sure everything goes well after she gets extubated and wakes up. Please pray that everything runs smoothly.

God has been so good to us. He's so faithful and loving and compassionate. So gracious, so forgiving, and most of all...patient.

12 more days till the girls are ONE!!! Yippee! No big birthday this year, though. As much as I'd love to PAR-TAY and celebrate the last year, too many people have been sick lately for us to risk it.

Love you all so very very much.

October 2, 2009

2009-10-02T23:22:00.000-07:00

Hope sitting up all on her own. This was the first time it was for about a minute!
Someone has learned how to pull herself up on her crib. It's awfully cute.
Peace manifested.
Finding something new to climb on
Hope has been practicing her piano while Peyton crawls up on the other side (usually pushing the toy into Hope's stomach and interrupting her song. ) I'm always there to mediate though :)
Beauty
Goin' on a walk.... they almost look the same size
This was before she could pull herself up....she didn't know that she couldn't go THROUGH the glass to get the water bottle.
Snuggles
"MMMM......"

Hope practicing rolling over...... End
Middle
Beginning
"STOP...in the name of love...... " :)
Daddy loves

Hello Again :)

So much has happened since I last wrote! Both of the girls are doing great! Hope has been home for 12 weeks now and she's keepin' healthy and getting more and more energy and active each week. Her personality is definately coming out more and she seems to be more engaged and social than ever before. It's SO fun! She is talking a lot. Still no ba-bas or mamas, but she's in those first stages of learning her voice. Her voice is much louder now. We used to not be able to hear her in the other room, but now it's hard not to hear her :) Hope is rolling over to one side from her belly to back and tonight she just rolled from her back to her belly 4-5 times all on her own!!!! She also sat up all by herself today for about a minute! Big milestones today :) She's also become more curious about the world around her which causes her to explore things more (as much as she can)

Hope is 17 pounds 6 ounces and 26 inches now. She is still using oxygen for naps and nighttimes, and she still has the NG tube because she is not eating. We met with the GI doctor today and we scheduled for Hope to have a G-tube put in on the 13th. I REALLY don't want her to have to go through another surgery and be intubated again, but it's been three months, and she's not eating ANYTHING. It seems like it will be a while before she gets back to where she used to be. The procedure is only a 15 minute procedure in itself and pretty straight forward. She'll spend the night in the hospital just to make sure everything goes well, but she should go home the next day. I am still hoping and praying that she'll come around though. It's all in God's hands and I know he'll take care of Hope no matter what.

Peyton is doing wonderful as well. She's crawling, eating lots of solids, and pulling herself up on EVERYTHING. She's had a rough couple of days with a low-grade fever yesterday morning, really cranky, and not eating as much. She doesn't have any cold or flu symptoms so we're just watching her for now. I think she might be teething because of how swollen her gums are and her wanting to chew on everything. I'm hoping she'll start eating again soon- Hope is leaving her behind! :) Peyton weighs about 17 pounds now and is over 27 inches.

Both girls are still sleeping great, happy and healthy. I can't ask for much more. I can't believe they will be celebrating their first birthday this month! 20 more days! We will probably have a little get together with grandparents maybe, but we will not be having a full-fledge birthday party in order to lower the risk of them getting sick. The flu and colds have already begun their tour this year, so we are already trying to take the right precautions. I have a good stock of unread books, girly movies, my Bible study, warm clothes, and hot chocolate all waiting my attention.

I hope you enjoy the pics and videos, and I hope you all enjoy the weekend. Fall is here so keep warm, keep healthy, and be blessed.

September 13, 2009

2009-09-13T13:53:00.001-07:00

Happy Sunday!

I love Sundays. There's just something about them that gives us permission to slow it down a little bit. Maybe that something is the Lord, telling us we need to rest, I don't know, but it's nice. I'm just hoping we have a couple more SUNNY Sundays to spend before the cold weather comes.

As for the girls, Hope's weight gain was REAL!!! After Hope's pediatrician,, and I all sat and scratched our heads at why she was gaining so much weight but not really showing any other signs of water retention, and after upping her diuretics and even trying a new one and her STILL gaining weight, we've concluded that she really is just gaining real weight! Her doc said that as babies get healthier, they will often start to absorb their nutrients better and that's what he thinks is happening with her now. We switched Hope to another formula a few weeks ago as well and that could have had a lot to do with it since it's a very easily absorbed formula. But she really is heavier than Peyton now. She's 25 inches and 17 pounds! So crazy isn't it?

However, we are backing off on her calories now, because she really shouldn't be gaining THAT much weight and so we will see how that goes in a week or so.

Peyton is doing great as well. There's not really any new news with her. She's still healthy, eating well, eating more solids and very talkative. She's starting to teethe though, so she's always looking for something to bite on, even if it is the metal legs on our sofa table :) Oh yes, and she's learning to pull herself up onto objects. She's pretty good at it actually. Keeps a mama busy.

I hope you all enjoy your week.

September 6, 2009

2009-09-06T16:15:00.000-07:00

Cousin Neveah and Peyton being cute as ever
I don't know how I catch these shots, but I'm glad I do!
Classic Hope and Peyton on car rides and stroller walks... Peyton crashed out and Hope just sitting there looking around. I caught this pic of Hope right in the middle of her doing her new thing with her lips.

Grandma Becky and Peyton
Hope bein' sweet with Tara. Don't you love the new little vest outfits I got at Carters!?! I was so excited!
Great Grandma Shirley, Auntie Jeni, and Grandpa Jack with Hope
Sugglin in bed
Wow...has it really been a month? Time flies SO fast these days. Both of the girls are fantastic. Hope has been home for 8 weeks now and is about to beat her record!!! Go Hope! She was home for 2 months last time. She's been doing very well with staying healthy and happy. She's started to make more sounds and track her toys and play with her toys WAY better. Her range of motion in her neck is MUCH better. She is looking at her toys now and turning to look at things she wants to look at. She looks UP now and down. Those things we are still working on, but she is doing much better.

She still struggles with her tummy time. She hates it, and she still has a ways to go with her arm strength, but she is definately making progress. She is sitting up nicely with little help and her head control is nice.

We still NEEEEEDD prayers for her feeding. She still has the oral aversion and we are meeting with her doc Oct 2 to discuss a G-tube. At this point, it would be best for her, but I still pray that things will turn around.

Checked Hope's weight yesterday and she was gaining a little too much, so they might up her lasix again. They are trying to let her outgrow it, but can't, if she continues to need it. However, here's the funny part.....she was heavier than Peyton! She was 16 lbs 7 oz and Peyton was 16 lbs 5 oz! I guess the extra calories work, eh? Peyton also burns many more calories a day than Hope since she's so active. Hope is still shorter, though. She's 24.75 inches and Peyton is 27 inches.

Peyton is doing very well as well. She's sitting up on her own, moving from sitting to tummy, clapping, scooting all around the house, getting into EVERYTHING....oh yes....and even trying to throw tantrums when I tell her no. She's so sweet, though, and so fun.

She's eating more and more solids each week. She tried apples today and loved them.

I have felt so grateful lately to see the growth of both of the girls.... 10 1/2 months ago, I felt like the time would never come when both girls were doing so well. I can't believe they are almost ONE! I already have their birthday outfits picked out and they are SOOO cute! I can't wait! To have Hope home and healthy is so fun and we've loved the time we've had to bond with her. Now we just need to make it through this winter with out colds and that will be a huge success for Hope. Hand-sanitizer will be our best friend for a while, as it already has been.

Anyway, I hope you enjoy some of the new pics (I have videos coming as well, but my computer is being funny right now) We were able to go back to Tricities/ Hermiston and also the coast this past couple of weeks and the girls did great traveling. They got TONS of attention so that always helps.

August 4, 2009

2009-08-04T17:57:00.000-07:00

Miss Hope, Smiling at her daddy
Miss Peyton
The really love their daddy. All eyes are on him when wherever he is in the room.

Hope likes to play with her hands....this is good for developement

Hope is getting stronger each day. We work on tummy time as much as we can. It's a bit difficult, as she tends to spit up if her tummy is too full because of her reflux. She sleeps elevated still and we keep her elevated as much as we can.

We love baby smiles

She loves her daddy

She carries her glasses as a purse now-a-days

Peyton's little 'tude

She does this often....just picks up her arms like she's flying

I caught her posing or a picture, so I had to snap :)

Bananas!

"I want more!"

"Look! I can hold my own bottle now!

She doesn't exactly love her glasses yet....this tends to be where they end up and we are constantly re-adjusting them

Happy August all!

The summer goes by so fast doesn't it....well... I guess life just goes by fast.

I am happy to announce that Hope is STILL home!!!! Woohoo! We've made it THREE weeks now! I fell good about this time around. Hope is looking better than we've ever seen her. She is being followed more closely now than before as well. With her sat monitor and oxygen at home and her frequent doctor trips and having her electrolytes checked, it will be hard to miss anything. The frequency of her doctor visits does take up a lot of our time, but if it keeps her home, that's all that matters.

Hope is also starting to makes some progress in her development. She is trying to talk more and more each day and make sounds. She can roll to her side now. We've noticed that she is following sounds better and is watching toys and people better as well. She has a couple of favorite toys that she can reach out for now as well. We are working on her leg strength and tummy time. She is definitely getting stronger during tummy time. Her reflux hasn't been so great lately, though, so it's been hard to find as much time as we'd like for it since she still needs to be elevated often. Hope also likes to make little sounds with her lips as you can see on the video.

Hope saw her pulmonologist today and he has taken her off of her inhaler medication that she was using. One down, 4 to go!!!! He said that he would like to have her outgrow her lasix and see how that goes and we will wean her slowly off of her night-time/nap-time oxygen. It will just depend on how she responds to it.

Peyton is reaching a lot of her milestones as well. She is saying ba-ba- and MA MA!!!! I've heard a couple of Da's in there so I think da-da is next! Today she started to scoot herself forward. Until now, she's made due just rolling wherever she'd like, but today she started to scoot herself forward! She's eaten bananas and peas and rice cereal and she also just started holding her own bottle. She's very active now. She's definitely hit the stage where it's not as easy to just hold her in your lap when you go somewhere. Sadly, the swing no longer puts her to sleep :) She sits foward in it and licks the tray :) Peyton also likes to laugh. Most of the time we don't know what she's laughing at, but she does it anyway.

Peyton LOVES my phone. It can keep her entertained for a while. Well, actually, she likes basically anything she's not supposed to have, and anything that is not her own toys. If you're around kids enough then you know what I'm talking about.

Both girls are becoming more and more entertaining and fun. We absolutely love to see them hit their milestones and learn new things. They each have their own personalities that make our hearts melt everyday. We've absolutely loved having Hope home this three weeks. She is so precious and sweet. She is still having trouble with her eating and needs prayer for that.

I hope you all are staying cool and enjoy the pics and videos.

July 22, 2009

2009-07-23T22:53:00.000-07:00

Tape is coming off again but I had to post this pic cuz she's just so darn cute!!!
My Angel
My other Angel

I love it when we catch these kind of photos! hehe
Before the trip. PLEASE forgive the horrible tape jobs on the NG tubes in these pics. Hope kept sweating and the tape would come off and, of course, she'd then be able to pull it out...and did. And so this pic would be my next step to try and keep it in before super glue.....only kidding :)
Big smiles from Hope. Probably one of the first "big open mouth" smiles I've seen.
And this is after the trip. Hope wide awake and ready to keep going., and Peyton crashed out. Good thing the seats in the stroller recline!

Just wanted to upload a few more pics. We went on our first summer walk with both of the girls today. Hope has been on one other walk when she was home last, but this is her first one this summer and while she was actually awake! She had a blast! Peyton fell asleep and Hope was making cute sounds and kickin her feet the whole time. By the end, Peyton was sound asleep and Hope was still talkin' away and smiling. I think she likes it outside.

P.S. Please keep pray for Hope to start eating. She has an appt. with doctor tomorrow about weather or not to get a G-tube. No more surgeries would be NICE.

