We're hooo-oooome!

By the time we were leaving the hotel to come back home, our daughter was allowed to be out of her splint. The doctor said we could put her in it if she seemed uncomfortable, but to otherwise allow her to use her arm as much she wanted.

The plane trip back home was uneventful, which was just fine with us! We had used Park, Ride, and Fly, a valet service, so our car was ready for us when we returned. I highly recommend that anyone flying a difficult journey use this service! It just took the stress of airport parking right out of the equation.

The drive home seemed to take forever. We were in rush hour traffic, and all we wanted to do was get home to our dog. Our church was providing us with dinner for a few days, and we didn't want to miss that meal!

If you ever wonder if you provide a happy, loving home to your toddler, simply take them away from it for a week. Our kid was so glad to be home! Her mood immediately improved, and we could see that she was going to be okay. It was a nice mommy moment to see her so glad to be where she knows she is most loved.

To be honest, I've never been so glad to be home, either. I love our house (when it isn't spewing it's contents onto my floor from some unfortunate plumbing mishap), but the town we live in leaves much to be desired. On this day, it was the most wonderful city on the planet. Texas had been a short trip, but we were emotionally exhausted. We were happy to hang around the house and do nothing for a few days.

While mom and dad are trying to be careful with baby and encourage less physical activity (because we are paranoid!), baby is running around the house jumping off of couches. While I do not condone such activities, I did allow it a bit, because she had been through so much. And, it was cute. And sort of a little miracle. If an adult had just been through this, they would lay in bed and cry. They would complain mightily. She just wanted to jump off of couches.

One down....two to go!

Hermann Memorial is a beautiful facility, and one of the best hospitals in the country. It's located in the Houston Medical District, with tons of other medical facilities. It is easy to get lost, but we quickly became accustomed to the layout.

After surgery, we were taken to a private room in the Children's wing, and he nurses were ready to greet us and help us in anyway we needed. They provided diapers, wipes, and all the other things you need to care for your little one, so we know next time not to over-pack.

For most of the day, we took turns running around the building on errands, and one of us was always in her room. I sent my husband back to the hotel for the overnight part, but neither of us slept. It's really hard to think about anything but that poor, sweet, medicated baby and how she is going to do with all of this.

Very late that night, after my husband had already left, she finally felt like getting out of bed. So, she ate a little bit of food and then we went on a ride in a toy car for awhile. She was out of it, but I could tell she was glad to be doing something normal again. She then went to sleep for the night, but we had to bring the car into our room to make sure we got to play with it in the morning.

The morning came, and seemed to go on and on. We knew we would be released that day, barring any catastrophes, and we were ready to go. To get back to some kind of normalcy. We wanted to take our baby home. BUT, we couldn't, because our plane didn't leave until the morning. So, it was back to the hotel for one more night.

We had to wait for the doctor to come to release us from the hospital, so while we did that, we played in the playroom provided by the hospital. They have a room and also a pretend park with roads on the carpet and fake trees in the middle of that area. It's a peaceful place to meet other parents and let your kids run around.

We met a great couple with a child with Mitochondrial disease. It was a great opportunity to connect with other people who really understand your struggles as a parent of a non-traditional child.
The doctor came to release our daughter while I was out on an errand. I was sorry to miss him, but then passed him in the hall and he stopped and told me everything he had just told my husband, whom had bothered to be present. It was so wonderful of him, as he didn't have to do that. He's a busy man, and the job was done.

The discharge paperwork was easy, and we were on our way to our hotel by lunchtime. The baby slept a lot on this day, too, but it was more difficult because with her arm in the splint, she didn't fit in the hotel crib! We put her in a queen bed, surrounded her pillows, and tried to be quiet.

Upon leaving, the doctor had instructed us that we could take her splint off any time after 48 hours. This was such GREAT news! Sometimes kids need to wear the splint 24/7 for a very long time. It was so encouraging to us as her parents that she would be free to use her arm during the daytime. It would be sore, of course, but not forever. She would be able to recover more quickly this way. We were truly blessed with this news.

I'm a Little Teapot

Immediately after finishing the operation, Dr. Nath came out to talk to us. He explained that things went well and that she would be waking up soon. He was very detailed and answered our questions. He told us that someone would bring us to recovery soon, and that he would see us the following day.

