Although we found ourselves unexpectedly landed in the hospital when Jude was just a day old, it was surprisingly a blessing. Jude did indeed require oxygen for the first full month of life and for 2 more months while sleeping. But I was so new to this whole new world we were entering so I didn't know what to expect. I did know that it was common for individuals with down syndrome to have heart defects so I was thankful that Jude seemed to be doing well. So the hospital stay was a blessing because we got to see all the specialists within a matter of days with them all coming to us:
NICU doctors
Lactation Consultant
Cardiologist
Physiatrist
Geneticist
Pulmonologist
The first NICU doctor we saw in the ER was AMAZING. He told us that the thing Jude needed most was to be with mom, on mom, and nursing as much as possible. I'll be honest I was a hot mess walking into the ER, a deer in headlights at best. Thank God for a husband who was sober minded and on a mission to make informed decisions for our son's care because I'm sure I would've agreed to anything. We soon realized a lot of the "hospital rules" were mere "suggestions" that if parents pushed back at all the nurses were (USUALLY) happy to accommodate the alternate requests. Funny story, since Jude was born at home he was "contaminated" unlike the hospital born children and was not allowed in the NICU! We were in a bit of shock with this information but soon learned how lucky we were, we were placed on a regular floor in our own room with a bed for me and cradle for Jude! The NICU doctor day 2 said to me within the first 5 minutes that we should do an NG tube (A nasogastric tube is a narrow bore tube passed into the stomach via the nose) to feed Jude instead of, or as well as nursing. He said that "children with Down Syndrome have a hard time breastfeeding and usually need some type of feeding tube". While, yes, some children do require it, he didn't even give Jude a chance! But since he was the expert I was feeling like that is what I should definitely do! The lactation consultant that I had requested came by my room right after we spoke with him and she was SO encouraging! She helped me with Jude's latch and other helpful tips on how to get milk to him more efficiently. She gave me the confidence I needed to make a plan with the NICU doctor to set parameters before jumping straight to an NG tube. We decided to weigh him after feedings to see how much he was getting, count & weigh diapers, and keep an eye on his oxygen levels while nursing. Jude never had a feeding tube and that lactation consultant was in my room every day at least once until we left. She was a God send and I'm thankful for her! If breastfeeding didn't work out and a feeding tube was really what Jude required then I would have been fine with it. But I wanted to give him a chance, I wanted the bonding experience, and everyone had been telling me that nursing would be wonderful for oral motor development that would be so great for speech later on. I was not going to give up...after a little nudge from the lactation consultant. So a few lessons learned, baby's with down syndrome receive nutrition all sorts of ways, one to not be excluded based on diagnosis alone: breastfeeding! And if you want something for you or your child at a hospital, speak up! They're just going through routine unless otherwise informed. More on specialists tomorrow or whatever day I get to it ;)
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