Here's Parker resting after his long day of doctor's visits. We had follow-ups on his surgery and his eating problem. And... they didn't go that great.First they wanted to check his incisions. His pacemaker looks great, its not sticking out of his belly quite so much. Thats due to his weight gain, he is FINALLY over his birth weight! 5 lbs 14 oz, still quite small. His main incision over his heart is not doing that great, it actually got worse than last week. There is a hole in his chest the size of a pencil eraser that keeps oozing. It is healing, just not as quickly as they were hoping. So thats still bandaged up.
Then we went to the swallow study. I guess I should explain Parker's diet first. I pump breastmilk for him, but since he's so small he needs extra calories. So we mix 6 oz of breastmilk with two unpacked teaspoons of Similac. Then we mix four oz of that mixture with one packet of Simply Thick to make it 'nectar' consistency. We have dubbed it "sludge" in our house because its so thick. He needs to have the thicker consistency because he was aspirating (or breathing in) his food into the lungs and it could lead to pneumonia. Then as he's eating we have to carefully watch his lips and fingernails for any white/blue coloring, to make sure he's not aspirating.
They do the swallow study in a big room with a little tiny chair for Parker. They mix liquid with barium so it shows up on x-ray, and then they have a continuous x-ray to see if the liquid goes into his lungs as he's eating. Well, he aspirated again. This time he did cough, so thats a good sign. But then he started turning grey and lethargic, and the doctor yelled for me to turn up his oxygen quickly. Luckily he returned to normal quickly but it still scared me.
And now the worse part. We have a therapist coming to our house weekly to work on Parker's eating skills. Well she told me that its fine to use thin liquids at the beginning of the feeding to get him 'used to them'. So we've been doing this for about a week. When I told the doctor, she FREAKED OUT. Apparently thats ok for most patients, but cardiac patients are different. So for the past week we've been encouraging him to drink thin, where he's been aspirating every single time. I feel so guilty. I've been causing harm to my poor child. :(
Just with everything going on, I wonder why Parker was sent to me. I have no idea what I'm doing, and it looks like I'm just making him sicker. This little baby is a lot of work!
Amy
I feel the same ay at times,and Severin is my FOURTH!In fact just today I realized at 6:00pm he had been working on the same 5 oz bottle since noon! It had gotten too thick to get through the nipple! So I mixed a new bottle ( I too have to pump and fortify) the poor kid sucked down 4 oz! And this is not the first stupid thing I've done. Hang in there it does get "normal".
ReplyDeleteI'm sorry this are so rough Amy :( Don't be hard on yourself, you did exactly as you were told by the therapist so how would you have known any different?
ReplyDeleteI can say that Heavenly Father knew what he was doing when He sent Parker to you. You and Grant are amazing and He knows that. He would never send you a trial that you can't learn to handle. Mistakes are guaranteed, but that's part of learning and growth. You are an amazing Mom!
It may sound silly but whenever I see a picture of your little angel baby I start getting teary. You have fought for him to come, you fought for him to live while pregnant, I know that God would only trust someone like you to do all you can to help Parker with anything he needs in life. Love you!
Hang in there. I'm sure Parker's in your family for a reason. :)
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