8-26-09

Things are starting to look pretty good. After they took Kaelyn off the nitric oxide her oxygen needs starting going up again. The say that she doesn't have any pulmonary hypertension, which the nitric is supposed to be for, so they don't really have an explanation for why her needs went up. So, they put her back on and she immediately started doing better with her oxygen needs. Kinda weird. It started to get a bit frustrating because they kept trying thing after thing and nothing was working until they put her back on. So now, after a week of failed attempts, we are back where we started. But we are OK with that because they are done trying new things and are focused on getting her chunked up. Which she is definitely doing.

Last night she weighed in at a solid 5 lbs! Gotta love it. She is getting so big that her premie outfits are starting to look small on her instead of her small in them. Good thing we brought them in and started dressing her when we did or she would have never got to wear them.

The last few days she has been awake and alert when we are there. Its been so fun to get to play with her.

Enjoy the pics and videos of her playing with us!

Living it up in Daddy's arms

While they were giving her new CPAP equipment our nurse took this picture of her, its the first time we've seen that much of her face in the past 3 weeks! We can't believe how much she has changed.

Family Photo

Happy as can be, mainly because she was successful in pushing her feeding tube out. Look at those chubby cheeks.

Big girl on the scale when the 5 pound mark came in! Look how she is filling out those jammies. Newborn clothes, here we come - Mom better get shopping!

Wrapped in the blanky Wayne's Aunt Ruth made for her when she was born. Someday she'll be able to wrap her baby dolls in it and we won't be able to believe it was just her size.

A Simple Piece of Fabric

A few nights before Kaelyn was born, Wayne and I went shopping. Shopping for fabric. It was a task I had on my to do list for weeks, but couldn't bring myself to do it. You see there is a lady that makes teddy bears out of special material for families who have babies that pass away. We spent over an hour looking through hundreds of fabrics, trying to find the perfect one for our daughters bear, in case she didn't make it. We finally decided on a very softy fluffy light green material. We took it up to the counter to be cut. We weren't sure how much we would need and we told the lady working that we were going to be making a baby blanket for our daughter. She kept insisting that there wasn't enough fabric left on the roll to make a baby blanket. Not quite sure how to respond I just told her it was for a very small baby. To that she replied, "They get bigger".

It felt so surreal, the whole experience, like it wasn't really us in that fabric store, facing the fact that our daughter, the little girl still alive inside of me, might not live very long, if at all. I just wanted the lady in the fabric store to understand. To just give us the fabric we would need and let us go on our way. But she couldn't understand, how could she? How could anyone understand what was going on in our minds - in our hearts, when we didn't even understand it ourselves?

Five months ago it was if our world came crashing down on us, like everything we knew/expected was gone and we were left alone in the dark. The world around us kept moving forward while ours stood still. It was such a relief the day that little miss Kaelyn was born, she was here with us, we didn't have to wonder if that day would come anymore. Now we're on a different journey, one that is still very hard, but with that little girl by our side we know we can continue on, to push forward and face whatever comes our way.

That piece of green fabric is now covering her crib at home, waiting for her. But it will have to patient, just like us. It will have to wait until her little body is ready to come home. As I look at that piece of material tonight I'm grateful it isn't being used the way it was intended. That we have found a different use for it, a better use. A constant reminder of how far we've come, and how far we have yet to go.

Baby girl, we are so glad you are here, that I believe was the first step in your miraculous journey. When I get sad and want you to be here with me, sitting in the rocking chair in your room, I will remember to have faith and know that this time in your precious life will soon be finished and we'll be onto the next, here in your room, at home.

-Mom

8-20-09

I just realized last night how long it has been since our last post. Really there isn't a whole lot to report. They have done a couple of more echos on Kaelyn and don't see any pulmonary hypertension, which is good. So, now they are trying to wean her off of the Nitric Oxide that she has been on. It's going to be a pretty slow process, but a good step in the right direction. We are really hoping that she can get the cpap off her face soon. We can tell that she has changed a lot and are worried that we won't recognize her when they do take it off. We will definitely put up some pics when it happens though. Other than that she is doing quite well. She keeps gaining weight, which is one of the most important things right now. She is now a whopping 2 kilograms (almost 4 1/2 lbs.). She needs to get to the 5 kilo mark before they will even consider the serious open-heart surgery to repair her AV canal defect.

