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.
Friday, February 27, 2009
Saturday, February 21, 2009
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.
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.
Tuesday, February 10, 2009
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.
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.
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