July 22, 2009

2009-07-22T15:08:00.000-07:00

Things are going well still at home! Hope has made it a week and two days already! She's still strong and looking great. It's sooo nice having both of the girls at home. We got to go to the park as a family on Monday. It was a joy to be together and just relax. In the evenings, when it's a little cooler and the sun is going down, the girls and I go out and enjoy the outside. They seem to like the different scenery. That is where some of these pics are from.

Hope is still not wanting to eat. I just hope she will come around soon. Our friends baby that I asked you to pray for is still needing lots of prayer, but she is doing better than they had hoped for. God is taking care of her and that's what she needs!

I hope you are all staying cool in the warm weather. Lots of love!

Peaceful
Dad and Peyton at the park
Hope on her first day home. She pulled her NG tube out within the first hour of being home so we got a couple of pics before we had to put the new one in.

Silly girl

Lovin' her feet :)

PLEASE PRAY FOR BABY DESTINY

2009-07-20T22:00:00.001-07:00

Friends and family.... I am writing to ask you to pray for Justin and I's friend's baby Destiny. She has a very similar story to Hope and her parents have become good friends and huge support for Justin and I while Hope has been in the hospital. Destiny is in life-threatening condition and needs a a touch from the Lord. The next couple of days are crucial. What the machines can't do right now, he CAN! Please pray that God will touch her whole body and that she will be able to breath on her own. Please also lift up her family as it is never easy to watch your baby struggle. Thank you so much. Love you all!

July 17th, 2009- Hope is home!

2009-07-17T01:11:00.001-07:00

Hope is home finally. She came home Monday and is doing very well. I keep very busy all day with both girls. I've been trying to learn Hope's medicines and machines and trying to get a nice routine down to help things flow a little easier. Hope came home with an NG tube again because she is not wanting to eat still. We DESPERATELY need your prayers! I feel so terrible for her sometimes and can understand why she's struggling. She's had tubes down her throat, and eye patch, glasses, NG tube up her nose, nasal cannula for oxygen, and tape on her cheeks to hold it all on. If I had that many things on my face, I'd be a little irritated too! Other than that setback, Hope is doing great.

Anyway, update ya'll later!

July 11, 2009

2009-07-11T23:33:00.000-07:00

Hello :)

Hope is NOT home yet :( So sad..... We are anxiously awaiting her return home. She's still doing great. She wasn't gaining the wait that they wanted her to gain and come to find out, they were getting behind and so she wasn't eating enough to gain. A little frustrating but hopefully they have it figured out now what she needs to grow. She gained good weight yesterday so we will see about tomorrow. The doctor this week is really great and has been very thorough in trying to look at Hope's full picture and to do whatever it takes to get her home and STAY home.

They good news is that she offered to let us take Hope home for a few hours tomorrow so she can be with us at home for a while. She really is ready to come home, but on Monday they want to take another chest x-ray so they have a baseline for when Hope leaves. We are also going to meet with the GI doctor incase Hope ever needs a G-tube put in. Hope's doctors (especially one of them) really thinks Hope will need a G-tube. I don't agree, personally. But we are going to give Hope two weeks to work on getting over her tongue sensitivity (she has this AGAIN) and then re-evaluate the possibility of a g-tube if she doesn't make any progress. I've seen Hope do very well at full feeds and have also watched her get past the tongue sensitivity twice before and I believe that she can do it again. We will just be patient and see how she does.

We REALLY REALLY need your prayers for this. Nutrition is very important for Hope and if she can't take her full feeds soon, that means being intubated again, for a 7th time, and another surgery (although very minor and fast). I have been working on the mouth/face massage techniques that the therapists have shown me, and that has worked in the past. So I am praying that they work again!

So, Hope should be home on Monday as long as nothing else comes up.

Peyton is doing great. Amongst all of the stress, she makes me laugh so hard sometimes. She makes the nurses laugh everyday by her funny face expressions and her very loud voice. She's great at getting your attention when she needs it! When she goes to yell to get your attention, she opens her mouth as WIDE as she can (and then some more) and yells out for a good long 10 seconds or so. It almost seems like she is trying to beat her record of the length of her yell each time. It's so cute.

Hope started talking a lot yesterday! She usually used to just make little whining noises, and yesterday we had our first baby talk conversation! I was tearing up; it was sooooo awesome! Ever since she's been talking quite a bit. Her voice seems like it is getting stronger as well. She is much more alert than she's ever been. She loves it when Peyton is next to her as well. We have "supervised" play time because Peyton tries to grab Hope's glasses and NG tube and is not very gentle yet. But Hope is all smiles when Peyton comes around. It's so fun when they are together!

She can't sit up completely yet, but she is very strong and not very much behind Peyton in that area yet. When she comes home, we will be working on tummy time as much as we can so she can build all of her muscles. We will also work on rolling over, turning her head farther to look at her toys, stretches, etc. She is 6 weeks out from her surgery now as well (I can't believe it's already been that long!), so we can lift her under her arms to help build her leg strength.

July 7, 2009

2009-07-07T21:38:00.000-07:00

Hello all...

Things have been going great with the Knight household. Hope is not home yet. She's still doing very well, but with all of the changes in formula, fortification, etc... she still hasn't gained any weight. Last night, she even lost 70 grams. Hope has a new doctor on this week and she doesn't feel comfortable sending her home until she has 2-3 days of good weight gain. She said that in the past couple of months she's sent relatively healthy babies home thinking they could figure the nutrition out as an out-patient and they ended up having to come back a week later because of dehydration and electrolyte problems.

Sooo, please pray that Hope will gain good weight. She is still not digesting some of her fats and has high triglycerides and we hope to figure out what is going on with that soon as well.

Peyton has been making her "b" sounds more and doing well with her baby talk. She's a very funny girl.

I laid Peyton down next to Hope today and Hope was smiling ear to ear. She was reaching out for her sister to try and play with her. It was sooo sweet.

Enjoy the rest of your week! I will update again once I hear anything about Hope's discharge.

P.S. I have two friends that have preemies. One just went home and the other has been home but came back to the hospital AGAIN today. Please keep them in your prayers that they will all get/stay healthy, get home, and STAY home. These miracles need miracles!!!

Love you all....

July 5, 2009 Good news!

2009-07-06T00:14:00.001-07:00

I don't know.....silly girl
Lookin' pretty in her Independence Day dress from Great Grandma Shoda. We will take more of both of the girls in the matching outfits in a couple of days when Hope comes home.
She was determined to get her WHOLE fooot in there....she got pretty darn close
The girls love their daddy to pieces.

Happy babies
Peyton eating rice cereal for the first time. She had fun and she looooved the spoon.
She wasn't feeling well this day. This is her sad face she had on all day. :(
Snugglin at the hospital

Great news! Hope is doing very well and she's ready to come home! We will hopefully tie up loose ends tomorrow and bring her home Tuesday and Wednesday at the latest. Over this weekend, Hope as taken a good turn with her feeding and is eating everything we offer her. The next step will be to get her to go from the NG feeds to eating all on her own. She could probably do this, but the doc didn't want to try yet because she just started eating on her own and with her tummy being so sensitive, he didn't want to over-do it. So, she'll be coming home with the NG tube in but she'll probably only have that for a couple of days until we transition her to full feeds. We just want her to come home and avoid any bugs that she could catch in the hospital.

Other than that, Hope is doing really well. She's happy, active, and more alert than ever before. We are still working to help her learn to play with toys and everything now that she has her glasses. She is definitely making good progress.

Please pray that Hope will be able to come home and STAY home this time! She'll come home with Lasix again, Dijoxin (sp) to help her heart pump, potassium for her feedings and that's it. All should be weaned off shortly. Needless to say, I have A LOT to do tomorrow. I have to schedule her NINE appointments that she'll need this month and get her prescriptions filled. I also have to meet with the people to show us how to use the oxygen at home and care for her incision.

July 1, 2009 (It's July ALREADY!!!!)

2009-07-01T13:34:00.000-07:00

Hope is doing quite a bit better. We've had a lot of troubles with her feedings. She's had trouble keeping her food down and eating as well. They think it could either be a bug or the methadone they've been trying to wean her off of. They are weaning her as much as they can, but they don't want to go cold turkey, because that can make your stomach upset as well.

Justin and I have been sick the past two days. We don't know what hit us, but we are a lot better today. Peyton didn't get sick so we were just trying to keep her from getting sick, and hoping that Hope didn't get anything either.

They have Hope on continuous feeds now and have changed her formula to Progestimil. The dietician said that there was too much fat in her stools and that she wasn't digesting her fats like she should. The Progestimil has different kinds of fats that are easier to digest. Hopefully once Hope comes off of the methadone and has the new formula, it will be the trick. Once we get over this hump, she can come home! We are praying for speedy recovery for her.

That's it for today!

June 24, 2009

2009-06-17T17:24:00.000-07:00

Hello again :)

A lot has gone on with Hope since the other day with her downturn. After her heart rate spiked into the 300s, they gave her some Amiodorone to bring her HR down. She was intubated for a few days and kept comfortable. She was extubated a couple of days ago, put on C-PAP for a day and now she is breathing well completely on her own!! I think the C-PAP really helped to open up her lungs. She is receiving breathing treatments a couple times a day as well. Hope is doing really great right now. They have taken her off of the Portagen (the icky tasting formula) and put her back on her regular formula. They have her on 24 calorie fortification now instead of 30. This means she will need to eat more volume in order to eat full feeds. She took a whole bottle today for me. Her feeding is the main thing that we will be working on now and hopefully she'll be home soon!

The doctors will still send her home on oxygen for nap time and bedtime as her treatment for her pulmonary hypertension. Since Hope had her SVT (high HR), she will need to be on Digoxin for a few months that will help make sure her heart is pumping effectively. That's really it for Hope. She's doing much better thanks to our Lord.

Our prayer requests right now are that Hope would become strong, eat all of her food by bottle, and be more comfortable.

Peyton is doing great as well. She started eating rice cereal yesterday! She's just eating it to taste for now. She's a little clumsy with feeding by a spoon. It was sooo cute watching her. She had food running down her face and made funny faces at the taste of the food. Overall, I think she liked it. She is not crawling yet, but she sure is moving all over the place! She's learned to roll and scoot to wherever she needs to go. She is also learning to be quite LOUD. :) She learning her voice, yet she hasn't quite learned her "inside voice." It's so silly. She's got a wonderful personality and keeps me entertained all day.

2009-06-17T08:23:00.000-07:00

Hello all

Hope took a downturn this morning. Her heartrate was spiking to 250 bpm which is called a super ventricular tachycardia. She was also having her troubles breathing, she was extremely dehydrated and she wasn't really peeing much, and her kindneys weren't functioning well. Within hours, she was intubated again and had a central line put in for IV access. They have been working on getting her hyrdated and taking a lot of tests to see if they can't pin point an infection. Hope's blood gas was in the 80s and is now down to 64 since they intubated her. Blood gas shows how much carbon dioxide is in her blood and that has a lot to do with how much she's breathing out. She normally has blood gasses in the 50s and 60s. She's producing more urine which is a sign that her kidneys are kicking in and she's becoming more hydrated. Hope is now on 35 % oxygen. The fast heart rate is one of the things that has dedinately improved but still needs to come down. The fast rate can be caused by dehydration as well. Once she gets hydrated, we will know how many of the problems were from that and work from there. We are also waiting on the results of the blood culture, urine test, and test for her lung fluid. Gratefully, things are pointing in the right direction.

More updates later

June 16, 2009

2009-06-16T23:05:00.000-07:00

Hello :)

So, update on Miss Hope......

We reached a hurdle a few days ago by getting her off of oxygen, except for naps and night time. It can be common for babies with lung issues to need help while they sleep because they just don't breath as deep and they need a little assistance. As soon as we got to that point....she stopped eating!!!!! We got the speech therapist and OT involved and it turned out Hope would just gag any time that anything touched her tongue. The therapists taught me how to do some facial and mouth massages to "desensitize" her tongue. So far, it has worked! She has finally started to eat and is doing great with her eating. She seems to have a lot of energy while eating and seems to have a big appetite.

