There's not a whole lot to report on Miss Kaelyn. She is now 3lbs 3oz! So I just wanted to post some pictures of the little Chunkster. She's just taking it day by day, doing pretty well. I have taken it upon myself to make sure it is know she is a girl. Apparently the pink and purple bedding is not enough, so I've made some bows for her. Just yesterday her nurse kept calling her a "he". I'm pretty sure everyone that has ever had a baby knows how that feels, it is quite irritating. I mean its one thing when its a stranger on the street, but when its the nurse that has been with HER all day long!!! really.
Aunt Sarah threw a really nice shower last weekend with the extended family on my side. It was lots of fun, we really appreciate everyone taking time out of their busy lives to come. We got some awesome gifts that we can't wait to use. We just need to get this little one home! Or at least out of the isolette so she can wear all her cute clothes! Thanks to everyone!
Now to the good part, the pictures :)
Wearing her Dads favorite color.
Her and Mom in their matching outfits.
Looking beautiful in Mommy's favorite color.
Dad had to take this picture to show her chunkiness.
In the last month and a half since Kaelyn was born, many of our loved ones have asked us if there is anything they can do for us. Right now really all we need is your prayers and faith. But there is someone out there that needs your help, and we ask that you will donate, even just a small amount in honor of our little girl.
Heather, Zoey's mother is training for a marathon. Not just any marathon, the Nike Women's Marathon as part of the The Leukemia & Lymphoma Society's Team In Training. She and her daughter are running in behalf of their beautiful daughter and sister, Miss Zoey and all those who have fought the good fight against Leukemia. I encourage you to visit their blog and partake of their amazing strength and optimism. They have ran the long race of cancer treatment & survival, and have done it with grace. The world is a better place because Miss Zoey and her story that her mother has so graciously shared with us.
In order to participate in this race, Heather needs to earn $3,300.00 dollars. She is just over 60% there, I check every week to see how the fund raising is going. She has done so well and I just want to help her by sending my family and friends to her site and asking you to donate to a beautiful cause.
Heather was one of the first people I met online that had a child with Down Syndrome. I don't even know how I came across her blog, but after leaving a comment letting her know that my daughter was diagnosed with Down Syndrome, she took me under her wing and has helped me through such a uncertain time in my life. She has taught me to have hope and to let my little girl lead me along. Whenever I get scared, and the doubts begin to overcome me, I just remember her advice to let Kaelyn show me the way through all of this. Please help her in this quest as she has helped so many others to see the beauty in life and to better understand the need for prayer to get us through the most dark and dreary days.
Zoey's blog is full of beautiful and inspiring quotes, many that got me through those very difficult days after Kaelyn was diagnosed with Down Syndrome and a Heart Defect. My favorite one of all is the one found on her header;
"When you come to the edge of all the light you have, and must take a step into the darkness of the unknown,believe that one of two things will happen, either there will be something solid for you to stand on or you will be taught how to fly"
In the past four months I have found this to be true, and it began with Zoey's story. Little Miss Fiesty Kaelyn is teaching us how to fly, one day at a time. I admire Heather for taking on the challenge to run this marathon. It takes so much time and energy to train and prepare, but what a beautiful experience it will be to cross that finish line and know that she has helped such a wonderful cause.
Even if you can only give $5.00, every little bit helps. Bracelets can also be purchased from her blog. The are white and say, "The Gift of Zoey's Grace". They remind us of all that is pure and right in this world, and that truly anything is possible.
Good news, no surgery. For a while at least. After the echo on Monday and the cardiology conference on Wednesday it was decided that she is doing well enough that they don't need to intervene. Also, they are a bit worried that if they did close the ductus they would have to go back in to fix her small pulmonary artery. So, were hoping she can pack on the pounds and then they'll take care of the av canal defect, the ductus, and the small pulmonary artery all in one surgery. They told us something that we were happy to hear and that is that there is nothing going on with her heart right now that is keeping her from going home. We just need her to meet those goals that I talked about in an earlier post.