More waiting. We were taken back to the recovery room when she began moving around. It was really, really hard on mom. I'm sure it was difficult on dad, too, but I didn't have time to notice, being that I was a mess. As she began to come out of her haze, my poor baby was crying for her mama. I didn't know how to pick her up, because she was attached to so many things, and wearing this crazy teapot get-up on her upper half. It was frustrating, but her nurse was great. She got that baby into my arms as quickly as possible. I cried with her for awhile (the nurse politely pretended not to notice), and then she went back to sleep.

While you are in the recovery room, there are other children and parents there, too, for lots of different reasons. All the kids are in various post-op stages, and it probably one of the saddest places I have ever had to visit. It made me grateful that there is an end to our journey, that we won't spend her whole childhood waiting in recovery rooms. It made me grateful, also, that this place existed. That we were allowed to have care there. That other children will have better lives because of their visits there, too.

She woke up the second time and, to my great relief, wanted to eat Cheetos. If my kid will eat, she is just fine. She LOVES to eat. I knew she was going to get through this. That she wouldn't hate me forever. As long as I was tall enough to reach the snack cabinet, we could remain friends.

When you become a parent, you always love your kid. But, sometimes these things have a way of making you realize the fierceness of it. The need to protect them. The tenderness you feel in your heart; the way it pulls when you look at your baby, all wrapped up in brown Velcro, eating Cheetos. The pain you feel inside your soul for them, the longing to take their place. I realized then that if anything ever happened to this child of mine, I would just lay down and die. I was proud of us for making this decision to better her life, but at that moment, I wanted it all to just go away.

After awhile we were transported by a chatty man to the Children's wing of Memorial Hermann, and it was time for more waiting. Our daughter was sleeping and would for most of the day and night. The great nurses managed her pain, and my husband and I sat around and looked nervous for awhile.

She would wake from time to time, and we would give her juice or hold her or play with her, but mostly she slept. Mostly we worried. The staff was right on top of everything, and were professional and friendly. I loved her first nurse. It was a really good environment for our family to settle down and move on to the next step.

She always slept this way. Didn't seem to bother her. Weirdo.

The Moment We've All Been Waiting For

So, before we knew it, after all the personal struggles and financial hardships, the big day had finally arrived. Time for the Mod Quad! The alarm went off at 6 a.m., but my husband and I had already been talking about how we hadn't slept a wink for about half an hour. We tried to be quiet, which is impossible in a tiny hotel room. The baby was sleeping right next to the bathroom, making it quite a challenge to get ready without waking her. We knew she would be hungry - she's always hungry- and so we wanted to let her sleep as long as we could before the long day ahead.

I was a mess. I didn't feel good, and I was crying for my baby. For her pain, for her many struggles in her short life. I knew it was the right thing for us to do, but I was so afraid for her. None of knew what to expect that morning. I spent some time throwing up, and that seemed to help a little.

The baby woke, and we put on our brave faces and left for Memorial Hermann Hospital. The day before, someone had shown us where we were expected to be at 8:30 that morning, and the admissions paperwork was pretty much already done. We had paid every red cent we had to our names the day before, and had no problems while we waited. And waited. And waited. And then, we waited somewhere else. This place had toys, so that was easier.

During our time in the playroom, our daughter was distracted by new toys and children, and I was able to fill out the rest of the forms. We were visited by the anaesthesiologist, the doctor, a nurse, and the therapist who made the splint. We felt well taken care of, and no one made us feel silly for being completely freaked out.

Just when our poor baby couldn't take another moment of having an empty belly, a savior brought what they called "happy juice." It was just what everyone needed to loosen up before surgery.

About 15 minutes after taking the stuff, our daughter couldn't stand up. That was okay with her, though. She thought it was hilarious! She stumbled around for awhile, and then settled into my lap, happy to be with her mommy in this beautiful place full of colors.

A few minutes later, "they" came to take my baby. Some people with a bed on wheels and masks on their faces. It is SO hard to let your baby go, to let them take her behind the doors. But, they let us put her favorite lovey next to her, and we let them take her. It was to take about an hour for the surgery, and we could wait "out there." We opted to go to the cafeteria, which actually has okay food and decent seating, but neither of us really ate anything. If we tried, it didn't taste like anything.

We waited. We read. We fidgeted. We stared at the walls. I listened to a lady on the phone for awhile. She was offered a job, but had already accepted another. That was interesting. There isn't a lot to do while you are waiting but wait.

