The Wait Is Over

After 8 long days of waiting, we finally received the results of Liam's biopsy. We have been living in fear since the end of September. The what ifs were continuously running through our minds, and worry took over our lives.  

We were anxiously awaiting and dreading the phone call from Liam's doctor, and it never came in. After 24 hours of waiting to hear from the ENT, I decided to send an email, and we heard back shortly. They were just waiting for their Advanced Specialists Team to review the results as well, to make sure nothing was missed. We were thrilled to hear that Liam does NOT have lymphoma, and that the mass that was removed from his neck is benign! It felt like a huge weight was lifted from our shoulders!

I'm keeping this short and sweet, by simply sharing the best news! Our many prayers were answered, and Liam is just fine. He is 9 days post-op, healing well, and was able to return to school in person today. We can finally put this behind us, and move forward. This year is looking GOOD!

You can read the full story here: The Reason Behind My Absence

The Reason Behind My Absence

I've been MIA. For a while, actually. First it was extreme morning sickness that took over my life, followed by a needy new baby and juggling five kids, then Covid, and now we're facing a scary medical issue with Liam. I keep hoping life will calm down enough to let me focus on my blog again, but family comes first. Always.

I thought waiting for the test results after Liam was born was the most difficult thing we've gone through as parents. That really isn't true though. See, in my heart, I already knew he had Down syndrome, so the results of that test weren't really a big surprise. The waiting now is agonizing.

We have been so lucky with Liam's good health. Other than Celiac Disease, which runs in Grant's family, Liam doesn't have any of the common conditions associated with Down syndrome. He rarely gets sick, he has only had a few ear infections, he doesn't need glasses, he never needed tubes in his ears, he doesn't have low tone, he doesn't have sleep apnea, and he doesn't have a heart condition, thyroid disorder, or stomach issues. Liam has only had a few respiratory illnesses that required breathing treatments, only two medical procedures (scopes under anesthesia), and only two hospital stays to see why he wasn't gaining weight (everything was normal) and when he had cellulitis following a minor nose injury. Liam is healthy, and incredibly energetic and strong. In the grand scheme of things, we really have been lucky...until now.

Sleep Studies 101: The Complete Guide To Your Child's Sleep Study

Sleep disorders are very common these days! It's estimated that 22 million Americans have sleep apnea, and a large number of cases go undiagnosed. More people are having sleep studies done, and if you have a child who has Down syndrome, it is highly likely that your child will have a sleep study by the age of 4. 

We went through this process last January, and I remember feeling so nervous about it the day of the procedure. I had NO idea what to expect, other than from the guidelines I was given to prepare for the sleep study, and even a quick search on Google didn't yield much information. I'm not the only person who looks for advice. One of the most frequently asked questions in my Down syndrome groups is about how to prepare for sleep studies!

Because there isn't much information out there for parents like me, I compiled a complete guide so you and your child can rock their sleep study...

Our Merry Christmas...Just Not As Expected! (Welcome Wednesday Link Party)

Our Christmas this year was a happy one, but it definitely didn't turn out as expected! If you read my Christmas Eve post, then you know that Liam was not feeling well.  As soon as he woke up on Christmas morning, I knew our holiday was not going to go as planned. We made the most of it, and still managed to have a great day with our loved ones!

Expect the Unexpected: First Broken Bone

When I wrote this post last week, while feeling completely overwhelmed, I had no idea that life was going to get more difficult. I quickly learned to expect the unexpected while raising my kids, but I'm always stunned when the unexpected hits. 

In our 12 years of parenthood, we never had to deal with one of our kids breaking a bone. There have been plenty of ER visits thanks to our boys, Lily's knocked out tooth and Lexie's allergic reaction on Christmas, but no breaks. The complete irony is that I had just mentioned how thankful I was that none of our kids had ever broken a bone. I guess it was just time for us to add THAT to our already long list of parenthood experiences!

We just never expected Lexie to be the first of our kids to break a bone. Skateboarder/Basketball Player Dylan topped the list, with fearless and adventurous Liam coming in at a close second. But our careful, cautious, responsible daughter? No way!

On Thursday evening, we headed to Lexie's school for Open House. Lexie is one of those kids who loves school, and she was so excited about showing us around her school during Open House. She eagerly led us down the hall to her classroom, stopping several times along the way to show us some of her projects and artwork hanging in the hallway. She was beaming by the time we went into her classroom.

