Well it's been quite a while since I have posted. Juliana is doing really well. She is up to six and a half pounds this week and looks great. She is successfully taking 8cc and hour continuous and gets three feedings by mouth a day. It's such a small amount in a large bottle but she drinks it like a big girl. It takes her about 10 minutes to finish an 8cc bottle (that's about 1-1/2 teaspoons), but she loves every minute of it.

We still don't know when her surgeon would like to perform her surgery. This is the most frustrating part of this whole experience. We are just waiting indefinitely. I am hoping that it will be soon but I am afraid that it probably won't. We did discover this past week that Juliana's bones are significantly demineralized (lacking calcium). This bit of new information doesn't really surprise me at all. Despite the fact that she was born extremely early, she has spent quite a bit of time on Lasix which tends to eat away at the bones. The x-rays show that she did have a few rib fractures previously but they are now in the healing process and fortunately that is all that they found. So in order for her surgery to happen she needs to be off the oxygen, her bones need to be stronger, her bilirubin needs to be lower and she needs to be bigger. She is definitely growing and her bilirubin has improved so much, but she still requires oxygen and it may be a while till her bones are stronger.

In the meantime we are just trying to enjoy the time that we do get to spend with her. Her big brother has become very attached and spends most of his time talking about going to Boston. He gets really upset when it's time to come home. This past weekend he told me to go home and that he would stay with baby sister. He now has his own doll with an ostomy and bag like his sister. He put tape on the dolls face so that it would look like Juliana. He feeds the doll with a bottle while I am feeding Juliana. I am so glad that he is handling this all so very well.

Thanks everyone for all your support. It means the world to us.

Eye of the Storm

The last couple of weeks have been so hard for me. Juliana is doing great, so great that all I can think about is taking her home. As you may know we have moved to the regular medical floor while we wait for her next surgery. This is exactly what we have been doing for the past couple of weeks, waiting. It's like the eye of the storm or the crest of a roller coaster. Everything is so calm but the anticipation just eats at your nerves. You know that at any moment you will be taking the plunge and the excitment will begin. I've never been on this coaster before and I don't know when is it going to end or even what to expect next. I don't know how bad the storm is going to be but I know it is coming. So for now I am trying to enjoy the calm (which is much harder than I ever thought). We still do not have a date or even a week that the surgeon would like to reconnect her intestines. She had another study done yesterday to see what's in between the two stomas. I do not have the results yet but I am hoping that this will put us one step closer to deciding on a date at least.

She has gone up and down on her feeds this week but fortunately not stopped. She had a bit of increased output from her ostomy bag which pulled us back a few steps. She went from 8cc per hour to 4cc and then increased to 5cc yesterday. She will probably go up another cc today seeing that her output yesterday was within range. On two occasions this past week she has attempted to take a bottle and failed each time. She starts to gag and then her oxygen saturation drops. I think every four or five days we will attempt to give a bottle feed and see if she can learn how to do it. I am sure that with time she will get.

She also had an eye exam yesterday and the doctor says it seems like things are getting a little worse. There is increased traction on the peripheral of the retina. Friday a retina specialist will be in to take a look also and decided if it's time to intervene and perform retina surgery to save her vision.

Overall she is behaving like a normal baby. She hates diaper changes, baths and ostomy bag changes. She also likes to sleep most of the day with awake periods scattered in between. She loves her pacifier and gets very angry if you take it from her. She has been lifting her head up off my chest occasionally while I hold her. She still likes to pull her cannula and feeding tubes out (even if you wrap her hands up she finds a way to get at them). The hardest part is seeing her doing so well and not being able to take her home. She has improved so much in the last few months and even more so in the last few weeks. I was hoping to have her home for Christmas but that is now out of the picture and I am hoping at least before my birthday (Feb. 5th). I am really happy that she is doing well regardless of when she gets to come home and experience life outside of the hospital.

Out of the ICU

Juliana moved to a semi private room this weekend and is looking fabulous. She is able to actually leave her room now (supervised of course). She can come out to the play room and also will be able to go for walks throughout the hospital. This great because her big brother Omar loves to spend time in the playroom. Omar has been a great big brother to Juliana. He is so gentle with her and loves that he gets to hang out with her and give her hugs and kisses. It was much easier visiting her now that Omar can play and visit at the same time.

On Friday Juliana had a hearing test done. She passed on her left but was referred for more testing on her right. Just like her eyes we will just have to keep a watch on it and follow up with another check up. She has been receiving a daily diuretic for months and this can also have an affect on the hearing. Her eyes seem to be okay for now. She is showing neither growth nor improvement, so the opthamologist will just continue to check her eyes weekly. Fortunately she is weaning off the diuretic and has gone from 2mg per kilo to 1/2mg per kilo over the last month.

She is now getting 7cc per hour of Neocate and is handling it pretty well. We did make a big jump today from 6cc to 7cc and I am crossing my fingers that she will tolerate this change. It still looks like it will be a few weeks till the surgeon is ready to do her surgery. So we will probably be spending Christmas in Boston. I would much rather her home but I am more than happy with the progress she has made so far.

