Well it's been way too long since I have updated everyone on Juliana. Things have been going so well I am almost afraid to write this. She is just so amazing. We have gone from an independent sitter to trying to walk very quickly. She has no interest in actually crawling. She goes up on the hands and knees and the straight to the feet like a bear crawl. She is just tickled if you stand her upright completely and let her cruise the coach. She is also waving "hi" and "bye" and at times it sounds like she is actually saying "hi".
We went to her 15 month (adjusted age) check up last week and she is almost 20lbs. I just can't believe it. She is still not on the charts yet for height and weight but is in the 50th for her head. Feeding therapy is going a little better. She will drink from a cup but only with tons of coaxing. She is also handling her baby foods and cereal alot better. We had lots of gagging before and now just a little here and there. Some days of course are better than others.
Surgery is still planned for this summer and we will start weaning her Oxygen next month. The hope is to have her off oxygen before surgery. Her surgeon probably won't even think about operating on her til she is completely off. I am looking forward to this surgery but am very worried how Juliana is going to handle being back in the hospital now that she is older and a lot more aware.
For now we are just enjoying our time at home with her and praying we can get through the last part of winter hospital free. We have done really well so far. I had a really yucky head cold for about a week but managed to keep it from spreading to the rest of the family. Lots of hand sanitizer, disinfectant spray, and masks.
Monday, February 15, 2010
Monday, December 14, 2009
Pictures!!
She is so happy to be a sitter now.
Juliana loves to chew on her pacifier and somehow manages to put the whole bottom of it in her mouth while still sucking on the nipple part.
and thinks it's very funny by the way or it could be the person holding the camera that she finds so funny.
Ready to go bye-bye.
What a tangled mess she's weaved. We still haven't figured out a way to keep her from getting all tangled. The only way to do this is to strap her in a chair or a swing. She loves to play on the floor so much I just can't deny her of her fun. So about every 5-10 minutes I untangle her but it's worth it to see her develop into a baby on the go. She can now do a modified army crawl and is pretty good at slithering backwards.
Ready to go bye-bye.
What a tangled mess she's weaved. We still haven't figured out a way to keep her from getting all tangled. The only way to do this is to strap her in a chair or a swing. She loves to play on the floor so much I just can't deny her of her fun. So about every 5-10 minutes I untangle her but it's worth it to see her develop into a baby on the go. She can now do a modified army crawl and is pretty good at slithering backwards.
Saturday, November 28, 2009
So Much to be Thankful For
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.
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.
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.
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.
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
Fever!!!
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.
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.
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.
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