So our first real week home has been incredible. Karter is such an awesome baby! She is though just that a baby....so yes we are exhausted. We have to keep a rigorous schedule of feeding her every three hours due to her weight, which means that we have our alarm clocks set up to remind us every three hours that we need to feed her. She already would probably sleep a good five hours at night if she did not have to be woken up to eat. This week has been full of doctors appointments! On Monday we went and did a weight check and she weighed 5lbs 11oz which was up from her last weight check. So hopefully we will keep that trend of gaining weight! We also meet with the special needs nurse on Monday and she was so much help to Jeremy and I! She was full of information for the both of us that will hopefully help us along this journey with Karter.
On Wednesday we went to the audiologist/ Ear Nose and Throat doctor to have her hearing tested since they did not test it at either hospital. Her test came back negative/inconclusive. The doctor was not able to get a response out of either ear. This could mean several different things. First of children with Trisomy 21 (downs) are known to have small ear canals and due to that they can hold fluid in their ears several weeks after birth. This fluid could have caused the unresponsiveness in her ears. We go back this coming week to be retested and if she can not get a responsive through her general test then we will be tested a second way which is a little more complicated but can yield better results for us to get a more accurate picture of what she can and can not hear. We are still praying that the unresponsiveness was due to the fluid and that she does have full hearing capacity.
On Friday we went to the endocrinologist which is a genetic doctor to asses everything about Karter. When we got there they took all sorts of measurements and asked me about a hundred questions on my pregnancy and our family history's. She then went over everything that I needed to know about Downs and how a child can obtain the extra 21st chromosome that causes down syndrome. During this time I did learn that about 95% of children with downs have a type of downs that is very random meaning that neither parent contains any other factor that may attribute to Down Syndrome. The other 5% of children that get Trisomy 21 have a type that is still random but one of their parents may contain a small glitch in their chromosomes that can attribute to their children having down syndrome. She was still waiting on the chromosome report from Children's to analyze so that she could tell us what kind of down syndrome Karter has. Once these tests are in and analyzed we will be sure to post a more detailed report.
We also found out on Friday that Karter's new born state report came back with some more abnormalities. The state requires that all children are tested for certain things right after birth. One of these things is Cystic Fibrosis. Karter had an elevated Trypsinogen level which is relevant in children with Cystic Fibrosis. Therefore we had to be retested for this elevation on Friday at the hospital. Although it was elevated there is still hope that it could be nothing, for a lot of infants have an elevated level on their first screening which is why we were required to do a second screening to check to see if the elevation was still relevant. PLEASE pray that her next test comes back with good news and shows no elevation. The results for this test can take almost ten days to come back so as soon as we know we will re-post more information!
To say the least this week has been an up and down week. I am generally happy that we are home but all of these doctors appointments have took a toll on my emotions. I just dread it when the doctor comes in and says the word "well" because most of the time that means that they are about to lay some bad news on you. I am so tired of bad news!!! I am trying to concentrate on all of the positives...such as her being home and maintaining an excellent oxygen level, gaining weight, sleeping well, and other great strides that she has made to postponing her heart surgery! The longer we can wait the better chance that they will be able to repair everything at once with no complications. We go back to the doctor Monday for another check-up on her weight and oxygen level so I just pray for good news then!
We ask that you continue to pray now for not only her heart but also for her hearing and Cystic Fibrosis test. I know that the good Lord will see us through all of this and with your prayers I just know we can create miracles. Karter is going to touch and teach everyone she meets! She was given to us to change this world one person at a time; she already has touched so many hearts and led many people back to the Lord through prayer. She generally is our little angel!
Love,
The McHams
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