Here is a pic of my sweet girl blowing bubbles when she came off the ventilator and was put on CPAP. The bow on her head is courtesy of her primary nurse!
Saturday, February 27, 2010
Friday, February 26, 2010
February 27, 2010
What a week! I'm am mentally and physically drained from a week filled with major ups and major downs. Let me explain....
On Sunday I visited Avery and noticed that her heart rate was increased compared to what it normally was. I asked the nurse about it and she explained that Avery's temperature was a little high and that could increase her heart rate. They were trying to bring her temp down and they were confident that her heart rate would also come down. Well, needless to say, I got a phone call from the NICU doctor at 11:00 p.m. on Sunday night telling me that Avery's heart rate would not go down. They had tried everything. The dr. had a few ideas of what the problem might be but they wouldn't be able to confirm anything until Monday morning when additional tests could be done. The dr. assured me that they would keep a close eye on her overnight and make some decisions in the a.m. Around 7:45 a.m. I called the NICU and spoke to Avery's primary nurse who informed me that Avery was not doing so well. Her heart rate was in the 220's (it is normally in the 140's and 150's) and she was not tolerating being touched at all. We knew that her little body couldn't handle such a high heart rate for very long. I put Brielle on the school bus and raced up to the hospital to see Avery and find out what was going on. After a very agonizing morning of tests and lots of waiting and worrying they finally figured out that Avery was severely dehydrated. Lots of little changes to her feeding and some additional medication she was getting caused her to have diahrrea and that resulted in the dehydration. Her body is so small that any changes have a significant effect on her. I stayed with her all day and watched her heart rate slowly go back down and waited for blood work to let us know that her levels were getting back to normal. It was a VERY scary day and it made me realize (even more than I already did) that her life is so fragile.
She has gotten better every day since then and is finally back on track. Which leads me to today (the major "up" of the week)....Avery was taken off the ventilator!!! Finally! They made the decision this a.m. to extubate her. So far so good. She is on CPAP and is doing well. The doctors and nurses keep reminding me that she may have to be reintubated at some point, but I'm glad that they gave her a chance to get off the ventilator and breathe on her own. I know she can do it! Keep your fingers crossed!
We had the chance to do some "kangaroo care" a couple of times this week and we both enjoyed it. I spoke to her doctor a little while ago and he told me that at this point the major goal with Avery is to get her to gain more weight (she is currently at 2 pounds 3 ounces). She is healthy and is progressing well. I will post some pics of her without the ventilator tube in her mouth later in the week. Keep her in your thoughts!!!
On Sunday I visited Avery and noticed that her heart rate was increased compared to what it normally was. I asked the nurse about it and she explained that Avery's temperature was a little high and that could increase her heart rate. They were trying to bring her temp down and they were confident that her heart rate would also come down. Well, needless to say, I got a phone call from the NICU doctor at 11:00 p.m. on Sunday night telling me that Avery's heart rate would not go down. They had tried everything. The dr. had a few ideas of what the problem might be but they wouldn't be able to confirm anything until Monday morning when additional tests could be done. The dr. assured me that they would keep a close eye on her overnight and make some decisions in the a.m. Around 7:45 a.m. I called the NICU and spoke to Avery's primary nurse who informed me that Avery was not doing so well. Her heart rate was in the 220's (it is normally in the 140's and 150's) and she was not tolerating being touched at all. We knew that her little body couldn't handle such a high heart rate for very long. I put Brielle on the school bus and raced up to the hospital to see Avery and find out what was going on. After a very agonizing morning of tests and lots of waiting and worrying they finally figured out that Avery was severely dehydrated. Lots of little changes to her feeding and some additional medication she was getting caused her to have diahrrea and that resulted in the dehydration. Her body is so small that any changes have a significant effect on her. I stayed with her all day and watched her heart rate slowly go back down and waited for blood work to let us know that her levels were getting back to normal. It was a VERY scary day and it made me realize (even more than I already did) that her life is so fragile.
She has gotten better every day since then and is finally back on track. Which leads me to today (the major "up" of the week)....Avery was taken off the ventilator!!! Finally! They made the decision this a.m. to extubate her. So far so good. She is on CPAP and is doing well. The doctors and nurses keep reminding me that she may have to be reintubated at some point, but I'm glad that they gave her a chance to get off the ventilator and breathe on her own. I know she can do it! Keep your fingers crossed!
