Kaitlyn has Trisomy 21 (Down Syndrome). As a result she has a heart defect and they are keeping an eye on her liver function as she has a blood disorder that is similar to leukemia. In baby's with trisomy21, this condition is transient (meaning it gets better on it's own)but it's a 30% chance that later in life she can develop luekemia. She had her first surgery to put a shunt in her heart on Monday night Nov 16th. She is still in the ICU. They tried to remove the tube in her throat on Saturday, Nov 21st but she didn't tolerate it well and so they put itback in. As long as she has the tube in her throat we can not hold her. The tube helps her breathe and is also used to suction her lungs which are wet with all the IV, blood transfusions and extra blood being pumped to the heart.
They did a cardio echogram on Monday, Nov 22nd and they said that the duct that closes in the heart after birth has reopened. This means extra blood is being pumped to the lungs from two sources. The shunt that they put in is supposed to be the only source as the duct is meant to stayclosed after birth. The doctor confirmed today that she will go for surgery today or tomorrow. The first surgery required an incision on the right, this surgery will require one on the left. I did ask thedoctor why they don't just allow the duct to continue to be the source They did a CT scan yesterday to check what the obstruction in her throat is...they have been having trouble suctioning her. At some point the tube keeps getting stuck. Today they confirmed that she has narrowing of her trachea ring. Normally they are C shaped but hers is a complete ring.
Despite all this Kaitlyn is a fighter. She has been stable although it is taking a little longer than the doctor's anticipated for her to come off the breathing tube. As long as she has the tube in she will remain in ICU. The good thing in there is that the she gets 24/7 hour care. The hard part is not being able to be with her all the time oras much as I would like to. I don't like the thought of her lying in the hospital on her own without us nearby...but we can't forget about Lauryn who needs us also. It's hard to be in two places at the same time! I will send photos soon, she is beautiful...she has the Chai blood. She looks like Lauryn when she was a baby...and reminds me the Chai's when we were babies, especially my brother because she has big eyes like he does.
After the c-section they whisked her off so Paul only got to take a photo and stayed with me...from the photo we knew that she had Downsyndrome. I had to stay in recovery for 6 hours because my oxygen was low. They poked me with needles for different blood tests because they were concerned that my low oxygen levels meant I had a blood clotin the lungs as I was on bed rest prior to delivery...(apparently this increases the risk of clots - also I didn't do any of the exercises the nurses recommened I do). In the end they couldn't find anything wrong with me and released me at 4pm...I hadn't eaten anything so after eating dinner Paul and I went to go see Kaitlyn. We were stalling because we were scared to meet her. But when we did go meet her for the first time we fell in love with her. There were up and down days at the beginning as Paul and I came to terms with the change this meant to our lives...and sometimes it still is hard...but we have chosen to not think too far ahead...otherwise it's overwhelming...a lot of her physical limitations will become apparent as she develops but for now we haveto rest in God's grace and goodness and trust in Him one day at at ime. Friends have been helping us by taking Lauryn for a few hours a day so that Paul and I can spend time with Kaitlyn in the ICU. Because ofthe H1N1 flu there is a lockdown and only parents are allowed into theICU. We did manage to get Lauryn in there one night and she met her baby sister for the first time...she cried when we left because she wanted to take Kaitlyn home...it made me cry too because her cry was so sad...I know that Lauryn is going to be a great big sister. I know that she is going to love and protect her baby sister fiercely. Although it's not what we would naturally have chosen, we know that inthe end that God will bring good through this and that He will give us the grace to make it through and raise her up knowing that we love herand that God loves her.Please continue to contend for her in your prayers so that we can takeher home soon and that she won't have another health complicationsthat will prevent her from coming home.
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