BUT, as soon we overcame that hurdle, she came down with a 101-104 degree temperature and has been breathing harder and faster. Yeah, tell me about it... can we ever go home????? This started yesterday, and they don't know what is causing her fever yet. They assume her breathing issues are being caused from her fever, but they don't know what is causing the fever. Their best guess is that it may be an infection from her heart surgery incision. She has had a lot of diarrhea from the antibiotics that she's been on, and so there is also a small chance that she could have developed a urinary tract infection. She has a horrible diaper rash that looks really painful. I feel SO bad for her because she just looks so uncomfortable. She also has had to be back on oxygen full time :( Hopefully, once this infection goes away, she'll be back off.

We are still waiting to hear how her blood work comes back and her culture from her incision. We will hopefully know more tomorrow evening. We have yet to ever know why Hope gets a fever, so I'm not holding my breath.

It gets hard sometimes to look at the whole picture. The whole picture with Hope is good, because she's made a lot of progress in her 8 months of life. However, each day seems so hard sometimes because it seems like we jump over one hurdle and then another one comes along. Each day I feel like my faith, strength, and patience is being tested and stretched. When I think I have nothing left to give..... I somehow make it through another day. Almost every day I think of that footprints in the sand poem and can TOTALLY relate. I feel just like the person in that poem. I'm completely running on God's grace, now, and every bit of strength I have left in me is HIS!

I just can't wait until Hope comes home and is with us! She's such a sweet and wonderful little girl and I am so excited to have her with us all the time...... again.

I always write about Hope, lately, because there is a lot going on in her little life, but Peyton is doing great still! She is still soooo funny! She is moving around a lot and really finding her voice. She's so close to sitting up all by herself. She has a lot of strength supporting herself from falling forward or backwards, and does fine with that; but she still doesn't catch herself from falling to the side. We sat for a long time last night with her just playing with her toys in front of her. She's such a big girl. She's really into the people she's around and watches them closely.

I haven't got her weight since her last appt, but Hope is 12 lbs 6.23 lbs now!

Anyway, I will update more later.

2009-06-09T18:55:00.000-07:00

Hey all!

Hope is still doing well. She has all of her tubes out now. They just took the ones that drain her lungs out today. She also has all of her IV's out. We tried taking her off of oxygen today and she did well except when she was sleeping. This is common for babies with lung disease or hypertension because the are not taking as deep of breaths. She may get better within the next few days, but if she doesn't, she will likely go home on oxygen while she sleeps. It would be just a tiny bit of oxygen.

Hope's struggles, right now, are her feedings. She took 3 great bottles for me yesterday, but since last night, she doesn't seem interesting in eating at all. She's not on as many meds now that she's out on the floor, so this could be due to a sore throat from being intubated, sick tummy, reflux, etc. We are just going to give her a few days to get used to being of medications and heal some more, and hopefully she will get back to feeding again.

Hope's chylothorax (the fluid I talked about under lungs) has diminished. She will still need to stay on the special, low fat formula for a few weeks. It looks like the formula has helped the high triglycerides that she's always had, so she may just stay on the formula long term. The nutritionist will evaluate her a month or so after she gets discharged.

With the combination of a healed heart and glasses helping her to have more energy and vision, Hope has become a SMILE MACHINE!!! It's SO fun! She's pretty happy and loves when we make funny noises or pinch her cheeks. She's finally responding to use which is awesome.

That's pretty much it for now. I would expect Hope to be close to coming home within a week or so. Hopefully all will continue to go well! Enjoy your week :)

June 4, 2009

2009-06-04T22:52:00.000-07:00

Hello :)

Hope is doing very well still! Yay! The nurses were able to extubate Hope today and she's down to 1.5 liters of 40 % oxygen. She still has quite a few IV's and tubes in, but that is to be expected and they will slowly start to take them away as she gets better each day. Hope is off of her blood pressure medication and is just on Tylenol for pain. She did very well weaning off of her pain medication and didn't really have any noticeable withdrawal sypmtoms.

Hope has had some fluid build up under her lungs with chylorthorax. It's pretty hard for me to explain. Basically the fluid that drains from under her lungs is normal right now, which is why they have the draining tubes in her, and the substance should be red. However, it's a cloudy red which usually means it has chylorthorax. They tested her for it and it was positive. Her drainage in her left lung has gone down significantly and it's gone in her right lung. They are not very worried about it and if it doesn't subside, she may have to be on a special formula for a couple of months and they may have to keep the drainage tubes there for a little longer. I won't try to explain any more considering I'll probably give you the wrong info :) But feel free to look it up if you are wondering about it.

I was able to hold Hope today and feed her. She was VERY hungry when she woke up, so we tried feeding her. She chowed down on her food, but then threw it all up. We tried again a few hours later and the same thing happened. So they put the NG tube in and are going to use that for a while. The nurse also found a lot of air in her tummy tonight which could have had something to do with her throwing up, along with the medications Hope is on. I was pleased to see Hope do well with her feeding (energy-wise) though.

Anyway, that's it for post-surgery updates for now. Have a great Friday!

June 2, 2009

2009-06-02T22:01:00.000-07:00

Hope is still doing great. She's still intubated and the doc things that she'll probably stay intubated for a couple more days. They will watch her blood gasses and chest x-rays each day, and those, along with her oxygen saturations and numbers on the ventilator machine, will help them determine weather or not she's ready to be extubated. Her cardiologist wants to remain on the cautious side and not push her too hard. She's on 40 percent oxygen now (room air is 21%). Her blood pressure is great. They were able to take her off of one of her two blood pressure medications and also take out one of the tubes that they use to drain the blood.

We are pleased to see Hope doing well, and are continuing to pray that she heals fast and easy.

I hope you all are having a great week! Enjoy the sun while you can :)

Post-Surgery Updates

2009-06-01T19:58:00.000-07:00

Hope is all finished with surgery. They took her in today around 7:30 and had her back in her room for recover around one. She's doing great so far! They had her on a medicine that helps heart surgery patients with their blood pressure and she didn't need it, so they stopped that medicine. They were able to take her all the way down to 35% oxygen by the time we left this afternoon. Everything seemed to be going well and smooth.

One of the questions during surgery was weather or not the surgeons would be able to close her chest all the way because usually the lungs can swell and create too much pressure on the heart. Since she already had lung issues, they thought they would probably need to do this, but they didn't! We were excited, because although they do this often, it obviously increases the risk for infection as well as pushes the amount of time out that she would have needed to be intubated. They also would have had to paralyze her temporarily. So we were glad to know they were able to close her up!

There were no troubles during surgery, they were able to get Hope on and off the bypass machine with no issues. They closed her VSD and the hole in her upper chamber was already closed, so they didn't have to do anything with that.

The goal for tonight is to keep things as quiet as possible for her and let her sleep as much as possible. Of course she is on medication to help her with that. They next few days will just be monitoring her pressures, managing her pain, try to make sure she's not retaining to much fluid in her lungs or body, letting her rest, and eventually they will start to pull out all of tubes that they still have in her to drain extra fluids.

We are so impressed with the doctors and surgeons and with baby Hope. We are thankful to know that God is watching over Hope and that He answers our prayers. Thank you for your prayers and support. I will update more tomorrow.

Surgery is done!

2009-06-01T11:44:00.000-07:00

Repair is finished... they are doing the finishing touches now in the OR and she should be moving her to recovery within the hour.

June 1, 2009- Hope's surgery update

2009-06-01T09:19:00.000-07:00

Well folks, baby Hope is in the OR. So far, they've just been getting everything prepared. The preparation part of the surgery takes a while. I will keep updates going on today as we get more information.

If there's ever a time in my life when I've had to trust the Lord, it's now. I've been thinking a lot about trust lately as my church has Dave Ramsey, a financial guru, talking about finances. God asks us to trust Him with everything, the big and the small. I keep playing over in my mind what I said to the Lord when we first found out the girls' issues, "Lord, you know I have enough faith to handle this." I kind of hear Him asking me, now, "but do you TRUST me." At this point, I would consider this one of the hardest times of my life, but as I learn to let go of what is not even mine to begin with, God is able to show me who how strong He can be, be the peace that I need, and comfort me.

Anyway, computer is dying, updates later!

May 30, 2009

2009-05-30T19:38:00.000-07:00

Sportin' her summer capris
Posing in their matching summer outfits from Diane
Gotta love Peyton's facial expressions
Looks like Peyton's leg tastes good. Either that or Hope is trying to bite it.

Her smile is SO cute. I just love love love it.
Peyton is reading us a book

Hope is peeking out through her jungle of play mat toys
More great facial expressions
Beauty
...and more....expressions....This is her "I'm concerned look." She'll tell you all about her concerns as well. So cute.
They share fingers
Peyton being silly
Tired
Relaxing

Sometimes Hope gets a little bit bit annoyed with sister's non-gentle hands

Hope and her glasses!!! They will be a little big for a couple of months, but she can see!

Of course, as things ALWAYS seem to do, the Monday surgery is unsure right now. Hope had a fever of 100 and something cultured on her labs. This could mean something like a bacterial infection or something of the sort. I'm not sure what yet. The cardiologist will make the last call. All I know is God writes the story of Hope's days, and He guides the path that she follows. If she's not meant to have surgery on Monday, she won't, and if she is, she will. Hope has definitely been prayed for more than any person I know, and I have to believe God hears every one of those prayers and keeps watch over her. I will keep you all updated on the decisions. If it's not Monday, they will more than likely extubate (sp?) her and shoot for a couple of weeks from now when she's a little stronger.

May 29, 2009

2009-05-29T23:55:00.000-07:00

Hope is finished with her cardiac cath and it looks like they want to do the heart surgery to close her VSD on Monday. When Hope was just breathing regular room air, the doc said her the shunting of blood in hear heart was fairly balanced and not a problem, but when they added oxygen or nitric (does the same thing as hypertension medicine), the blood shunting across her VSD increased. This, of course, causes problems in her lungs as well. So really, the oxygen is kind of a double-edged sword for her right now since it is keeping her alive, but making her heart worse at the same time. Since she's been having such a hard time coming off of oxygen, and actually going up on it, they feel it's best to fix her VSD. Hope's cardiologist has been correct all along in that it is mainly her lungs that are causing her problems, and her heart is not so bad. But if it's not fixed, then any time she gets a little bug and has to go on oxygen, we would have to go through the whole this whole thing over again. And since there are no guarantees that she won't catch a bug or that her VSD will fully close, it must be closed. We hope that this will help some of her symptoms to clear up, but we cannot be sure that it will, since she has so many lung issues accompanying the heart. We are glad that her heart will be fixed, but also worried about the surgery. I think it just finally hit me tonight how big of a surgery this is. I am comforted by the fact that the surgeon does these surgeries every day and it is a fairly straight forward surgery, but I still worry about Hope catching an infection after surgery.

During the surgery, they will have to put her on the heart-lung bypass machine, cut from the bottom of her neck to the top of her tummy, break her ribs basically, fix the hole, and then when she is done, she will have to stay opened up for 2-3 days until the swelling of her organs go down. This is the point where we will Hope she does not get any infection.

I'm super tired and it's super late. I will update more later.

May 30, 2009

2009-05-29T09:27:00.000-07:00

Hello all :)

Hope is still in the hospital. She's been there almost two weeks now. Still, all of her virus/bacteria tests have come back negative which is good. Her white blood cell count is down. They have her on 4 liters of 36 % oxygen. They've just been having a really hard time getting her to stop retaining fluids. The other day, the oral lasix wasn't really working (she didn't have wet diapers), and so they had to give her the lasix through the IV. It did seem to help.

