Our Five Ring Circus: Progress

Tuesday, November 5, 2013


Even though Liam was born with a surprise Down Syndrome diagnosis, we have been extremely blessed, because he is healthy and high-functioning! 

The first few days in the hospital were filled with worry, because they had to test for multiple health conditions associated with Down Syndrome.  We were so relieved to hear that he did not have any of those conditions!  His failed hearing test was the only concern, but he ended up passing the in-depth hearing screen at 4 weeks old.

The only health issue we have had to deal with is Failure to Thrive, but he is finally fighting back!

Liam started to lose weight the day after he was born.  Over the following week, his weight dropped drastically.  He dropped into the 5 lb range, and that was the first time I started to worry.  His arms and legs were so skinny, and every time I lifted him up, he felt lighter than he had the time before.   We began to go to the pediatrician once or twice a week for weight checks.

Initially, it was the result of him being very lethargic and having a lazy suck.  We met with the lactation consultant, and started using a supplemental nursing device, which was basically a tiny tube coming from a bottle, that he drank from while he nursed.  He started to gain weight, but very slowly. 

He finally reached 6 lbs, but stayed in the low 6 lb range for a few weeks, without any gain.  The pediatrician said it was time to add a high calorie formula to his diet, in addition to breastfeeding. 

We continued with frequent weight checks, using the supplemental nurser, supplementing with the high calorie formula, and breastfeeding around the clock, but at 2 months old, he still hadn't reached his birth weight of 7 lbs 11 oz.   He had grown in length, but not much in weight.  It had reached the point where strangers and acquaintances were asking if he was a preemie when they heard how old he was.

We were at a loss.  I was producing plenty of milk and had successfully nursed 2 babies that were chubby!  He was nursing frequently, drinking his bottle, and seemed very content.

At 2 months old, he had his appointment at the Down Syndrome Clinic for the first time, and that led to his hospital stay. 

He was diagnosed with failure to thrive.  They found out that he had reflux and Laryngomalacia (floppy airways; it will go away).  The main reason he wasn't gaining was because he was burning off almost as many calories as he was taking in.  They sent us home with a recommendation of getting him to an Occupational Therapist as soon as possible.  Luckily, we already had a meeting set up with one prior to his hospital stay. 

Three days after he was released from the hospital, he was still weighing in at 7 lbs 10 oz.  He had been at that weight for over a week. 

A few days later, we had our first session with the OT.  She had him drinking efficiently from his bottle within 5 minutes.  She noticed that he was moving his chin a lot and not getting a good enough suction on his bottle. He was working way too hard to eat and taking in a lot of air. It was just a simple fix of pinching his cheeks together and holding his chin in place to "train" him how to drink properly.  He finished nearly 4 oz in 25 minutes.  Prior to that,  the most he had taken was 3 oz, and it would take over an hour to finish that! 

Three days after his session, at 10 weeks old, he FINALLY reached his birth weigh!  Yesterday, at his weight check, his pediatrician cheered as the nurse announced, "8 pounds!"

He still has a long way to go, but we are so excited over this progress!  It is very strange to have a 2 1/2 month old baby that is the size of a newborn! He is still wearing newborn diapers and clothing.  We're just happy he finally grew out of the preemie clothing!

He has been healthy and content through this entire ordeal.  He was just tiny.  Now that I know he's on the upswing, I can embrace the fact that I get to enjoy having a "newborn" just a bit longer than others do.  The newborn stage is my absolute favorite!

We have a few more weeks of weight checks ahead of us.  If he continues to gain consistently, we can wean him off the high-calorie formula that he gets twice a day, and go back to exclusively breastfeeding.  The pediatrician expects that he's going to be on the smaller side for quite some time, but is thrilled with his weight gain over the past two weeks.

Our original goal was to have him reach 8 lbs by the time he turns 3 months old, and he reached that goal 2 weeks prior to his 3rd month! Soon, he will kick that Failure to Thrive diagnosis to the curb!

Our sweet boy continues to defy all odds!


  1. He is a blessing!! Plus he has amazing parents backing him up! So glad to hear he's fighting back and being strong!

  2. That is wonderful news. One of my boys gets some OT - they are amazing. How awesome that it was just a matter of teaching him the right way to drink. Glad to hear he is doing well.

  3. Yay!! Go Liam. That's such great news and I am happy that they were able to figure it out relatively soon and not keep you wondering.

  4. Yeah, Liam!!!! Glad to hear he is gaining weight!!!

  5. I'm glad he's finally gaining weight, he'll be chubby in no time!

  6. So glad they figured how to help him eat more efficiently! Ryder was born two months early, so yes was like a newborn for a very long time, but I loved it.

  7. woohoo!!! sweet, precious boy :)

  8. Such good news Stef! Thank goodness for OT's right?! Love his smile in that last picture! So sweet! :)

  9. He is so adorable! So happy he is making progress!!! I hope things continue to go well for him. Keep up the positive attitude! :)

  10. He is such a little heart melter! Way to go, Liam!

  11. Yay for progress!!! He's smiling a lot more too, so now that he's actually getting some food into him without trying so hard, he must just be so happy!! (you too!!)

  12. You do have a little fighter on your hands and with all the love that you have in your family he will continue to make great strides. You have been so blessed! I am so happy for the progress! Enjoy your weekend! :)

    Mama Hen


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