Finally home!

Kailey is finally home with us! We are so excited to have our family together under one roof. Now that my commute to the hospital is over I am slowly (very slowly) trying to figure out her real schedule. They had her on a 3 hour feeding time but she likes to sleep more than she likes to eat so in the short two days she has been home I have managed to already mess up the schedule they had. Oh well, at least I do pump every three hours because she is too lazy to even open her mouth. On Tuesday she has an appointment with her pediatrician and we should be getting some guidance (hopefully) or a referral to a pediatrician that specializes in children that have Down syndrome.
On Friday, we got the full report for the Chromosome test. I had hoped Kailey would be in the mosaic Down syndrome category but it only happens 1% of the time. She is in the Trisomy 21 category.
Kailey has been the delight of her siblings so now we need to protect her from the vast amounts of love she is getting and will be getting around here.

Report on Kailey

Today has been quite a roller coaster ride. We arrived at the hospital in time for her 9 AM feeding and I was ecstatic to see her taking a bath! That was her first one so I knew Dave might be disappointed since he has always given the first bath. However, for Kailey to be able to take a bath she has to be off oxygen. The nurse told me that sometime between 8 am and 9 am Kailey had taken her tube off her face and maintained her oxygen levels within range because the monitors did not beep once so the nurse decided to keep her off the oxygen. I was soooooo happy for this. Without the tubes Kailey nursed like a pro and even had 70 ml of more milk. I could not believe how much she had eaten. I left hoping things would stay stable. After the noon feeding Kailey had to be put back on oxygen because she was dipping too low for the doctor to feel comfortable. This was disappointing but part of the rollercoaster ride.
On the bright side… her nurse noticed that the drop in weight had been too much and almost impossible to have happened overnight so she decided to weigh Kailey again and she weighs 6 lbs. 13.9 oz so the low weight seems to have been an error! Either, the higher calorie diet was unnecessary or Kailey, somehow, gained about 6 ounces in one day (that would be a miracle but I know she so many people are praying for her and I know many of you fasted for her as well). I had a long discussion with the doctor about the alternatives we have at this point, so Dave and I will be making some decisions regarding Kailey in the next couple of days.
I don’t know what the rest of the evening will be like, but I am happy Kailey has eaten plenty today, had a bath, and is a very hefty preemie.

Kailey's News

Yesterday (Saturday) was a bit of a roller coaster and we are on the down ride so it was a difficult day. I was not able to stay in the hospital any longer so I left around 4 pm and came home to find beautiful flowers, cards and food. I rested for a little bit and decided that the best place to recharge myself was in the temple so Dave and I went to the temple and spent some time there. From the temple we went back to the hospital. Kailey did not do as well as we had hoped. Her weight has dropped (6 lbs. 8 oz), her oxygen had to be turned up again and she did not really want to eat much. At one point it was mentioned to me that if she did not eat what is needed twice in a row she would have to go back to the IV. I was also told that if she does not off the oxygen she would have to come home with a monitor and an oxygen tank and she may be on it for a few weeks to a few months. On the bright side, I was able to get her moved from the far corner to the front right where the windows are………… so, for your viewing pleasure her beauty can now be admired through the window by all whom so desire!
We have asked many of you to pray and fast for her and are grateful for your willingness to do this. I know many of you have our family in your prayers and we are so grateful for your faith and concern. It is always helpful to know so many people care about us.
As I mentioned, this is a bit of a roller coaster ride. There are those ups and the sharp downs. We went this morning (Sunday) to see Kailey and to nurse her. We found out that here billirubin had increased quite a bit but it is still within the high normal range, her temperature had dropped and she was starting to become borderline before putting her in a warmer again. It was advised to put her back in phototherapy. I requested that this procedure be done later, because she gets weakened by it and once in the incubator she can only come out twice a day. The doctor has agreed to delay phototherapy a bit longer.
Some mom has an issue with her baby so they wanted to bump Kailey out of the coveted front window space to another area, luckily I was there and told them she had to stay by the window so they are moving another baby so she can stay by the window but it will not be the same spot where she was. Since Kailey ate well today the doctor said that the caloric intake would be increased by fortifying my breastmilk or the formula she drinks so I am glad that she will not need an IV as of this morning.
We took some pictures of Kailey yesterday and today. She does have her eyes opened (finally) in some of them.