6-29-09

Not a whole lot to report today. We haven't been able to see the results of the echo cardiogram but hopefully we will on Tuesday. Other than that, Kaelyn continues to do very well. She has increased her feeds so much that she no longer needs to have nutrients and vitamins given to her through an IV. So, they took it out. It's pretty cool being able to look at her with not nearly as many wires as she used to have. She is still on a little bit of oxygen (for those of you who know - 21% saturation and .8 liters of flow) but overall doing very well.

We'll be sure to let all of you know how the latest echo went.

She graduated to the "preemie" size diapers!
As apposed to the "Isty bitsy tiny weenie" size diapers she wore before.
(well she sort of fits them, if you pulled them up the whole way her whole midsection would be covered in diaper)

Sunday June 28th

Lately things have been looking pretty good for Kaelyn. She has increased her feedings so much that as of today, she will no longer need the extra nutrients and vitamins being pumped into her via an IV. She will be getting all of them from mom's milk. Also, she now weighs 900 grams (almost 2 pounds). Hopefully she keeps chunkin up.

On Monday morning she will have another echocardiogram to see if her ductus has completely closed, and if so, how her pulmonary artery is doing. She seems to have been doing really well with breathing and is basically breathing room air with just a little bit of flow being given to her. She is keeping her eyes open a lot more now, we were able to get some pictures of her looking at us. She also likes to suck on her binkie, she is practicing up for when she gets to eat from a bottle. She's really looking forward to that, lately she has learned how to pull out her feeding tube.

Kaelyn has a question, "When do I get to take this feeding tube out?"

So, tomorrow is kind of a big day. If her ductus is closed and her artery is OK, we will be over that hurdle and on to the next of getting her to put on some serious weight in order to be ready for her open heart surgery. Please keep her in your thoughts and prayers.

One last really neat thing. This morning we were visiting her and got to hold her again. Jeana had to step out of the room for a little while so I got to just sit and hold my baby girl. While holding her, I had my first daddy-daughter nap. Sorry no pics, but it was pretty cool. Thank you to all for your prayers, concern, and support!

Transfer to PCMC

Last Friday, Kaelyn was transferred from the University of Utah to Primary Childrens Medical Center (PCMC). We had a great experience at the U and were really impressed with love and care that was given to Kaelyn from all the nurses. So, naturally, we assumed that things would be basically the same at PCMC.

Well, the first couple of days that wasn't so. Kaelyn got transferred in the middle of the afternoon, then another echocardiogram was done and by the time nurse change came around we only had about an hour to spend with her. In that hour the nurse didn't explain a whole lot to us about PCMC and what to expect. The next couple of days weren't a whole lot better. Actually, Saturday was a real bummer. Our NP came in and started talking about all the bad things that might happen with our daughter (including dropping the bomb on us that Kaelyn has Tetralogy of Fallot, in addition to her other heart complications) and even stated that "nothing will be easy for your daughter". She didn't say a single positive thing. Needless to say, we weren't too happy with her. Unfortunately, we were pretty turned off about PCMC. Then came Monday.

Monday we met a new nurse who, from the very beginning, was awesome. Jeana and I both knew right away that we wanted her to be our Primary Nurse (meaning she will watch over Kaelyn whenever she works). This is something that is really important to us, especially after our first couple of days. It seemed like before we met this nurse, all the other nurses and the NP at PCMC just saw Kaelyn as a project, not a beautiful little girl that needs love and care. This nurse was the exact opposite of all the others. It was obvious that, in just the little bit of time that she had spent with Kaelyn, she genuinely cared about her. So, I got up the courage to invite her to be our Primary Nurse and her response was perfect. "I'd love to. It would be an honor." Exactly what we NEEDED to hear.

Sadly, she is off until Friday. However, we did have another great nurse today. Also, we were able to speak with one of Kaelyn's cardiologists. So, we immediately asked her about the Tetralogy of Fallot. She said that it is nothing that we didn't already know. Just another term for her AV Canal defect and her small pulmonary artery. What a relief! Then, she also said that Kaelyn's ductus isn't completely closed yet, but she thinks that once it is, her pulmonary artery will be OK and she won't need a surgery until she is around 12 lbs to fix her AV Canal defect. Sweet! We are definitely hoping that will be the case.

They are slowly increasing her feeds, she is now getting a whopping 5 cc's (about a tsp) every 3 hours or so. A full feeding for her is somewhere around 35 cc's, so you can see she has a ways to go. She has been doing pretty good so they have been increasing them about 1 cc a day. She is almost 2 lbs, which is exciting. Its funny how much her little body has changed in the past week. She is keeping her eyes open a little more, which is fun. She is also a little wiggle worm when she's awake. We got some cute pictures of her today when she was squirming around. She's also got a pretty good grip, she startled her dad pretty bad when she let go of his finger and then quickly grabbed it again. It caught me totally off guard and made me jump pretty good too. Somehow she found out that scaring each other is one of the favorite games at our house.