One of the healthiest babies in the unit...

Juliana is doing remarkably well. It's almost hard to believe. I feel like I am waiting for something bad to happen. It's been almost four weeks since we arrived in Boston and everything is going so well. She is tolerating her feeds and is now up to 5cc per hour. At about 12cc per hour she will be considered at full feeds and will be able to come off the TPN. So we are almost half way there.

It even gets better... Juliana is off the High Flow Nasal Cannula and is now on a regular cannula. This is just a plain nasal cannula that delivers oxygen. Unlike the High flow it delivers just straight oxygen at a much lower pressure. Since she is not requiring so much support and is requiring less care she is eligible to move out of the ICU to a regular care unit. The nurse said to me that Juliana was one of the healthiest babies in the NICU and I almost cried over the phone. To hear that my child is one of the healthiest after being the sickest (not one of the sickest but the sickest) baby in the hospital was unbelievable. We have come a long way and I am grateful for everyday. I just hope we can bring her home before Christmas.

"Preemie Steps to Baby Steps"

Very early in our NICU adventure a nurse told us we would be taking "preemie steps" throughout our days in the NICU. Boy was she right. Since that day this has become my motto. It's always been preemie steps forward and then big giant baby steps back. Now I am actually feeling like we are taking baby steps. Still not very big ones but none the less they are steps in the right direction. Juliana has done a fantastic job with her feeds. She is up to 4.5 cc per hour continuous and so far has not started to dump. I feel like I am waiting for something bad to happen as that is the usually pattern but I am happy that my fears have not come true. Juliana is doing better than I ever expected.

Thanks as always for your prayers and support.

My Yellow Baby

Sometimes I just don't notice how yellow Juliana really is. I have been going through her abundance of photos that I have taken throughout her life and actually started to notice the progression of her TPN associated liver disease. I am so surround by Juliana and all of her issues that they almost seem normal to me. I met a little boy born 2 days before Juliana and it really hit me. I started to think about the long road that we have been traveling almost blind folded never knowing what is going to happen next. The progressions and regressions of her health have left me worn out and completely exhausted. Then I think about the "wonderful" doctor who told me and my husband that we should just abort because the road to come would just be too hard. Boy am I glad that we didn't listen to him. It hasn't been easy and we don't sleep much. We live in constant worry and sadness that our little girl is so sick. Would I go back and change the decision we made on July 10th to do everything possible to save our little girl? Absolutely not. She is the most amazing little girl I have ever met. With every challenge she perseveres and continues to thrive. Seeing her now and knowing where we came from really lets me know that we made the right decision.

Juliana is continuing to improve on a daily basis. We made another upgrade in her respiratory and she is now off CPAP and on a High Flow Nasal Cannula (HFNC). This works about the same as CPAP by delivering a constant flow of air and oxygen through her nasal passage. She started off on 7 liters on Friday and is now on 5 liters. She may within the next day or so move on to just a regular nasal cannula which will still deliver oxygen and air through her nasal passage just with decreased force. She has also started feeds on Sunday. She started off with 1cc per hour of Pedialyte. Yesterday after about 24 hours on pedialyte we switched her to neocate which is very basic easy to digest formula. She has been on Neocate since she has had her ostomies. It's been a few weeks so I am really hoping the she will be able to tolerate her feeds. Even though the Omegaven has bought us more time, our goal is to get her up to full feeds and off the TPN as soon as possible. The surgeons still have not given me a time frame that they think would be appropriate to consder her reanostomosis. So for now we will just watch how her feeds go and continue to ween on her respiratory support. She has made really good progress in the last two weeks and I couldn't be happier. We have really come to appreciate the little things in life that many people often take for granted. Please continue to keep Juliana in your prayers.



Look I have hands...











My big brother Omar.



My Daddy is so proud of me...

Extubated Again!!!

Juliana has been extubated again. Yeah!! She is now on CPAP which to me is a major upgrade. The ventilator is no longer giving Juliana breaths. It simply supplies constant pressure to keep the air ways open. Juliana has to do all the work. Yesterday she had her new broviac line put in so she is now receiving more nutrition from her TPN. The plan is to get an upper GI study done again so that the Doctors at Children's can see what she has going on in her intestines. Even though she had one done at Yale I think it is great that we will get a second opinion. After the study the doctors will determine if she is ready to start feeds through her belly. I am so anxious to get it done but it's best to wait a few days to see how Juliana handles the CPAP and if she may even move on to high flow nasal cannula. I also have to keep in the back of my mind that this may not be a permanent move as it was done only about an hour ago, but I really think she will handle it just fine as her vent settings have been so low over the last few days. We are rollilng right along and I can't wait till Friday when we can lay out an actual plan for Juliana coming home. I am sure it will still be months from now but just to set a course of action and some goals is a big step for us.

Now for some more pics of Juliana....

My Halloween Costume... A Pink Peanut M&M.

Wrapped up tight so I don't pull out my tube.