No tube, no problem!

Grace really enjoys not being intubated. I knew she hated that tube. She has been pretty happy without it and she loves to be held now. She makes tiny little cries and then settles down, and even went an entire 8 hour shift without needing a single PRN. She started out on 5 liters of oxygen and is down to 4. She is going up on her feeds still and is off of tpn and lipids. She likes to have her paci in her mouth and tries to suck but her mouth is weak and she doesnt really remember what it's for. But it's good she likes it in there and that she tries to chew it, we will be working on that. We are also going to start PT again, she is moving along! I am so glad she is doing so well. Thank you all so much for the thoughts and prayers.

Extubated!

Yesterday was the big day! Miss Grace is extubated with high flow nasal cannulas! She is on 5 liters of oxygen right now, which will slowly be weaned. She started off on 3 but she was desatting pretty quickly so it was bumped to 5 until she gets used to this whole breathing on her own thing! She is handling it pretty well, she doesnt seem to like having things in her nose but she will get used to it, it's better than in her throat! She also has to learn to cough up all the secretions that are in her chest and that is hard for her to learn too. She is absolutely gorgeous without tape all over her face. Her cry is so weak and quiet right now, but I couldn't help but cry when I heard it, music to my ears! Can't wait till it's super loud! I'll post a more detailed update later, but we are extubated! Please pray she does not require reintubation!

Wordless Wednesday

More progress!

I am so proud of Grace! She is doing so well! She is tolerating her feeds with no problems and I think her stomach may be starting to work, because she is not putting out much bile at all out of her tube! She is tolerating her feeds so well that they went from increasing them every 12 hours to every 8 and then every 6! She is almost halfway to full feeds now! The pressure for me to up my production is on! She has been sprinting and doing very well with it, she doesn't even seem to notice anything is different! She even threw a huge fit today while sprinting and was able to maintain her sats. We are really hoping for extubation very soon. They have her on antibiotics due to the pseudomonas and want her to have a little more of the course done before they extubate. They are still weaning her sedation and she is still doing well. She had been being given TPN and lipids for the last 2 months since she couldn't eat and tonight her TPN will run out and not be replaced! She is off lipids too, and may still get some here and there but she is well on her way to getting everyting she needs from breastmilk!
She is doing very well and I am so happy with the progress she is making!
Thank you all for your prayers and keep them coming!

My girl is a star!

I LOVE calling to check on Grace and hearing those above words! Grace has finally decided that maybe the NICU isn't where the cool kids hang out and she should work towards getting out of there! I am so happy and proud of my sweet girl, she has sprinted twice today and didn't even act like anything was going on, and her gasses during and after were awesome! She is doing so good! They will sprint again tomorrow morning and get a gas and then Peds Surg will discuss what the next step is! The big E word maybe?! She has been happy and content and sedation is still weaning and Adam held her today and said she didn't even mind the transition! Oh and they discovered that the bug that caused her pnenomonia is pseudomonas, likely due to her ET tube. I guess it's not that uncommon in people intubated and especially for so long. It's also the same thing you could pick up from a hot tub. Ew. So one more reason to get that tube out! So luckily though she was already being treated with the antibiotic that kills that, before they knew so they will keep her on it for I think a 14 day course of Zosyn. Other than that, she is amazing! I know that our downs are not gone for good, I know there will still be some hard and rocky days but I am enncouraged so much with the progress we are making. I know we still have a long way to go before we are discharged and even then the work we will have to do will be immense but I am just tickled pink with where we are right now! Thank you all so much for your thoughts and prayers, keep them coming! Pray that Grace could be extubated and that she will not need reintubation at any point. Pray that her sedation wean continues smoothly! And please pray that her stomach would start to to move things through like it should!
We have an amazing Lord and I am so very thankful for the amazing gift of grace He has given me, my sweet Grace on this earth.

And after you suffer for a short time, God, who gives all grace, will make everything right. He will make you strong and support you and keep you from falling. He called you to share in his glory in Christ, a glory that will continue forever.
  1 Peter 5:10

A G-D!

