O Happy Day

If you’re familiar with this blog, then you’re familiar with Harper’s current eating situation, and if you’re familiar with her current eating situation, then you know that I’m convinced that a big part of her problem is her reflux- something that “does not exist in the NICU”. I felt like I had been banging my head into a brick wall for weeks trying to get something done to help Harper. We had a swallow study done on Friday and the results from that test helped us move in a more positive direction, but over the weekend, Harper reverted back to only eating ½ of her bottles- not something that was supposed to happen.

So, today the occupational therapist came in again to re-evaluate Harper and see how to adjust the thickness of her formula to best help her. While the OT and I were talking, Harper choked. The odd thing about it was that she wasn’t even eating yet. So, the OT took a listen and said she thought she was choking on reflux- gross. She encouraged me to ask to see a doctor to try and get Harper some help. So, I requested to see a doctor and I knew that when the doctor came in, I would have to be insistent-pushy-demanding- to get what I thought my daughter needed. While Harper and I waited alone in her room for the doctor to show up, I prayed out loud that I would find the strength to be a good advocate and to have my voice heard.

God answered my prayers and I didn’t even have to open my mouth. When the doctor walked in, he said he didn’t know much about my daughter aside from her chart because he was just rotating into the NICU and she wasn’t a baby that was super sick and demanded immediate attention. He said he was familiar with her on paper, but hadn’t gotten to spend much time evaluating her himself. So, he said he had a meeting before he came to talk to me with her nurse, the nurse practitioner, the occupational therapist, and developmental therapist. He said he knew what problem I needed addressed and offered the following solutions without me even having to demand or insist or beg:

-Harper is now on an acid reflux medicine. The doc said he takes an acid reflux medicine everyday and he knows it helps him feel better and he thinks it will help Harper eat better.

-Her gavage tube has been pulled out to allow her to really feel what it’s like to eat and as long as she takes her feeds well, she can keep the tube out.

-She no longer has a set amount she MUST take. He said not every person eats the exact same amount of food every time they sit down to eat, so he would give her a little wiggle room one way or the other.

-She can now also have a little wiggle room with her eating time. She doesn’t have to be fed every 3 hours, but has a grace period of every 3-4 hours with the hope that she will feel hunger and want to eat.

I was floored when this doctor left- you could’ve knocked me over with a feather. I am so pleased that not only does someone else see that Harper is struggling, but someone who can really help her has stepped up and decided to do so. Now, the doctor also warned that this is not a quick fix, but a process and not to get it into our heads that she’ll be home in two days. I told him I had waited 10 weeks; I wasn’t in a hurry.

In other news, Jack has also gotten onto some reflux medicine after spitting up 9 times this morning after his 8am feed and wailing like an ambulance every time he tried to burp. I hope this helps Little Man as well.

Praise God for the great things He has done!