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

2 months old

Adalee is two months old now, the average NICU baby is only there for a few weeks. Shes one of the oldest babies in there. She is now a regular, everyone knows her and loves her! Its hard to watch all the families come and go and wonder when it will be our day to walk out of there with her and FINALLY take her home. Alot has gone on this past month, on January 21st Adee* went in for surgery #2 to have a central line placed in the chest. A central line is a more perminit IV that can stay in for as long as she needs it. While Adee was being taking to the O.R Jamison was able to take a peek at her little sister, she wasnt impressed! She now weighs 7lbs 3oz, shes up to 14mls an hour of formula through her feeding tube and getting 2 bottles twice a days with 28mls of formula. She seems to be doing well her poops are less frequent and thicker, but she still is not growing as quickly as they would like to see. We were told its a possibility that we will be taking her home the end of April, but before we get her home we have to learn how to take care of everything that is attached to her right now which includes, changing the sterile dressing over her central line, learning to hook up her IV fluids, and having to put her feeding tube down her nose into her belly. I have a hard time with the fact that I will have to shove this tube down her nose, I know it doesnt hurt her but she doesnt like it and I hate that she has to have it, but we have to do what we have to do. It seem like theres finally a light at the end of this long tunnel. I know its not going to be easy when she gets home, its probally going to be one of the hardest things we will go through as a family, but she belongs here with us!

*Adalees Great Grandma Dee asked if we would change the spelling from Addy to Adee! xoxoxo


                                                               


Her central line



One Month Old

Adalee is one month old today and is coming along slowly. We have  plateaued with her feedings where she was getting to much in her that she started having more frequent and runny poo so shes staying at 9ml an hour on continues feeds though a feeding tube that goes down her nose and into her stomach the Doctors have added something called Certo (its what you make jams and jelly with) to the milk to thicken it up and hopefully slow down the digestion process so shes able to absorb and process her food better. The good thing is she is growing she is up to 5lbs 6oz now and hardly fits into her preemie clothes, shes also starting to get a little personality! Today she had to have another blood transfusion. She is not creating enough red blood cells because she isn't getting enough iron in her diet (iron would be to rough on her tummy right now since she is still healing from surgery). All in all Addy is doing good considering the hand she was dealt. We knew we were going to get to a place where she couldn't handle the food intake but the Doctors weren't expecting her to even get to 9ml an hour based on the amount of intestines that she has left, so yet again she has surprised them with her progress!

2 weeks old

Today was a big day of firsts for Miss Adalee she started eatting today, she put on her first outfit and she was moved out of her icubator into a crib!  Its going to take some time to see how she does with the milk but were praying that she tolerates it and is able to digest it. She's only getting a little bit at a time so if she does good with this amount then it will keep getting increased. My parents were finally able to hold her last night and she gave them lots of smiles, my mom was scared by how small she was and all the wires shes plugged up to but you get use to it .Jamison has been drawing pictures for her that we can decorate her new crib with. Tomorrow she will be two weeks old, shes come so far in these two weeks and has exceeded all the Doctors expectations. Shes such a strong little girl and even after everything shes been though shes still a happy and mellow baby. All the nurses fight over who is going to take care of her because she is so easy going and low matinence. So again we wait to see how she does and pray that we get to bring her home soon!

Poo Poo Party!

Well it finally happened! Adalee is 12 days old and finally had her first poo poo! Im so happy that we were with her and even were able to record her pooping. It may sound weird but we have been waiting and praying for this to happen. Tomorrow, Cody and I will meet with her surgeon, doctors, and a G.I. doctor to discuss Addys progress, what to expect, and the long term care that she may need. Adalee has come so far in such a short time that its hard not to get our hopes up and believe that everything is going to work out but we know we need to take it one day at a time. Our nurse told us that Addy is now allowed to wear clothes but its becoming a challege to find something to fit a 3lbs 8oz baby, I'll probally have to take an outfit from one of Jamisons dolls. Jamison and my parents are coming back tomorrow and we cannot wait to see Jami. We've missed her very much (we missed you too mom and dad :) I'm nervous about our meeting tomorrow and what their going to tell us but regardless of what we're told we will be ok!

One week old

Adalee is recovering very well, so well that I was able to hold her today! It felt great being able to hold her, we feel useless when we're with her and all we can do is hold her little hand and talk to her. She was very alert today and was staring at us with her pretty blue eyes. The doctors are slowy taking her off medications and in a couple of days the breathing tube should come out. So now we are just waiting for her to poop and believe me there will be a celebration when this happens!!! Cody and I bought her a few outfits today, even the newborn size seems so big compared to little Addy but by the time we bring her home she'll be able to fit into them.

Meet the parents

Grandma & Pappy playing with Jamison

Grams & Jamison

Pop Pop & Jamison

Cody and I are very fortunate to have parents who would drop everything to be with us when we need them most. Right when they heard what was going on they grabbed what they could and got to as quick as possible. We are very lucky to have their love and support through all of this. We both have amazing families and wouldnt know what we would do without them!

Today my parents took Jamison with them down to South Carolina for a few days. Im missing her smiling face, her little giggles but most of all her hugs and kisses! I know she is in GREAT hands so it makes easier having her gone and gives Cody and I a chance to spend more time with Addy.

Addy is recovering well two days after surgery her belly was a little swollen today but she had her eyes open and was looking around. She is on a breathing tube but she is only getting room air which is very good and the only reason for the breathing tube is so she doesnt have to worry about anything but getting better. Were unable to hold her which makes it very hard when all we want to to is hold her tight and let her know that everything will be ok. So were counting down the days until shes in our arms!

Addy two days after surgery