Home

Streamers glittered our house. New flowers potted on our front porch. A sleepy little two year old clung to his Grandma. We were home! Grandma is a saint. She managed to keep Koen entertained for an entire week. Cleaned our house. Stocked our fridge. Not to mention all the sweet surprises she left for us to find.
It was good to be home. Time to adjust to our new life at home. Pumping, unpacking, playing, washing. Repeat. It has been crazy. Koen is adjusting to life with rules again... Haha Dave is adjusting to life back at work and I am adjusting to a whole new life. Before the surgery I pretty much had it all figured out. Meals, naps, play dates and such. We run a tight ship around here. I won't lie. We like a schedule. So here we are four days in and I'm feeling a little more normal. I'm getting used to pumping, washing bottles, and holding HMae all day. She is a little clingy. I think I would be too if you chopped off my tongue. I can't say I mind. Before the surgery she wasn't the type of baby that would snuggle in the crook of your neck for a nap. She's an independent girl. But now I get this... 

and this...

And while we are busy snuggling brother is doing this...

hahaha! I certainly hope my boobs don't look like my knees.  And just this evening when I put HMae to bed, I came out to the living room to find him doing this.

He is quite the mime lately. When he is not being precious like this he is busy giving me a run for my money. Typical two year old! Needless to say we are surviving. By the grace of God I have not lost my mind, yet anyways.

Tongue Reduction Day 4

The Plastics Team came in around 7am and gave us the go ahead for HMae's extubation. Maybe because I was looking forward to it so much, a part of me was terrified they wouldn't allow it for one reason or another. The Green Team which was the team of doctors and nurses that were following her in PICU came in a few minutes later with a plan. They sent us off to breakfast so they could prepare for extubation. I don't think I have ever eaten that fast in my life! We flew up the elevators and stood patiently aside her bed waiting for the respiratory therapist to come in. He came in and did his business and what I thought was going to be an awful- horrible- terrible thing, totally wasn't! And then the nurse said "You can hold her, Mom" I died! I had no idea I would get to hold her that fast. Silently craving a little snuggle for days then this happened...

A few hours later she woke up and was ready to go. She was a whole new baby. And of course very feisty. Once those sedation meds wore off completely she tried time and time again to rip out her NG tube. The fire alarm suddenly rang and I turned my head to see what was going on outside our room and OUT it was! The little stinker. After that she played and played and played. The ladies from the Child Life Program came in to bring her some toys. They spent a little time admiring a take-along mobile we brought with us. I hope someday we can donate a few to them. I know how much they would appreciate having them.

 After she played all day it was time for a rest. I cannot explain how happy this last moment made me. I knew then that everything was going to be just fine. We had survived and a few short days later we would get to go HOME!

Tongue Reduction Day 3

Happy Father's Day to the best Daddy in the world!

Just one more day... We kept saying this all day. It was the only thing we could hold on to knowing that in just one more day HMae would be extubated and we would be one step closer to getting our baby back. This was probably the hardest day in PICU. They had to back off her sedation medication so that she would be awake enough to breath on her own. This meant that The Hubs and I spent almost three hours pinning her down to the bed so that she couldn't extubate herself! It was then that I finally lost it and so did he. Our night nurse wasn't our favorite. So I tracked down the on-call Doc and had him come take a look. He decided that we needed to up her sedation meds so that she could be comfortable until extubation. We were so relieved! A few minutes later she fell asleep. She was breathing mostly on her own anyway so he did not think it would be a problem. It was then 11:30pm and we hadn't eaten anything for half the day so we decided to go downstairs for a milkshake date. It totally makes sense but they don't let you have any food in PICU. I had never thought about it before we were there. Imagine being without food for days and in walks "Uncle Joe" with a bag full of McDonalds french fries! Not cool. It was sort of a blessing in disguise because although we didn't get in three square meals a day when we did get to step out for a few, it was a good refresher. It was a good time to collect ourselves and reflect on the past few hours. We nestled into our sardine can but a few hours later I awoke to Julius. He was her respiratory therapist. Julius is a saint!  Julius noticed that Haddie was stirring a little when he walked by so he went in to calm her. He also knew that we were sleeping and didn't want us to have to wake up. So there he was soothing my baby to sleep and when I arose he told me to go back to bed. I would need my rest for tomorrow. He has a way with babies. The calming softness of his voice and his sweet words of encouragement were music to all of our ears. I hope God blesses that man in every way possible.

