Tough Decision

Alyssa continues to go up in her feeds and appears to be tolerating them. She is now at 18 cc's per hour drip and 30cc's (1 oz) every 3 hours by bottle. Her goal is 35 cc's per hour. So we are only 7 days away from reaching goal. She loves to eat and get's mad when she is done with her bottle because she wants more. However, it is everyone's fear that once she gets to goal she will only maintain her weight versus continuing to gain. Like she did last time.

NJ and I have made the difficult decision to give Alyssa a Hickman line. http://en.wikipedia.org/wiki/Hickman_line This will require a minor surgery to have it placed and then again removed at a later date. This will allow us to go home with TPN and give us a safety net and guaranteed a set amount of calories and nutrients. It will also allow us to complete the final portion of her feeds at a slower pace. We believe that it will also give her an additonal boost to gain even more weight. Our doctor dosen't believe that she will need this more than a year. We are hoping that it is 6 months or less. This has been a very difficult decision but we need to do what is best for Alyssa. We don't want her to get in the same position she was around Christmas. She was way too skinny. She is 10 lbs 2 ounces now and looks so much healthier. The doctor's have started condensing her TPN sessions so that she will not have to be hooked up to it all day. Our goal is to have it only at night time for about 12 hours a day. We will have to get 3 days of training on how to care for her line and how to hook up her TPN. It will be very stressful but it will also be nice to be home. We are aiming to have the line placed Friday. So we potentially could be home by next Friday.

Feeling Better

Everyone seems to be feeling better. Even though Alyssa tested negative for Rotavirus, the doctor's think she caught some type of bug since my parents and I got it too. The GI specialist came to see Alyssa and said that since she is short gut, it is going to take 4 to 6 weeks for her intestines to recover. So it looks like the best option for us to get out of here anytime soon would be to have her get the Broviac line and go home on TPN (no lipids though which is the most damaging to the liver) Not what we wanted, but we are leaning towards it because we want to go home and don't want her to catch anything else and have more set backs. We still have time to make a decision and have many more questions to ask.

Set Back

Today Alyssa was put back on TPN and her rate was decreased to 15cc's per hour plus her 20 cc's bottle feeds every 3 hours. She started stooling too much and we are not sure why. It could be that she was not tolerating her feeds or she could have a virus. Because yesterday I became very ill and was throwing up and "other stuff". Next, the grandparents got it. So we think she is fighting off the sickness. She has also been fussier then usual. Unfortunately since we are all sick Alyssa is at the hospital by herself, which is just tearing us up. We have never left her by herself for more then twenty minutes or so to go and eat.

10 Pound Baby!!

Alyssa is finally 10 pounds and continues to gain weight. We are very excited. They have increased her feeds to 21 per hour plus 20cc's by bottle every three and was taken off the "TPN and Lipids" yesterday. (no iv nutrition!!) I guess our goal is between 26 and 30 this go around. It is very common to lose a little weight after coming off TPN but I would love her to continue gaining. She has increased her pooping a little bit, but we are half the amount of when we came in. So it is still okay, but we are a little scared about that and have voiced our concern with the doctors. They fully understand and we may only increase her feeds by 1 cc versus the 4 we have been doing a day.
Things are looking good and actually the best she has ever done. Let's all keep our fingers crossed and keep praying that she continues on this path. No more set backs!!

Smiling Baby

Feeding Tube Back In

Today Alyssa got her feeding tube back. She is getting 5 cc's per hour on top of her 20 cc's every 3 hours. This seems to be satisfying her hunger some more. She seems to be tolerating her feeds. Alyssa has been only pooping once a day, which is a HUGE improvement and a great sign!! We continue to move onward and upward. If she continues to do well, she will be advanced 2 cc's in the morning and 2cc's in the late afternoon. At this rate and if everything continues going well, we potentially could be going home mid next week. She gained a little more weight, and is now 9 lbs 11 ounces. Let's keep our fingers crossed.

Advanced To 20 cc's Every 3 Hours

I was advanced to 20 cc's every 3 hours today. The only thing is I want more. I love my "Monkey Juice" and can't get enough of it. My Surgeon is suppose to decide what the next steps are going to be. Hopefully it is more "monkey juice".

Now Eating

Alyssa's Upper GI test came back showing no blockages and her Doctor was very pleased with how everything is healing. So, good news there are no blockages, bad news, we still don't have an answer to why shy was throwing up and had the air in her bowel.

Surgery went well on Monday and she started eating. She was very excited. She is so excited she can't keep her head still to get the bottle in her mouth. They started her off with 5cc's every 3 hours and have increased her now to 15cc's every 3 hours. After we reach 20, I believe they will reintroduce the feeding tube. I really wish we could go without the tube. She looks so cute without it!

Alyssa's surgeon is wanting to consult with a GI Specialist to try and decide what the next course of action should be with Alyssa. Stay tuned. It looks like we will easily be here another 3 weeks.

Here are a couple of pictures of Alyssa hanging out with Daddy watching Basketball and Football. She is such a Daddy's girl! Through all this, she is still happy and full of smiles.

6 More Days Of No Food

Alyssa is not a happy camper. She is very upset and very difficult to console. (I would be though too.) We unfortunately received negative results for the viruses. So, her diagnosis is leaning towards not tolerating her feeds/formula. Her surgeon is starting to agree with us now that it was caused from switching her formula. Her bowel just did not like the change and fought back. So we Alyssa at least 10 days with no food and then slowly start her back on feeds. The doctor is wanting us to think about going home with a Broviac, which is a more permanent IV. We will have an X-Ray tomorrow to see if her bowel is healing. Hopefully it is so that she can start eating. We are also going to push the doctor to do an upper GI test that we have been talking about sooner then later. If it shows that her bowel is not contracting and is narrowing, we will have to have another surgery. We would rather do it now while she is already not eating rather then start her eating and then find out that it isn't working properly and take her off foods AGAIN.

BACK IN THE HOSPITAL

Alyssa was admitted back into Children's Hospital on Friday night. We called the doctor because her stomach was getting large, she threw up again and had a little bit of blood in her stool. With her episode on Christmas Eve and now blood in her stool, her surgeon felt it was time to take a closer look at her. While in the emergency room, Alyssa threw up again. They tested her puke and found blood as well. An X-Ray was taken of her belly where they found air in her abdominal wall. The Doctor's have stopped her feeds completely and she will go without food for a minimum of 5 days to give her bowel a rest. Then we get to start over on her feeds. Saturday Alyssa was given a new PICC line and started back on TPN so she can get her nutrients. She also has the NG tube and is having all the contents from her belly drained. (Just like before her surgery.) We are not sure why she has air in her bowel. It could be a reaction to the formula change. They are treating her for a possible NEC infection.

Be sending happy thoughts and prayer our way. We want to get back home.