Kailey's Progress

Today I feel very tired and almost exhausted. I went down at midnight to deliver a bottle of freshly expressed liquid gold (also known as my breast milk) and the nurse told me that the baby had lost some weight and was at 6 lbs. 14 oz
In the morning I asked that they take the catheter out of her hand (she wacked herself on the face with the connector that was hanging off of her hand) and they did! So nothing is poking at her anymore. She is no longer taking antibiotics, her oxygen level is at 40 cc and she started at 150 cc. The goal is to turn it off so she is getting close. Dave and I met with the doctor and she said that Kailey's progress was amazing and it has surprised her. She is very surprised at how well she eats, how fast she has moved in the oxygen and how well she responds. They are still trying to figure out how much oxygen flow she needs (the reason she has it is because she has pulmonary hypertension) and there may be a possibility of sending her home with an oxygen tank in case she gets stationary in her progress. They tried lowering the flow again but it was too hard on her so I hope that in the next couple of days they can lower it more as she adjusts to all the changes she is going through so fast. The doctor is going to take a look at the baby’s belly button because it appears to be an umbilical hernia but hopefully it is not one that will require future surgery. The doctor also told us that she received a preliminary summary on the chromosomal testing and that the full test is still in process and full results will return next week. The preliminary results are supposed to be very accurate and Kailey tested positive for Down syndrome. Next week we will know which kind of Down syndrome she has.
We also met with the case manager for the NICU and with a social worker regarding resources in our state for children with special needs. We did not get a lot from them but will be referred for some services that are available. I hope this helps us become better educated in understanding Kailey’s needs and how to help her achieve her potential and help her develop the skills she will need as she grows.
I was visited by a friend and family and felt well fed both physically (I got a yummy lunch and dinner) and emotionally. I feel the Lord is taking care of our needs at this difficult time and feel grateful for the support, prayers, calls and emails from friends and family. As I was walking in the scorching heat of the afternoon (taking a break to breathe some fresh air) I was thinking that what we have to do is to move onward, look upward and rise heavenward so it shall be done.

Kailey's Leaps

Kailey has made tremendous progress today. I went to feed her in the morning and found out she had been disconnected from the IV unit!!! I had a long talk with the neonatal doctor and she explained in great detail many of the preventive treatments (phototherapy, antibiotics, blood thinner, etc...) because I had requested a list of every single intervention done during a day and to take a look at the log; in other words I asked for nothing short of even knowing when she poops! I am sure they just love me down there.
During the phototherapy treatment she could be taken out of the incubator up to a maximum of two times in a 24 hour period. Needless to say access to her was very limited and even feeding time with her was restricted to no longer than 15 to 20 minutes.
By noon, Kailey was taken out of the incubator, clothed in a very warm outfit and put on an open air bassinet and her 9 hour test began to see if she could keep her own body temperature at an adequate level on a permanent basis and per my request (during my morning chat with the doc) she was moved to the least critical room in the NICU (closer to the window). Moving her to this room also included switching her oxygen instrumentation and was put on a new device.
When I went back to my room to get ready for being released from the hospital I was given a great gift. I was asked by my nurse if I would like to stay a couple of extra nights at the hospital so I could be closer to Kailey. I was so happy I just wanted to shout. So here I am, in room 286 in a quiet corner of the postpartum floor just a floor away from Kailey. I feel so blessed that I can remain close to her. A wonderful woman named Stephanie was also working behind the scenes to ensure I would get the hospital pump with the kit without having to pay the $270 they charge. I found it in my room when I came back from my nursing time with Heidi in the morning. She had worked with the NICU case manager on this and had even called the insurance company.
During my 3 pm feeding time with Kailey I found out she had done so well with the new oxygen device that they took down the level twice. So I asked again (I had already mentioned it to the doctor in the morning) if she could be taken to the bonding room to visit with her siblings and the doctor agreed. So right after her evening feeding she was able to spend some time with Ethan, Heidi, and Gavin. They were delighted to meet her for the first time because no one under 18 is allowed in the NICU.
I went down to feed her at 9 pm; she latched well and nursed for about 10 minutes. But she does like being burped promptly and frequently or she will stop eating all together. I am grateful for every bit of progress she is making and for being able to stay closer to Kailey a little bit longer. Below are some pictures of our little princess.

She's here!!!

Kailey Nicole Christensen arrived early (4 weeks) on July 14 at 5:30 am. She was a whopper at 7 lbs. 4 oz. and was 17.5 inches long. She is in the Intensive Care Unit and will remain there for a few weeks. Here are some pictures of her.