We had the chance to do some "kangaroo care" a couple of times this week and we both enjoyed it. I spoke to her doctor a little while ago and he told me that at this point the major goal with Avery is to get her to gain more weight (she is currently at 2 pounds 3 ounces). She is healthy and is progressing well. I will post some pics of her without the ventilator tube in her mouth later in the week. Keep her in your thoughts!!!
Saturday, February 20, 2010
February 20, 2010
Spent most of the day with my little sweetie. We were able to start kangaroo care this week. It's been so great (for both of us) and Avery does so well with it. As you can see from the picture, the nurse takes her out of the isolette and places her right in my shirt and buttons it up. Then they place warm blankets over her and put a hat on her head to keep her nice and toasty. Avery usually spends the first few minutes wiggling around and getting cozy, but once she gets settled in she falls fast asleep. We snuggled for over two hours today and she tolerated it very well.
We also got some great news about Avery being weaned off the ventilator. They have been able to drop her settings so low the past few days that they are now preparing her to be extubated (removing the ventilator tube from her)! They gave her a big dose of caffeine today to get her ready and will give her smaller doses going forward. The caffeine helps her remember to breathe in case she forgets. The nurses and doctors keep reminding me that she may have to be re-intubated after a couple of days if she can't handle breathing on her own, but they won't know until they try. Knowing my little girl and seeing how often she tries to pull that tube out of her mouth I think she's ready!
Weigh in day is Monday and we're hoping for a few ounce gain. Her feed has been increased and so have the amount of calories she receives. I will keep everyone updated! Keep those prayers for Avery coming...
Wednesday, February 17, 2010
Monday, February 15, 2010
February 15, 2010
What an AMAZING day! I got to hold Avery for the first time today! And today was "weigh-in" day and she gained another 2 ounces, bringing her up to 1 pound 14 ounces. She gets weighed again on Thursday and we're hoping to be able to have a "2 pound party"! Keep your fingers crossed and I will keep you updated. The doctor did not have much to update me about today. The amount of calories in her feed was increased yesterday and she seems to be doing good with it so far. Her belly was a little big again today, but we're hoping she just has to make some poop and it will go down. More praying for poop : ) And of course, they are still trying to wean her off the ventilator very slowly, but she is still so small and needs the help. I know she'll tell us when she's ready to come off the ventilator...just not quite yet.
I was so happy to find out that I would get to hold her today. Her nurse, Penny, and I gave her a sponge bath (she loved it) and then Penny wrapped her up in warm blankets and placed her in my arms. Of course I cried. But little Avery did so well. She was out of the isolette for about 40 minutes and she looked so happy to be out! She had her eyes wide open for a lot of the time and was checking us out. We talked to her and snuggled with her. It was wonderful. My Valentine's Day present - one day late : )
Friday, February 12, 2010
Monday, February 8, 2010
February 8, 2010
Another good day for Avery! She gained another 2 ounces, bringing her total weight to 1 lb. 8 oz! And she is doing great with the feeding. She has tolerated it well and her feeds have increased every day for the past 4 days. She is being closely monitored right now for an infection that was detected in her body. The doctors aren't sure what is causing it, but they are planning on putting her on antibiotics as a preventative measure. We are hoping to have some more answers about the infection tomorrow after an x-ray is taken and test results are returned. She is still working on being weaned off the ventilator. Settings are turned down a little bit each day as long as she is tolerating it. The nurses keep telling me "she is the boss. she will let us know when she is ready to come off the ventilator." They're right!
I got to hold her briefly on Sunday afternoon. The nurse lifted up the top of the isolette and allowed me to pick her up and hold her in my hands. You can see in the picture above. It was a great moment and it made me want to hold her close to me and kiss her little cheeks, but I know I can't right now. Like I've said before, our time to cuddle will come soon, I'm sure. I keep telling myself that she should still be in my belly and if she was I wouldn't be able to see her or touch her or hold her yet. I can be patient.
Big sister Brielle is VERY excited to hold her little sister too! We are planning on visiting the hospital together this weekend for a Valentine's Day visit to Baby Avery. Brielle is not allowed in the NICU, but she can see her through the NICU windows. We are both looking forward to it. Brielle has already made some Valentine's Day decorations for her little sister's isolette. It's so sweet : )
Thursday, February 4, 2010
Avery is having a good day today : ) Some good news to share:
- She gained another ounce. So now she is up to 1 pound 6 ounces!