Lexie was so excited to show us her desk, her cubby and some projects that she finished. We said goodbye to her teacher and headed downstairs to see the art project she loved the most. We took a detour into the gym before we headed toward the art room.

I sat Liam down so he could run through the gym. When I looked up, Dylan bumped into Lexie and Lexie stumbled, fell to one knee and put one hand on the ground to stop from falling completely. When she stood up, she looked really embarrassed, but there was something more in her expression. She was awkwardly holding her wrist and fighting back tears.

I immediately called Grant over to check it out. We thought she maybe just sprained it, but we weren't certain. We decided to head upstairs to see if the nurse was in her office. Lexie's art project was on our way, so we stopped to look at it, but we could tell her excitement about the night was ruined, and we felt absolutely awful. Lexie NEVER gets injured, and it hurt to see something she was so excited about get ruined.

We decided to take her to the ER. Grant and the boys went to get the car while we went to the nurse's office to get ice. Unfortunately, nobody was there. Lexie started to get dizzy and look very pale, so I made her sit down for a few minutes. She said her ears were ringing, so I knew shock was kicking in and she was close to fainting. We went to wait in the lobby, and ran into Dylan's basketball coach. She took one look and agreed we should take her to the ER.

Thankfully, we have a great ER just minutes away. Lexie started to cry in the car and tell us how much it hurt, so I gave her an Aleve. Although the drive was quick, she just kept saying she wanted a doctor to help her, so it felt like it took forever. Grant dropped us off and left to drop our other kids off with my dad. 

We didn't have to wait long before she was taken to an exam room. They gave her some ice, and Lexie cheered up quickly, and was back to her usual happy self. The doctor came in to check her and they took her for x-rays immediately after.

As the x-ray tech walked us back to the exam room, she asked if they had given her something for the pain. I said I had given her an Aleve and she said she was going to need something stronger. I asked her if she saw something on the x-ray, and she replied, "I really can't say, but yes." She told me that she was so impressed with how calm and happy Lexie was, because most adults can't handle an injury like hers. At that point, I knew it was going to be a long night.

Grant was waiting in the room when we got back and the doctor came in a few minutes later. He handed us Lexie's x-ray and pointed out the severity of her injury.

Not only had she broken her wrist, but the bone was completely off to the side. As if that wasn't already enough, she also had a buckle fracture. This all happened from her simply putting her hand down to brace herself from falling. It was unbelievable.

The ER doctor said that she was going to need to have her wrist set under sedation, but mentioned that she might need surgery based on the severity of her injury. He put on a temporary cast, then we were transferred to Children's Hospital in Pittsburgh. We stopped by our house to grab a few necessities, like Blankie and BunBun, then made the short drive into the city.

We got to the second ER, which was overflowing with people, and we waited. And waited. And waited. (Side note? WHY do people use the ER as a doctor's office?)  It was a hectic night in the ER and the hospital didn't have any rooms available, so the kids who had just been admitted were spending the night in the ER exam rooms. We finally got called back 2 1/2 hours after we arrived. It was nearly midnight. Surprisingly, Lexie stayed happy and calm the entire time, despite us not being allowed to give her anything else for pain.

Once we were in the exam room, things got moving very quickly. The doctor came in almost immediately to examine Lexie. She left to take a look at the x-ray, then returned to tell us what was going to happen. The orthopedic doctor would be coming down ASAP and trying to set her wrist under complete sedation. If that failed, they would have to take her to the OR.

While we waited, the nurse put on a movie, then gave her some pain medication. Another nurse came in to place the IV, which took two tries, and put monitors on Lexie to prepare for the procedure. Shortly after 1 AM, the orthopedic doctor came in to tell us that Lexie's injury was very unusual and would be very difficult to manipulate back into place. She said she was going to do her best, but if she was unable to, Lexie would need surgery as soon as possible.

At 1:30 AM, they gave her the medication to put her under. That was the worst part for me. Lexie was handling the entire ordeal like a champ, but to watch her get put under was completely unnerving. It was so tough to see her like that, but the alternative for her would be incredibly painful. 

Grant and I had to leave the room for the procedure, but Blankie and BunBun were allowed to stay with her. The wait felt like it took forever. I tried to read, then browse through my Facebook feed, but it didn't help. I just kept praying that everything would be okay.

