Progress

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!

Liam's First Hospital Stay

The past few days have been an absolute whirlwind!

Prior to last week, none of my children have ever had to stay in the hospital. Liam was the one to break the record!

Wednesday started off great!  I woke up to a flood of emails in my inbox.  I couldn't figure out what was going on until someone mentioned that they saw my story on AOL's main page!



I was so honored, and I was brought to tears by every email and comment I received.  I read them all and will be responding to each one!

Shortly after sending the kids to school, I had to meet Dylan at his book fair.  I had to take Lily and Liam with me.  As we were getting out of our car, in the pouring rain, my purse broke, then Lily's umbrella broke. I'm fairly certain we were the entertainment of the day for the office staff.   It was so nice to see Dylan, though!



After running a few errands, we came home for lunch.  Grant came home from work early, and we went to Liam's first appointment at the Down Syndrome Clinic.  The Down Syndrome Clinic is through Children's Hospital of Pittsburgh, and has two doctors on staff.

All the positive things that we heard about the Down Syndrome Clinic were true.  The doctor and the coordinator are simply amazing.  They both have family members with Down Syndrome.   They were so personable, and I don't even think there could possibly be a better doctor out there to oversee Liam's care.

The entire appointment was so positive.  The doctor had a great outlook on Liam's future and had personal experience to back it up.  The doctor said Liam looked great, but he was concerned that he hadn't reached his birth weight yet.  He weighed in at 7 lbs 10 oz, which was 1 oz below his birth weight.  He asked the coordinator to schedule a swallow test and an appointment at the ENT for Liam.

I was surprised at how much time the doctor spent with us.  He eventually left to look at Liam's growth chart that was faxed over from our pediatrician, while the coordinator came in to talk to us.  She was just as wonderful as he was!

When the doctor knocked on the door and came back in, I had a feeling things were going to change.  He explained that Liam was still at the exact weight he was 6 days ago, and there should have been a slight gain.  He thought it was better for Liam to be admitted to the hospital, because he would get a bunch of tests done quicker than he would if we had to schedule them individually.

He apologized repeatedly, but said he thought this was the way to go so we would be able to get answers quickly.

All of our plans for the rest of the week instantly changed.  We rushed home to prepare for our hospital stay.  I packed bags for Dylan, Lexie, and Lily, kissed them goodbye, and sent them to my parents house.  Grant and I packed our bags, loaded up the car, went through the drive-thru for some dinner, and drove to Pittsburgh. 

As soon as we got to the hospital, we went to admissions, and just waited for our room to be ready. A sweet older man came down to get us, and as he stood up from talking to Liam, he walked right into the glass panel. We felt so bad for him, because he hit his head HARD!  After that excitement, we finally made our way up to our room.

Liam was stripped down to a diaper and wrapped in a blanket.  The doctor came in immediately and examined him. He gave us a general idea of the game plan.  The first thing they wanted to check were his oxygen levels throughout the night.  The nurses hooked him up to an oxygen monitor and left us alone to get settled in.



Grant immediately turned on the Tigers/Red Sox game.  He eventually ran down to the cafeteria to get us snacks.  The night dragged on, and nurses stopped in the room every half hour. Just after midnight, we attempted to go to bed. I thought Liam was going to refuse, because I had to hold him the past few hours, but he fell asleep quickly.



Sleep didn't happen for me.  I woke up every time a nurse came into the room.  At 3:00, when Liam woke up to eat, I just decided to wake up for the day.

Early that morning, before we could even eat breakfast, a doctor from the ENT Clinic stopped in to see us.  He had an appointment scheduled for Liam for a scope in the clinic.

Shortly after he left, transport came to get us to take us down to the clinic.  It was pretty awful.  I had to hold Liam tightly in my arms while a nurse stabilized his head.  The doctor went through his nose and down his throat to check to see if there was any blockage.  I stared at the ceiling or monitor, fighting back tears, as Liam cried and gurgled.

Based on what they saw, they decided that they needed to take him into the OR and put him under general anesthesia for a deeper scope.  That was the last thing I wanted to happen, but we signed the consent forms, and went back to our room to wait.



The wait was awful.  He wasn't allowed to eat for 6 hours.  He slept for a few hours, then woke up to eat.  Unfortunately, we couldn't feed him, so it escalated to a scream fest.  During the scream fest, we had to take him down to get x-rays, so it made him even angrier.



Thankfully, our dear friend, Amber, arrived with lunch and she was able to get him back to sleep. 

Another doctor came in around the time they told us he would go into the OR.  She examined him, and realized that they hadn't put the IV in yet.  He needed fluids before going to the OR, so the nurse came to get him, and took him for an IV.  That procedure obviously woke him up, and he was even angrier than before!

