It’s been a while since we’ve updated. We’ve had lots of guests in town and various appointments to keep up with. So we haven’t had the time to update the blog. Our new normal keeps us busy between appointments and getting adequate rest!
Two Month Doctor’s Appointment
Matthew had his two month appointment and the doctor was very pleased with his growth. Matthew is in the 59th percentile on the Down syndrome scale in weight and 50th in length and head circumference. So the doctor is happy with our approach of pumping and bottle feeding.
Matthew’s biggest struggle continues to be breathing which impacts feeding. He works so hard to breathe and subsequently eat. Eventually Matthew will outgrow this. According to our doctor, his floppy airways will harden up in time. But for now what we’re doing is working.
Additionally we’ve created a nice feeding schedule for Matthew as he is a good sleeper at night. He takes 6 bottles a day, the first one at 6 am and the last at 10:30pm.
Occupational Therapy & Early Intervention
Right now, Matthew goes to two different places for therapy. We may eventually drop one to minimize appointments, but for now I’m keeping appointments as is until we are moving full steam ahead with early intervention. The logic being that early intervention will be our primary therapy moving forward but the process has been a little slow going..
For now, our priority is feeding. We have two goals by the time I go back to work in mid May.
- For Matthew to take a bottle like a typical baby so that when he’s in daycare, his caregivers can give him a bottle accordingly.
- To get to 100% nursing…ideally by the time I go back to work, as it will be too challenging to maintain the pumping schedule I’m doing right now when I’m working full time.
Seattle Children’s OT
We are fortunate that there are specialized occupational therapists/lactation consultants that provide feeding programs for babies with unique feeding needs. Our occupational therapist is also an IBCLC. So she’s great at answering questions about babies and moms.
The good news is that Matthew is developing and growing stronger. The OT commented that Matthew is getting better and stronger every time she sees him.
Unfortunately, Matthew still is not ready to nurse. He can nurse in small increments of time but gets tired very quickly because he works so hard to breathe due to his floppy airway. Subsequently, he doesn’t take a lot from me. Even bottle feeding is a workout for him.
The good news is that he’s graduated from the nursing wedge to sitting upright while taking a bottle. We’ve been working on this all week and he is getting a lot faster. However, the one downside to this is that Matthew’s reflux is worse because the milk is coming in faster.
Also, we got the green light to “practice nurse” so 2 times a day, Matthew and I nurse for 5-10 minutes before he takes a bottle. The OT is not sure if Matthew and I will be ready to nurse 100% by the time I go back to work, but we’re going to give it our best shot.
Meanwhile, I’m still pumping to provide breast milk for Matthew. Just this past week, I finally dropped the middle of the night pumping which has created a more sane mama. As of now, we’re still able to keep Matthew on 100% breastmilk. Not sure how long that will be the case, but we’ll try our best to maintain this without going crazy. And if not, we’re open to supplementing with formula.
The one downside with the therapy at Seattle Children’s is that it is hard to secure appointments..We only go in once a month, which feels like an eternity when you’re pumping constantly.. So I’m hoping we can make more progress via early intervention..
We are working with the Boyer Clinic which will provide therapy for Matthew until he’s 3. They will come to him wherever he is and provide the ongoing therapy needed for him as he develops early motor skills like sitting, crawling, walking, etc.
We feel confident that it’s the right clinic that will provide the support that we need. Our therapy starts next week.
A few weeks ago, we met our therapist who is both a physical therapist and a feeding therapist. When she met Matthew, she felt that he had made a lot of progress (in terms of feeding) from Matthew’s initial evaluation at one month..
In addition to evaluating his feeding therapy, she also briefly looked at his gross motor skills. She (and our doctor) seem to think that Matthew is pretty strong, which is encouraging.
The one thing I took away from the therapist is that as of now, Matthew seems in line with most babies. However, eventually, as moves and development become more complicated (ie. crawling, walking, talking) it’s going to take Matthew longer to get there because they require more coordination. These things aren’t as intuitive for Matthew so he is going to have be trained on these behaviors.
How We’re Doing
We’re doing ok. Right now, Matthew feels like any other baby. He smiles, he coos, and has a lot of blowouts. And we’re starting to learn more of his personality. He’s a very good natured, active little guy who talks to his toys and rarely cries.
We’re continually learning to take things one day at a time, to be in the present and not focus too much on the future, which is a hard discipline.
We know it is inevitable that Matthew will have developmental delays but we have no idea what that will look like as there is such a spectrum with Down syndrome. It’s hard to know what to expect until we get to know Matthew, which is scary of course. But we are doing our best to give him the best start possible. And so, we’re learning to trust God moment by moment.
Some other positive news is that we’ve secured Matthew’s spot in the same daycare that Liam goes to. I think this will be great for him to be around other kids to help him develop. Matthew is such a social little guy anyways, I think he’s really going to like it.
That’s it folks.. Hopefully there will be more to come soon. Next week we have our meeting with the physical therapist.. and the following week we have our follow-up echocardiogram. So more to come!