Brotherly Love

One question we get all the time is how Liam is adjusting. 

Our answer definitively is always, “Great! Liam loves Matthew!”

And it’s the truth. Darren and I are so impressed with how Liam has stepped up into his big brother role. 

His daycare teachers tell us that Liam talks about “my Matthew” a lot.  Here he is showing off Matthew to all his daycare friends. They all loved meeting the baby. 


He always wants to hold Matthew. So we do our best to accommodate him. I just love this photo of all three boys in my life. 


And he always wants to rock Matthew and make sure he gets settled in his swing. 


And the feeling is mutual. Matthew gives big smiles to his older brother too.

I just love how they were born to love and admire each other so much! 

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Another milestone hit 

Matthew continues to show us that he’s such a mover and a shaker. Even at 2 months, he could go from belly to back. It’s just a part of who he is, being a busy little guy much like his older brother. 

Yesterday, May 11, 2017 was a big day. For months, Matthew has shown that he might roll over from back to belly. He’s always go from back to side and then stop right there.

Yesterday, while we were hanging out, he was complaining a lot. I laid him next to his toys and he complained. I put him on his belly and he complained. I couldn’t figure out what was wrong. Eventually I walked away for a few minutes and then he complained A LOT.  I thought “How sweet! He misses me!” 
When I finally went to check on him, he had stopped complaining. Instead, he just looked happy. He was just hanging out sitting on his tummy. He had rolled over!!!


I was such a proud mama. I even emailed his PT.  I told her what he did but I admitted  I wasn’t sure if it was an accident and if/when he might do it again. 

Well, Matthew decided to prove me wrong. Later on that night, we went to get Matthew up from a nap. It turned out that he was sleeping on his tummy. 

I guess he’s mastered going from back to belly!!! 

4 month update 

Matthew’s 4 month appointment came and went. He’s doing great. He’s in the 66th percentile in weight and in the 78th percentile in height on the DS scale respectively. 

After multiple visits with the lactation consultant at Seattle Children’s, renting a scale, and bouts of mastitis we came to the conclusion that nursing is not in the cards for Matthew. His respiratory issues make it really hard for him to nurse. The lactation consultant assured me that we did everything possible short of syringe feeding to try to get there. 

Subsequently, we have decided to started weaning. Now that the weather is getting better I just want our family to enjoy the amazing Seattle summer, which can’t be done with pumping in the picture. It’s a slow process but I know it’s the right decision for both boys. 

As for therapy, I’m starting to understand how early intervention works. You work with them early to emulate the movements so that when the baby is ready, he has an understanding on how it works together. The good news is that Matthew has great instincts when it comes to movement. We are working on army crawling and sitting. 

We have been putting Matthew in the high chair so that he not only gets used to sitting but also gets ready to take solids when we try in a few months. At first, he could only sit in the high chair for 3 minutes. But now he can sit closer to 15 minutes. 

Here’s a picture of Matthew sitting in the chair. He loves to sit in it. The world looks so different when you’re sitting up! 

Some good news 

 Last week we had a follow up appointment with the cardiologist. As you may recall, as a newborn, there were two little flaps that most typical babies have but as a precaution the doctor wanted to see us at 3 months. Well, after an examination and another ultrasound, our cardiologist said that not only did Matthew’s heart look good but “(we) never have to come back here again”.  Yay!!!

Also at his most recent therapy appointment, Matthew decided to be a show off and roll from tummy to back right away.  He’s acting very much like a typical 3 month old.

Matthew continues to amaze me with how strong and resilient he is. Our therapist continues to manage our expectations because he will have delays due to his low muscle tone, but for now we enjoy the victories as they come.

2.5 month update 

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.

  1. 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.
  2. 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.

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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..

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!

 

Laryngomalacia and a sleeping wedge 

We’ve had several appointments the past few weeks.

A couple of weeks ago, Matthew started developing a cough and I was paranoid enough that I decided to take Matthew to see Dr. Partridge, a pediatrician who specializes in Down syndrome. She herself has a 15 year old with DS.  The only problem is that she’s on the other side of town and not convenient to be our everyday pediatrician. However, she was amazing and had nothing but awesome things to say about Matthew.

Turns out that Matthew has laryngomalacia which is a floppy airway due to his low muscle tone. This is what makes it hard for him to breathe. With the floppy airways comes reflux. So she went ahead and prescribed that we put Matthew on Zantac to help.

Floppy airway should go away in the first year. The reflux may last longer.

But the real big win was that Dr. Partridge was supportive of us cutting down to 6 bottles a day, which means cutting out Matthew’s middle of the night feeding. I still have to get up in the middle of the night to pump, but at least one of us gets a good 6 hours of sleep.

Additionally we went back to Seattle Children’s OT last week to talk about nursing. Matthew’s breathing is getting a little bit better but he’s still not ready to nurse yet as his energy level is too low when he takes bottles.

Seriously, it’s a workout for him to eat. So we are pumping and bottle feeding for the next 4 weeks and probably even longer.

Since the goal is to make him breathe better, the OT made Matthew a wedge for him to sleep in. It helps with the reflux and should help him build his muscles to breathe better. We joke that it looks very “silence of the Lambs”ish.

We are working with the Boyer Clinic to develop our family plan tomorrow so more updates to come.

Family visits 

It’s been a while since we’ve updated. We have had some family visits and lots of appointments all while dealing with the newborn fog. 

Grandpa and grandma visited from Texas. Both grandsons loved the extra attention they received.

Liam enjoyed going on lots of “dates” and eating lots of cookies with grandma and grandpa. We were also thankful that Darren and I got to take Liam on a date with the two of us..just like the good ole days..while grandpa and grandma watched Matthew.

And while grandpa and grandma visited we actually got snow in Seattle.. a rare occurrence indeed!

Enclosing some pictures for fun.