So what I was afraid of has come true. After having a fabulous virus free winter we have ended it with a cold. It's quite disappointing because we have waited all winter to start weaning her oxygen and now we have to put things on hold. On the bright side she is not sick enough to require a hospital stay or make her uncomfortable. She has some extra congestion and an occasional cough.
Just hoping this doesn't delay things too much. I am still hoping that we can get her in for surgery this summer. Back to the good old wait and see game.
Thursday, April 1, 2010
Thursday, March 25, 2010
Still Working on the Wean
So tomorrow will be the end of week 2 of our wean schedule. Everything seems to be going well. She has tolerated 1/2 liter for the last two weeks just fine. I am not totally convinced that a dropping down to 1/4 liter is going to go as well. The only way to find out is to try it.
We have also met our goal with the TPN schedule. When we first brought Juliana home we only had three hours off a day from the TPN pump. So she was infusing for 21 hours a day. Now just over a year later we are down to 12 hours a day. Now that she is older this is especially important. She is able to move around a bit more without having an extra pump to drag around. It also decreases the amount of times per day that I have to access her line. We hook both the TPN and the omegaven up at night before bed time and instead of disconnecting the omegaven first and then the TPN hours later, we can disconnect all at once. I try to schedule our in home labs to coincide with our disconnect time in the morning. The risk of infection increases each time the line is accessed.
Feeding therapy is coming along very slowly but we are noticing some progress. She continues to fight off anyone or anything that comes near her face. Recently she hasn't been fight as much as before. It is very small progress but definitely an improvement. She allows finger play in the mouth more than she will with spoons or the NUK brush. I have stopped focusing on the amount of food we can get into her orally. If we can get her to at least tolerate any type of mouth stimulation we know that this will help her more in the future. The stimulation will aid in her speech progression and help her to learn how to control the food. She still does a lot of gagging when it comes to actually swallow food. Part of this in my opinion is due to the NG-tube (Nasal Gastric tube runs up the nose and then down to the stomach for feeding). At this point we have no other choice. The only way to get rid of it is to have the surgery for the reanostomosis and at that point the surgeon will put in a G-tube. The G-tube is a gastric tube used for feeding that is inserted through an incision direct to the stomach.
As the days go on I get more and more anxious. I just want to have the surgery in the past. I am more than ready to start moving forward towards getting Juliana off the TPN. Whether or not she will actually get off TPN is not a guarantee, but we could at least explore this possibility. What I dream of even more is to exit the ostomy world. Everyday the challenge of caring for Juliana's ostomies is increased. She is much more active and keeping bags on her for more than a day is near impossible. Couple this with the fact that we are only allowed enough supplies for one bag change a day and we find ourselves in a very stressful situation.
So as much as I dread having to go back to living in a hospital, I know that this upcoming surgery means some very big changes in our lives and for the better. For now we just continue to work on weaning down the oxygen to get her ready for surgery. Praying for no surprises in the upcoming months.
We have also met our goal with the TPN schedule. When we first brought Juliana home we only had three hours off a day from the TPN pump. So she was infusing for 21 hours a day. Now just over a year later we are down to 12 hours a day. Now that she is older this is especially important. She is able to move around a bit more without having an extra pump to drag around. It also decreases the amount of times per day that I have to access her line. We hook both the TPN and the omegaven up at night before bed time and instead of disconnecting the omegaven first and then the TPN hours later, we can disconnect all at once. I try to schedule our in home labs to coincide with our disconnect time in the morning. The risk of infection increases each time the line is accessed.
Feeding therapy is coming along very slowly but we are noticing some progress. She continues to fight off anyone or anything that comes near her face. Recently she hasn't been fight as much as before. It is very small progress but definitely an improvement. She allows finger play in the mouth more than she will with spoons or the NUK brush. I have stopped focusing on the amount of food we can get into her orally. If we can get her to at least tolerate any type of mouth stimulation we know that this will help her more in the future. The stimulation will aid in her speech progression and help her to learn how to control the food. She still does a lot of gagging when it comes to actually swallow food. Part of this in my opinion is due to the NG-tube (Nasal Gastric tube runs up the nose and then down to the stomach for feeding). At this point we have no other choice. The only way to get rid of it is to have the surgery for the reanostomosis and at that point the surgeon will put in a G-tube. The G-tube is a gastric tube used for feeding that is inserted through an incision direct to the stomach.
