Y’all! I cannot believe it! We are on track to go home NEXT WEEK! Next Monday is the day that is set to walk out of the hospital with my baby in my arms after 13 weeks in the NICU! After 90 goodbyes, I FINALLY won’t have to do that anymore.
Now, all of this depends on if Anna can keep her feeds up all on her own. So far, she’s been doing well. For the last 3 days she’s been taking all/most of her bottles. Starting tomorrow, they will allow her to eat on demand for 48 hours. She has to gain weight during that time in order to pass. If she can do that, then her feeding tube will come out and they’ll watch her for an additional 48 hours. If she can make it, then we’re FREE!
Anna will be going home on oxygen, but we don’t care. We just want her with us.
Please pray for her to do well with all her feedings for the next 4 days. And pray for us as we hectically run around preparing all the things to drive back to Texas.
If all works out, I should be sleeping in my own bed next Friday night for the first time since before Thanksgiving!
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Well, it appears that all my excitement about the possibility of going home soon and Anna’s great progress was a bit premature. All morning, while I was at the hospital yesterday, all the nurse and I did was talk about discharge. We talked about bringing Anna’s car seat in for her car seat test. We talked about getting debriefed so we knew what to expect once we were home. We talked about the possibility of going home on oxygen. Our entire conversation revolved around one word...HOME. I was thrilled. But it was short-lived because only a few hours later, Anna’s feeding tube was put back in and her oxygen support was turned back up. She was just too tuckered out to keep working so hard. It was just too much too fast.
At first, I was devestated. All I want in the world is to have my girl home with her family. But I know we can’t rush this. She’s not even 37 weeks yet. The fact that she was doing all those things was almost unheard of. Our girl likes to be an over achiever! But her body just couldn’t keep up with her eagerness.
So, the plan is to give her a break over the weekend and try again more slowly next week. She’ll only be fed via feeding tube for the next few days and then next week we’ll slowly introduce the bottle again. Hopefully this will get her back on track and we can start thinking about her homecoming once again.
Please pray for Anna to get the rest she needs this weekend. Pray that it is restorative for her and that she’ll be fully ready to get back to oral feeds next week. Pray that she continues moving forward and that we can set a date to come home! And pray for my mama heart. I always miss her and I always hate leaving her. I’m ready to close this chapter and move on to the next one. Thanks for walking through this with us!
Has it been a minute since I last posted, or what?? I apologize that I am not the greatest at regular updates. I have learned, about myself, during this time that overwhelming situations tend to shut down every absolutely non-essential thing in my life to help me cope and survive the big stuff...so sorry things have been so inconsistent!
Anyway...this post is going to be a doozy (our God is SO faithful), so hold on to your hats, folks!
Ok, let’s pick up where we left off. Last time I wrote an update, Anna had just turned 9 weeks old. She weighed about 4 1/2 pounds and she had been taken off of the CPAP machine and was breathing on 3 liters of oxygen.
This week Anna is 11 weeks old. She weighs almost 6 pounds and she’s only on .1 liters of oxygen! That is POINT one, people! That is literally the absolute lowest amount she can be on ever.
Over the course of the last two weeks Anna has also begun taking all her feeds by bottle. She was doing so well that they removed her feeding tube yesterday! Now she is on a 48 hour watch to see if she continues to gain weight. So far, so good. Yesterday she gained 20 grams so she’s on the right track!
We are still working on nursing (I’m determined not to give up!). Nursing is a lot harder than bottle feeding and her nurse compared it to running a marathon just for celery. She has to expend so much energy just to get a small amount. So, I’ve been in contact with another NICU mom who was able to successfully breastfeed her son (who is now 5 years old, by the way) and she has been SO encouraging! I will continue to offer Anna the breast and we will practice, and it is my hope that one day soon it will just “click” for her. Until then, her food is coming via bottle, and that’s ok because that is what will get us outta here!
So when exactly will we be “outta here?” Great question! We...still don’t know. BUT, there is an entire team working behind the scenes to get us all set up with the O2 we would need if Anna needs to go home on oxygen. If the decision is made that she will need the O2, she could be discharged in as little as a few days! An alternative plan, that would keep us here a bit longer but would eliminate all the toting of oxygen tanks, is to take her off O2 completely and watch and see how she does. Usually, doctors will do this anyway just to check and see if we can avoid the home O2 route. Since she was just weaned to .1 liters of O2 today, they are going to give her a couple days to adjust and then see if she can tolerate coming off all together.
Lastly, she’ll need to pass her car seat test, but no one has any concerns on that front (yay!).
Look at all the prayers God has answered in the last 2 weeks, y’all! He is SO faithful and He has been sustaining my little family every step of the way. He’s pretty much the best ever, am I right?
So what else has gone on this last couple of weeks? Grandma and Grandpa got to hold Anna for the first time (see adorable pics for that). She had to be on less that 2 liters of O2 for anyone other than mom and dad to hold her. Mommy and daddy have begun participating in meal time by bottle feeding. Also, Anna was moved out of the small baby unit and into the regular NICU. She now has a room with a giant window and all the natural light one would ever want. It’s been nice. She shares her room with a little boy named Payton. He’s been a great roommate and we like singing and reading to him too.
So...the hour has come, prayer warriors, for what I feel is our biggest prayer request yet....
Please join me and ask our powerful, faithful God to give Anna’s lungs that last boost they need to take deep, healthy, strong breaths and COME OF OXYGEN FOR GOOD! Ask Him to send us home without any O2 and a baby perfectly capable of breathing on her own. If that doesn’t happen, God is still good, and we will adjust, but that is my specific request.
Here’s to (hopefully) only about a week left in the hospital!