Monday, March 24, 2008

Poor Baby

My poor baby...

Little Miss Ava Rae has not had a great afternoon/evening. She ended up back on the O2's and flow. She has been pretty fussy (of course after I wrote the previous post). I left for dinner, leaving her sleeping. I came back to a very fussy baby. Her nurse was trying to calm her down but it wasn't working. We then decided that I should try holding her (although when she first gets picked up she cries). I picked her up and put her in my lap and she stopped crying. She was retracting (pulling really hard while breathing) and very pale. I put her back into her bed because her O2 sats were dropping. While in bed her sats dropped down to the mid 50's. So that is how she ended up on the oxygen and flow.

After discussing with the doctor my concerns of Ava going through withdrawls and her horrible diaper rash the doctor decided to go back up a little on the dose of the two pain/sedation meds they have been decreasing. She has been running a little bit of a temp and having very frequent watery stools. Two of the signs of withdrawls along with the retracting and high heart rate...not to mention a couple of other things. I feel soooo bad for her. I wish I could take her place. Seeing the diaper rash alone makes my heart break for her. Right now we are trying diaper doo...although I haven't seen any improvement since we started it two nights ago. Kaden went through the same thing when he was here (his was a little worse) and we did not find any solution until we went home. Once we went home his rash (more like sores) went away and haven't returned. I hope she doesn't have to wait until we get home for it to go away, I couldn't even imagine how dreadful it has to be.

Ava got her increased methadone just a little bit ago and seems to be a little more calm. She is off of the O2s but on half a liter of flow and still retracting. She is sleeping peacefully. They did draw cultures to make sure she doesn't have an infection and collected urine to make sure she did not have a bladder infection or anything. We will not have the results for 48 hours. Please continue to pray for Ava's health and comfort. Thank you.


Isabella said...

Poor Ava. We are keeping her in our prayers. I hope that she weens off the drugs soon so you can get her home soon. I remember it taking FOREVER to ween Bella off the drugs. Just when we thought she was weened, we would have to put her back on for all of the same reasons you are seeing in Ava. So hang in there. You and I both know that they sometimes try to push our babies a little too hard. And as I have said before, no one is going to tell Ava what pace she is going to go at!! She is a tough little girl and she will do things in her own time. So if she needs a few more days on the meds then so be it. I will also be praying that her little bottom heals up soon.
Sending lots of love and prayers your way

darcymcm said...

Dear Amy,
Thank you for checking out my blog. I have spent the last little while looking at yours and what an amazing family you have! Your children are beautiful. What blessings. I can't imagine spending 11 months in the hospital with Kaden and then doing it again with Ava. You and your husband are so strong. My daughter was almost 3 when Owen was born and that juggling act in the hospital was so hard with her at home and at RMH.
I'll continue to look more at your blog and I will definitely keep both your kiddos in my prayers. I pray that Ava will continue to improve so that you can all be home together soon.

Michelle said...

nWe are praying everyday for Ava's health and comfort. Praying she is home soon with her brother, mommy and daddy!!

crackerjacksMO said...

I just went through my first really bad diaper rash with my 3 month old in the last 2 months, yes that is how long it lasted. After several, lots and lots of different things, the one thing that worked the best was a prescription called cholestyramine with aquaphor. It was a special mix the pharmacy had to do, but I saw progress only hours later. There are many types of rashes, so not knowing what kind she has, I cannot say this would work, but you might ask. That is the correct spelling as well.

I know it's hard to see her on pain meds again and O2, but whatever help Ava needs, she deserves. She's so tiny and I am sure it's been very hard for her. In good time, When the time is right, Ava will let you know she is ready to go home. Keep up your spirits.

Anonymous said...

I am so sad to hear that Ava had such a rough afternoon! As mommma's we always want to take the place for our kiddo's. You guys are never far from my mind. Hang in there. You guys have overcame so much already. I pray you have a better day today.


The Bryant Family said...

Hang in there. Man it is days like that that bring you back to reality. I remember all to well. When Tuck had the rash they gave us some white stuff that was thick and you didnt ever clean it off all the way, just kept reapplying it. And some powder that you squirted on it. It worked pretty good. Just a thought. hugs and thoughts---karen

Anonymous said...

We have been following your story from Gabi's blog . (my son Thomas has DS) Your family is a true inspiration . Ava is in our prayers. We did the NICU unit not nearly as long as you but can realate to the rollercoaster. Hang in there there is a light at the end and I know she will be home with the family soon.
Joanie Thomas and gang

Anonymous said...

Oh poor sweet little Ava. I hope that she can eventually be weened off the drugs, of course that should be at her paice though and not the Dr's. Poor thing has acquired a rash on her bottom now and I hope that you can find something to help clear that up. Keep comforting her and talking to her she seems to be loving it when Mommy and Daddy are around. Hugs and kisses to all.
Love you guys,