Tongue

 

I went to town this afternoon to run some errands. Just me and HMae and I was quickly reminded of exactly why we are going ahead with the tongue reduction surgery. HMae had fallen asleep on our errand run. I went into one last store toting her in her car seat. When a women commented on her sticky out-y tongue the very second we walked in the door. She was sweet and by no means did her words offend me but It has me wondering if HMae had a huge nose would people comment nearly as much? If only they knew what my sweet girl is going to have to go through in a few weeks. I would tell them but I always feel guilty weighing their hearts down. The truth is she doesn't just have a big tongue. Her tongue seems minor when in comparison to the other implications of BWS. She also has a much greater chance of developing childhood cancer by the time she is ten. She will have to have blood tests every six weeks to monitor her AFP levels. Ultrasounds every three months. Physical therapy, occupational therapy, speech therapy. Another possible surgery to correct her kidney function. At first, I could have crawled into a corner and cried for days. But I instantly realized none of that would do any good. We try to flip it to the positive side as much as possible. Yes, we have long car trips as we travel to CHLA but we also get to have our girly time! We make laps around Nordstrom as we scour the shelves for the newest headbands and bows. We rest our heads in comfy hotels. We have the best road trip buddies that keep us company during the long drive. We wear the cutest band-aids after blood draws. And don't forget she gets to wear the most adorable of bibs to catch all that drooly drool! It is what it is and we couldn't be happier to be on this journey with our sweet girl.

 

As many problems that this little tongue has caused and will cause in the future I must say I'm going to miss it! You know that feeling when you are looking at someone and you know there is something different about them but you can't quite place what it is. A haircut maybe? Shaved off a mustache? I feel like that is how we may feel after this surgery. This little tongue is so much a part of her personality. We have started to notice that as HMae gets older she is gaining more control over it and has started to make the funniest noises. As cute as it may be breathing and eating and talking and sleeping are much more important. :)

Road Trip

The in-laws have invaded! Ma & Pa Kettle as the Hubs and I refer to them parked in our driveway on Friday around 2pm with no intent to leave for two weeks. Living in Colorado, they traveled for two days to see their two adorable grand babies and us too of course. After a few days of playing with the kiddos it was time for Haddie and I to make our trip to CHLA. This time we were going to meet with Plastic Surgery. Graciously, Ma Kettle offered to come a long for the ride. Now 300 miles sitting in a car with your mother in law might seem like a nightmare for some. But again I am lucky. We had so much fun. We headed for Burbank where our hotel was but of course had to detour to IKEA! Duh. Poor Ma Kettle was a little overwhelmed by IKEA and all that it is but still had fun. Later we checked into our hotel then traveled downstairs to The Daily Grill where Ma Kettle treated me to the largest chicken pot pie one could ever consume. It was bigger than my head! HMae was such a trooper this trip. She hardly cried at all in the car and actually slept most of the way. Although she did pay me back by not sleeping at all the entire night in the hotel. Not sleeping is actually normal for us lately.
In the morning we traveled down the road a little ways to CHLA. A nurse came into the waiting room gathered us up and took HMae back to a room for some pictures. They propped her up on a Bumbo seat that sat atop a stool and took a few pictures to document her large tongue. After waiting for what always seems like an eternity(20 min or so). Dr. Hammodeh entered and chatted a bit with us about HMae's condition. He was knowledgeable and quick to respond to any questions we had without hesitation. Ultimately we decided to go forward with a surgery that will correct the abnormality that is HMae's tongue. I had decided long ago that we would not walk out of that office without a surgery date and I thought I would have to fight for it. I was wrong. Within about 5 minutes of conversing, Dr. Hammoudeh insisted we do this as soon as possible because waiting wouldn't do us any good. So we got it. June 15 is the day. You better believe we are terrified! But we also know that we have to do it for her. We promised her that we would give her the best, most liveable life we could provide.
Needless to say we had one very successful trip. Ma Kettle offered so much comfort to me. I just wish we could have her closer. And as for Pa Kettle, Koen is obsessed with him. He even makes Pa rock him to sleep at night. I think Pa Kettle is a very happy man!

A little about HMae's pending surgery...
It is formally called a Tongue Reduction surgery. It will be preformed by Dr. Hammodeh and his assistants. The surgery itself will take about two hours. HMae will remain in Pediatirc Intensive Care Unit for about 4 days. After that she will be released into a general recovery room. We are anticipating about a week in the hospital.
Please ask questions if you have them. I will answer them the best I can. I am going to tend to this blog as often as I can to keep everyone updated throughout our journey.

Much Love,
Missy Hughes