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.

Coming Home (soon) !!!

On Friday January 2nd we had a meeting with Juliana's surgeon. He said that he didn't fell that Juliana was ready for surgery and to send her home till she was ready. This was the best news ever. On Monday January 5th Juliana's eye doctor called me and said Juliana needs another eye surgery (left eye only). Not only does she need surgery but she needs to be transferred to another hospital for the procedure. So the next day she is transferred to Mass General, spent the night on the pediatric floor, left to Mass Eye and Ear for the surgery, and was them admitted to the PICU for an overnight stay. By Thursday we were back at Children's on a half liter of Oxygen but not intubated which is great. Late Thursday evening (early Friday) she was sent down to the PICU because her oxygen went up to 2.5 liters. Turns out she caught Klebsiella Pneumonia from the intubation for the eye surgery. There goes all hopes of going home out the door. Fortunately Juliana is tough and fought through the pneumonia and by the end of the week she was back to normal (well almost normal). The pneumonia cleared but still more bad news. She had a follow up check up from her surgery and it was unsuccessful. The retina is still detaching and she may lose vision in her left eye. The surgeon is not ready to give up that eye yet but doesn't plan on doing any thing in the very near future.

We scheduled another meeting for Friday the 23rd to discuss discharge for Juliana. I was totally expecting to walk in and hear everyone say that Juliana was just not ready to go home. my insurance covers limited amounts of private duty nursing which was up for discussion even though I didn't feel it was an issue. Much to my surprise the exact opposite happened. Due to the events of the last couple of weeks her surgeon felt more confident than ever that Juliana needed to go home and wait it out. He is completely sure that she is not ready for another surgery and just needs to grow. The care coordinator felt confident enough to agree that she would receive adequate care at home even with limited nursing. So two weeks is the goal. my birthday is in two weeks so everyone is working to make sure that she goes home on or before that date. We are super excited and I finally feel confident enough to share these plans with everyone. I was afraid to say something out of fear that something would backfire and my fears were confirmed when we ended up back in the ICU even if it was for less than 24 hours.

Now she is doing very well. She is so interactive and we can't wait to have her home. It will be a very hard adjustment as she still is very fragile in terms of her immune system and does require a lot of medical care. I have been training all month (and most of her life) to care for all of her medical needs. The only thing left to do is to meet with infection control. We have been getting shipments of medical supplies for her. All of her meds have been changed to oral instead of intravenous, her omegaven now only runs at night, we have the O2 tanks to bring her home with as well as a portable monitor. We are so close but still it seems so far off. This week she will have another swallow study done to see if she can tolerate regular liquids instead of thickened liquids. She will also have a sleep study to check for apnea spells and a ph study to determine if she has a reflux issues. All of these studies are just precautionary and will better prepare us to take her home. Once these are all complete she will have a car seat test done and we should be on our way.

Hopefully there will be no unexpected events and she will come home as planned. It is very important to us that Juliana gets to live a normal (or somewhat normal life) at home with her family. She needs to know that there is more to life than the hospital. Please continue to pray for her health.