A Holiday at Home and a Little Clarification

Finally Juliana will be spending a holiday away from the hospital. Every holiday since she was born has been spent in the hospital, so when we went to clinic yesterday I was almost positive that she would be admitted again. Juliana didn't sleep the whole way up to Boston so I knew she would be so cranky and she was up until the moment that her one of her doctors came down to the cafeteria to tell us that her labs came back normal and we could go home. I put her down in the stroller so that I could eat and she was just grinning from ear to ear. It was like night and day. I know she really doesn't understand what is going on but I think the stress that was lifted off my shoulders must have signalled something to her. She went to bed last night and woke up this morning with that same happy smiling face.

It will still be a couple of months till she is ready for surgery. She really needs to get over her respiratory illness and hopefully off oxygen before she will be ready for surgery. She is continuing to grow but at her own pace of course. The doctors would really like to see a boost in her weight gain. We really don't want to get her too far behind so once again we are going to increase the calories on the formula and the concentration on the TPN. I hope this works. It's really hard to tell people how old Juliana really is when she wears newborn clothes. For her actual age she should be almost twice her size in weight and for her adjusted age she is about 5 pounds shy of the average. Regardless of what the charts say though we are just happy she is growing. I am very positive that after her surgery she will start packing on the pounds.

For those of you who may not really understand, Juliana lost quite a bit of her intestines (about 22cm) 7 months ago. She had a disease where some of the tissues in her intestine had become necrotized (or dead). These tissues had to be removed and she was left with about 20-30 cm of intestines. When we eat we use the whole intestinal system to process foods and absorb the nutrients we need to live and grow. Juliana's intestine we left in three pieces. She uses a very small portion of her intestines to process her formula and the rest is unused at this time. She receives a very elemental formula which is what they call predigested. It is amino acid based so the stomach doesn't have to work as hard to break it down. Even with this predigested formula she is still only able to take a tiny amount at a time.

She has two ostomies, a jejunostomy and an ileostomy. Each ostomy is a part of the intestine where and opening was created and brought to the surface of the skin. We use an ostomy bag to collect waste from these openings. She doesn't poop from her rectum. When she has her surgery the ostomies will be reversed (reanostomsis). Everything will be put back together and she will have one continuous digestive tract. She will also get a G tube for feeding which is a tube that is placed into the stomach through an incision in the abdomen. We are very happy about that because she won't need her NG tube anymore. The NG tube is the yellow tube you see going up her nose. This tube goes up her nose and then down into her stomach. She loves to pull this tube out which means I get to fight with her to get it back in and make sure it's actually in her stomach. With the g tube we can avoid those battles and see her pretty face without all the tape.

I took some pictures so you can really see what she has going on. When she first had her surgery it was all very overwhelming but now it's pretty normal for us. I have to remember though that it's not normal to everyone else. I hope this makes things a little clearer.

We put protective barrier shields around the stomas and then stick the bags on. The one on the right is prolapsed and looks larger but the one on the left puts out the most stool. I ocassionally take pictures to monitor the conditions of her stomas and the skin around it. She has a little bit of skin breakdown on the right side of her left stoma which you can see above.

Here are some more pics just of Juli and her brother Omar hanging around the house.

Juliana with her cousins.

Another Visit to the Hospital

As much as I wanted to go back to Yale to visit all of our friends, I really didn't want to do it this way. Juliana started off with what seemed to be just a slight cold. She was a bit congested for a few days but her lungs sounded clear, her work of breathing hadn't changed and her oxygen requirement remained the same. Sunday morning she her oxygen sats began to dip into the high eighties low nineties so we turned her oxygen up a bit. It was not uncommon for Juli to require a little bit more oxygen with a cold. Well a little bit suddenly turned into a lot more. We were able to keep her saturation levels in the 90's but her oxygen level went from her normal 1/8 of a liter to 2 1/2 liters. Her work of breathing began to increase and she was just irritable. All I could think was RSV and in the hospital for weeks. It's like I have PTSD. The moment I think of going back to the hospital my eyes well up. Despite my aversion to staying in the hospital I knew that if I didn't bring her in things would only get worse.

So we brought her into to the ER and they took several chest x-rays. The first thought after looking at the x-rays was pneumonia but fortunately after a second look it was confirmed that she had a slight collapse in her right lung. A collapse is much easier to get over than pneumonia although still not fun at all. She also was positive for para flu which is a respiratory virus. We spent two nights in the hospital and we were on our way home. She is still sick but we can treat her symptoms at home and it is much more comfortable for the both of us. After this I am sure that we will not be having surgery this month or next month either. Fortunately we can wait

Everyone was surprised to see how great Juliana looked since she was still on TPN. I blame it all on the omegaven. If it weren't for omegaven we would be shopping for a liver right now with a very sick looking yellow little girl. We are so grateful for Children's Hospital Boston and everyone on Juliana's care team. They really go out of their way to look out for her best interest.

