8 Weeks Old - ALREADY!!

Wednesday, October 8, 2008

So today Kennedy is 8 weeks old! I can't believe it - where has the time gone. In one way the time has flown by, however, in other ways it has felt like an eternity. So far there is no diagnosis for Kennedy except Cerebellur Hypoplasia. They are still trying to find what else is wrong with her. We have now moved down to the cell level. Kennedy is now being tested for Mitochondrial Disorders. The only thing that I remember about the mitochondria from college biology is that it converts the energy of food molecules into what powers most cell functions (it is something that is very very important). Kennedy is still jaundice. All the liver tests done last week have come back normal and her liver function tests are improving - they are still very poor, however, they were better then they were. Her blood pressure is still very high. Today her blood pressure mean was 75, the doctors would like it to be in the high 40's low 50's. It is better then it was when she first arrived at Loma Linda, however, it is still very high. For anyone who does not know what all the numbers mean (I don't) just know that Kennedy's blood pressure is higher then my blood pressure. She is currently taking two blood pressure medications and today the doctors increased the frequency. She will now be getting both medications every 8 hours instead of every 12 hours - hopefully that does the trick. The doctors (as usual) don't know what could be causing her blood pressure to be so high. Mitochondrial disorders do not have any affect of blood pressure.

Today was full of lab work and doctor consultations. Kennedy is being very closely watched for fear that she might need another blood transfusion - this will be here sixth (thank god for all you blood donors out there, without you Kennedy would no longer be with us today)! Today my Mom and I went to check up on Kennedy to see how she was doing. She looked pretty good seeing all she had been through the last two days. It was pretty hard for the nurses to get the blood from her for this test. It took them many trys. When all was said and done they had to derive the blood from one of her arteries. Her hands were pretty swollen and bruised but she is a trooper and nothing fazes her anymore. When my Mom and I left today Kennedy still was not showing any signs of needing a blood transfusion. She was not pale and was experiencing no d-saturation's in her blood oxygen level. However, she is really good at compensating for things she is lacking or needs - so that worries me the most.

Brian and I stayed home tonight to catch up on some sleep, however, I can't sleep (as usual). I am just worried that something will happen to Kennedy and it will turn into an emergency situation to get her a blood transfusion pronto. It is so hard to step away and trust that everything will be alright.

I received really good news today. If the doctors are able to get Kennedy's blood pressure under control and Brian and I learn to use Kennedy's NG tube it looks like we might be able to take Kennedy home in two weeks!!! Brian and I are going to be trained this weekend on Kennedy's NG tube (Nasogastric tube) we will learn how to insert the tube and how to check for placement. The NG tube will be used to give Kennedy her milk and 5 medications. For those of you who are not familar with an NG tube here is a little bit of information.....

• The Nasogastric tube is a thin soft tube that is passed through Kennedy's nose, down the back of her throat, through the oesophagus and into the stomach. The NG tube is usually held in place by being gently taped to the side of her face, near her nose.
• Kennedy needs this tube because she is still have trouble eating all her feeds - she is still a week sucker, however, she is improving daily
• The biggest concern is to check for proper placement. If the tube is inproperly placed and milk/medicine is put down the tube it could go into Kennedy's lungs and make her aspirate and in severe cases it could cause pneumonia which could lead to death for her. Placement can be checked by blowing a puff of air into the tube and listening to the stomach with a stethoscope. If you hear the air in the belly the tube is in the right place. As long as the tube is placed in the stomach everything is good to go.

The NG tube is only a temporary feeding aid. If she is not able to nipple all of her feedings in 6 to 8 weeks we will have to take her in to get a gastric feeding tube, or "G-tube", which is a tube inserted through a small incision in the abdomen into the stomach and is used for long-term interal nutrition.

From day one the doctors have been very pessimistic and negative about Kennedy and her chances of survival. Even now, they continue to tell me that she won't make it, how can they say that when they can't even find out what is wrong with her. All I have to say about that is that they don't know my little girl very well!!!! She will make it and her and I will come walking into their doctors office when she is 5 or 6 to say hi! I just want as much time at home with Kennedy that I can get. If god decides to take her away from us early, I want her to be at home with me and Brian as long as she can. I am filled with mixed emotions about taking Kennedy home. I am so anxious! I think the night times will be the worst. She will be home with no monitors, nothing to beep and warn us that something might be wrong. I think Brian and I will have to learn to sleep in shifts - hahahah!!! I really think she will thrive in a home environment. The most important thing to Brian and I is that she is home with us. We can finally get back to a "normal" life. Brian and I will have a lot more on our plates then most parents do but I think we are both very capable and confident in our ability to take care of and support Kennedy. I know it will be stressful but we have each other and really really supportive family and friends.

(Above: "Hello World".....Kennedy is really beginning to focus her eyes alot more.)

(Above: Kennedy sticking her tongue out at the camera)

(Above: Daddy looking really tired - your the best Brian, I don't know if he realizes it but Kennedy is so comforted by him)

(Above: Oh no, we have a drama queen on our hands - Could this be early signs of Ashley 2....if that's the case, watch out world)

(Above: Kennedy knocked out in daddy's arms after her feeding)

(Above: Our beautiful sleeping beauty)