Today, Hope is going to have a procedure done called a cardiac catheter. They will run a catheter up on of Hope's veins that will more accurately be able to test the exact shunting of blood that is shunting from one side of the heart to the other (which is not supposed to be happening, but is, because of her VSD). It will also test the pressure that is going to her lungs. They will also see how her heart and lungs react to different kinds of therapies like oxygen, and a certain gas that does the same thing as pulmonary hypertension medicine does. This test is much more accurate than the echos that they've been doing. Depending on what they find, we may have some answers, finally, on whether or not to do the surgery.

This procedure is a fairly quick and simple one; however, Hope will have to be intubated and put to sleep for it. The reason for holding off in it thus far, is that she was maintaining well, and we were trying to avoid having her intubated again and put to sleep. It's to the point now where there really is no choice because the docs are at a loss. The docs all thing it's the heart, the cardiologist doesn't, and noone really seems to agree, or even know!

It's the most frustrating thing as a parent to have your baby suffering and the docs to tell you they don't know exactly what is causing her issues. I thought things would get easier from the time they were born, but right now it seems like they are getting harder. We are exhausted, frustrated, and needing a BIG dose of JESUS. I seriously don't know how people do this without him.

My principal at work is amazing and she requested shared leave for me at work. If that goes through, I will be able to be finished with the year and focus on the girls. This will be a huge, huge, lifesaver for me.

Anyway, I'm off to go to the hospital. Peyton is doing very well. She is getting big, she is very observant and loves to grab things and touch them. She loves touching people's faces, and even clawing them :) She is the easiest baby I've ever seen. She sleeps from 9-6, wakes up, eats, and then goes back to bed until 9 or 10. She's calm, very happy, and pretty much just goes with the flow. She's so sweet and fun to play with.

Oh yes, and Hope did get glasses! I will post a pic as soon as a get a chance. She's sooooo cute! We had to get them a little big because she was basically outgrowing the smaller size and we would have had to buy another pair in a couple of months. But it looks like she is seeing things. It's so great that she can see!

Anyway, I will update on Hope's procedure later!

April 21, 2009

2009-05-21T23:16:00.000-07:00

Hello all,

Hope is doing much better today. She graduated from the PICU to the Peds floor. This room has a shower and a bed, so I will be staying with her over my three day weekend. She is down to .25 liters of room-air oxygen, which is basically nothing. She's satting great and at almost 3 ounces for me from a bottle tonight. They are trying to give her 3 ounces every three hours and she's been close the past couple of feeds. They gavage the rest if there's left over. Hope was very active and acting completely normal tonight. She still did have a wet cough, which will hopefully go away SOON! I heard that her VSD has closed a little more than it was for the last echo. The cardiologist still can't rule out surgery, but still feels like the VSD will close on it's own, and doesn't want to rush surgery. Before Hope goes home, we will meet with the gastroenterologist and figure out what is going on digestively, if anything. Hope was a little cranky tonight, but I think she was glad to finally get to eat a full feed.

I was thinking today that this is Hope's 7th home. 7th home in 7 months! Can you believe they are already 7 months! The peds floor is quite different from the NICU. Well, I must get to bed, but I would like to ask everyone to pray for our new baby friend Destiny and her family. She is the one we met last night with our same story. She's having a rough time right now and needs our faith-filled prayers. Thank you!

May 20, 2009

2009-05-20T22:32:00.000-07:00

Hello all,

I just wanted to update you all on Miss Hope. She is still in the PICU. Her oxygen has been moved from 40% to 3% and her flow from 6 liters to 4 liters. They tried to move her to 2 liters this morning, but she was breathing little fast, so they moved her back up to 4. Her fever is off and on; however, it does go away on it's own with out medicine. The doctor thinks she'll get down to 2 liters within the next day or so, and once she does, he'd like to try feeding her by mouth again. He also thinks that she should "graduate" from the PICU by tomorrow and go to the Peds Ward. This will be nice because the room will have a bed and a shower, but the nurses are spread a little more thin.

The plan of action is to get her better, then we will talk with the gastroenterologist and the cardiologist and come up with a plan for what to do next.

Anyway, just thought I'd share the CRAZY thing that happened tonight...I have a friend that I talk to that has an extremely similar story to, who also lives in Vancouver. We talk frequently, share our stories, uplift each other, and it's awesome. She's been very supportive....ANYWAY, I met our family twin tonight. The nurse and social worker asked us if we would want to meet a family with a similar story to ours. I said yes, but I didn't realize how similar...Basically, we have the same exact pregnancy and everything story. The only difference is that her daughter's reflux is much worse and she doesn't have the VSD in her heart.

Get this, her twin girls were born at 29 weeks, 1 lb and 3 lbs just like Hope. Her daughter, named "Destiny" was small for the same reason as Hope...two vessel umbilical cord, IUGR because her umbilical vein was placed way off of placenta. They live in Vancouver like we do, and their names start with a C and a J like ours. They went to the same docs as we did, were told that their baby had a 99/100 % chance of not making it, and they did, and we delivered at the same hospital ONE DAY APART. Both of the girls have pulmonary hypertension and reflux problems. SO WIERD, eh??? We didn't get long to talk, but it's still so crazy to me!!! I don't know how we missed each other at St. V's, but well, we both ended up at Emanuel at the same time, next door to each other. We both started out at Salmon Creek and were transported as well. Sooooooo wierd!!! God has placed some great people in my life to make me feel like I'm not going through this alone. Not only has he given me AMAZING, INCREDIBLE family that helps out and supports us any way that they can, he has given me other people that have gone through the same thing, and understand exactly what I feel from day to day. It's really awesome.

Anyway, these eyes are getting tired. Thank you for your continued prayers, we are sooooo sooooo fortunate and thankful, that Hope has made it through this.

Update May 18, 2009

2009-05-18T14:27:00.000-07:00

Hello again,

Hope is maintaining well on her 5-6 liters of flow and 35-40 % oxygen. That is a lot of respiratory support for Hope, but it is still less than the C-Pap or being intubated. We really Hope she won't get to the point where she needs that. So far, the cultures have come back and they've found nothing. That is good, however, they can only really test for about 5% of the different viruses that are out there. They've ruled out the main ones though. She is going to be seen by a gastroenterologist who will take a look at any issues she may be having with reflux, aspiration, feeding, digestion etc. Personally, I think she's had some issues in this area, so I hope they will be able to figure something out.

We haven't spoken to the cardiologist ourselves yet, but the doctor said that he's fairly certain that her heart will need to be repaired surgically. He also said that she has an aortic valve that is in the wrong place that may need repaired as well. I will get more information on that when I talk to the cardiologist so that I can explain it better. At this point, the doctor doesn't see it needing to be repaired right now, so we will hopefully be able to wait a little and get her pneumonia taken care of.

Hope's fever is still down, which is great. I also got to feed her a couple of ounces. She chugged her food, but was working a little hard to breathe afterward.

Many of you have told me that you are praying, and I am so grateful for that. I know that God has a wonderful plan for Hope, and that He holds her in His hands. We continue to trust in the Lord that He has a plan and is in control.

So, that's it for now; I will keep updating as soon as we get more info.

:(

2009-05-18T07:49:00.000-07:00

Hello all :) I would just like to ask for you all to join us in prayer for Hope. She is back in the hospital with pneumonia. We don't know the exact cause of it yet, whether it be her heart, aspiration, or a cold. As I told you before, Hope's feeds have gone down the past few weeks. The reason for that is still unknown. Other than her feeds, she really hasn't had any other symptoms that have worried us. The past couple of days, though, Hope's work of breathing has increased and she's been breathing a little bit faster than normal. Yesterday, it seemed to have gotten a little bit worse and she felt warm. I took her temp. and it was 102.2. I also took her respiratory and heart rate. She was breathing 115-120 breaths per minute and her HR was 160-200 bmp. NOT GOOD. So I called the nurses hotline (because it's Sunday and this stuff ALWAYS happens on a SUNDAY when the doctor's office is closed!) and she said Hope needed to be seen. When we got to the hospital, Hope's oxygen saturation levels were in the high 60's. They should be at least in the 90's. So, needless to say, 60's are not good! She was a little pale, but strangely, she wasn't turning blue around her lips like she used to. I just noticed her fingernails were a little blue.

Once she got into a room, they gave her some oxygen which helped right away, as well as some Albeuderol which is a breathing treatment that helps open up the air sacks in the lungs. They took an x-ray of her chest, suctioned out her mouth and nose, ran labs, urine samples etc. They found the pneumonia in her lungs right away. They started her on some antibiotics, and transported her to Emanuel. I left the hospital around 2 am last night and they were still waiting to get all of the labs back. They said her sodium was high. The only reason for that, at this point, would be dehydration, probably from her small feeds.

When I left the hospital, they had Hope on 40 percent oxygen and 6 liters of flow. That is quite a bit higher than she's ever been on before. I think the highest flow she's ever been on is 3 liters. It's high, but we are fortunate that she didn't have to be intubated again. The nurses said it can take about 24 hours for the antibiotics to start doing their work, so it's possible for Hope to get a little worse before she gets better. I pray this isn't the case, and they start to work fast.

I'm honestly baffled at how easily Hope got sick, if this is a viral or bacterial issue. Other than the doctor every once in a while, Hope doesn't go anywhere, and she hasn't been around anyone that is sick that we know of. We've shielded her from the world, and wash our hands constantly, and yet she gets sick.

The doctors left a message for Hope's cardiologist and more than likely, he will see her soon.

Well, that's all I have for now. I will keep you update.

Thank you for your prayers!

April 10, 2009

2009-05-10T14:40:00.001-07:00

Stuck again

Oh the joys of motherhood....surprisingly, this was Peyton's doing
Hope's smoochin'

Happy Mother's Day to all of you mothers and mothers-to-be! This is my first Mother's Day and it's been great. Justin has surprised me with a few things already. He had to work so I am at home with the girls. I did get to go to church this morning and it was wonderful as always. They did baby dedications which they do every Mother's Day. We will dedicate the girls next year. We still don't want to take the girls out anywhere, especially Hope, until her heart and lungs are in the clear.

We ordered Hope's glasses yesterday. You can check them out at solobambini.com. We decided to go with the light pink. There are not a lot of options for baby glasses, but these ones seem like they are the most comfortable and functional for a baby. Well, and the cutest.

Since Hope's feeds have gone down, the doc upped her diuretics and we changed back to the Prilosec for her reflux. That was yesterday, and she seems better already. It's 2:45pm and she's had 9 ounces and that's about what she was eating in an entire day! Hopefully that will be the cure for now.

Anyway, here are a couple more pics. Have a great week!

May 6, 2009

2009-05-06T11:59:00.000-07:00

Can you tell which one is which?

Holding hands again
Is it me, or does Peyton glare a lot when I take pictures of her?
We love Peyton's smiles!....
and Hope's too!
Do all babies do this? She always ends up at the side of her crib.
RIP Exer-saucer. We can no longer use this per therapist :(
RIP Exer-saucer x 2
How did she get the mobile down! It's up high! This was the day after she got the hanger around her waist. But the mobile????

One of my favorite shirts :)

Peyton takes care of her sis
My realization that I don't have preemies anymore that just sit there and sleep. How she got this, I have no clue. This was with-in two minutes!!!
I love their pretty little dresses!
Hello all :) Yes, I know, I officially get an F for updates :) Although, there really haven't been much until recenently,. Hope and Peyton had their developmental screenings, nutrition appointments, and Hope had another eye exam. They also met with the neurodevelopmental pediatrician (all at once) Where to begin?