Just after 2 AM, we were called back into the room. Lexie was waking up, but very groggy. The orthopedic doctor was able to set her wrist, but Lexie needed a cast much bigger than expected to stabilize her wrist. We were told that it was definitely a great sign, but surgery wasn't completely out of the question. It wouldn't be imminent, though.

We had to stay in the ER until Lexie woke up completely and was monitored for an hour, ate a popsicle and kept it down, and got another set of x-rays. By the time we were allowed to take her home, it was almost 4 AM. All three of us were starving since we hadn't eaten since noon, and completely exhausted.

It was a long night in two different emergency rooms, but Lexie blew us away with her maturity, calmness, and poise while dealing with such a painful injury. Even the entire ER staff kept saying it was unbelievable just how well she was handling it. That kid is amazing, and so much stronger than her wimpy mama! She was even smiling and waving goodbye to everyone as she left the hospital in her big cast and a hospital gown.

We ended up stopping at a convenience store to pick up some prepared food, so we could go home and eat. As soon as we pulled into the garage, Lexie got out of the car and threw up all over the floor. No food was in her future, but Grant and I sure enjoyed that convenience store food!

By the time we finished our food, it was already nearly 6 AM. Dylan, Lily and Liam were at my parent's house, so we decided that Grant was going to stay home from work and we were going to let all of the kids stay home from school. Lexie crawled into bed with us and we fell asleep quickly. The next thing I knew, it was noon!

Lexie slept until after 2 PM that day. When she woke up, she was still groggy and nauseous, and complaining of some pain, but she was in a good mood.

Lexie adapted well to having her cast over the weekend, but she is bummed about how much she can't do right now. No riding her bike, no jumping on the trampoline, no riding her scooter and no swinging. Going outside isn't the least bit fun. It's such a bummer that it happened at the beginning of Spring, but her cast will be coming off just before Summer break. She's mostly upset over the fact that she can't participate in hip hop until the cast comes off. I feel so bad for her!

Right now, we don't have too many answers just yet. Lexie has an orthopedic appointment on Tuesday afternoon, and we should know more then. Specifically, if they think she will need surgery and how long she will need to have the cast. We're praying that her wrist is healing well and that no surgery will be needed. And obviously, 6 weeks in a cast will be much better than 12!

To those of you who sent so many thoughts and prayers on Instagram and Facebook, THANK YOU. We read each and every one, and we were so thankful for all the love for Lexie. She's doing great right now and I will update when we know more!

Lexie was so excited about Open House this year. Although it didn't turn out anything like how we expected, I have no doubt she will always remember her 4th Grade Open House!

Knocked Out: A Parenting Fear Come True

I had my evening perfectly planned out. A friend offered to take Dylan to basketball so I didn't have to take three other kids. A night at home is rare and I was thoroughly looking forward to it! I put on my pajamas and cooked a delicious dinner. While I cooked, I also worked on my planned blog post for tonight on fun Halloween play activities. I wanted to finish it early so my husband and I could spend more time together after the kids went to bed and so I could go to bed before midnight. Grant even made it home from the office earlier than usual. We were just getting ready to sit down to eat dinner when one of my parenting fears came true...

First came the thud, then the bloodcurdling scream.  I turned around to see Lily face down on the floor at Grant's feet. Blood was spraying everywhere. The moment that I dread every single time one of my children falls face first actually happened. There was no sigh of relief this time. There was only Lily shrieking,  "MY TOOTH IS GONE!"

I scooped Lily up off the floor and as we ran toward the bathroom, I noticed it. I immediately thought her other loose tooth had been knocked out. WRONG. She was missing her top front tooth which wasn't even loose at all.

I yelled out to Grant that her tooth was knocked out and he ran in to take over. I'm a wimp. I can't handle blood and I can't handle tooth gore. Even wiggly teeth make me cringe.  As I dialed Lily's pediatric dentist's emergency number I kept reminding myself that it was just a baby tooth and that it would have fallen out in a year or so anyway. But still...to have it come out that way is so awful!

Our plans for the evening changed completely. Instead of enjoying a relaxing evening at home, we spent hours in the ER. The truth is, nothing goes as planned when you have four kids and there's literally never a  dull moment! Accidents happen. Lexie and Lily were just playing and Lexie bumped Lily and sent her flying to the floor. Lily's tooth got knocked out and Lexie felt awful. It was just one of those things that I always feared would happen but honestly didn't really expect it to!