Today Grace had a GD, or a good day, but we aren't telling her that! It's funny how even the smartest most practical people are scared to jinx anything. That's NICU talk for you:) We also talked about when she goes to "the zoo" today. Not that we are close to going to the Zoo but it was nice that we talked about it in the context of WHEN it does happen instead of IF it happens. (If you aren't picking up, the zoo is home, or the h word!)
It was decided that even though Grace completely freaked out last time she was held, that she is doing well enough now that even if she cries or wiggles or anything that she just has to get through it because ultimately holding her is good for her. We want her comforted by our arms and even though it might be hard at first because she is just not used to it, we have to remember that its not that she doesn't like us, it's just that her whole life she's been laying in a bed so it might feel weird to her. And now she's not at a point where it can hurt her, she can get upset without losing her lung volumes and desatting (she still desats but not like she used to) and we just have to let her work on it. So I held her for about 3 hours and would have held her longer, but I had to go home! She was a little angry about the transition, but she calmed down quickly without the help of drugs! She stayed happy the whole time, mostly asleep. She did vomit a few times, which made her pretty upset, she really doesn't like throwing up.
They have started very slowly going down on her drips, it will take awhile to get her weaned but she is doiong good so far! It will likely take at least a month to wean the drips completely because her doses are so high, but so glad we are there! Her feeds are continuing to go up, tomorrow morning she will be on double digits! I love knowing she is getting breastmilk and her TPN is weaning!
Grace does have a small pnuemonia, but she is on antibiotics and they aren't really concerned, it is sometthing they expect. Her nurse said tonight that she's surprised she hasn't had it before now.
Grace got her chest tube removed yesterday as well as her replogle, how cute her nose looks without a hose in it!
The amount of breaths the vent delivers per minute has been decreased and she hasn't seemed to notice! Her blood gasses have been awesome!
She is doing wonderfully right now, and I am so so happy! I knew we'd get here, it just at times seemed so so so far away.
God is amazing to our family and I am so thankful for all who are praying for our sweet girl. Let's pray that these GD's keep on coming and that we take our trip to the zoo sooner than we are expecting!

Grace has had two great days! She has been happier in her quiet room and has been requiring so much less sedation than she had been before. She is tolerating her feeds, she is up to 7cc per hour! Her goal will be 33. She just looks so good. She had her MRI yesterday and we found out that she does have some atrophies on her Cerebellum, or spots where the cells have been lost. She has another spot on one part of her brain in the Caudate nucleous, called an infarct or where her there was a lack of oxygen to that part. She also has fluid built up in the ventricles of her brain.Her head circumference is also only in the 2nd percentile.  So what does all of this mean? Well they don't really know, she could simply develop at a slower rate than her peers, she could have Cerebal Palsy, she could not be able to keep her balance, she could have a very hard time walking or with coordination. They really can't tell at this point, she will just have to be watched carefully. Now, reading all the things online about all of this makes it seem bad, makes it seem like there's not alot of hope for her to not need a ton of intervention in that area. but somehow I am hopeful. Somehow I feel at peace that she is going to be ok, that these brain issues are not going to define her life or even give her any trouble. Im not sure why I feel that way but right now I am not horribly worried about it. It was however brought up,again,  whether I had had an ultrasound during pregnancy, since her head circumference was small at birth as well. The Neurologist wondered if her brain had looked fine at the time of my ultrasound. I wonder if it really did. I should take a nickel for each time in the last 2 months I've been asked if I had an ultrasound. Apparently the only thing the tech got right was that I was having a girl.
But on to a lighter subject. Grace is doing very well witht he vent weaning and today the words "extubation" and " possibly as early as monday" were used in the same sentence!!! So pray, pray hard that she has a stellar weekend and we truly can extubate next week. That woud be just wonderful and I think she would be a happier girl without that darn ET tube! They are also hoping to come down ever so slowly on her sedation, which can be a hard thing, so pray that when they do start that, she tolerates it well and does not have any setbacks due to the stress of it on her body.
I had a few weeks where I was upset that she wasn't making as much progress as we would have liked, or that in comparrison to other CDH babies she was so far behind where they were but ya know, I had to look at it differently. The way I chose to look at it, was that even though she wasn't making the leaps and bounds they were or that we would have hoped for at this point, she is making them for her. 50% of CDH babies do not survive, 50% percent! That's alot of babies, and Grace has fought with everything she has to not be part of that statistic, even though she was truly bad enough to be. So maybe she's still so far from being "normal" but she is beating the odds in amazing ways. She has come so far and will continue to beat the odds and amaze everyone she meets.