As the days go on I get more and more anxious. I just want to have the surgery in the past. I am more than ready to start moving forward towards getting Juliana off the TPN. Whether or not she will actually get off TPN is not a guarantee, but we could at least explore this possibility. What I dream of even more is to exit the ostomy world. Everyday the challenge of caring for Juliana's ostomies is increased. She is much more active and keeping bags on her for more than a day is near impossible. Couple this with the fact that we are only allowed enough supplies for one bag change a day and we find ourselves in a very stressful situation.
So as much as I dread having to go back to living in a hospital, I know that this upcoming surgery means some very big changes in our lives and for the better. For now we just continue to work on weaning down the oxygen to get her ready for surgery. Praying for no surprises in the upcoming months.
Finally a tooth shot!!!! The first one is not the greatest but I did the best that I could. She has four on the top and another four on the bottom.
Saturday, March 13, 2010
Let the Weaning Begin!
It's finally March and we have the "okay" from the pulmonologist to start weaning Juliana off the oxygen. We are hoping to convince the surgeons to go ahead with the surgery even if she is still on oxygen. I am so glad that her pulmonologist feels the same way I do. It is pretty unlikely that Juliana will be completely off by May or June but it is more likely that she will be on a very low flow at night only. She is way over due for this surgery and we both would like to see it done as soon as possible. I understand the surgeon's desire to wait till she is completely off but another year of ostomy's and the ng-tube is not ideal.
I am very excited to see what her belly is capable of when it's all back together. It's very hopeful that she will be able to get all of her nutrition enterally and with some time she could even come off the TPN. The central line (Broviac) puts her at a high risk for infection and other complications like clots and air embolisms. If she can come off the TPN we can pull the line and dramatically reduce the risks. We have been very fortunate to be infection free for the last 10 months.
This will also open the door up for more babysitter options. Currently we only have one babysitter qualified to care for Juliana without my husband or myself present. It really limits the things that we can do like working or having child free time together. Fortunately our one babysitter (my Mom) has been really great and will even spend the night when we need her.
So the plan is to turn her down to 1/2 a liter for two weeks. If all goes well we are then going to drop her down to a 1/4 liter for another two weeks and then we can try shutting it off completely for two hours at a time. Juliana typically doesn't like to follow plans and usually does things her way, so we will just have to wait and see if it works.
We have also changed her formula to Peptamen Jr. It offers more calories and she actually tolerated the trial run. The best part is that is comes ready to serve in a can which means no more mixing, no more powder and no more bottles to wash. What is nice for Juliana is that it comes in flavors. I am hoping that this will help with feeding. It tastes much better than the neocate which may be a good incentive for drinking from the cup. Of course that is if I can get the cup anywhere near her first (still a work in progress).
It so wonderful to think about where we've been and how far we've come since that sunny afternoon when my water broke and my whole life changed. Many people may think how unfair that she's had to go through so much in her young life but I say how blessed we are to have made it through.
I am very excited to see what her belly is capable of when it's all back together. It's very hopeful that she will be able to get all of her nutrition enterally and with some time she could even come off the TPN. The central line (Broviac) puts her at a high risk for infection and other complications like clots and air embolisms. If she can come off the TPN we can pull the line and dramatically reduce the risks. We have been very fortunate to be infection free for the last 10 months.
This will also open the door up for more babysitter options. Currently we only have one babysitter qualified to care for Juliana without my husband or myself present. It really limits the things that we can do like working or having child free time together. Fortunately our one babysitter (my Mom) has been really great and will even spend the night when we need her.
So the plan is to turn her down to 1/2 a liter for two weeks. If all goes well we are then going to drop her down to a 1/4 liter for another two weeks and then we can try shutting it off completely for two hours at a time. Juliana typically doesn't like to follow plans and usually does things her way, so we will just have to wait and see if it works.
We have also changed her formula to Peptamen Jr. It offers more calories and she actually tolerated the trial run. The best part is that is comes ready to serve in a can which means no more mixing, no more powder and no more bottles to wash. What is nice for Juliana is that it comes in flavors. I am hoping that this will help with feeding. It tastes much better than the neocate which may be a good incentive for drinking from the cup. Of course that is if I can get the cup anywhere near her first (still a work in progress).
It so wonderful to think about where we've been and how far we've come since that sunny afternoon when my water broke and my whole life changed. Many people may think how unfair that she's had to go through so much in her young life but I say how blessed we are to have made it through.
Sunday, March 7, 2010
Pictures!!!
Juliana loves to make a mess and throw her toys around....
She is just tickled with herself when she is standing....
Say cheese and she really does it.....
Juliana with her big brother...Monday, February 15, 2010
Amazing
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.
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, 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.
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