Dylan was coming home from basketball just as Lily and I were running out the door so he came along to help. Thank goodness because we couldn't get the blood to stop and Lily was panicking!  He was able to hold the towel on her mouth and calm her down while I drove the short distance to the ER.

We made it into a room quickly and by that point the bleeding slowed a bit. The wait to see a doctor, however, was unusually long and it resulted in one little girl who was exhausted from the traumatic incident.

The doctor finally came in and said that everything looked okay. The tooth somehow came out with the roots still intact. There weren't any tooth fragments left behind, her jaw wasn't broken and the cuts in her mouth and on and around her lips would heal quickly. It was such a relief to hear that! The only lasting effect would be the fact that she quite possibly will have a hole in her mouth for over a year before her adult tooth finally comes in.  That definitely made me a bit sad, but I was relieved she was okay. It could have been much worse!

Just in time for Halloween, Lily has a Jack O' Lantern smile! (And a swollen nose and lips!)

As soon as she was discharged, I took her straight to the convenience store and bought her a slushie. It was the least I could do! Rumor has it that the tooth fairy also needed to get some cash back...

By the time we got home, Lily was back to her vibrant, outgoing self! She's definitely tougher than I am. Most adults can't even handle getting a tooth pulled without pain, but she was acting like nothing ever happened!

That baby tooth was bound to come out in a year or so. It just came out (much) sooner than expected. At least she has an exciting story to tell one day and the word on the street is that the tooth fairy is going to leave her a larger amount than usual tonight. That tooth is a BEAST with those roots still attached. (EWWWW!) Those knocked out teeth just deserve more money!

Ironically, my friend came over for dinner on Monday night and we started reminiscing over the time when 11 month old Lily hit her face off of a ceramic floor while on vacation. As we ran toward her, we both expected her top two baby teeth to be gone. They weren't, but since that moment, I panic every time my kids fall face first.

 

Seeing one of my kids get a tooth knocked out has always been one of my top parenting fears and it was every bit as brutal as I expected. There was just SO MUCH BLOOD. I keep reliving that moment over and over again and it makes me cringe every time. We were just lucky up until tonight. I guess we are technically still lucky because only a baby tooth that would have come out in about a year got knocked out. It would have been much worse if it was Liam, Lexie or Dylan's tooth! And Lily took it like a champ!

Farewell, cute little baby smile that was still there just a few hours ago...

...and hello, toothless!

Stay tuned for my Halloween content tomorrow! My blog is just about more than Pinterest-worthy content and sponsored posts. I started it to document my life with my kids 8+ years ago and I'll never give that up. Sometimes life happens and scheduled blog posts have to be pushed aside for real updates. I plan on sharing my family as much as I can from the good to the bad to the downright disgusting moments!

Here's to a MUCH calmer weekend! (I hope.) (Fingers and toes crossed.) (Please?)

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Go Big or Go Home...or Something Like That

It has been a week since I was able to blog, but I have a good (or not so good) reason.  Life has been a bit crazy over the past week!

We are very lucky that Liam is so healthy.  Children with Down Syndrome tend to have weakened immune systems. Thankfully, Liam is just like our other kids, and doesn't get sick often.  The big difference is that the older kids tend to get mild illnesses and recover quickly.  When Liam gets sick, he gets sick very quickly, and it hits him harder.

Unfortunately, his good luck streak came to an end a few days ago.

On Friday morning, Liam developed a low fever.  We were visiting my parents, and my mom noticed he was tugging his ear.  She suspected he had an ear infection, but I discovered his bottom molar had broken through. His fever went down with a dose of Tylenol, and he was fine all day. That evening, he spiked a fever again.  Just like earlier, even though he had a low fever, he was acting perfectly normal.  No other symptoms were present. He was eating great, nursing great, playing, laughing, and smiling. 

On Saturday, he was fever-free and acting like his usual self.  I just assumed his molar was bothering him the day before, so we continued with our scheduled plans. He was fine! Around 7:00 that evening, I noticed he felt warm again.  I took his temperature, discovered he had a fever, and gave him medicine to bring it down.  20 minutes later, he started coughing, and it sounded just like croup. Everything went downhill after that. 

