Happy due date, Marco!

3 months (almost), 5 days adjusted.

What we thought would be a truly amazing Independence Day with Marco, was in reality just another day in the NICU. Baby boy is 8pds, 8oz of snuggly goodness, but despite hitting his due date, he still can’t join us at home because he hasn’t mastered eating.


Thankfully, he seems to be getting better each day at sucking/swallowing so we may be able to bring him home soon! I'm trying to manage my expectations and keep 3-4 weeks in my head, so that I'm not super disappointed if he doesn't come home earlier - but hearing from the nurse practitioner (NP) that it could be earlier, potentially 2 weeks, was such an amazing, amazing, amazing feeling. First time in a while that I've been able to see the end.

Eating update:

We did an eating X-ray this past week and it went well. Saw minimal aspiration, which means the milk is going where it should. They also learned Marco does much better with faster flow nipples (easier to get milk, takes less energy to suck), which was surprising to the docs and will hopefully be a game changer. Plus, they decided to thicken his milk with special, dairy-based, reflux formula (now that he's good with dairy again - more on that below!) With the thickened milk and faster flow nipple, he did really well with his feeds the past couple of days - finished his whole bottle two feeds in a row, which is such great news. That is what led the NP to suggest we may go home earlier.

Dairy:

Mama’s eating dairy again! For the past week we’ve been giving Marco my old milk- pre dairy exclusion- and he’s tolerated it well! The docs don’t seem concerned at all, so I’m letting lose! Whoo hoo! Here's hoping he remains healthy and I can say buh bye to the dairy-free, soy-free life.

Events:

Another thing that may hold us back from coming home are the periodic events Marco continues to have. Reminder: events are when his breathing stops (apnea) and he cannot quickly fix it himself. He had two last night and they had to intervene to help him breath - which is so scary. Before we can come home he has to be clear of any events for at least a week - so we'll see how it goes.

That's all for now - here are some pics:





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