Needless to say, we are a bit relieved. She is currently on an antiobotic because after she was sedated she started having trouble with her breathing. Apparently she is showing symptoms that are pretty similar to those of an infection so they put her on the meds foe precautionary reasons. Our NP did tell me that the symptoms are also very common in most babies that have been sedated. She is definitely doing better and we know that because yesterday she let out some pretty good screams. We were glad to hear them. Her fiestiness is coming back! Hip hip hooray!!
Quick note: we just found out that it's official. She has gained 1 pound. Kaelyn now tips the scales at 2 lbs 12 oz.
Today was kind of an up-and-down day. Some good stuff mixed in with some concerning stuff. As mentioned earlier another echo cardiogram was done today. They did sedate Kaelyn and we could definitely tell that she was out of it while we were hanging out with her. Normally, she isn't wide awake and moving all over the place, but still, she wasn't herself. She didn't even fuss when I took her temperature, like she always does. So, that was kind of a bummer, but hey, we enjoyed the visit.
We don't really know the results of the echo but, we were told that depending on what happens at the conference on Wednesday, she could have surgery this week. The good news is that they think that she is doing well enough that she could handle it. The bad news.....she has to have surgery. We aren't terribly worried because, according to the NP, it is a pretty routine surgery. They say it only takes about 20 mins. So that is a little bit comforting, but still surgery. The procedure will consist of them going in through her back/armpit, through the ribs and then to the PDA with a little clip that will clamp the PDA closed. Then, they should be able to see how her small pulmonary artery reacts and make adjustments as necessary. We're not sure if they will put a shunt in right then or not (if needed) but hopefully they don't have to do two surgeries. So, once again, we are playing the waiting game. At least this time it's only a couple of days.
My goodness how fast this week has gone. Kaelyn continues to impress and surprise us. On Monday we celebrated her 1 month birthday. It's pretty crazy to look back four weeks and see how much she has changed. She looks more mature and bigger. Last night she weighed in at a life-best 1,160 grams (2 lbs 9 oz). In no time she'll be over three pounds and chunky as a Michelin man.
This week Kaelyn had 3 tests done. An echo cardiogram, an eye test, and a head ultrasound. The echo cardiogram results said that her ductus (pda) has gone from 'small to moderate' to 'moderate to large'. Just the opposite of what we wanted to happen. So, now they are worried that she may be getting too much blood to the lungs. Kind of weird considering that for the first couple of weeks of her life they were trying to keep the ductus open and now it won't close. The cardiologists are going to perform another one on Monday but are planning on sedating Kaelyn because she was just too feisty for them and they couldn't get the best images this last time. Then, they are going to take it to a weekly meeting and get other cardiologists input on how to best proceed. We'll keep you all posted.
The eye test went well. Basically they check to make sure that no eye complications arise due to her pre-maturity. Which is a real possibility. But, the results came back good and she shows no signs of the complications. Yay.
The head ultrasound went OK. She had one not too long ago and they noticed that one of the ventricles in the brain was slightly larger than normal. They told us that it was nothing to be too worried about but they are going to keep a close eye on it. Then they did another one just barely and not a whole lot has changed. We are really hoping that no major issues will arise.
After we found out about the echo results we were kinda bummed. But then, little miss Kaelyn came to the rescue. After talking to our NP we got looking and talking to Kaelyn and noticed that they had taken her feeding tube out of her mouth and had threaded it through her nose down to her stomach. Finally we got a good look at her face without a tube and big chunk of tape on her cheek. What a beauty! We couldn't believe how cute she is. Then, since she didn't have a tube in her mouth anymore, we gave her a full-size pacifier and she went to town on it. Apparently she loved it because she wouldn't stop sucking, except to catch her breath, and the she was right back up. I know it sounds kinda funny, but that made us so happy that the echo results didn't get us too down. Part of the reason why sucking a full-sized pacifier made us so happy is because it gets her started on the path to being able to eat through a bottle. The sooner she gets her bottle feeding down the sooner we can check that goal off for her to come home. The other goals are: maintaining her own body heat, no major drops in oxygen saturation or heart rate, and getting her heart situation figured out and under control.