By the time we went to bed, his breathing was loud and his breaths were quick.  By 3 AM, his fever spiked to 105.3.  That happened when he aspirated his milk and ended up with pneumonia last winter, and the doctor told us that high fevers often caused rapid breathing. We assumed his breathing was due to croup and the high fever. We treated his symptoms and monitored him, but he was still struggling at 8 AM. Grant and I were really worried at that point.

I took him straight to the Urgent Care that is close to our house, as soon as they opened.  I couldn't believe how quickly he went from acting normal to getting really sick. 

The doctor walked into the room, saw how he was breathing, and immediately called an ambulance.  She gave him a breathing treatment as we waited, and explained that he probably had flu or pneumonia, and that a baby breathing the way he was could get worse very quickly. She was so nice, and kept talking, probably to keep me calm.

The full impact of what was happening didn't hit me until the EMT wheeled him out on a stretcher, through the very full waiting room.  Everybody was staring at us and saying they hoped he felt better, and I had to blink back tears.

I have to say, I never expected that was how our morning would go! I expected a chest xray, antibiotics, or a breathing treatment. Instead, Liam and I ended up with our first ambulance ride ever.  I hope we never have to do that again!  Luckily, he fell asleep on the way, and the EMT didn't have to intervene. We chatted a bit about what they would probably do in the ER, and discovered that he actually transported Grant's dad when he was sick.

As we neared the hospital, I was surprised to look out the back and see Grant trailing us. Grant somehow made it to Urgent Care, picked up my car, and caught up to the ambulance on the way!

When we pulled up to the ER, the hospital looked deserted.  The EMT who was driving opened the doors, and we heard a rush of water.  Water was pouring out of the ceiling above us.  A nurse came out and led us into the ER, where alarms were going off and strobe lights were flashing.  It was completely empty, and looked like something out of a movie! Apparently a pipe burst just outside of the ER and set off all the alarms!

So...our first trip to the ER was an exciting one!

Grant came into the room before the EMT left, a nurse took Liam's stats and got him hooked up, and we waited for a doctor.  Our poor little man was so sick.  It broke my heart!



I was seriously impressed with the care Liam received in the ER.  Not one, not two, but THREE doctors cared for him.  They made sure someone came into the room every 15 minutes to examine him.  We have been to Children's Hospital of Pittsburgh many times for appointments, but this was our first visit to the ER. 

They did a rapid flu test and checked his lungs. They gave him medicine to bring his fever down, gave him an oral steroid, and started an Epinephrine (my phone apparently autocorrects this every time!) breathing treatment.

Shortly after the treatment, Liam started to perk up a bit.




The flu test was negative, and his lungs were clear.  His chest was very congested and his nose started to run while we were there. They diagnosed him with Croup, Bronchiolitis, and RSV.  They said he could probably go home because his oxygen levels were good, but they had to monitor him for a few hours before we could leave.

Liam was finally able to rest comfortably.



By that point, it was afternoon, and we were starving.  My amazing friend, Steph, showed up with food for us.  She's just that awesome.  Liam woke up, and had another first.  First ambulance ride, first ER visit, and first time eating french fries!!!



As we waited, we started to get a glimpse of our happy boy again!




Liam remained stable, and was finally discharged from the ER after a very long day!  We were so relieved to go home.

On Monday afternoon, we went to Liam's pediatrician for a follow up.  His chest was still very congested and rattly, but he seemed to be improving.



After we got home, he ate half a banana, and took a nap.  When he woke up, he was struggling again.  His high fever was back, he was coughing a lot, his breathing was very labored, and he whimpered and moaned for hours. He threw up everything he drank, and had diarrhea.  He refused to eat or drink. He had another awful night, just like the one he had just before we went to the ER, so his pediatrician wanted to see him again.  He definitely seemed more sick than he was when we were in the ER.

Sure enough, he was really sick. In addition to Croup, Bronchiolitis, and RSV, his doctor suspected he had a sinus infection.  Surprisingly, his ears were completely clear!  She gave him a breathing treatment in the office, and sent us home with a nebulizer, adult doses of albuterol, and an antibiotic.  He was smiling a bit after his in-office treatment, but declined rapidly again.



Yesterday was just awful. Liam was so sick.  His fever never dropped below 103, and even with breathing treatments, he struggled to breathe.




I've been saying for days that we have never had a child this sick.  It really is draining and so hard to watch.  I spent hours with him wrapped around my neck, because it was the only time he was comfortable. My human scarf is just the sweetest!




