First off, I want to announce that Alden is officially NG tube free! It is a bittersweet time for me, as I feel like his NG tube was a part of him. I grew attached and felt that it was something that completed him. I am, however, totally excited that he doesn’t need it. He is free to scoot around and play without getting tangled in the cord, or tipping over the backpack (which we would then have to prime due to air getting in…such a hassle). And most of all, I am relieved that he seems more comfortable. He spits up less, coughs less, and seems much happier overall.
We met with his OT who gave us a new feeding plan. We figured out why Alden has not been able to gain weight. He was supposed to be on a 28 cal/ounce diet this whole time, but has only been getting 20 cal/ounce (This is what a normal child would be on…the recipe on the back of the Similac can). We didn’t know that he was supposed to be receiving more. Somehow we missed that this whole time. So now he will be on 24 cal/ounce diet to help him gain. Alden is weighing in at 16 lbs, 5 oz which puts him in the 14th percentile. They would like him to be a bit bigger, but they were not concerned because he has grown in length (just under 27 inches).
Now the new struggle will be getting him the volume he needs within 12 hours. He needs 900 mls, which is 30 oz each day to keep his weight up. The problem is that he can’t eat a lot at one time without spitting up. It seems as if he can only take 3 oz at one time. So we are now going to feed him one 3-3.5 oz bottle every 3 hours with the hope that he can become more hungry and take more. It may not add up to 30 oz, but this is where we need to start. I know it’s all confusing to most of you. Sorry! Anyways, we will call back in one month with an update and see if he will need to go back to tube feeds or increase his calories.
We discovered that Alden does not like being interrupted while eating. We stopped his bottle feed about half way through to change the nipple size from a 1 to a 2, and Alden REFUSED to finish. So now we know not to interrupt him…the boy likes to be in control! He was also able to eat some solids for his OT. He refluxes his solids (sounds gurgle-y) while eating, so we have to really thicken his food with rice cereal. We are keeping an eye on this as well. He can eat solids twice a day now. So far he hates all veggies, and loves bananas, apples, and pears.
CDH clinic went as expected. His 2 night pulse oximeter reading went well, and he passed. Dr. Ong (his pulmonary doctor) said that his sats stayed above 95% which is what they were hoping for. They will be keeping an eye on his pectus since the right side of his body is more pronounced. His ribs are uneven as well, but it is not concerning. Alden will get an echo in 2 months to check his heart again since his last echo showed a small spot that works a little harder. He will also get a perfusion scan. A perfusion scan consists of an IV with dye to see how much blood is circulating to/through his lungs. Alden does not need to go back to CDH clinic until the fall.
I couldn’t muster up the courage to ask the hard questions that I posted to Facebook. I just listened to the doctors and felt confident in their decisions about him. They also said that Alden does not need to be on his pulse ox at night anymore. For the last 2 nights he has not been on it…and man, it’s hard for me. Very hard. I get up constantly to check if he is breathing.
And finally, we met with Darcy in Cranio. Alden’s flat spot has not improved so Sean and I have decided that it is best for him to wear a helmet. He will only need it for 3 months, and it has an 85-95% success rate.
It was a long day there. And yesterday was even harder as I began throwing up all day. I am thankful I was sick on a day when Sean was home. But today I am finally processing his appointment and new plan.
Yesterday I began counseling. It was by far the hardest morning I have had in a very long time. It was very weird being asked something only I am use to saying, “Are you afraid your son is going to die?” I don’t think I have cried that hard since I was pregnant. We talked about many things and he explained to me that I am experiencing PTSD and Panic Attacks/Obsessive Thoughts and (understandable) irrational thinking. He said that he wants to talk more about the postpartum hemorrhage since that is a very scary thing to go through, and has been overlooked/pushed to the side. He suggested I see a doctor to get my physical health checked out and consider some anxiety medication for a bit. I think that the emotional morning caused my bad headache and vomiting yesterday. I am glad today is a new day.
I could go on and on. But my thoughts are scattered and my grammar is poor this morning. Thank you everyone for your prayers! I will update again soon!