The other day I was listening to the radio, a country station. Up until a friend gave us George Strait tickets (THANK YOU SO MUCH!!!), I would say that I liked any type of music but country. Then the concert happened and I will hesitantly admit that country music is growing on me. Anyways, I was listening to country radio and an awesome song came on. I don't think I could ever write a song that so perfectly explains what is going on in Jeana's and my life. So, here are the lyrics, also you can listen to it with the music player on the right hand side. It is by the one and only George Strait:

--------------

I just walked down the street to the coffee shop
had to take a break
I'd been by her side for eighteen hours straight
I saw a flower growing in the middle of the sidewalk
pushing up through the concrete
like it was planted right there for me to see
the flashin' lights, the honkin' horns
all seemed to fade away
in the shadow of that hospital at 5:08
I saw God today

Chorus:
I've been to church
I've read the book
I know He's here, but I don't look
near as often as I should
Yeah, I know I should
His fingerprints are everywhere
I'd just slow down to stop and stare
opened my eyes and man I swear
I saw God today

I saw a couple walking by they were holding hands
Man, she had that glow
yeah I couldn't help but notice she was starting to show
I stood there for a minute takin' in the sky
lost in that sunset
a splash of amber melted in the shades of red

Chorus

I got my face pressed up against the nursery glass
She's sleeping like a rock
My name on her wrist wearing tiny pink socks
She's got my nose, she's got her mama's eyes
My brand new baby girl
She's a miracle
I saw God today

--------------

Now for a couple of clarifications, I don't drink coffee, but there is a Starbucks in the hospital where Kaelyn was born and Jeana and I spent 5 days. Next, Kaelyn has Jeana's nose and we still don't know whose eyes. So that line will have to be changed. Other than that, it's spot on.

Now for some pics:

Kaelyn in the first onesie she wore

We decided we'd better start dressing her in her premie clothes because we aren't sure when she will come home and wanted to make sure that she got to wear them before she out-grew them

8-11-09

Our prayers have been answered, Kaelyn's oxygen needs have been substantially lower the last three days and she's been much more stable. They decided that she doesn't need the Nitric Oxide, so they have been weaning that down and it should be gone in a few days. She is still on CPAP, but she is hanging around 25-40% oxygen, which is much better! They talked about her at the Wednesday cardiology conference today and are deciding if they think she needs an inner chamber shunt put in. We should find out what they decided tomorrow.

Some of you were wondering if they had mentioned pulmonary hypertension. No they haven't, they are just thinking that she's not taking very deep breathes and so her lungs weren't expanding all the way. That's why they put her on CPAP and they said that her lungs have looked much better since they did. So hopefully that's all it is, and as she gets old/bigger she'll be able to do that on her own. At first she got even worse because she was so upset about the CPAP that she would really de-sat (her oxygen saturation goes down and so she would need a high oxygen percentage from her cannula) when she would scream and fuss. So she has been on some sedation medicine and that has helped her relax while she gets used to wearing it.

I forgot to mention the other day, her last day at Primaries, she took part of her feeding from a bottle for the first time! We were so excited, she can't drink from a bottle while she's on CPAP, but I know she'll just start right back up when its gone. She has been going to town on her binkie every night.

They also turned her isolette down to the lowest setting and we got to start dressing her for the first time yesterday! She could probably use extra-preemie outfits(ie. xxxxxs), but I don't think they make those, so she'll just have to do with what we have. Its so fun to dress and bundle her up. Today I took all her preemie out fits to the hospital so she can wear her own clothes and just be styling. She should be graduating to a crib any day.

Oh yea, did I mention...she is 4 POUNDS 1 OZ! We're pretty sure we won't even recognize her when the CPAP comes off because she's growing so much and her hair is getting so long! That will be an exciting day. Today while we held her she had her eyes wide open the whole time. She always does awesome when we hold her with keeping her oxygen and temperature up.

Thank you Kaelyn for showing us the way...one more time:)

Her very first OUTFIT!

The first out fit Mommy got to dress her in.

