Monday, September 28, 2009

Hearing Aids !!!

So I have been a very bad blogger and have neglected to update on the newest activities in Juliana's life. We have been really busy just maintaining day to day between work and home and now work at home.

Juliana is fabulous. She received her new hearing aids on the 17th and it was a very emotional moments for both of us. I laughed as she cried. We put the hearing aids on her for the first time and sat back and waited for her response. There is about a six second delay from the time you turn them on till they actually begin working. It was wonderful to see that she could actually hear even though she was terribly upset. She had a look of confusion for the first second which was followed by the biggest crocodile tears ever. All I could do was laugh. I was so happy to know that she would finally be able to hear me sing to her or hear her nutty brother acting crazy or listen to a lullaby.

By the time we left the audiologist she had stopped crying. I put her in the car to go home and the second I turned my back on her she had pulled one of her hearing aids out and was twirling it around in her hands. For the next few days this was her new trick. Let's see how many times I can pull this hearing aid out to make mommy so frustrated that she won't put it back in. Well it didn't work because this mommy has a lot of patience. Every time she took one out we would just put it back in with out a fuss. I wasn't going to let her use this to get attention and I wanted her to know that no matter how many times she pulls it out we are just going to put it back. Within five days she stopped fighting me over them and just leaves them alone now (mostly). I can put them on in the morning without a fuss and she typically will leave them in until she is tired. When she is due for a nap or it's bedtime we just take them out anyway and put them back when she wakes up. One of the benefits of having a child who is hard of hearing is that you can quiet a room for naptime instantly.

Her reactions since having the hearing aids are priceless. When we arrived home that first night, she cracked up listening to her brother playing and talking to her. She is laughing and smiling much more. Vocally she has actually been a little quieter than usual. I think she is just absorbing all of the noise that she hasn't heard in about 6 months. Overall we are very pleased with our decision to get hearing aids for Juliana.

The hardest part about the hearing aids is rolling. Juliana loves to play on the floor and roll around which causes her aids to whistle. I don't think she hears this as much as we do so we are trying to just get used to it. She is holding her head up now when on her belly and has been trying to pull herself up when in her high chair or car seat. She is definitely growing and progressing physically. I am so grateful that she is developing normally in the physical and mental aspects. She is doing it on her own time but we have known since day one that Juliana does things on her schedule and that's fine with us.

We are still weaning on the oxygen since her last little cold that brought us up to 2 liters. We are back down to 1 now and I am hoping to wean a little more. Hopefully we can keep the germs and the colds out of our house this season. I would like to see Juliana come off oxygen by the spring so she can have her surgery. Only time will tell.

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.

Tuesday, September 8, 2009

Break Through

Juliana finally broke skin this weekend. She is surprisingly in good spirits and not very cranky at all. We are also scheduled to get our new hearing aids next week. I can't wait to see the look on Juliana's face when she can actually hear sounds like before. Unfortunately when we went to see th ENT for medical clearance we found that she had fluid in her ears again. Nothing to really worry about just yet but if this becomes a chronic issue and/or the fluid doesn't clear up we may have a discussion about tubes.

It's been very nice to not have any real news to report. Hopefully we can keep it this way. I'll try to get some pics up of the new tooth.
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.