The Day Before

Once we actually got to the hotel, things were just fine. We were so exhausted we all ate a cereal bar for dinner and went to bed. The hotel staff hadn't put a crib in our room yet, but our daughter didn't care. She was asleep by herself in a queen bed in no time flat.


In the morning we had breakfast at the hotel restaurant and we were off to meet with the Therapist who makes the splints for Dr. Nath. It. Took. Forever. They have a cute little play room with tons of things for the little ones to do. Our little one was not interested in the least. She wanted only what she could not have.

On this visit, they create a splint made out of this molded plastic stuff and some kind of foamy stuff, and it Velcros all over the place. It's crazy. We have a relatively well-behaved child, and the situation is a little intimidating, so it went quickly as she sat pretty still. Then, after waiting...waiting...waiting, we were sent on our way with a very funky teapot-looking contraption in a hideous brown color. With us went a list of instructions on the care of said teapot, and a note from the doctor to the airline stating that my child is not smuggling guns in her splint and that it need not come off for any reason.

Later that day, we had a pre-op appointment with the doctor. It was the first time we had seen him since the trip to Chicago, and we had lots of questions. The wait, again, was long. It was okay, though. This appointment would change our lives in a very positive way. I took the time to talk to the other parents in the room. I showed my daughter a girl her age wearing the splint, so she could see it. I'm pretty sure she didn't really get it, but it helped me to see that this beautiful girl didn't seem to mind it at all.

We spoke to this family at length. Well, mostly the mother and I talked while the dads did what they could to entertain the kids. And I loved her. Should anyone find themselves in a situation where they are in a room with someone who has so much in common with you, please use that opportunity! The wait was long, but I really didn't notice. It was nice to not be consumed with worry for a moment. The other mother is a caring, wonderful woman who clearly loves her baby the way I love mine. The way a baby should be loved. She is on this roller-coaster of insurance-travel-money-money-money, too. We clicked right away, and remain friends to this day. We will stay together for our next trip to Texas, as the girls will both be getting the same surgery at the same time. To be able to connect with this other family in such a way was the best part of the trip, for me. There just really isn't anyone who understands a BPI mom the way another BPI mom does. Not even a BPI dad, try as he might.

Finally, we were called back to the next room. Somewhere else to wait, though not nearly as long. Nurses took pictures of our daughter's injury using all kinds of fun tricks that come with the trade. They were really encouraging to us about her abilities and made us feel at home. The doctor came shortly after, and he explained the procedure in more detail. He was easy to talk to, and he was sweet to our girl. The only surprise was that when we walked in, we thought we needed only two surgeries, and when we walked out, we knew we would need three. The first is called the Mod Quad, and it was what had brought us to sunny Houston that day. The second is the Triangle Tilt. We were told that we could have that surgery as early as three months after the Mod Quad. As long as your child is up to it, getting them close together and while they are young will yield the most benefit. We were instructed not to feed her after midnight, and to be at the hospital at some ungodly hour in the morning. We thanked him profusely, paid the lady at the desk twice as much as we had been prepared for, and headed back to our room.

We had dinner and put the baby to bed. Tried not to act too nervous around her. Got her back up around 11:oo to have a snack and a bath, which was a mistake. She was pissed. Well, she's always cool with food, but she was NOT thrilled with the bath. I don't imagine we were the favorite residents of the holiday at midnight that evening. But, you know what? Y'all shouldn't use up all the hot water. You never know when a poor baby needs to have a comforting bath before the biggest event of her life!

We all went to bed. The baby slept. Of course. She didn't know what was coming. We did. We did not sleep. Not a wink for me, and not much more for my husband. It is so scary to hand your precious, wanted, loved, amazing child over to a bunch of strangers in white coats with masks over their faces. There is so much pressure to stay calm about it for them. There is risk with every surgery. She is so small.

We were up by 6:00, and we didn't want to eat, but she did. So, we had to distract her for awhile, which was difficult, because I was barfing all morning. My stomach was just in knots for my baby. I wanted it to be me. I wanted her to understand that we were doing it because we loved her. I wanted to say everything I ever might say in her lifetime. I wanted to protect her from it all, but it was already too late for that. Now I just had to be there for her while she faced this challenge, and help her through the next ones as well.