11.5 Weeks, 39.5 Adjusted

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 eat - which is he not too great at. Strange, considering his Mama is an eating champ haha.

Marco just cannot get the hang of the suck-swallow-breathe routine. Some feeds he is great and can drink a full ounce (30 ml), others he won't get more than 1ml. He'll scrunch up his face and push out his tongue as if he's in pain. The speech/oral therapist has been meeting with him daily and has tried a few different nipples - with no great luck. I was able to nurse only one more time (2x total) and it was for less than a minute. He is currently drinking around 10-12% of his meals through a bottle (remainder through his feeding tube). The nurse told me when he gets to around 60% he'll have another 2 weeks left in the hospital... so it seems like we're staying for awhile, which breaks my heart.

Next step is to do a swallowing xray, which means they'll take an xray of his throat/stomach while he is drinking milk. Tricky, considering he is not consistent with this skill. The goal is to see if the milk is going to the right place or if it's going to the wrong tube, etc. Based on the results from this, they'll reevaluate and come up with an exit strategy.

On the positive side of eating, they started him back on dairy last night! If all goes well over the next two days I may be able to get back to my normal diet, which would be so flipping fantastic. It's not that I need dairy in my life - in fact, when I'm home it's really easy to stick to the diet. The struggle is when I'm with other people - at a BBQ, out to dinner and drinks, dinner with the family. Oh well, it's a small price to pay for my boy and hopefully it will be a short period of my life.

Some pictures:





Comments

Post a Comment

Popular posts from this blog

Welcome to the World at 28 weeks

Image
Marco Dante Berg joined the world on April 8th, 2021 - arriving 3 months early at 28 weeks gestation and weighing only 2 pounds 10 oz. I decided to keep this blog to help us remember his story, keep our amazing and supportive community updated and potentially help future parents of extreme preemies navigate the long, pothole-filled, road to home. Our story started a little over 2 weeks ago on March 27th.  (Note - I know very little about the medical side of what is happening with Marco - I speak to some stuff in here, but my understanding is limited.) We had a great weekend - had my oldest son, L's, first baseball game, got my first dose of the COVID vaccine… then I started peeing myself. At 4pm Saturday I just started leaking - just enough to be embarrassed, but not enough to trigger any concern. The leaking continued all night, to the extent that I made my husband go buy me adult diapers. I figured I somehow lost my ability to hold my bladder and assumed it had something to do w...
Read more

3 Years Old

Image
Marco is 3! In some ways he is exactly what I expect a 3 year old to be - stubborn, adventurous, always trying to play with his brothers - in other ways he is so far from typical. In all ways, he is an absolute joy. Though we continue to have fear of the unknown, I’m starting to believe he’s going to be able to live a full, independent life. Our biggest question: how much does he understand? In most ways he seems like an average 1.5 year old if I had to put an age to his development. But then he’ll surprise us. Like when he sat down and started pointing and saying all the letters of the alphabet, or when he showed us that he not only can count, but recognizes all the numbers. Is he functioning at a 3 year old level but can’t tell us? Only time will tell. Some Updates: Physical Gross Motor Marco has a solid toddler walk - still using his full body and still a bit unsteady on his feet, but he’s gaining momentum every day and is pretty darn fast when he wants to be… which is all the time....
Read more

2 Years Old

Image
I cant believe my baby boy is 2 years old! He certainly does not seem like a 2-year old and I’m ok with that. We really don't see a lot of other kids his age so I don’t have a daily reminder of how far behind he is. I know he is, but it doesn’t feel that way on a regular basis. He just feels like Marco. Except for big milestones, like a 2nd birthday when I realize just how delayed he really is. I’ve been saying he’s about 6 months delayed - if you take into account his prematurity, he’s around 21 months, less 6 months delayed, that’s around 15 months - which is roughly accurate for where he is developmentally.  Physically: We've got a toddler! Just this past week or so he's started to do a standard toddler beginner walk: falling when startled or changing direction or when he gets excited, etc. - so really close. He took his first steps around mid-January. My other boys went quickly from first steps to walking, but not surprised Marco is taking a bit longer. Almost there tho...
Read more