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.

More pics!!

Me and my Grammy.

Cuddling with Lamby (actually Lamby is on Pacifier patrol)

Sleeping with my Daddy.

More cuddling with Lamby.

Just waking up after the long ride to Boston wondering where my clothes went.

'Amazing"

That is the only word I can think of to describe a number of things. One would be Juliana. She is the most amazing little girl I have ever laid eyes on (I may be a bit biased here). Two would be Children's Hospital Boston. Although I do struggle right now with the distance and have spent many nights (and days) in tears, she is in great hands. It's been one week since Juliana arrived at Children's and already miraculous things have happened. Juliana is back on the road to extubation (hopefully before she decides to take matters in her own hands). The nurses have been just wonderful. They are comforting and friendly and really try to understand our family situation. With little Omar at home and Juliana in the hospital I have really been torn between my two children this past week. Also financially, not going to work isn't really an option. I would love to just leave everything and be at her bedside 24/7, but that would mean that she wouldn't have a home to go back to when she is released, nor would she have insurance that has been gracious enough to cover her medical expenses without me chasing after them. Pulling her brother out of school also would not be very fair to him. We are doing the best we can to balance the needs of both of our children which has been very challenging with Juliana in the hospital. I am so grateful that I was able to gain some trust this weekend in the doctors and the nursing staff at Children's. Having that trust really makes it easier. I just pray that our stay will be short and sweet, but I don't want to get my hopes up to high. We still have many bridges to cross before she can come home.

This week we will have a sit down with the doctors and set a plan for Juliana's return home or to a hospital in Connecticut. I am more than willing to do whatever home care she may need and the doctors and nurses are well aware of this.

Well now for some pictures.

Breathing on our own (for just a minute).

Look at those beautiful bright eyes.

(A bit yellow but that's why we are here in Boston)

Taking a nap in our big girl crib

Content for the moment....

and angry the next.

Self Extubation

Juliana is doing very well. She has been trying to self extubate herself this week. It seems though that she might be ready soon. So for now we have to wrap her little hands up tight so that she will not pull her tube out. We have been able to wean her settings qite a bit this weekend and are working towards presure support only which means that the machine will not have a breath rate set. If she can do well with this then she may be able to move on to CPAP. Her last blood gas was the best we have seen in quite a while. Her CO2 was 55 down from high 60's and low 70's. Everyone was so excited to see this. I think this has a lot to do with decrease in her lasix (diuretic) dosage she is getting. I was quite worried at first because her support had actually gone up for a while but the doctors reduced her total fluids and are getting her nutrition under control. I am very happy about her progress.

Sorry there have not been many pictures lately but I have plans to post some on Monday. We have tons to choose from just not very much time to get them in the computer and online.