Update with Pictures (Finally!)

Juliana is doing fantastic. She finally got her synagis shot after weeks of phone calls to the doctors office, insurance company, and the pharmacy. Her pediatrician finally received the novel of medical records from both hospitals and it seems like everything is falling into place. Her pediatrician and the nurses there really understand what it means to be a micro preemie and offered us VIP treatment at our last visit. I was really worried about bringing her into the waiting room with all of the sick germs floating around. She was 2 weeks late for her shot and I didn't want to chance anything. They offered to let us in through the back door and put us right into a room when we got there. No waiting room but still lots of waiting (not uncommon). She got her shot, a set of vitals, weight and height check and we were on our way. I was very happy about her weight she grew about 5 ounces in a week and is now 8lbs 12 oz. She has been tolerating the increased oral feeds so far and I am hoping that we may be able to increase her rate on the continuous pump feeds. We will see what happens at our next clinic visit on the 26th.

She also has a pulmonolgy visit next month but I am hoping that we can make it sooner. I have been testing her by turning the oxygen off for a little while to see how she does. At this very moment she has been off the oxygen for almost thirty minutes and hasn't dropped below 95%. When I first turned it off she was sleeping. About five minutes ago she woke up and her saturation level hasn't dropped below 97%. I am very hopeful that we can get her off the oxygen very soon. I know that with her off oxygen that her surgeon will also be ready to go in and put her back together. This is something I am looking forward to but at the same time I am afraid to put her through surgery again. Life with Juliana is unpredictable and I don't know that everything will go according to plan with this surgery. All I can do right now is enjoy the time we do have together and hope that all will go well.

Here is Juliana in her swing and big brother, Omar, on binky patrol.

Daddy and Juliana cuddling on the couch for the first time on the day she came home from the hospital. I love her homecoming dress.

Hanging out with Mommy

Juliana's favorite activity.... starring at her hands.

Still at home but not for long...

Juliana is doing fantastic at home. She actually grew about half a pound in the last week. She enjoys her physical therapy each week and overall is just amazing. She is spending more time awake and socializing. She went to the eye doctor last Thursday and all seems stable for her right eye which is our only hope right now as the left retina is completely detatched. We have really adjusted to life with her home, but it will all be changing when she goes in for surgery. The last time we spoke with her surgeon he felt that she would be ready for surgery in April. With the way she has been progressing I think he is probably right.

As much as she needs to have this surgery to get her gut back to normal (or close to normal), I am dreading having to go back to the hospital and deal with all the after effects of surgery. The all over swelling from anesthesia, the pain meds that make her drowsy, waiting for the stitches to heal, starting feeds all over again, dealing with nurses who think they know my child better than I do, etc. I just can't get it out of my mind. I just wish we could fast forward from the time of her surgery til the day she is discharged. I am just going to be an emotional wreck during that whole time.

Just a Day Trip

I was so worried about our visit to clinic today, especially after our last visit which ended with us spending another weekend at the hospital. So in preparation for our visit today I packed weekend bags for the both us. My thinking was that if I was prepared to stay then they would send us home. I am not sure if that really was the trick or not, but we are back home after only a day trip to Boston. It was a really long day mostly spent waiting for lab results but there was no way I was getting back in my car to head home unless I new for sure that everything was okay. We waited for almost three hours for our lab results. Fortunately we did hang around because the first sample that was sent down was contaminated with TPN and the sugar count came back way high. They drew another sample and everything came back perfect.



Short bowel is something that I never even heard of til Juliana. It's a very complex situation that tends to absorb me mentally, mathematically and most definitely emotionally. I found myself in tears the night before clinic wondering why. Why can't Juliana eat like every other baby? Why is my child screaming for a bottle and I can't give her one? Why do I spend my days and nights thinking of poop and urine measured in grams per kilo per hour? There really isn't a good reason explain why we are here in this situation right now. I don't know why Juliana was born so early. The doctors don't know why my water broke and this is what makes this even harder. Is there something that I could have done differently to prevent this? Each time I ponder this question I come up with the same answer. No.

While I can't stop my mind from wandering every once in a while, I can remind myself that this couldn't have happened to a stronger kid. Juliana is the strongest person I have ever known and because of her I am a better, stronger person. I have learned more about life and medicine than I could have ever learned in a text book. She has changed my whole outlook on life and for the better. I am so glad to have her in our lives regardless of the stress, sleepless nights, financial strain, messy ostomy bags, feeding tubes, etc. She is our little miracle and I couldn't imagine living a day without her.

