Rolling!!!!

Finally Juliana has begun to roll. It's not a full roll, but it is definitely a roll. We have been working on this for quite a while. We first started with getting her interested in her feet. I was trying to get her to grab them with her hands since she adores her hands. She never really grabbed them but did spend a lot of time looking at them and kicking around in her new bouncy seat. One day during diaper change as I am trying to empty her ostomy bag she decides to roll to one side about 60 degrees. I was super excited to see her roll but not very happy with her timing. She seems to favor her left side (of course because the bag on the left usually makes the most mess) but recently has been exploring both sides. Our new goals are to make that 60 degree roll a 90 and then a 180. We have also been forcing her to spend more time on her tummy not sleeping. She usually cries and we try to make the best of it. She still is unable to lift her head and push her upper body up with her arms but we will get there one day. She has been very happy and enjoying her brother so much.

I have been carefully watching her urine output as it has slowed down a little. She had a little increased stool output after we started her on rice cereal once a day. It's really hard to tell when enough is enough. We stopped the cereal for now to let the stool output get back to normal volume and consistency. She's not over stooling but it is slightly increased which may be why her urine has decreased. This is exactly why I refuse to make multiple changes with Juliana. She is so sensitive to change it would be hard to tell what caused what. At least I can take one step back and then try again. In a couple of days I think we will try the cereal again but maybe only a 1/2 tsp. instead of a full one.

Boston to Yale to Home

So we went up to Children's in Boston for our regular clinic visit. Everyone was amazed to see Juliana. After hearing news about Juliana being on ECMO, many people thought that would be the end for Juliana. Fortunately that was not the case and Juliana is back and better than ever (so I thought). The visit went as usual and Juliana was fairly content after having her afternoon bottle. We discussed increasing her continuous feeds to a rate of 10ml/hr since she was doing very well at 9. After that we were granted permission to start Juliana on some rice cereal mixed with formula and maybe introducing some stage one fruits and veggies. We met with the infection control nurse and started a new ethanol protocol in an effort to decrease the chance of future infection in the line. It seems the surgeons want to wait a little bit longer than I had anticipated for reanastomosis. I actually like this idea better because Juliana will only get stronger with time and the stronger she is the less recovery time she will need. Her lungs are still very weak and will need time to mature. Since we had such a late appointment I decided to hit the road rather than wait for lab results to come in.

Of course this is the time that I get a call on the way home from the hospital. I looked at the caller id and said "oh no". I just knew it was going to be bad. The first question they ask is "how far away are you?" Once again her sodium level was dangerously through the roof. They asked us to come back and I immediately thought back to the last time this happened and all of the driving back and forth from Boston in the middle of the night. Trying to stay awake while driving the rest of the family back home after a 2 am admission to the floor from the ER was just not something I was prepared to do again. I was already half way home and decided to drive straight to Yale where her sodium levels could be safely brought back to normal and I wasn't risking my life driving home in the middle of the night and leaving my baby alone in the hospital for the night. My husband met me along the way, brought me an overnight bag and took the family back home so I could continue on to the ER with Juliana.

We made it to Yale went through the whole admission process which went pretty quickly considering the crowd that was present in the ER waiting area (which I never even sat in). The quickly set up up in a room and then the waiting began. I turns out Juliana has strict orders for no room sharing whenever we are at Yale. I particularly like this idea but it makes it hard to find a room when the pediatric floors are full. We eventually made it upstairs but this time in 7-2 with the school age kids and not 7-3 with the other infants and toddlers. At any rate the attendings at Yale are fabulous. They called Boston first thing and the nutritionists from both hospitals worked together on a new TPN order. I like going to Yale because everyone is so willing to follow Boston's protocols and they really keep me involved in the process. The other big reason is that it is much closer to home.

After re hydrating Juliana and getting her sodium back to normal, they started her up on her new TPN, did some follow labs, and we were headed for home on Sunday. While in the hospital we had some visitors from the PICU and 7-3. It turns out the Juliana has really made a name for herself at Yale. Hopefully this will be our last visit to the hospital till surgery time. We really need to tip the scales. She has spent more of her life in the hospital than at home, so our goal for the next year is to turn those numbers around. I am hoping my next post will be about something a little more mundane like sitting in a high chair.

Going to the Park

So today was my first attempt at bringing Juliana and her brother to the park on my own. Well things didn't quite go according to plan. I arrive home from work ready to go and Juliana's ostomy bags are leaking. So I strip Juliana down and begin changing the bags. While changing her bags Juliana is seeing how crazy she can make her mommy by pulling her nasal cannula down to her mouth and then sucking on it. I put the mittens on her and she is still pulling her cannula. Stuff the mitten with cotton balls and somehow she is still managing to pull her cannula. I then cut circles out of cardboard and stick them in her mittens. Juliana is so determined to suck on her cannula that she chews the cardboard through her mitten making it soft enough that she can get her fingers over the top and pull her cannula again. In the meantime big brother, Omar, decides now is the time to have a meltdown. By the time I get the ostomy bags secure and change her clothes, she is screaming her head off and still fighting me for the nasal cannula. Omar finally settles down and three minutes later this is what I see.

So much for going to the park. I guess I will just have to try again tomorrow when daddy is home.

Home at Last!!!

So we are finally home and getting back into the swing of things. The first night went very well. Everyone was very excited to have our baby back at home. Her brother couldn't stop giggling when we picked him up and he saw his sister in the car. I could tell Juliana was happy to be back at home when I put her to bed and she smiled and went right to sleep. She spent quite a few nights in the hospital fighting her way to sleep, so it was nice to see her comfortable again.

Juliana is stronger and definitely bigger than ever. She is talking (well baby talking) a lot now and her voice is so strong. She still is not sitting up or rolling but we keep up with our exercises. We are trying to get her interested in her feet but she is still mesmerized by her hands. It's so hard to believe that almost one year ago we started this journey. As she becomes more aware I begin to worry about how all of this is going to effect her in the future. I hope that we will be done with the long term hospitalizations soon. We have one more surgery to go which is causing some anxiety for me. I don't know if I can take another month or two in the hospital but the reality is that I have no choice. She needs to have this surgery or she will never get off TPN and be able to eat like a normal child.

Fortunately her lungs sound great. They actually are the best I have seen/ heard in her whole life. Too bad it took 12 days of rest on ECMO to do the trick, Now that we are home I am able to wean her oxygen and she is doing fabulous. We are taking it slow with only one wean per day and her oxygen sats remain in the high 90's. She is still grabbing on to her cannula and pulling it away from her nose whenever she can. When she does do this her sats drop into the high 80's which makes me very hopeful that she can come off the oxygen within the next month or so.

Now that Juliana is out of the hospital everyone wants to see her. We went to her pediatrician on Tuesday morning and will see audiology on Monday and then off to Boston on Thursday to see what our team thinks and what steps we are going to take next. I am thinking surgery probably in July or August, but her surgeon is unpredictable sometimes so we will have to just wait and see what he thinks.