Marco's Journey

Today would have been Marco's birthday (scheduled c-section). It's hitting harder today than most that he's not with me, and probably wont be for 3-4 weeks. Harder because in an alternate universe I would have been starting a great adventure today, but also because he is doing SO well in SO many ways, except one, and it feels like he should be ready - but he's not.  Size: He is 7pds 10oz and such a chunky monkey. The size of a normal newborn. Breathing: He is fully off breathing support and doing fantastic! Just like a normal newborn. Health: No infections or medications to worry about. He's being weaned off his final medication, the diuretic, this week. So as long as he doesn't gain too much water weight, that will be checked off our list as well. He'll need surgery post discharge for his hernia, but docs are not concerned at all about it. Brain: No brain bleeds. Perfect health. Eating: Argh. The only thing keeping our boy away from us now is his ability to...

I'm a few days behind on my update this week - perhaps it was because this past week wasn't the greatest. It wasn't horrible, but not good either. Thankfully, we did get some good news over the weekend to counterbalance the cruddy news over the week. Let's start with the good: Our 6pd boy (!) may be able to wean off all breathing support this week! He had a strong day on Saturday in which he had no dsats (decrease in oxygen saturation). If he has two more good days in a row they are going to either lower him down to a level 1 oxygen flow or remove it all together - depending on the doctor. We'll find out today. Super exciting! [UPDATE - as I wrote this, I received a call that they took him off oxygen! Here's hoping he holds strong] Now the not so great: 1. He's not doing too well when it comes to oral feeding. It continues to be a struggle for him - so much so that they decided to give him a few days off and let him rest, to avoid him gaining a negative asso...

2 months old, "full term" and making huge jumps this week. I finally got to breast feed! Marco officially started oral feeding on Monday. He is only doing a little bit of bottle a day (roughly 5-10 mls) to get used to it and to gain strength, but it is super exciting to see this progress. On Wednesday I received the amazing gift of being able to attempt breast feeding. They call it non-nutritive, meaning they don't expect Marco to be nourished by me (still has a nasal tube) but rather just practice his sucking skills. In fact, they prefer if I pump right before we try so that Marco can focus on sucking and not swallowing - two distinct skills that he needs to work on. I was actually very nervous to put him to me, as I've never had luck with this in the past. (TMI warning) My nipples are generally flat, which means the boys had a hard time latching. We struggled with my first, fighting every feeding session, forcing the latch, until about 4 months when the doctor told ...

This week wasn't as great as I had hoped. No oral feeding and he had two breathing episodes, which made us all a bit nervous. But he hit 5 pounds and improved his sucking skills - so we had some wins as well! Feeding: Our goal until this week was to get down to 2 liters/min of forced air support, knowing that once we did we would be able to try oral feeding. Well, we got down to level 2 last week but our boy is just not ready to start sucking. Since birth he's seemed to have weak tongue muscles (it's resting state is out of his mouth) and a weak cry (quiet) which indicates overall weak eating/sucking. Typically in the womb a baby learns to suck their thumb, swallow amniotic fluid, etc. all practice for the outside world. Marco never got that chance, so things will take longer. A specialist has been working with him the past week, multiple times a day, with the goal of making sucking/eating a pleasurable time for Marco. Until this started, Marco would flinch if you touched h...