Now, I'll let Jeana add her touch with pics and descriptions (she's done all the others so give the credit to her, I just do the writing).
Check out that action!
Her being feisty after we put her back in her isolate.
If you're happy and you know it clap your hands
Check out those chubby cheeks.
Finally I can fit my whole hand in my mouth, life is good:)
Let's start with the medical stuff. First, Kaelyn is still eating well but wasn't gaining the weight that the doctors wanted her to. So, they have fortified her milk, added vitamins, and added calories to help her. They told us that during one week she gained 30 grams and they wanted her to gain that much in one day. After adding that stuff to her meals, she gained 130 grams in 4 days. Today alone she gained 50 grams. Sweet! She nows weighs 1,050 grams (2 lbs 5 oz). That's our little chunkster.
They also noticed an enzyme deficiency through some blood screenings. Luckily it isn't too complicated and can be treated by medicine. Kaelyn will have to take the medicine daily for the 1st year and then be re-evaluated and probably have to take it once a week after that. Kind of a bummer, but still, we are happy that they noticed it this early and that it can be treated so easily. Just in case you want to know it is called biotinidase deficiency.
Apart from those couple of things she has been doing very well. She is definitely still showing us who runs the show. Yesterday we were changing her diaper and it only took us 5 diapers to get it right. The first four times we went to close her diaper she would poop all over the fresh one. Luckily we had a diaper there to catch it. I decided that since it was my birthday she was just playing pranks on me.
Pranks aside, she gave me a pretty good gift. Apparently, she was so sick of her feeding tube that she just yanked it all the way out. So, we had the pleasure of holding and seeing her without it in for the first time. She is adorable. With every tube/wire that gets removed we get to see just that much more of her and just how beautiful she is.
Tonight we were able to help with bath time for the first time. Okay, so it isn't really a bath, more like a sponge wipe down, but it sure gets her clean. She was a good sport and didn't seem to mind it too much. Now for some pictures.
Our little UTE fan
She has really perfected her bubble blowing skills
First and foremost, the echo results are in, and ........................................................... no significant change is the verdict. So, they didn't have anything new to tell us. The past couple of days have been pretty uneventful, which is perfectly fine with us. She is now up to full feeds (4 oz. a day) and tolerating them really well.
There's the technical stuff. Now on to the fun/cute stuff. A couple of days ago Jeana and I were holding her when the time for her cares came up. The first part of cares is done of by me. I check her temperature by lifting up her arm and stick a thermometer into her armpit. She usually tries to fight it a bit and it's obvious that she isn't to happy with me while I'm doing it. But, the other day, she was not happy at all. While Jeana was holding her I started my procedure and she resisted as much as possible. I stuck the thermometer into her armpit and then she YELLED at me for it. OK, maybe it was just a cry, but it sure seemed like she was mad at me :-) Pretty sweet, for now at least, I'm sure it won't be when she's a teenager.
Next, last night, Mom got to do her first hair-do. Kaelyn used to have an IV in her forehead that was taped on. Since they took it off, she has had some of the sticky stuff from the tape stuck in her hair, and Jeana got to wash it out. While she was at it she took the time to comb her hair and make it look extra pretty.
Last but certainly not least, one day when we walked in, I flipped the blanket off her isolet and said something like "hey sweetie" and gave her a wave. Immediately after that she lifted up her hand and, I kid you not, she waved back! The nurse and Jeana looked at me with complete shock and there faces. I, of course, was not shocked at all. That's my girl!
Wearing her Dads favorite color.
Her and Mom in their matching outfits.
Looking beautiful in Mommy's favorite color.
Dad had to take this picture to show her chunkiness.
Wide awake chilling in her "snuggly"
