This year has been an amazing one in the lives of the Delgado's. One year ago we were spending most of our time in Boston and actually had Thanksgiving dinner in the hospital cafeteria. We had just moved out of the ICU to a regular room on the medical floor. We had already seen some very bad moments with Juliana and were so grateful to have a room where we could finally spend some quality family time together away from all the drama of the ICU.
Juliana was still a bit yellow from the liver disease. We had just started the Omegaven. Things were definitely looking up, but I couldn't imagine where the future would take us. At that time I couldn't see our lives beyond the next week. We were literally living in the moment. Plans for Juliana's recovery and still pending surgery were ever changing. They still are but now that we have become accustomed to this life, it's much easier to see beyond the next week. We know Juliana will have her surgery at some point in her life (hopefully the next year) and we have met people along the way who have traveled a similar path. We know what the possible battles we will face look like and have an idea of what to expect in general. We all know that Juliana doesn't follow the rule book at all so I have mentally prepared myself to just deal with whatever comes our way.
We have made some great strides since Juliana's birth and I am so grateful for each and every moment. This year Juliana finally made it home from the hospital after 7 long months. We survived our first major septic episode and made some new friends in the PICU. Making it through that episode was probably the worst we have seen yet, but she's a trooper. We have been hospital free for 5 months now and are very close to tipping the scale for more time spent at home than in the hospital.
Juliana's therapy has been going really well although most of the work is done outside of her therapy sessions. Just yesterday she sat up on her own for the first time (I don't count the times I was able to balance her for a few seconds). We were waiting to go into the O.R. to get her tubes put in and were playing on the exam table in the room. I sat her up and let go and she didn't fall over. She held it for a few minutes, so when we arrived home later that afternoon I pulled out one of her sit and play toys and she sat for nearly 20 minutes playing without falling over. She hasn't figured out how to get to the sitting position without help but she can stop herself from falling over. I'll put some new pics up later.
She is continuing to become more and more vocal. We have an appointment on Monday with the audiologist. I am anxious to find out how much her hearing has improved since getting the tubes in place. The ENT said there was a lot of fluid in both ears (more so on the left) so we should see a big improvement. We haven't put her hearing aids in yet and won't be able to till tomorrow, but I can already see an improvement. She is responding without the aids in and is babbling quite a bit. Despite having the procedure done yesterday she was very happy and playful the whole day.
We are very fortunate to have the support we need from family and friends and appreciate every moment of every day.
Saturday, November 28, 2009
Wednesday, November 4, 2009
November 9,2009
So once again not much is going on in the Delgado household. We finally got the first dose of the H1N1 vaccine for Juliana and Omar is scheduled to get his this week. Fortunately everyone has been healthy outside of the normal postnasal drip which we are treating with the occasional dose of Mucinex.
It is getting harder to get things done now that Juliana is growing. Lately she hasn't been into taking naps during the day and has begun crying for attention. We think Nana has been spoiling her by holding her often during the day while I am at work. Unfortunately I just don't have enough time to hold her all day, but I have managed to skip out on a few chores to give her a little extra cuddle time. It still is wonderful to hear her cry. I think of all the months of silence even after extubation and it just brings so much joy to my heart to hear her voice. We are getting more sounds out of her with some coaching. She says "ahhhh" and continues to blow raspberries.
This week we will be seeing a new ENT to discuss the fluid in her ears. It's just not going away and tubes are most likely the next step. Usually this procedure isn't a big deal, but for Juliana it would require general anesthesia which in turn means intubation. The problem with intubation is that we are placing a foreign object down her airway and into her lungs which can possibly introduce bacteria that can lead to pneumonia. Sounds like a shot a in the dark but considering her last minor procedure that was completed and required intubation landed her in the ICU with bacterial pneumonia, that is not a shot I am willing to take. Her pulmonologist is on the same page so we are seeking other alternatives to general anesthesia to get the tubes in place.
We had another uneventful trip to Boston (no phone calls on the way home). They made a few adjustments on her TPN but overall everything is looking good. She continues to grow at her own pace and is now 7 kilos (or approx. 15 1/2 lbs.) She has not made it on the charts yet for height and weight but her head circumference is about the 5th percentile for her adjusted age. I just have to hope that what they say is true about big heads. Fortunately for Juliana we never put anything over her head for two reasons. One it's much easier to run her central line out the top of her clothes and away from diapers and ostomy bags and two she gets so mad if you even try.
The prayers are working so keep 'em coming.
It is getting harder to get things done now that Juliana is growing. Lately she hasn't been into taking naps during the day and has begun crying for attention. We think Nana has been spoiling her by holding her often during the day while I am at work. Unfortunately I just don't have enough time to hold her all day, but I have managed to skip out on a few chores to give her a little extra cuddle time. It still is wonderful to hear her cry. I think of all the months of silence even after extubation and it just brings so much joy to my heart to hear her voice. We are getting more sounds out of her with some coaching. She says "ahhhh" and continues to blow raspberries.
This week we will be seeing a new ENT to discuss the fluid in her ears. It's just not going away and tubes are most likely the next step. Usually this procedure isn't a big deal, but for Juliana it would require general anesthesia which in turn means intubation. The problem with intubation is that we are placing a foreign object down her airway and into her lungs which can possibly introduce bacteria that can lead to pneumonia. Sounds like a shot a in the dark but considering her last minor procedure that was completed and required intubation landed her in the ICU with bacterial pneumonia, that is not a shot I am willing to take. Her pulmonologist is on the same page so we are seeking other alternatives to general anesthesia to get the tubes in place.
We had another uneventful trip to Boston (no phone calls on the way home). They made a few adjustments on her TPN but overall everything is looking good. She continues to grow at her own pace and is now 7 kilos (or approx. 15 1/2 lbs.) She has not made it on the charts yet for height and weight but her head circumference is about the 5th percentile for her adjusted age. I just have to hope that what they say is true about big heads. Fortunately for Juliana we never put anything over her head for two reasons. One it's much easier to run her central line out the top of her clothes and away from diapers and ostomy bags and two she gets so mad if you even try.
The prayers are working so keep 'em coming.
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