For the next week and a half Jonah continued on the same roller-coaster all NICU moms will tell you about. He did well some days and not well others. We were in a routine now, I went early to the hospital so I could be there for rounds, my husband went to work then came out afterwards with something fast-food for dinner and we stayed until we went back to the Ronald McDonald House and crashed. They started to use the "H" word (going Home). Jonah got to try out breastfeeding a bit too, we stuck to once a day so he didn't tire out but lactation was very happy with his latch and amounts. We were able to measure how much he drank by weighing him before and afterwards on this super-sensitive scale, which I got so comfortable with I could do myself and just let the nurse know how much he ate PO (by mouth) and gavaged (by feeding tube). We got pretty self-sufficient this week.
Jonah was circumcised this week in preparation for his leaving. The doctor that took care of it did most of the circumcisms for the hospital and told us her and her husband joked that she could probably walk down the street in Milwaukee and point out half the men on the street as ones she had done. She took quite a bit of pride in her work and had a great sense of humor to boot, thanks Dr. Ehlert!
She also asked me in all seriousness how I felt about Jonah going home on a bit of oxygen, he just did not want to give up that last half liter. And as much as 20 days ago I would have balked at the idea, now it sounded great! We focused on the feeding issue, if he could just get rid of the darn feeding tube we could go home, and we were getting there...when Jonah started needing a bit more oxygen instead of less. They had told me that he needed just the little 1/2 liter of room air, really just a "whiff" during the day while he was active, then it was all the time, then it went to 1 liter of oxygen instead of room air. Hhhmmm, doesn't this seem odd I kept asking? No no, the doctors assured me, it often happens and his lungs will eventually grow large enough where he won't need the oxygen any more. They started sending the at-home nurse coordinator and social worker over to discuss transitioning to home. We were happy and excited and scared.
It was during this time that we met another couple at the Ronald McDonald House who had a son with CDH. Children's Hospital had told us that they handled about 30 cases per year so we knew there was probably someone else in the hospital on this journey but of course you can't know who, so I was so happy we had run into them. Their son Elijiah was just a few weeks younger than Jonah and hadn't had his surgery yet. His mom was so strong, she had found out about his CDH when her husband was on a business trip. Then she found out there was another complication that required her to be in the hospital on oxygen for 9 weeks before delivering. And all of this was found not because of a routine ultrasound screening but because of one they got done not at a hospital but just to find out the gender since their OB/GYN did not perform routine ultrasounds unless there were complications. If they hadn't gone for that ultrasound, they wouldn't have been able to be prepared. And if the ultrasound tech, who was only looking for a gender and not for an anomalies, hadn't spotted it and called their doctor, there could have been a much different outcome. The Lord does work in miraculous ways! We are so blessed to have met them and still chat today.
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