They all three were very impressed with the girls' progress. They were very happy about their weight gain and height/weight ration. They track the girls on the growth scale on the "Very Low Birth Weight" (VLBW) scale. This compares them to other children born at very low weights. They also track them for their corrected age, not actual age, which is 3 months 22 days, today. Hope is 10 lbs, 2 oz, 21 inches, and in the 50-75 % range in the weight to height ratio. Her weight is in the 10 % range, and her lenth is in the 3 % ration. Peyton was 12 lbs 5.5 oz, 24 1/4 inches and she is in the 50th percentile for weight, 75th percentile for height, and the 10-25 % range for height/weight ratio. In comparison to non-VLBW children, they are still making good progress towards that chart :)

Hope has been having a hard time with her feeds the past week or so, so we are changing her reflux medicine again and seeing how that goes. If it doesn't help, our doc will contact the cardiologist for a re-eval. Hope has still been doing well with her feeds overall, but her weight has slowed down, because her feeds have slowed down. She tires easily when she eats and her work of breathing increases, and the pediatrician is thinking about her heart again, because if it was just a lung issue, he would expect her feeds to be getting better, quicker. So it's just something that we will keep an eye on for the next 2-3 weeks. We are still very proud of Hope for her great progress.

As far as development goes with motor skills, following things with their eyes, verbal skills, etc. They will both be receiving therapy. I was a little concerned about how many things Hope was doing that Peyton was not, but after our appointment with the specialists, they explained that reflux, heart disease, lung disease, vision problems, and torticollis (this stiffness in her neck) all affect development because of the lack of vision, strength, energy etc. They were very impressed with Hope's head control and muscle tone, and they think there is a lot of stuff that the therapist can do that will help her out.

Hope also saw the eye doc today and she is getting glasses! Yes, glasses. She is very near sighted. The doctor held up the lens to my eye to show me what she sees and I basically couldn't see anything far away, but when the doctor got closer to my face, I could see him just fine. He said that a lazy eye is common in children who are near-sighted and so having glasses to correct the sight may also help the lazy eye. He also put a lens over my eye to show what it would look like with glasses, and woah, what a change! Everything was crystal clear! This explains why Hope doesn't really make a lot of eye contact with you, play with her toys etc, because she can't see them. When things are closer, she does better. So anyway, he said most children her age take a couple weeks to get used to them but eventually get used to them. He said it is possible to make her less near-sighted as time goes on but doesn't suspect the near- sightedness will completely go away. He said if it were to get worse, there are contacts that can last for two weeks that can be put in for young kids, and as an adult, laser surgery can help. But I'm very glad that she will finally be able to see! He also said the retinas are still attached which is really good. We will also be patching for just one hour a day once the glasses get here.

They said Peyton is doing really well. They said other than her tendency to bring her arms back, instead of forward (which is easily fixed with a little practice), she is at or above the expectations that they would have for her. She will start being introduced to rice cereal late June.

The girls will be on formula until they are 1 year old, and foods/cereals will be introduced on top of that as they get older.

We have some stretches and exercises that we will start with the girls to help their neck and shoulder movement and strength until the therapists are set up.

2009-04-28T19:32:00.000-07:00

Hello all :) I know it's been a while. Life has been a bit hectic since I've been back to work. The girls are doing great. They are 10 and 12 lbs. They both had one of their developmental screenings today. It wasn't the extremely detailed one, but they said Peyton is right on track for her adjusted age (4 months) and that Hope still has a way to go, which was not a surprise. Next week they have their neurodevelopment screening; Hope has another eye check up nutrition appt. Both girls are lots of fun and keeping us all busy. We've had some great help from family which has kept us sane, for sure. Peyton has started to teeth. She's a little crankier than usual. I have a lot of pics that I will post soon! Peyton is waking up, though, so I must go!

April 17, 2009

2009-04-17T20:48:00.001-07:00

Girls are doing great still. They had a peds appointment today and Hope was 9 1/2 lbs and Peyton was 11 1/2 lbs! The girls are getting so big, so fast! Peyton is moving around a lot. When she lays on her play mat, she's learned to twist and turn and scoot herself around to face different directions. Hope is still gaining good weight, at a 2 lbs a month. On the growth chart, both of the girls are getting a lot closer to the average weights for children. The docs look to see if their growth is going in an upward motion towards the normal range scale. Peyton is super close to being at the 3rd percentile, and Hope is moving in that direction as well.

The doc said that we are fine to travel with the girls now, so we Hope to get back home within the next month or two. We miss home! Anyway, that's it for now! Have a great weekend :)

April 12, 2009 Easter

2009-04-12T16:16:00.000-07:00

Peyton looks like she's about to say something very serious :)

Hope looks so excited about having Peyton flail her arms in her face
Sometimes they eat eachother's hands. I don't quite think they know they are not eating their own hands yet.
Hope grabbing Peyton's ear. Getting her back for clobbering her face :)
"Okay, girls, now go for a serious pose"
Holding hands

"Why?"
Smiles from Hope

More hands in the face.

The hat was a little big for Hope
Peyton being cute
Peyton
Dad can always get their attention
Fallin' asleep with dad

Happy Easter! Today has been a great day. We still are not taking the girls anywhere, so we sadly missed church today. I have heard that things are going great and there have been a lot of baptisms and salvations...SO awesome! Anyway, no real updates, but I'm posting some pics of the girls in their Easter dresses. I can't remember who gave these to us (so sorry!), but whoever did, good job with the sizing and picking them out! They were so cute in their frilly little dresses. I think I snapped a million pictures before the camera went dead. Enjoy :)

April 10, 2009

2009-04-10T16:11:00.000-07:00

Grandpa is already giving her candy ;)

They were holding hands, so cute
Peyton playing with her toys
Hope

Hope

Peyton is glaring at the camera!!!
Size difference... However, they are wearing the same outfit, same size.

Hello, Happy Good Friday everyone! I hope you all had a wonderful Spring Break (if you got one) and have been able to enjoy some of this nice weather that we are having. Easter is approaching, and it's always a good time for me to reflect on what Christ has done for me. He's done so much for us this year it's unexplainable. I feel so grateful to serve a God that LIVES, and is still at work every day. In light of some of the current issues going on economically and politically, this Easter, I hope we can be reminded of God's mightiness.

Anywho, the girls are doing wonderful. Hope has been home for 2 1/2 weeks now and she is doing phenomenal. She is eating well, sleeping well, and growing well. She is a little over 9 lbs now, and gaining about 1/2 a pound a week. She eats 18 oz a day now and her minimum feeds are supposed to go up one ounce each week. She is starting to become a little more alert and active. Her personality is starting to show now a little more, and she is smiling more. Her eyes are alligning a lot more than they used to. Hope is even starting to look a lot more like Peyton. I've had to take a double-take a couple of times. The outgrowing of her diuretics seems to be going well. It's been about a month since they have upped her dose and she is handling it very well. It's really exciting to have her home with us finally getting to a healthier state.

Peyton is doing great as well. She is a little over 11 lbs. She has rolled over three times now and is quite active. Her personality is hilarious and makes us laugh all the time. She is reaching out for her toys now and can hold onto small objects now for a longer period of time. She eats A LOT of food it seems. She is great about communicating when she is hungry and when she is not. So is Hope. Peyton is a great sleeper. She has been going to bed around 10 and waking up around 7. Hope doesn't have as strict of a routine, but she usually sleeps for at least six hours at night.

I went back to work this week It was wonderful to be back around people and the kids, but I do miss the girls quite a bit. Justin is at home with them this week and his parents came up and helped out as well. Justin is a great dad and does really well with the girls.

Well, that's about it for now. I hope you enjoy the new pics. Have a great weekend and a Happy Easter!!!

March 30, 2009

2009-03-30T20:23:00.000-07:00

Peyton found Sponge Bob and I guess she thinks he's funny :)

I have finally found some time to upload pics! Yay! So, here are some cute ones. As you can see, it's not hard to get Peyton to smile. She is a VERY happy baby. Her personality is really coming out. Her facial expression and demeanor are so funny. She is starting to notice Hope more now. She reaches out to touch her and is really checkin' out her clothes when she can. She is learning how to touch the things that she sees. It started out with just our face and shirt, and now she has learned to touch the toys on her swing and play mat.

As for Hope, she is doing very well at home! We've made it well past the three day mark this time and she is doing fabulous. She is eating well still and seems very comfortable. They still decided not to up her diuretics and she seems to be doing great with that. We still have to patch her eye for two hours a day while she is awake. It's been a bit challenging to do that because she tends to fall asleep once we put it on. I don't think she likes it much :( So it tends to have to be on most of her waking hours just to get the two hours on. The eye doctor said that at four months of age (corrected) babys tend to finish up aligning their vision, so the hope is that we can keep the patch on for the next month or so, and hopefully fix it by the time she is 4 months. Hope also saw the nutritionist/feeding therapist today. The therapist was very excited because Hope has gained 6 ounces in the past 5 days. The goal is for her to gain at least an ounce a day, so she is right on target. She would like to keep Hope on the 30 calorie fortification for one more month, and as long as she continues good weight gain, she thinks we will be able to take her down on the forticiation. For those of you who don't understand the 30 cal fortification- regular breastmilk is 22 calories per ounce. So the 30 cal means that they fortify it so that there is 30 cals per ounce. That means for she gets around 120-130 extra calories per day right now.

I am loving having Hope at home. I'm getting a routine down and it's been fairly easy to have both of them home. I am fortunate to have babies that don't cry a whole lot unless hungry. Well, Hope is calling my name :) More updates later!

March 26, 2009

2009-03-26T23:26:00.000-07:00

Hope has made it through her first day! She went to ped and cardiologist today. Both said she looked good. She is 8 lbs now. Peyton is 10 lbs 5 oz. The cardiologist said that surgery is not completely ruled out yet, but that since she is doing well, he still suspects that she won't need it. I also learned that if it doesn't close, and she is maintaining well, she won't necessarily need surgery. It will all be about how how well she is and how strong she is. There is also another type of pressure to the lungs (sorry for the lack of explanation as I don't quite understand it myself) but the "#" has to be under 30 to be safe and not cause any long term damage to the lungs and hers is right around 30. So that's good. I think if that number is too high, then the possibility of surgery goes up. Oh yes, and her heart size also hasn't grown. So that's good. Today wasn't AS hard as the last time Hope came home, but needless to say, I'm quite tired and ready for bed! It's quite different having two babies instead of one. Luckily they are easier to feed now since Hope doesn't have the G-Tube. Anyway, I intend to post pics but haven't had the time to upload them. I should have a few more up within the next couple of days.

Anyway, time for me to hit the sack. More updates later!

March 26, 2009

2009-03-26T00:53:00.000-07:00

Hope is home! We got home this evening around 6 and things have been going well. She hasn't slept AT ALL!! I think she's just trying to get used to this new atmosphere or something. She's in her swing now and fighting her sleep. She keeps dozing off and the next thing you know, she's wide awake again. She's eaten twice, caught up on her meds, and got a bath. Hope, so far, does not like baths. Hence, the lack of cute pictures :) Anyway, I'll update more later. Thanks for the prayers!

March 22, 2009

2009-03-22T18:49:00.000-07:00

Remember when she used to float on this scale???
Hope didn't come home today. She failed her car seat exam again this morning. Her work of breathing is a little harder and she has had some pretty high and some pretty low temperatures during the past few days. The doctor was uncertain why she would fail her test and so she thought it would be be best to keep her and run tests to make sure she's not sick again. Her sats have been a little lower than they want as well so the doc mentioned maybe needing a little oxygen again. Hopefully not!!! Her reflux has also been a big problem and she thinks there is another medication that will help Hope more than the stuff she is on now. They did an x-ray of Hope's lungs and there was a little fluid in them, but nothing the Dr. was worried about. She is going to have the cardiologist do another echo of Hope's heart tomorrow instead of Thursday as well. They may go up on diuretics depending on what he thinks. So, it will probably be Tuesday or Wednesday now. Everyone who has been through this told me about how back and forth things are, so this doesn't surprise me at all. Please pray that all of this can get figured out and Hope can make it home soon and get better!

She is getting so big. She is even outgrowing her newborn clothes and wearing some 0-3 month clothes! It's still hard for me to wrap my mind around her being "too big" for anything. The gap between Hope and Peyton is getting smaller as well.

