Last two weeks update

Last night was pretty horrible. I was home for the night and went to the big freezer to see if if there was anything good in there and to my complete horror it was not working. My milk has dried up so I can't pump anymore and that freezer had all of my breast milk in it. 140 bottles of breast milk maybe enough for a week for Kennedy. Out of 140 bottles I was able to save 16 and the rest had to be thrown away. I was completely devastated. I was having a hard time dealing with the fact that I could no longer provide Kennedy with breast milk, but the fact that I had 3 months worth of milk in the freezer was helping. At least I was able to give her everything I could and it was a good start, but now all of it is gone. I am sure it is hard for anyone to really get how important it was for me and why loosing it was such a big deal. It was the only thing that I could do that I had planned on doing from the beginning- before Kennedy was even born. It was my last tie to a idea of a normal pregnancy. I fought for every last drop of that milk. My supply was low to start with and I had even taken a prescription to try to increase it, but pumping doesn't have the same effect as a baby at the breast.

This morning I called to check up on Kennedy since I am running a little late getting to the hospital and they said that tomorrow they are going to do a liver biopsy. Hopefully this will give us an answer to her GI problems and why she is not getting better from the jaundice. Here are the last few journal entries to catch you up on what brought us to this point.

8/5/08 Tuesday
I hate the NICU roller coaster. Last Wednesday Kennedy was taken off the vent. She is on an oxygen blender hooked to the wall, but no longer requires a machine to breath for her. Her feeds were also increased and by that Saturday she was up to full feeds in her jejunum. She was taken of TPN and lipids and also had her PICC removed. It made me feel so close to coming home I could almost taste it. Then they started her on bolis feed to test her stomach. Those only lasted two days before they were stopped because of high residuals. Monday they did an ultrasound to look at her stomach and where it empties to see if they could find something wrong. The ultrasound came back normal so today they did a gastric emptying scan. They feed her radio active dye and then use an xray machine that takes movie type images to watch how the dye moves through her system. So for the next 24 hours she is little miss radio active and has to have a special trash can for all her diapers and soiled linens to be properly disposed of. Also I have to wear gloves to change her diaper with seems pretty stupid to me since I am only touching a diaper and she had to eat the stuff. So the scan told us what we already knew- she has extremely slow motility and very bad reflux. Where a normal baby would have 50% of their food left in their stomach after an hour she had 95%. They have no idea why so tomorrow they are going to have the GI team look at her.

8/11/08 Monday

Today Kennedy is 3 months old. She weighs 5lbs 12oz and is 17.5inches long. Because of the results of the gastric scan the GI team came to look at her Friday and do an Gastric endoscopy. They used a little camera with a light attached to look at her esophagus, stomach and duodenum. They didn't see any blockage or webbing that would prevent her from moving food out of her stomach. What they said it looks like is a paralysis of the stomach. The stomach cant contract to push food into the intestines. They are starting her on a med whose side effect is to make people have an extremely upset stomach. They are trying to give her enough to make her stomach cramp up without giving so much that it will cause her to vomit. Also since being on full feeds and off TPN her jaundice has not gotten better so they did a HIDA scan. Its another nuclear med thing, but this time they inject the radio active dye into her and watch how it travels from the liver through the bile ducts. Basically it showed that her liver is either not producing bile or the duct is too narrow to let it pass. The GI team and the surgeons are reviewing her chart and are supposed to let us know where we go from here. In the mean time they are doing a ton of blood work.

8/13/08
So that brings us to today. All I know is they are doing a liver biopsy tomorrow and the rest I will find out when I get down there. For know keep us in your prayers.