The only thing that made me smile during all this was a surprise text from one of my closest friends, Steph, telling me that her baby girl had arrived on her due date!  I had just talked to her 3 hours before, and she had a few contractions far apart, but nothing else was going on!  The excitement helped keep my mind off what was going to happen.

Finally, transport came to get us and take us down to the OR.  As we walked into OR, I began to cry.  I have never had to hand any of my children over to be put under anesthesia.  Horror stories kept running through my head, and I just wanted to take him and run out of the hospital.

My anxiety only got worse as the anesthesiologist went through the list of the could-happens.  He could end up paralyzed.  Kids with DS are more likely to go into cardiac arrest under anesthesia.  He could end up coming out with a breathing tube. He could end up in the PICU.  I could only imagine the worst.

Handing my baby over and walking away was one of the most difficult things I have ever had to do.

Grant and Amber did their best to keep my mind off of things in the waiting room, even though they were nervous, too.  Steph sent a picture of baby Violet, so that was a nice distraction. Mostly, I prayed that everything would turn out okay.

And it did!

The doctor came in and told us that everything looked good.  He had Laryngomalacia, which is basically floppy airways, and reflux.  The Laryngomalacia should resolve itself by the time he is 18-20 months, and Zantac 3 times a day will help his reflux.

We have been so blessed that Liam is in good health and is strong.  Other than a few physical traits, you would never think he had Down Syndrome right now.  We were so relieved to hear that he just had conditions that would go away over time.

The nurse led us to the recovery room.  Another nurse was feeding our sweet boy some Pedialyte.  She smiled at us across the room and told us to take our time, because she didn't want to give him up. I, however, was very anxious to have him in my arms!

After a few minutes in recovery, we were able to return to our room.  I was so happy to have Liam safely in my arms!




Amber eventually left, we made phone calls to our family, and we ordered dinner from the cafe. We settled in for another night in the hospital.



Grant watched the Tigers game again, then we headed to bed around midnight.  After less than 3 hours of interrupted sleep and a very emotional day, I was exhausted.  Apparently we both were, because the doctor came in and completely examined Liam without waking us up!

The next morning was off to a slow start. We met with another doctor, I cuddled Liam, ordered my meal, and ate my breakfast.



After I ate, the feeding team showed up to observe a nursing session.  Grant, of course, felt uncomfortable, so he left the room for a while.  They also observed a bottle feeding.  They decided that they needed to do the cookie swallow test to make sure he wasn't aspirating.  Once again, I had to starve my poor baby for a few hours.

He was content for a few hours, but then the hunger pains kicked in and he was miserable.  Grant and I took turns trying to soothe him.

 


Transport finally arrived to take us down for the cookie swallow test.  The doctors fitted us with vests, propped Liam in a seat,  and took x-rays as I fed him different bottles.

Thankfully, he was NOT aspirating!  I almost cried when they explained that I would have to stop breastfeeding if he was.  Surprisingly, it was more difficult for him to bottle feed.  They even tried different flow nipples and thickening his formula. 

He returned to his room much happier than before.  It also happened to be his 2 month birthday!  His stats were 7 lbs 10 oz and 21 3/4 inches!




He took a little nap while we waited to see if we were going to be released.



Finally, a doctor came in to talk to us.  He was officially diagnosed with failure to thrive due to Laryngomalacia, reflux, and feeding difficulties.  Thankfully, they were all issues that would get better with some time and some work! 

She quickly got the discharge paperwork ready, and the nurse came in to take out the IV and unhook him from the oxygen monitor.  We were so relieved that our hospital stay was over! 



We gathered our stuff, and happily loaded up our car.  We stopped at the pharmacy and stopped to have dinner out with Grant's family on our way home.

We had quite the homecoming!  Dylan and Lexie ran out to the driveway screaming.  Lily screamed my name from the top of the stairs.  She was so excited that when I picked her up, she peed all over me!  Dylan and Lexie made us a pizza and had the table set for when we got home, and they both rushed to scoop up their brother. 

We eventually convinced them to go to bed, and we finally enjoyed some peace and quiet with our sweet baby boy!



Our hospital stay was unexpected.  It was stressful, emotional, exhausting, and disruptive to our normal routine.

BUT...I can't say enough great things about Children's Hospital of Pittsburgh. They make sure that the entire family is well taken care of during your stay. The entire staff is amazing, from the doctors to the nurses to the janitors to food service to the transporters.  Prior to Liam's stay, we had only been there on an outpatient basis.  I can honestly see why it's consistently voted one of the best children's hospitals!

As for Liam, he's doing great other than his (lack of) weight gain.  He will be taking his medication for reflux, and the floppy airways should improve.  An occupational therapist and a nutritionist will be coming to our house once a week.  They will help him learn how to feed more effectively.  He will get weighed then, so I won't have to make the weekly trek to our pediatrician's office anymore!  And hopefully, HOPEFULLY, he will reach his birth weight and start to gain!