March 20, 2009

2009-03-20T22:06:00.000-07:00

Well Hope was due to come home today, but she unfortunately didn't pass her car seat challenge. This is where they set her in a car seat for 1 hour and make sure her oxygen/respiratory rate/ and heart beat stay alright. She dropped down in her sats a few times. She passed her first challenge at St. V's so the docs think she probably failed this time because she got a couple of immunizations during the past couple of days. So instead of sending her home in a car-bed, we decided to let her stay a couple more days just to make sure. I got the training for the monitor and home which watches respiratory rate and heart rate. We are only getting it for our comfort at night, but it will help us sleep a little better. I am very excited to have Hope home. It's been so long and I'm excited to have her with us all.

When I was at the hospital today, the baby across from Hope passed away. I can't even explain how the feelings I felt- Knowing it could have so easily been us, imagining the pain the family felt, and wishing I could make it all better for them. When a baby passes in the NICU, the family gets to spend as long as they want with the baby holding it, and they take family portraits etc. The pain in her daddy's eyes was so, so heart breaking. I ask for prayers a lot, but I ask you all today to pray for that family. It is wonderful to know that that beautiful baby girl is with Jesus, never to be sick again, but her family needs PEACE. I also encourage you all to check out the March of Dimes website and possibly participate in the fundraising march on April 25th. The March of Dimes funds research and efforts to help reduce premature births and also were the first people to call for NICU's. New research and technology, besides the grace of God, is the reason Hope and Peyton, and millions of other babies are alive today. I hope that future efforts will make it to where more and more parents do not have to experience what I saw today.

On a lighter note, Hope should be home in a couple of days and Peyton is doing great. I hope you all are having a great Spring Break and beginning of Spring!

March 16, 2009

2009-03-16T22:02:00.000-07:00

Today we got news that Hope is expected to come home this weekend! There are a few loose ends that need to be tied up before she comes home, but she has been taking all of her feeds, gaining weight, breathing well, and maintaining with her diuretics. Surprisingly, the neonatologist and cardiologist don't think that Hope even needs diuretics anymore so they are going to try and let her out grow them and see how that goes. The pediatrician and cardiologist will follow up with that. They eye doctor is going to see her this week to check on Hope's eyes. He will clear her to be seen as an outpatient and tell weather or not we need to continue the patching and the eye drops at home. We requested a monitor for her at least for nights while she is being weaned off of diuretics mainly for our comfort. Hope is 7 lbs 7.5 oz now. We are really excited to have her home. Please keep her in your prayers that she will remain healthy and strong this time!

March 16, 2009

2009-03-15T14:51:00.000-07:00

The docs decided to take out Hope's NG tube today!!! She hasn't quite taken all of her complete feeds yet, but she is really close. She's been taking 3-4 full feeds in a row and then partial feeds the next couple. I think she just gets a little tired after eating all that work. They are going to see if she can get enough volume; if she doesn't, they will put the NG tube back in.

March 14, 2009

2009-03-14T13:25:00.000-07:00

Look guys! I can breathe on my own!
Loungin'

March 13, 2009

2009-03-13T16:35:00.000-07:00

Good news! They took Hope's cannula away today and she is breathing completely on her own again!!! She has been doing well on that- satting at 95. I forgot to mention yesterday that they are letting her choose when she is going to eat now. They thought that maybe if they could catch her when she is more awake, that she would do better with her feeds. So if she wakes up at 2 hours and is hungry, they will feed her; and they won't let her go longer than four hours. They have been doing this since yesterday morning and it seems to be going well. She's taken almost all of her full feeds and just half of one of them. Today she took a full feed at noon and then the OT/PT came around to feed her an hour and a half later and she took an additional 50 cc's! Go Hope!

March 11, 2009

2009-03-12T22:12:00.001-07:00

The girls are doing well... Hope is down to 75 cc's of flow! The docs are weaning her flow very slowly. She will most likely be off of oxygen within another day or two! Yay! Her diuretics have been upped to 3.5 ml, 3 times a day. She gained 40 grams last night bringing her to 7 pounds 4 ounces. Hope's feeds have been doing better as well. She took a whole bottle for me today. Most of the time, she has been taking 1/2 to 2/3 of her feeds. If she can get to full feeds, we won't have to put a G-tube in her tummy, so let's hope she can manage to get the energy she needs for that. She LOVES her swing. So do the nurses :) It is their saving grace when she is cranky and bored. She also loves her mobile and star like Peyton. Some people have asked me if there have been any decisions on surgery and the plan now is to still wait and see how she does with gaining weight, breathing, eating, diuretic maintenance etc. The cardiologist is still hopeful that the VSD will close on its own.

Peyton has gone with me to visit Hope lately. She snuggled in Hope's crib today and they loved it. She was 9 lbs 10 ounces yesterday, so she is gaining weight well still. She got a new chair today so she can practice sitting up.

Anyway, that's it for today :) Have a great weekend!

March 10, 2009

2009-03-10T01:25:00.000-07:00

I can't believe I am writing MARCH!!! Time flies sooooo fast! It's hard to believe that the girls are almost 4 months. The past four months have gone by really fast.

Hope is doing well. I didn't have a chance to update yesterday, but Hope has been breathing a little fast the past couple of days and since she is on such a high dose of diuretic, the cardiologist started to think that maybe she might need her VSD repaired earlier instead of just waiting. He called for an x-ray of her lungs today to compare it with the one 4 days ago. Basically if it was worse, it would make a case for surgery; but it was better! So at this point, they are still thinking that any problems she is having with her lungs are cause from previous damage and not the heart. So they will be keeping a close eye on her for the next couple of weeks. Hope had a little fever last night and this morning, but I just called the nurse and the fever has already gone away and she said she was even a little cold tonight.

Wonderfully, Hope is still gaining a ton of weight! She is 7 lbs 2.9 oz this evening. She has also been doing well on her feeds tonight. This is great news because, like I mentioned before, nutrition and growth are some of the most important thing right now. They have Hope on some of the highest calorie formula babies go on, with extra protein, and before the past couple of weeks she was only gaining about a pound a month. The past couple of weeks, she has doubled her weight gain. If this keeps up, that would be REALLY great! The growth and nutrition are what will help her lungs to grow and get better and that's really all that will help (besides God :) )

Anyway, that's about it for today!

March 7, 2009

2009-03-07T21:06:00.001-08:00

There are no real updates today except Hope's weight last night was 6 lbs 15.25 oz. Almost 7 lbs! She has gained a pound in two weeks which is amazing. The pediatrician nurse said that with even term babies they expect a half a pound a week. If this is real weight, she's right on course! The docs said nutrition and growth is the most important thing right now so I am pleased with how fast she's growing right now! I hope you all enjoy the video of Peyton. Like I said before, she loves to practice her standing. She is still really wobbly, but she was taking a bath the other day and she kept pushing up with her legs like she wanted to stand. We had to get it on video because she is just so darn cute!

March 6, 2009

2009-03-06T20:38:00.000-08:00

Cards from the girls made by Nurse Tyson
Scrapbook page from Nurse Joy night before Hope left
Hope's pic with Santa
Scrapbook page from nurse Joy

Hope's eye patch

Here are some pics above. A couple of the nurses at St. Vs made us some really cute little scrapbook pages or cards during the holidays.

Hope has been doing well the past couple of days. She got to meet her Great Aunt Debbie and Uncle Ron today. So did Peyton. She is down to 1 liter of flow, room air, and up to 45 ml of milk. She was 6 lbs 11 oz a couple of days ago. She is getting so big. As it stands now, Hope's cardiologist is hopeful that she will not need surgery and that her defect will close on its own. To explain further, Hope's hole/defect is not getting smaller, however, the valve next to the hole is still growing more and more tissue around it that is blocking the hole (as explained in previous updates) So, he is hopeful that it will continue to grow more tissue, therefor blocking the hole completely. We will be sitting down with him this weekend and ask how long he expects this to take and how we will manage her heart until then. He said that her heart, right now, doesn't seem to be causing very much of her problems, but there could still be some residual left over from whatever was happening when she went to the ER, reflux, and then lung prematurity.

As far as her eyes go, her opthmologist said that she does have ambliopia/lazy eye in her right eye. They will be patching her left eye for two hours a day while she is awake in order to get her to use her right eye and strengthen her muscles and coordination in that eye. Her other eye doc said he thinks this is somewhat due to just premature muscle usage, but if she doesn't use that eye to see, that part of the brain can shut off, causing blindness. So it is important to patch right now in order to give her the practice she needs. The patch doesn't seem to bother her.

I FINALLY got to spend some awake time with Hope today. She was SO alert. All after taking a WHOLE bottle! She sat on my lap and looker around and even pushed up with her legs like Peyton does. I can tell her leg strength is getting stronger since the therapist has been working with her. It was great to see her interacting so much with us.

Peyton is so active right now. Last night she was "talking" and I started mimicking her. We talked back and forth for 5 or 6 minutes it was so cute. She is a great sleeper. She was wide awake and playing and wanting to stand, kind of fussy. As soon as I took her and put her in her bed, she didn't make another peep and went to sleep. She goes to bed every night around 11 or 12 and wakes up around the 6 o'clock hour. She's a wonderful and fun baby to have. She also got to meet her new cousin today Paige who is the same weight as Hope is right now.

Anyway, that's it for today! Have a great weekend!

Psalm 119:49-51

2009-03-05T02:20:00.000-08:00

⁴⁹ Remember your word to your servant,
for you have given me HOPE.

⁵⁰ My comfort in my suffering is this:
Your promise preserves my life.

Love it....

Hope has successfully made it to Emanuel. They will be working the next couple of days to get a plan of action together and see where to go from here. The hospital staff is very nice. I can bring Peyton and she can even snuggle in Hope's crib with her. I am definitely going to do that so they can get some interaction with each other. One of the best parts....comfortable recliner chairs! :) I will update more once I've talked with docs.

March 4, 2009

2009-03-04T11:45:00.001-08:00

She started out in the middle...
and ended up at the top....over...and over.... :)

Prettiest smile I've ever seen!

Hello all...sorry for the lack of updates... I don't quite know where the time has gone. Hope has been at OHSU still for the past 10 days. She has been looking good and not a whole lot has been going on. They are focused on growing her right now. She is 6 lbs 11.4 ounces! I know that's a big jump from the last update. She has taken some large jumps, but even with her higher diuretics, she's held on to a lot of weight. So it's kind of tricky to know what her "real" weight is, but it should be somewhat close to what the scale says. She's getting so big! She moved past the Pampers "Newborn" diapers to size 1 which is the same size Peyton is wearing right now. Hope has been cleared from her eye surgeon to leave OHSU. He said her eyes look really good. The traction in her right eye is getting better and can be followed elsewhere. With that said, she is being transported to Emanuel today so that she can be near her cardiologist.

A pulmonologist has been involved with Hope at OHSU and he feels certain that she had some event of aspiration. This may have been why she went to the ER. He thinks it may have been that and not a virus because she got off of the ventilator so fast and normally virus hang on longer than that. They have also taken her bottle feeding completely away because of how hard she works when she eats. They work with giving her oral stimulation during feeds and also dip her pacifier in milk so she at least gets some satisfaction and stimulation while eating.

Peyton is doing great. Her personality is coming out more and more. She is much stronger and she loves to stand up (while holding her of course) Her legs are strong, she is very active, and laughing and smiling a lot more. She moves her head back and forth and looks from one side of the room to the other as if she is watching something race back and forth across the room. It's cute :)

February 24, 2009

2009-02-24T18:05:00.001-08:00

Lot's of new updates today....

Hope:

Eyes: Dr. Stout (her wonderful surgeon) came to look at her eyes yesterday and he said everything looks wonderful and there are lots of good things, however, she still does have some traction in the upper peripheral part of her eye. He is hopeful that this will get better on its own. He said if it stays the same, we are fine; if it gets worse, she will need another surgery. So PLEASE pray it gets better! NO MORE EYE SURGERIES PLEASE!!! She will also be checked by her opthamologist (the person who did her first ROP surgery) and he is going to watch her, as she is at risk for amplyopia (lazy eye). Her eyes don't track extremely well right now so they will be keeping an eye on that.

