One step forward, two steps back

After 99 days in the NICU Adalee came home on Friday May 6th. Things were going great! All of us were adapting to having her home.  She quickly feel into a routine and was sleeping through the night;) Its a lot different with Adalee then a "normal" baby. Since she has a feeding tube shes constantly getting food so she sleeps alot because she doesnt have to wake up to eat and since she is always getting food she poops alot and the fact that she is missing half of her intestines things pass through her very quickly so it seem like were ALWAYS changing her diaper! Friday May 13th I woke up to Addy moaning, when I went to pick her up she was buring up. I took her temperature and it flashed 102.5. It took us less then 10 minutes to pack up all her supplies and rush her to the hospital. I knew right away that it was a centeral line infection and once we were admitted to the pediatric ward we were told that it was a line infection and there were three different types of bacteria that had spread into her blood. The doctor told us if we had waited to get her to the hospital it would have been really bad. I asked for the names of the bacteria to google them the first article was about several babies dying from this infection because they werent treated quick enough. Thats when I truely realized how medically fragile this little girl is. She spent another 2 weeks in the hospital and on may 26th she was home again! Addy has been doing good shes slowing gaining weight (she is in the 10th percentile for weight). Shes a 4 month old trapped in a newborns body. She is 9lbs, very alert and happy. She smiles all the time, coos, rolls over, and loves watching jamison dance. She enjoys swimming and throws a fit if we dont put her in the water quick enough! Jamison loves having her little sister home, she has so much love for addy that I know when their older jami will take great care of her. Right now jamisons favorite thing to do with adalee is burp her because she gets away with hitting her:) Today I recieved a phone call from our NICU doctor, he wants us to meet with a geneticist monday morning because something is wrong with her lab results and she may have a genetic disorder called methionine adenosyl transferase, its a rare inborn error of metabolism that causes high methionine levels in the blood due to an enzyme deficiency. Most cases are asymptomatic but severe cases with very low enzyme activity can cause neurological symptoms. So this is what we get to think about all weekend and on Monday Cody, and I will all go get tested to see if we are carries of this disorder, and Adalee will also have more test done. So yet another bump in the road.....To be continued