Monday, September 14, 2009


After a pretty uneventful summer, Juliana decided to end it with a fever. I went in to check on Juliana and complete the 5 am diaper change duties, I noticed that she was a little warm. I took her temperature and the thermometer read 101.8. I have never been so worried about a baby with a fever as I am with Juliana. Within 20 minutes bags were packed and loaded into the car and we were off to the hospital. I drove straight past Waterbury Hospital and headed to Yale. If we needed to be admitted for any reason that's where we would end up anyway.

I arrive at Yale and go through the list of medical issues and medications. The nurse takes us right in to a room to get us settled and five minutes later our favorite resident walks in. This doctor went the extra mile for us while we were in the ICU in April and May. She took the time to contact Children's in Boston to cooridinate Juliana's nutritional needs with the protocols set by the CAIR clinic. She was able to get permission for us to give Juliana her Omegaven while inpatient even though it is still investigational and not approved by the FDA. She is very genuine and really knows Juliana's story. She even remembered how many centimeters of bowel Juliana had removed. I was so glad that I did not have to explain all of Juliana's medical history and the fact that she knows us really saved us from an admission.

We had blood culures and nasal swabs sent down to the lab. We also had some regular blood tests done to check elctrolytes and a CBC which is a "complete blood count". The CBC checks white cell counts, hemoglobin, hematocrit and others. I am always concerned about her electrolytes. Her sodium levels have been known to get dangerously high without any other real signs of dehyrdation. Fortunately all of these test came back normal. Her pulomonogist was contacted and she felt that we could ride this one out at home so once the nasal swabs came back negative for any major respiratory virsuses or flus we were able to head home. She was also given a 24 hour dose of iv antibiotics. If the cultures had started to grow anything we would have had to come back to the hospital for more antibiotics and cultures. I waited by my phone for the rest of the weekend hoping it wouldn't ring and it didn't. It's now been more than 48 hours so it's safe to say that Juliana does not have a line infection.

I have come to the realization that I will never get over the emotional trauma from having to put Juliana on ECMO. As I have expressed many times before I am very scared of what this winter will bring. So I have decided that the best way to deal with this is to be completely proactive. This may mean that we have Thanksgiving dinner at home with no visitors or that we will have to save our Christmas celebrations till the spring. It also may mean that any visitors we do have will be sprayed down with disinfectant at the door and asked to wear gloves, gowns and masks. It may not come to those extremes but we will definitely be making all of the necessary extra precautions to make sure we can keep our family as healthy as possible for Juliana's sake.

We have already begun working on getting our Synagis shots approved for the winter and both Juliana and Omar Jr. will get their flu shots in couple of weeks. Omar and I have plans to get ours shots next week. Since the onset of "swine flu" the schools have become very diligent about disinfecting common areas which makes me happy. Worrying about what will or can happen doesn't really help any, but being prepared for what will or can happen will help in a big way.

Through all of this Juliana still remains joyful and playful. She doesn't seem to know that she is sick and I am not going to tell her. Even with a second tooth pushing up she continues to laugh and play and light up my world.

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Juliana Maria was born on July 12, 2008. She is a micro preemie born at 1lb 2oz. 11-1/2 in 23 weeks and 4 days gestational age.