- She started "feeding" again today through her feeding tube. It's been a full 24 hours and so far the results are good. She didn't spit up any of the food and she made a nice poop this morning. Both are good signs that she is digesting well. Hopefully tomorrow they will be able to up her feeding amounts and that will help her gain more weight more quickly.
- They are still slowly weaning her off of her ventilator. It's been a slow process, but she is doing well with it. As she gains more weight it will be easier for them to wean her.
A lot of people have been asking about "kangarooing" and how it went. Unfortunately, I wasn't able to do it yet. The day that we were going to try was the day that she had to have her ventilator tube changed and the nurses and doctors felt it was too much to do in one day. The doctor is also reccomending that we wait until she is off the ventilator to start kangarooing. I was disappointed, but I agree with them and I understand. Our time to snuggle will come soon enough. I'm really looking forward to it and when the time comes I will certainly update all of you on how it went.
Thank you to everyone who signed up to be part of Team BrAvery as we raise money and walk for March of Dimes in honor of Brielle and Avery. There is so much love and support out there for me and my girls that it makes me cry every time I think about it. I have the best family and friends that a girl could ask for and I don't know how I would've made it through the most difficult time in my life without them. Something else happened today that made me question certain people and their values and priorities during this scary time in our lives. I can't help but be totally consumed by my daughter and her condition and it makes me wonder how other people so close to her can be concerned with silly and un-important issues. My daughters are the most important things in my life right now and I wish it was that way for everyone, but unfortunately for them it isn't...
- She gained another ounce. So now she is up to 1 pound 6 ounces!
- She started "feeding" again today through her feeding tube. It's been a full 24 hours and so far the results are good. She didn't spit up any of the food and she made a nice poop this morning. Both are good signs that she is digesting well. Hopefully tomorrow they will be able to up her feeding amounts and that will help her gain more weight more quickly.
- They are still slowly weaning her off of her ventilator. It's been a slow process, but she is doing well with it. As she gains more weight it will be easier for them to wean her.
A lot of people have been asking about "kangarooing" and how it went. Unfortunately, I wasn't able to do it yet. The day that we were going to try was the day that she had to have her ventilator tube changed and the nurses and doctors felt it was too much to do in one day. The doctor is also reccomending that we wait until she is off the ventilator to start kangarooing. I was disappointed, but I agree with them and I understand. Our time to snuggle will come soon enough. I'm really looking forward to it and when the time comes I will certainly update all of you on how it went.
Thank you to everyone who signed up to be part of Team BrAvery as we raise money and walk for March of Dimes in honor of Brielle and Avery. There is so much love and support out there for me and my girls that it makes me cry every time I think about it. I have the best family and friends that a girl could ask for and I don't know how I would've made it through the most difficult time in my life without them. Something else happened today that made me question certain people and their values and priorities during this scary time in our lives. I can't help but be totally consumed by my daughter and her condition and it makes me wonder how other people so close to her can be concerned with silly and un-important issues. My daughters are the most important things in my life right now and I wish it was that way for everyone, but unfortunately for them it isn't...
Tuesday, February 2, 2010
Join Team BrAvery as we participate in the March of Dimes Walk in Seaside Heights on Saturday, April 25th.
Click on this link to join today! http://www.marchforbabies.org/team/t1372268
Thank you!
Sometimes the tiniest stars shine brightest in our lives...
Monday, February 1, 2010
February 1, 2010
I spent most of the morning in the NICU with Avery today. We got lots of good news regarding her progress today. First, she gained another ounce so she is up to 1 lb. 5 oz. Second, the results of the gastric study came back good. The proof was in her diaper! The nurse told me that I could change her and when I opened up her diaper I got a big surprise! So, the doctor is planning to start feeding in the next one or two days. Lastly, Avery and I will be "kangarooing" tomorrow. This basically means that we will be doing skin to skin contact. I will sit in a comfy chair and they will place a naked (except for the diaper) Avery on my bare chest right near my heart. We'll sit together for quite a while. Studies show that "kangarooing" is extremely beneficial for both mom and baby. I can't wait! I'm so excited to feel her wiggly little body on mine. As long as her vitals are good (they have been excellent so far) we should be able to do this quite often.
And that's pretty much all for today. It was another good day for Miss Avery. And for me : )
This pic was taken on Sunday afternoon while she was all snuggled up on her belly. She is defintely going to be a little blondie. Look at those eyebrows!
Subscribe to:
Posts (Atom)