(Kaelyn practicing her Kung-fu skills)

We were both so happy to hear the good news today, see her progress, and find some nurses that meet our needs. We just keep praying that things will continue to go well, and if not, that we will be able to make it through the rough times, again.

FEIST-Y

feist⋅y –adjective, feist⋅i⋅er, feist⋅i⋅est.

full of animation, energy, or courage; spirited; spunky; plucky: The champion is faced with a feisty challenger. Yep, That's our Girl!

Heart Defect

I mentioned in the first post that we found out about Kaelyn's heart defect. So, here is some more info. We have known for a while that she has what is called an AV Canal defect. It is a pretty serious complication that will require open-heart surgery when she is big enough to handle it. Click on the link if you want more info.

In addition to that, we had a few echocardiograms done on Kaelyn while she was still in the womb. The cardiologists told us that they thought Kaelyn's pulmonary artery was about 1/4 the size it needed to be. This causes a problem because not enough blood can get to the lungs to pick up oxygen and then sent out to the body. The issue with this surgery is that it needs to be done as soon as possible. Usually within a week after birth. It isn't open-heart surgery but it is still a bit complicated. The biggest concern with this particular surgery is that Kaelyn needs to double in size before it is even a possibility. On the brightside, though, another echocardiogram was done on her after she was born and they saw that the artery isn't as small as they had thought. So, they put her on some medicine to help keep her ductus open (trying to buy some time and still make sure that she gets proper blood flow). A couple of days ago, they took her off the medicine and are waiting for the ductus to close in order to see what will happen with her artery. If it does ok, we will just have to wait for her to put on a lot of weight for her open-heart surgery. If it doesn't they'll put her back on the medicine and then we'll have to wait for her to put on enough weight for the less complicated surgery, and then more weight for the open-heart surgery. So, basically it is just a waiting game.

Now, in addition to the first two things, we just found out on Saturday that she has another heart defect called Tetralogy of Fallot. This one is a bit more complicated to understand, but the hope is that it will work to offset the AV canal defect.

So that's where we stand right now. Kaelyn is looking pretty good and putting on some weight so we are happy about that. We just keep hoping and praying that she and her little body will be able to make it through all of the challenges that she faces.

Kaelyn Ruth

Kaelyn Ruth was born on June 13, 2009. She weighed in at a whopping 1 pound 11 ounces and was 13 inches long. She wasn't supposed to come until August, but she just couldn't wait. We have started this blog to help keep in touch with all of our family and friends that are interested in the progress of Kaelyn.

At our 20 week ultrasound we found out that Kaelyn is a girl, has a heart defect, was measuring small, and has down syndrome. Not exaclty the news that we were looking for. For the next 3 months we were trying to best prepare ourselves for what was to come. We knew that she would need a surgery to fix the defect in her heart and then later found out she would need one even sooner to fix her pulmonary artery. It seemed like with every doctor's appointment the outlook for little Kaelyn got worse and worse. But, we held strong and kept hoping for the best.

Eventually we were to the point that we were monitoring the progress of Kaelyn twice a week for about 4 1/2 weeks. Then, on Saturday June 13, 2009, Jeana woke up with some pretty bad abdominal pain. So, we rushed up to the hospital (normally a 45 minute drive.....I got us there in 30) and after a bunch of tests found out that Kaelyn needed to be born. We also found out that Jeana had a severe case of preecamplsia (that just appeared out of nowhere) along with a disease called HELLP (it messes with the liver and other stuff). The only way to get both is being pregnant and the only cure for both conditions is delivery of the baby. So, an emergency c-section was started and within an hour our baby girl was born.

We really had no idea what was going to happen with Kaelyn because of how small and early she was. So, we were extremely happy to hear that she was crying, breathing on her own, and stable in the NICU. Once she was stable, I got to leave Jeana on the operating table and go see Kaelyn. After a few pictures and some watery eyes, I went back to explain everything to Jeana while they finished sewing her up. After a little while Jeana was able to go see Kaelyn as well, only she was still in a hospital bed.

At birth Kaelyn was in the NICU at the University of Utah. Then on Friday she was transferred to the NICU at Primary Childrens. Almost every one , if not all, of the nurses that have cared for Kaelyn has told us that she is a "feisty one". We just smile with pride when they tell us that, because we know that is exactly what she needs to be. Hence the title of this blog.

I will be updating this blog as we get more information about how Kaelyn is doing. So please check back often and leave lots of comments. The biggest thing Kaelyn and we need are lots of prayers.