We had to spice up her CPAP.

Wearing her first outfit from home. Aunt Kay brought this to her yesterday.

Showing off her giraffe feetsies

We snuck some pictures while they were changing her equipment, yeah for her face!

It's nice to know what our baby looks like with all that stuff off her face, can't wait till its permanent!

Two steps forward and one step back...

That's what we hear the NICU is like. It seems like we've hit that one step back. I hesitate to write this post, because I only want to post the good/positives of this, but that's not realistic/fair. For the past 3-4 weeks Kaelyn's oxygen needs have gone up. She was only on .7 liters of oxygen and it was at 21% (room air). Then it went up when they thought she had an infection, which they never found anything in the cultures. It was at 3 Liters and she was on a high flow nasal cannula, but she was requiring any where from 40-70% oxygen so a few days ago they put her on C-Pap to keep her airway open and she was still needing like 80-100% to keep her oxygen saturation up. So now they have her on a machine that puts Nitric Oxide into the C-Pap. Its to help her with her oxygen saturation. If this makes absolutely no sense to you I'm sorry, its taken me 8 weeks to figure this much out.

Any way its just frustrating/discouraging because no one can explain why her Oxygen needs have gone up so much. The saddest part is that with all this going on, the chance of her coming home before her surgery is pretty slim (which could be 4-5 months), unless something changes, which is what we're praying for. The other hard part is that she just hates the C-Pap. It covers her whole face and she is just so frustrated with it. My heart just breaks as I see my tiny little girl screaming and feeling so restless and there isn't anything I can do to make it better. I just have to remind myself to be grateful that she is upset with the whole situation, because it just shows she is a fighter, and will get through this.

Through it all she continues to amaze us, she is now 3 lbs 13oz. She is such a fighter, and it becomes more and more apparent each day. She is showing us miracle after miracle, and when I look back I can't believe how far we've come, even though sometimes it feels like we're standing still. We're still loving it at the U though, we've had some great nurses and that helps A LOT!

We moved!

They moved Kaelyn back to the University Hospital today. It was an insurance thing, she's not critical enough to need to be at Primaries. That's good news! We are just fine with it, we really loved it at the U...if you can love being in the NICU, and are glad to be back...once again if you can be glad to be at the NICU. Its just a lot more private and quiet. In our minds its the next best thing to bringing her home, and one more step in that direction. Primaries is a great hospital and we had some great caregivers, and we'll be back there come surgery time. Just thought we'd let you know.

8-4-09 Party Time!

Yesterday was a big day for little Kaelyn...It was her DUE DATE. So she is officially considered a new born. So now that she has had a seven week head start, she can get going on what newborn babies are expected to do. We had a little party with her at the hospital. It consisted of holding her, letting her wear the birthday hat Mom made her and taking lots of pictures. Then we had a little BBQ with some family to celebrate both her due date and Grandma Bonner's birthday. We were sure to tell Kaelyn that not many kids get to celebrate their "birth" day like she did yesterday. We told her that they are usually all slimey and that they get spanked. We promised not to give her the birthday spank till next year:)

Our little munchkin is doing pretty good. She is now 3 lbs 8 oz, which is exciting. She's growing like a champ. We worked with the Physical Therapist this week and learned how to help her get ready to start taking a bottle. We will be practicing when we are there at her 6:00 feeding. The biggest part is keeping her alert and awake for it, she can suck pretty good on the binkie when she is. Its strange because most parents are trying to wean their kids off the binkie and we're trying to get her on it.

Her oxygen needs have gone up quite a bit which has been kind of a bummer. They aren't sure why, but will be doing an eco today to see if they can find out. Other than that she is doing well. Getting cuter and stronger by the day. She is still little, but man she can put up a fight. Sometimes when we change her diaper she stretches her legs out and keeps us from putting it back on. Its pretty funny.

Here are some pictures of the Dute Date bash:

So this is what it feels like to have your mom dress you funny

We got to go to a BBQ Monday and meet some great families and their adorable kids that have Down Syndrome. We had such a great time and are excited to get to know them even better. I can't wait till Kaelyn can meet all her new friends!

Hmm...I wonder when I get to meet these new friends