Still Working on the Wean

So tomorrow will be the end of week 2 of our wean schedule. Everything seems to be going well. She has tolerated 1/2 liter for the last two weeks just fine. I am not totally convinced that a dropping down to 1/4 liter is going to go as well. The only way to find out is to try it.

We have also met our goal with the TPN schedule. When we first brought Juliana home we only had three hours off a day from the TPN pump. So she was infusing for 21 hours a day. Now just over a year later we are down to 12 hours a day. Now that she is older this is especially important. She is able to move around a bit more without having an extra pump to drag around. It also decreases the amount of times per day that I have to access her line. We hook both the TPN and the omegaven up at night before bed time and instead of disconnecting the omegaven first and then the TPN hours later, we can disconnect all at once. I try to schedule our in home labs to coincide with our disconnect time in the morning. The risk of infection increases each time the line is accessed.

Feeding therapy is coming along very slowly but we are noticing some progress. She continues to fight off anyone or anything that comes near her face. Recently she hasn't been fight as much as before. It is very small progress but definitely an improvement. She allows finger play in the mouth more than she will with spoons or the NUK brush. I have stopped focusing on the amount of food we can get into her orally. If we can get her to at least tolerate any type of mouth stimulation we know that this will help her more in the future. The stimulation will aid in her speech progression and help her to learn how to control the food. She still does a lot of gagging when it comes to actually swallow food. Part of this in my opinion is due to the NG-tube (Nasal Gastric tube runs up the nose and then down to the stomach for feeding). At this point we have no other choice. The only way to get rid of it is to have the surgery for the reanostomosis and at that point the surgeon will put in a G-tube. The G-tube is a gastric tube used for feeding that is inserted through an incision direct to the stomach.

As the days go on I get more and more anxious. I just want to have the surgery in the past. I am more than ready to start moving forward towards getting Juliana off the TPN. Whether or not she will actually get off TPN is not a guarantee, but we could at least explore this possibility. What I dream of even more is to exit the ostomy world. Everyday the challenge of caring for Juliana's ostomies is increased. She is much more active and keeping bags on her for more than a day is near impossible. Couple this with the fact that we are only allowed enough supplies for one bag change a day and we find ourselves in a very stressful situation.

So as much as I dread having to go back to living in a hospital, I know that this upcoming surgery means some very big changes in our lives and for the better. For now we just continue to work on weaning down the oxygen to get her ready for surgery. Praying for no surprises in the upcoming months.

Finally a tooth shot!!!! The first one is not the greatest but I did the best that I could. She has four on the top and another four on the bottom.

Let the Weaning Begin!

It's finally March and we have the "okay" from the pulmonologist to start weaning Juliana off the oxygen. We are hoping to convince the surgeons to go ahead with the surgery even if she is still on oxygen. I am so glad that her pulmonologist feels the same way I do. It is pretty unlikely that Juliana will be completely off by May or June but it is more likely that she will be on a very low flow at night only. She is way over due for this surgery and we both would like to see it done as soon as possible. I understand the surgeon's desire to wait till she is completely off but another year of ostomy's and the ng-tube is not ideal.

I am very excited to see what her belly is capable of when it's all back together. It's very hopeful that she will be able to get all of her nutrition enterally and with some time she could even come off the TPN. The central line (Broviac) puts her at a high risk for infection and other complications like clots and air embolisms. If she can come off the TPN we can pull the line and dramatically reduce the risks. We have been very fortunate to be infection free for the last 10 months.

This will also open the door up for more babysitter options. Currently we only have one babysitter qualified to care for Juliana without my husband or myself present. It really limits the things that we can do like working or having child free time together. Fortunately our one babysitter (my Mom) has been really great and will even spend the night when we need her.

So the plan is to turn her down to 1/2 a liter for two weeks. If all goes well we are then going to drop her down to a 1/4 liter for another two weeks and then we can try shutting it off completely for two hours at a time. Juliana typically doesn't like to follow plans and usually does things her way, so we will just have to wait and see if it works.

We have also changed her formula to Peptamen Jr. It offers more calories and she actually tolerated the trial run. The best part is that is comes ready to serve in a can which means no more mixing, no more powder and no more bottles to wash. What is nice for Juliana is that it comes in flavors. I am hoping that this will help with feeding. It tastes much better than the neocate which may be a good incentive for drinking from the cup. Of course that is if I can get the cup anywhere near her first (still a work in progress).

It so wonderful to think about where we've been and how far we've come since that sunny afternoon when my water broke and my whole life changed. Many people may think how unfair that she's had to go through so much in her young life but I say how blessed we are to have made it through.

Pictures!!!

Juliana loves to make a mess and throw her toys around....

She is just tickled with herself when she is standing....

Say cheese and she really does it.....

Juliana with her big brother...