Throat: The ENT came to take a look at her today and used the flexible scope to check out her hoarse throat. She didn't see any signs of excessive aspiration. The scope she uses can only see so far down and isn't extremely bright, but she thinks she may have a little bit of scar tissue from her previous intubations. She said this heals in most babies within 6 months to a year. So if she has any problems after that, they would do a more invasive check on her where they have to put her to sleep. Fortunately, she saw no signs of any of her vocal cords being paralyzed. So hopefully she will out grow this.

Fever: Hope has been on Tylenol, but her fever is gone so far. All of her tests came back negative so they are taking her off of her antibiotics today. They said she had a great night and morning. She was awake and alert this morning, breathing nicely, and looking really comfortable. Last night, when I was with her, she was very comfortable, even with the millions of tests she had to undergo previously that day. They put her on her tummy and she slept for three hours this morning!

Dr. Stout needs to check her eyes again in a week, so she will be at OHSU at least until then. We really like the doctor that has her this week (and last week). She's concerned about the fact that Hope doesn't really seem to be making the progress that she should, and is going to dig deep this week to see what she can come up with. She is going to look more into the issue of her heart and lungs and try to get some more specifics. Hope was 5 lbs 14 oz two nights ago! Almost 6 lbs! She is outgrowing some of her preemie outfits. It's still so crazy to even have her fit in clothes!!! And now that she is starting to wear more of the clothes that Peyton wore, it's unbelievable. All of your support is amazing, thank you so much.

Peyton: Peyton had her 4 month appointment with her new pediatrician yesterday. She is 8 lbs 13.6 oz We really liked him. So far, all of the neonatologists (old and new) that I have talked to know him and really like him. He said Peyton is right on board socially and developmentally. For a preemie, she is in the 50th percentile for her weight. She is transitioning from bottle to full time nursing right now, so we are watching her weight carefully to make sure she is still gaining. She is taking about 1/4 to half of her feeds by bottle still, but is making good progress. She is in her mobile right now, staring at the mobile on top of it.

Anyway, that's it for today!

Please pray for Hopes fever!!!! February 22. 2009

2009-02-22T18:33:00.000-08:00

Achoo!!!
Close up...
5 lbs 7 oz in her purple little outfit..Hope
Hope fits in these onsies now! 2/21/209

Hello all :) The doctor called yesterday and Hope had a fever of 102. I called a little later and it was down to 100. The last time they checked it was 101. They are going to run all the tests they can to see if she has any bacterial or viral infections. The doc said that fevers can be common with kids with heart failure, but that they didn't want to write it off as heart failure without checking to be safe. Please be praying for her. On the good side, she's been looking good the past few days that we have been there to visit her. The nurses said that she was fussy yesterday and fortunately they have volunteers that come and she was able to be held most of the day. They also said that she loves the CD we sent her- that it calms her right down. We took her a little singing star that has lights on it. We have two and Peyton LOVES her star! It hangs above her head in her bassinet and when she wakes up in the morning, she sits and stares at is as though she is waiting for us to turn it on. When we do, her face lights up. It's SO adorable!

They upped Hope's dose of Lasix again. They just doubled one of the three doses that they give her. Her weight is still at 5 lbs 7 oz. The diuretics pull fluid out so she's kind of been staying at the same weight for a while. She should have another eye appointment tomorrow or Tuesday. I will let you all know how that goes. They eye doc said things were looking good during the last one.

Anyway, thank you for your prayers! Have a good week :)

February 19, 2009

2009-02-19T17:07:00.000-08:00

Getting ready for our walk with the dog
Hope sitting in a little chair
Hello again :)

Hope seems to be doing quite well right now. She has still been at 2 liters of air but her breathing rate has gone down significantly. Justin saw her last night and they gave her a little chair to sit in (see above pic) and a little mobile to look at in her crib. That is one thing about this hospital that is kind of cool. The eye doctor saw her and so far, we haven't heard back from him and the nurse couldn't really explain what he saw. So I will update when I hear from him. He's going to see her again on Mon or Tues. Justin also got to talk to a cardiologist there and he finally feels like he understands a lot more what the plan is for her heart. The cardiologist explained that the valve that is next to Hope's VSD has grown tissue around it which is helping to stop some of the blood flow between the two chambers. Since the blood flow between the two chambers is the problem that VSD's pose, that is a good thing. Also, if you remember me mentioning that they said the valve next to her VSD made the surgery more difficult because it was paper thin? Well, she also explained that that is just for the first month of life, so that valve should be a lot more sturdy now and not so much of a worry. At this point, they still don't know if it is the heart causing her fluid retention or the lungs. The evidence they would be looking for to see if it was the heart is weather or not the left side of the heart is enlarged or not, and Hope's is not, and there is even less shunting than before. So, it could be causing her problems, but they have no evidence of that. As far as what is... we still don't know exactly. It could be her premature lungs (hence why we are hand-washing freaks and don't really go into public much), or like they said, a virus that she is trying to get over. All in all, she is looking much more comfortable and breathing much easier than she was even a week ago and that's very encouraging.

I hope I explained that okay? It's all kind of confusing, since there are a lot of unknowns. Oh yes and we found out that because of the type of VSD that Hope has, they will not be able to go through the groin, it would have to be open heart. But there is still the possibility of her not even having to have surgery if, in fact, her heart continues to shunt less blood.

Peyton is doing well. She was 8 lbs 9.3 oz yesterday and is still doing great. Her personality is showing more and more each day. She's been kind of cranky in the evenings the past couple of days, but is still such a calm and happy baby otherwise. The weather has been so nice lately which has given us the opportunity to take walks and enjoy the fresh air.

Anyway, that's all for now. Hope you all have a great weekend!

2009-02-18T17:26:00.000-08:00

She's so pretty
More new shades and outfit from Grandpa and Grandma Knight
Peace Dude! And my sunglesses even match my outfit!

February 17, 2009

2009-02-17T13:26:00.000-08:00

She slept like this for almost and hour
A girl's got to accessorize right
She got some shades too we just need the pic

Warming up after her much needed bath

Hello all :) I decided I would get on and upload some pics since there hasn't really been any updates. There haven't been many changes other than the fact that she is up to 3 doses of lasix a day ( I think I already told you that). We are hoping to meet with a cardiologist sometime this week to get some answers regarding how they make the decision on when to do heart surgery and some other questions we have regarding how to maintain her until that point. Hope is still on 2 liters of flow and struggling with eating. This road is not a fun one, but God's faithfulness has remained consistent and true all the way through. When His word says He never disappoints, it's so true. Even when things don't go exactly like I want them to, His goodness gives me the strength to keep my head up and keep going. Thank God for....God? Haha...I'll get off of here before I throw out any more cheesiness :) I hope you are all having a great week!

February 15. 2009

2009-02-13T15:43:00.000-08:00

Happy Valentines Day! (late I know)

Updates Updates....hhhhmmmm....well let's see.......Hope is still at OHSU. They eye doc said that he will want to see her on the 23rd so they are going to keep her there until then. They are going to utilize the time that

she is there to have some of the specialists that she needs to see take a look at her. So they don't

know exactly the reason that she ended up in the hospital. Her VSD may have been a little part of it

but they think it may have been more respiratory failure or heart failure. They think she could have

aspirated or got some sort of virus. So, they are going to have people come and do a test where they

can look to see where the milk is going when she eats to make sure it's all going to her stomach

and not to her lungs. They are also going to have the cardiologists look at her. Well, they already

have, but they will keep up with her while there; and they are also going to have an ENT look at her

throat to see if she has any vocal cords that are inflamed. If she does have problems with that, that

can also mess things up when it comes to breathing....I think the doc said it can cause aspiration...

I forget right now.

So they put her on another dose of Lasix today to help clear out her wet lungs and try to get her

breathing on her own. As it looks right now, if she can get over this hurdle, she may still come

home before any surgery takes place. We will see. If all the specialists see her that she needs while

at OHSU, she may be able to go back to Vancouver if it is just a matter of getting over her lung

issues. If she still needs to be seen by a lot of specialists after the 23rd, she will probably go to

Emanuel.

Hope's triglycerides have been consistently high as well and they can't figure out why, so they are

having people from the metabolic team take a look at her for that.

So anyway, that's the news for now :) Hope you all had a great V-Day

February 11, 2009

2009-02-11T13:29:00.000-08:00

I had to post the old one because I like to compare :)
Almost 5 1/2 lbs!
Hope's "Tour Bus"
Hope just about to go on her third stop on her NICU tour. This is her mini isollette.
Hope while home

Our funny attempt at a family pic....the girls must have been camera shy :) And even Shelby found her way in...as always
And of course Shelby found her way in again :) Our first day home all together :)
Hope's surgery went really well. We wheeled her down to the Casey Eye Institute to see Dr. Stout who explained everything that he was going to be doing. We left to go get lunch thinking it would be a couple hours before they were done considering that the last eye surgery was just laser and it took almost three hours. They called us in the middle of lunch and were already wheeling her back to her room! So basically the surgery is called a Vitrectomy. It is where they go into the clear vitreous part of the eye where the blood is and cut out the blood and replace it with synthetic fluid. Since the blood there was rooted in the retina, it was pulling on the retina. This could be bad if it were to detach the retina, but they were able to fix that as well. Basically, the clear part of they just has to be clear so light can travel through it and make it to the retina. If it is clouded and light can't get through, that messes with the part of the brain that is connected to that part of the eye. It's kind of confusing to explain with out drawing a picture. One of the other concerns during the surgery is that the lens could become clouded like a cataract and they would have to replace it. Just like the vitreous part of the eye, the lens can't be clouded as well. Fortunately, nothing happened to the lens during surgery so that is still looking good. The doc saw her this morning and everything is looking great. From this point on, they will do frequent follow ups to make sure that there is no more retinal detachment or even pulling on the retina, as well as no infections.

Hope got off of the vent this morning around 5 am and is down to 1 1/2 liters of flow. Her sats and heartrate were great during and after surgery as well. The docs at OHSU are giving her some stuff for her reflux to see if that will help her voice. They don't know for sure if this will help, but they said sometimes the acid from the reflux can make it to where the vocal cords don't heal as fast. Hopefully this will help. They are also going to have a therapist come and see her for her sucking ability. They may be able to have a special nipple that helps her work less hard while she eats. It could be the heart that is making her tucker out while she eats, but it may also be how she is sucking. We'll still wait to see what they say.

Depending on what Dr. Stout says today about when he would like to see her next, Hope may come back up to Vancouver as early as tonight. We are still waiting to see if he needs to see her, or if his partner can see her. Her partner is the one that is able to come up here to evaluate her.

No news on Peyton. She is still healthy, growing, and as cute as ever! She has another weight check today so we will see how she is growing! Thank you again for all of your prayers. You are absolutely wonderful!

February 7, 2009

2009-02-07T18:47:00.000-08:00

As some of you already know, Hope is going to be transferred to OHSU on Monday. The eye doc came to look at the blood her eye and thinks she will need surgery. The only person that can do this is Dr. Stout (the eye doc that saw her's boss) from OHSU. Many people come from all over the Pacific Rim to see him, even from Hawaii and such. He doesn't come up here to Vancouver, so she will go over there on Monday to be seen by him, surgery on Tuesday as long as he thinks it should be done, and then she will spend a couple days there recovering. The docs here are going to work hard to get her back to Vancouver they just said it depends mainly on our insurance. He said that sometimes they don't like to transfer back if it is a hospital with less specialists. Hope has a great case manager through my insurance that is very supportive of whatever Hope needs so I am hopeful that she will advocate for her to be transferred back. Fortunately while at OHSU, we may be able to have an ear, nose, and throat doc look at her throat and she if they can figure out what is causing the hoarseness. OHSU also has better ENT's than here so it will be nice to have them take a look at her while she is there.