We are so glad to have her home and even more excited that we don't have to go back to clinic for another month. (Yeah!!!) We do still have to go back next week for another visit to the retina surgeon, but that trip won't be as stressful as waiting for lab results. Please continue to keep Juliana in your prayers. We are so grateful for everyone who has supported us through this journey and I know you all keep a little piece of Juliana in your hearts.

Another Weekend at the Hospital

So I thought I would never spend another weekend at Children's Hospital again. Well I was wrong. We went up to Boston last Thursday the 12th and everything seemed to go well. We made in time to the eye doctor and after hours of waiting he said see you in a month. Sounds great to me. We finally get to Clinic. More hours go by and lots of visitors stop by to see us. We have our visit with her surgeon and the team. Everything looks great. Let's increase the feeds see how she does, and we will see you in a month. Sounds great til we get about half way home and I get a call on my cell from the hospital. It's Juliana's surgeon. He says I hope you are not too far from the hospital because we need you to bring her back. Just before we left they drew some blood for her usual labs. This time her electrolytes came back way out of wack. Her sodium levels were very high and they needed to get this under control. So we turned around and back to Boston we went.

So when we finally get to the floor every one says she is only here for a couple of days and then we will send her back home. They just wanted to get her levels back to normal and adjust her TPN. I didn't believe them. For some reason I just couldn't believe that a couple of days really meant a couple of days. After so long in the hospital I just couldn't imagine only staying for the weekend. What was comforting was to be on a floor where I knew all of the nurses and they knew us. I just couldn't imagine having to go through the getting to know you phase all over again. I talked with a few of the nurses on the floor and they talked me into believing that we were only there for the weekend. They hydrated Juliana for a couple of days, put her back on an adjusted TPN, drew labs almost every 8 hours and finally we were cleared to hit the road. At least heading home this time was not as nerve wracking as it was the first time. We brought her home on Monday and our new TPN showed up just in time.

So far it's been smooth sailing, except for an ostomy bag incident we had a couple of days ago. I had to change Juliana's ostomy bags 4 times in 36 hours. Quite frustrating since I have become quite a pro at ostomy bags. Ostomy bags with Juliana have always been challenging. We would literally pray that the bags would stay on leak free for at least 24 hours. All of the nurse would try different tricks to get them to stay on but it was seemingly impossible. Over time I eventually figured out the best way to get the bags to last. I am actually able to get up to 48 hours out of one bag. Poopy bags are just something I have learned to deal with. It's not fun but I would change them million times a day if it means having her home.

Speaking of Ostomies, Juliana's surgeon is looking towards April as the month he would like to go in and reverse her ostomies. (Yeah no more poopy bags!!!) We have a consult set up with pulmonology in April and if all looks well she will be going in for surgery. He is going to reconnect her intestines and then put in a G-button for feeding. (Yeah no more tube up the nose!!!) We anticipate that she will be off oxygen by then and at least over 4 kilos in weight (which is close to 9 pounds). I was quite surprised to hear that he thought she would be ready so soon, but the more I think about it the more I feel that she would be ready by that time. This should hopefully be her last surgery.

So for now, she just needs to grow, grow, grow.

209 Days Later...

Juliana is finally home. A sentence I never thought I would say after 209 days in the hospital. She came home on February 5th (my birthday!). The first night was pretty rough for us. Juliana slept through the night but I sure didn't. Between emptying her ostomy bags every 4 hours, refilling her feeding pump and the pulse oxometer going off every time she moved it was quite hard to get a good nights sleep.

Almost a week later we are settling in and everything is going very smoothly. We have a visiting nurse that visits us once a week and an infusion nurse that calls to check on us. I was a little nervous about being home with both kids alone but little Omar is a great big brother. He has been very helpful and is always on binky patrol. Dad is getting used to working with her central line and has even set up her omegaven infusion at night. Juliana is very alert throughout the day and her cry is stronger than ever.

Tomorrow will be a big test for us. We are taking her back up to Boston for her first clinic visit. This will be the first time she has left the house since we brought her home. For the last few days I have been preparing her bags and double checking to make sure we have everything we need. I am very nervous about this trip because it will be a very long one. We have an 11 am appointment at the eye doctor in Boston and then a 1 o' clock appointment at the hospital. I am told that our first visit at the clinic will be at least 3 hours which means we will be done just in time for rush hour traffic home through Boston and then Hartford (yeah!) I just hope that we can make it home in time to put her TPN and Omegaven up at 8pm.

It has been wonderful being home with both of my children. It's the best thing ever to see how much they love each other. Now that we have settled in and have established a routine (that does not involve spending weekends in Boston at the hospital) I will try to spend more time updating everyone on how great Juliana is doing. I suspect that she will just blossom now that she is surrounded by the love her family every day all day. Thanks so much for your prayers.