Toothless

Ethan’s front teeth have been a little loose so we expected them to fall out soon. Yesterday I noticed that one of them had turned to a brown color so Dave told me that the tooth had died and it needed to be pulled out. So David decided to take things into his own hands and play dentist. I heard some crying, shouting, yelling and gnashing of teeth and the tooth did not come out! So it took Dave a couple of hours to gain Ethan’s confidence to let him pull the tooth out. Ethan did let Dave pull the tooth out and there was a lot of crying. Glenda the tooth fairy did come by and picked Ethan’s tooth and left a little cash for him.

Nee hao!

Nee Hao!
Ethan started his Chinese boot camp today and it will last about 9 days. I was thrilled to make his first lunch box meal. The kids were divided into sun and moon classes. Ethan is in the Sun class. His day is half Chinese and half English and he happens to be in the class that has Chinese in the morning. So he got a dose of Chinese right away. We were greeted by his teacher and she kept talking to him in Chinese, he took a step back so I gently pushed him forward. Somehow he understood what she was telling him and found the desk with his name on it. I was amazed! Then I realized I had understood her too! He had a great time today and learned two colors in Chinese, red and blue.
Kailey had an appointment with her pediatrician today. She has grown 2 inches since birth and is now 19.5 inches. She has gained 6 ounces since she left the hospital four days ago and weighs 7 lbs. 8 ounces. Her head is 1 centimeter bigger. So far she is in excellent health and that is a huge relief! She does suffer of nursing laziness! She can’t keep herself awake for more than two minutes or sometimes won’t even open her mouth so nursing her is a challenge. Thank goodness for electric pumps.

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.

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.