Please pray that everything goes well for the surgery and that she will get off of the ventilator right after surgery and not the next day. To make light of the situation, I have decided that there must be a reason that Hope needs to make her name known amongst the NICU world in Portland (she will visit 3/4 NICU's as well as the whole Peds unit at Emmanuel. I am guessing that someday, when she uses this experience as her testimony and is touring the world telling people about Jesus, she will need a little experience with tours. So I am calling this "Hope's NICU tour '08/'09" and the ambulance is her tour bus. I guess she is not letting age stop her from being the little social butterfly that we all think she will be. :)

Hope is 5 lb 2 oz, maybe 5.5. She just gained 100 grams last night which is a lot for her. It could be real or it could be fluid. We will see after tonight. I think its 3 kilo's or about 6 1/2 pounds that they want her to be for heart surgery so she's getting there! I am just praying that GOD will heal her heart instead of Dr. King, but either way, God is in control of her life. Hope has been breathing very fast the past couple of days and even sweating a little and I just hate seeing her work so hard. She went back up to 2 liters on the flow today to help assist her breathing a little more.

Thank you all so much for your prayers. This is probably the hardest time that I've ever had in my life, but somehow I approach each day with hope and peace that everything will be okay. I am grateful that this experience has brought me closer to the Lord and not farther away, and that I have the opportunity to allow God to complete the work that he has started in me.

Anyway, that's all for now. I will keep you updated on what happens this week. Enjoy your week :)

February 5, 2009

2009-02-05T09:29:00.000-08:00

Hope is looking great today. The doc took her off of her antibiotics yesterday and also took her IV out. She is handling her feeds well and I am going to start feeding her as much as she would like to eat from her bottle today and gavage the rest. The goal is to get her breathing on her own. She is only at one liter right now so it should be fairly soon. Unfortunately, she can only handle about half of the food that she would normally eat because they have to be careful about how much fluid intake she has. So she can sometimes get kind of hungry. They have to find the right amount that will help her to grow, but not be too much fluid. She gained 20 grams last night, but is still at 5 lb 1 oz. Anyway, that's the update for today :)

February 3, 2008

2009-02-03T19:53:00.000-08:00

Good morning :) Hope had a good night last night. The nurse said that she only coughed a couple times, and only when she was being messed with. The doctors at this point think that she probably outgrew her diuretics and may have had a possible viral or bacterial infection. This is just a guess, though, because all of the tests that they did for the most common infections came back negative. The only think this because of her wet cough. They have upped her Lasix (a diuretic) to two times a day instead of three. She was very uncomfortable yesterday morning so the nurses gave her some Tylenol and she seems much more comfortable now.

The eye doc came to see her yesterday as well and said that the blood in her eye is still there and they will need to do a surgery where they extract the blood from her eye and replace it with synthetic fluid. If they don't remove the blood, it can effect brain development. She will probably have a follow-up appt in a week.

Tonight, Justin and I were invited by one of the nurses to a parent support group that she runs. She said Justin could go for the free pizza :) And there will be other parents and children who have been through the NICU experience and they also have a visiting "expert" come each time that may be a neonatologist, lactation consultant, NICU nurse, etc. I'm excited to meet more parents in the area and also ones that have been through this.

Peyton has been doing very well. She is still growing so big and is just so cute! I think I may have got a few smiles out of her yesterday as well. She was kind of constipated for the past few days and the nurses here were so nice and offered a heat pack for her tummy. I am still so amazed at how wonderful this hospital is for families. I love the fact that Hope is still always near me like she was at home. The nurses had to let us know that they couldn't babysit Peyton, though. I had to ask if anyone every tried this because I thought that it was funny that they even had to tell me this, and they said, "yes!" Some parents were going to go to the store and leave their child with the nurses! I laughed because it was funny, but it also goes to show how welcome we feel.

Anyway, Hope's chest x-rays for today are in and I should be talking to the doc soon, so I will update again probably tomorrow.

2009-02-01T21:50:00.001-08:00

Thank you Lord, for the power of your cross

Because of it, I have not lost.

I've gained forgiveness, grace, and peace

Oh sweet Spirit may your power release.

Within the trial, I share your suffering

My pride breaks. I am redeemed.

All these tears, and all this pain,

Is so worth the incredible gain.

So much pain we have on this Earth,

all taken away in a manger birth.

You died. So that I might live.

And then my girls, to me you give.

Yes, Lord, your grace is sufficient,

Even for me, your son you sent.

Thank you, Lord, for this trial,

To know you more, I'd run ten thousand miles.

I cannot wait until the day,

When I can see your beautiful face

Until that day, while I wait for you

May I honor you in all I do

Just a little piece of my heart :) Anyway, Hope is doing MUCH better than this morning. We basically took quite a few steps back. She on the ventilator still at 25 percent oxygen. Room air is 21 percent. They said she is on track to probably go off of the vent tomorrow. She was awake and just looking around for 3 or 4 hours today. She is so sweet I just wanted to grab her and hold her, but couldn't because of all of the IV's. Her test for influenza and RSV came back negative so that is good. I hope all of the tests come back negative, but I also Hope we can figure out what caused this. A couple people said they think she could have aspirated and then the nurses said they didn't hear anything like that. So I hope we can figure something out within the next couple of days.

Peyton is here at the hospital with us. It has been sooo nice to be able to have her hear with us and have the room to keep a few things for her as well. She was a little cranky today which was a little tiring, hopefully she will be a little happier tomorrow :)

Tomorrow Hope's doc is going to be a doc that saw her at St.V's for a couple of days. Who knows if he will remember her much since he didn't have her for long, but it will be nice to maybe have someone see her that has seen her before. Most of the docs here know and work with the docs from St.V's because pretty much everyone goes to Emmanuel sometimes.

So many things fell into place that made Hope survive today that again, I know God was right there along with us. Satan's plan to try and destroy children and families was thwarted, I believe because of your/our continuous prayer and God's amazing power and grace.

And seriously, the chaplain was called just to come and sit with us and she was the most amazing lady. She had such a soft and gentle Spirit that was so comforting.

Anyway, many of you have told me that you are praying and we just cannot thank you enough. Sometimes we just don't know what would happen without prayer? Have you ever thought of that? Anyway, thank you again and have a great Monday.

February 1, 2009

2009-02-01T08:53:00.000-08:00

Well, we are back to square one. Hope is back in the NICU. Last night we noticed that she was a little pale and even looked a little dusky. We took her temp and it was around 96 degrees. We got her up to 97 eventually and called the doctor. He said to keep an eye on it. So this morning, when I got up at 3 am to change her and feed her, I took her temp and it was 93.2. Yes, that's not good. I checked her respiratory rate and it was only 27 and she seemed limp so we rushed (Superman style) to the hospital. As they put her on the table, they had to do CPR. Soooo scary!!! We don't know why this happened yet. She wasn't really taking her feeds like she normally does yesterday either so it seemed like it was a slow progression. They are checking her for all sorts of respiratory infections that she could have. I am so thankful that God took care of her and that He gave us the parental instincts that we had to use. We got to the hospital almost seconds too late. I really feel that we need continued prayer as I know many of you are still praying. I believe this is spritual as well as physical.

Hope is now on the ventilator again and satting in the upper 90's. Please pray ofr a quick recovery.

We are at a hospital much closer to home now. It's close by our home and is a very nice NICU. Seriously, I've never seen anything like it. They have 2 parental rooms with a bed and TV that we can reserve. We can bring Peyton with as and a small bassinet or bed for her. Hope has her own private room with a couch that we can sleep on and a chair. They also bring breastfeeding moms food so I can eat. It is amazing and I'm so glad that she can be here where we can be with her. I have no idea how long she will be here. The doctors work very closely with the girls' old hospital as well as the one where Hope would have heart surgery. The doctor today is good friends with many of Hope's doctors, so that is good.

To be honest, as much as a love having her home and want her home, it's scary. She is fragile. I hope that she can stay here until her heart is better, however long that may be. Especially after this morning, I just can't go through that again!

Anyway, I must get back to her room :) Enjoy your Superbowl!

January 30, 2009

2009-01-30T23:08:00.001-08:00

I am please to announce that Hope is FINALLY home!!!! After 97 LONG days in the NICU, she is where she belongs, here with us. I must say, though, that I will miss several people in the NICU and will look forward greatly to the yearly reunions that we will take the girls to. One nurse already called today to see how Hope is doing and said, "give her a kiss for us, we are already missing her." I hope that those nurses and doctors know just how special and important their job is every day.- making life happen for babies that couldn't do it on their own.

Hope's first couple of days have gone very smoothly here. She has adjusted well and seems to be very comfortable. As you can see, we brought her home with the NG tube for her feeds. She still is not taking all of her feeds so the feeds that she doesn't finish we just finish in the tube. The nurses trained us on how to take it in and out when needed, but we are to try not to do that too much. Yesterday, Hope took all but a couple of feeds by bottle; today she was a little tired and took only about half by bottle. Once she takes all of her feeds, we will remove the tube. Hope had her first pediatrician appt today and she was 5 lbs!!! She gained 4 oz in the past two days. This is quite a bit for her so it could be because of discrepancies in the scales or fluid retention. If it is truly her weight, it would be wonderful.

Hope has quite a bit of medicine that we have to give her, so preparing her food was a little bit of a chore at first. The pharmacy that we went to wrote the wrong dosage on the bottle and thankfully the neonatologist caught it before Hope was discharged or they said she could have overdosed and went in to seizures, kidney failure, or worse. How scary, right? Shouldn't pharmacies double and tripple check their meds? I guess not.

Hope also has A LOT of out-patient doctor appointments. She will be seeing the pediatrician twice a week just for a quick weight check, labs (sometimes), and just so he can eye her and make sure everything looks good. She will also be seeing a pediatric surgeon, her eye doc, the cardiologist, nutritionist, OT/PT therapist, and if her hoarseness in her voice doesn't go away someday soon, then an ear, nose, and throat specialist. Luckily, this all won't always been in the same week, but it will certainly keep us busy.

Speaking of busy, sorry if you have called be and I haven't called you back. Yesterday was CRAZY. Justin had to work and his mom hadn't got into town yet, so I was handling the babies by myself. Let's just say if it were okay to have idols, I would idolize John and Kate plus 8. How the heck did they do it!!!!! Both of the girls, who normally sleep quite a bit during the day, decided "Hey why don't I just not sleep AT ALL today, and instead, I will cry unless I am eating or being held!" Needless to say, it took me about -5 seconds to fall asleep in bed once Justin's mom got here. Today was MUCH better, though, and I know it will just keep getting better once we get into a routine. They have both been great at sleeping through most of the night as well, so that was great. Hope has to eat every three hours, though, so it's just little cat naps here and there. So I will be trying to call you all tomorrow.

The pediatrician thought that Hope looked really good today. And also, after her last eye appt, the doc said her ROP is digressing and there is no more signs of Plus disease!! YAY! The reason she is seeing the pediatric surgeon is so that they can keep an eye on her hernia in her tummy. They said it will need surgery, but it's quite small right now and we are going to prioritize first and make sure that her heart is well before we do anything else.

Peyton seems a little curious about Hope. They are so cute when they snuggle together. The first time we put them together, their arms were free and Peyton whacked Hope in the face. It seems as though they will need to remain swaddled for a while when snuggling :)

Well, I can't think of much more to update about and I must get some of the Word before their next feed. I hope everything is going great. I'll update again soon :)

January 27th, 2009

2009-01-27T15:00:00.000-08:00

So as of now, Hope will be coming home tomorrow! We are working on getting her prescriptions filled and out-patient appointments scheduled for now. We are very excited for her to be here with us. A couple of days ago, she was 4 lbs 10 oz! It's crazy how big she is getting! Peyton was just a little bigger than that when she went home from the hospital. Anyway, just thought that I would update. I have lots to do before tomorrow. I will update again soon!