Liam cried from 4-8:30 last night, and finally fell asleep after a breathing treatment. He was so miserable!



He had another rough night, and although his fever is lower today and he played for a few minutes, there isn't any significant improvement.



RSV, Croup, and Bronchiolitis is an awful combination!  Liam doesn't get sick often, but when he does, he makes it dramatic!

I'm praying he starts to feel better.  He goes back to the doctor on Friday morning. Their ultimate goal is to keep him out of the hospital, and allow him to recover at home.  We really miss our smiling boy who is so full of joy! 

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!

Overnight ER Visit and Week 46 {365 Project} In Review

Last night was a first for us.  Our first middle-of-the-night sick visit to the ER with one of our kids.  Dylan has been in the ER before, but it was to get his forehead stitched up.

Our kids were blessed with good immune systems.  They don't get sick often, but when they do, it's a big deal! They usually manage to keep from catching everything that's going around, but we've hit a rough patch. Most recently, it was Lexie's week-long fever/virus.  Soon after, Lily ended up with a runny nose. Dylan was the last to get it, and it came on fast.

On Friday night, at bedtime, he complained that his throat hurt.  When he woke up Saturday morning, he had a mild cough that sounded like Croup, but he was running through the house within minutes.  He acted completely normal all day, so we went to our friends' house, as planned.  After a few hours of playing, he started to act grumpy and tired, and he quickly fell asleep.  Just before we left, he woke up with a horrible, croup-like cough.  He was crying and having a hard time catching his breath.  We returned home, but it quickly became evident that he needed help.

After watching his father die last month, struggling to breathe, Grant was beyond worried.  Dylan was acting sicker than he has ever been. He couldn't stop coughing, his lips were slightly blue, and he couldn't catch his breath. 

Just before 1 AM, I took him to our local ER.  Luckily, we were the only ones there.  The nurse heard him cough once, and promptly called to have him set up with a breathing treatment.   The X-Rays and strep test ruled out pneumonia and strep, which left him with croup.  The doctor gave him a strong dose of some medication, and said he would be feeling better within 24 hours.  We stayed for a few hours, so he could get breathing treatments. He was finally released around 4 AM. 



True to form, Dylan recovered at lightning speed.  He woke up late this morning, and only coughed a few times. He has improved so much since last night. He is almost completely better!

WEEK 46

NOVEMBER 11th

We spent the morning/afternoon at home. I finished a lot of projects that needed done around the house.  After dinner, we went to my sister's house to celebrate my nephew's birthday. Afterward, Dylan went home with my dad for a sleepover. That evening, Grant and I got caught up on past episodes of the shows we watch.



NOVEMBER 12th

The kids were off school for Veterans Day, so we stayed home ALL DAY!  It was gorgeous outside, so we spent some time outdoors before the storm/cold front came in.  It was a much needed relaxing day at home!



NOVEMBER 13th

The big kids went back to school.  That afternoon, I went to Dylan's school for parent visitation day.  His class was celebrating his birthday early, so I got a chance to play a birthday dodgeball game with him and his class.  It was a lot of fun watching what he does at school!  That evening, I hosted a Pinypon Party.  After the party, we went to our friends' house for dinner. 



NOVEMBER 14th

Grant drove the kids to school. After picking Lexie up, we came home for a quick lunch, then I took her to gymnastics.  The rest of the evening was spent at home.




NOVEMBER 15th

It was a typical Thursday.  That evening was Moms Night Out!  I met my friends at Red Robin for a great dinner, and then a few other friends and I went to see the 10 PM showing of Breaking Dawn 2!  It was a fantastic night with wonderful friends!  I was up really late and didn't get much sleep, but it was definitely worth it!




NOVEMBER 16th

After I drove the kids to school, we went Christmas shopping to pick up a few presents.  We picked Lexie up from school, then spent the afternoon/evening visiting my parents.  We got home around 9, and I did a lot of cleaning before finally getting a chance to relax.



NOVEMBER 17th

We spent the morning/early afternoon at home.  Later that afternoon, the kids and I spent some time with my mom.  We returned home, ate dinner, then went to my best friend's house for the evening.  We had a great time!  The kids played, then fell asleep early.  We ended up staying past midnight since they were sleeping. Dylan woke up as we were leaving and looked and sounded horrible, which led to the ER visit overnight.