Friday, December 12, 2014

With great power, comes great responsibility.

Here we sit, in the waiting room on the 17th floor. Bennet's surgery is over 1/2 way done.  I'm exhausted. Took an anxiety pill but am too sleepy now.

There is an unmentioned hierarchy in this waiting room. We got here early and all the recliners were spoken for so we came into the very back RMDH room and sat on a couch. Ate some Pop Tarts and lemonade and put on the Today show.

I had to stop there. I was falling asleep and couldn't make sense. We waited and got good report after good report. Everything went as planned. We were finally able to see him and it was overwhelming. I had trouble finding where there was baby under all the tubes and bandages. The Rn told us what they all were but that didn't really help. It was just too much. We sat there and laughed. We laughed about the tubes, we laughed about our nurse that looked like Jesus. We laughed at my puffy feet and my mom posting total lies about what was happening on Facebook so we were checking Facebook to see what we were doing. We surrounded our baby with joy and laughter and I didn't cry. Ok, maybe a tear or two, but no body wracking sobs that were certainly but a baby whimper away. But he laid quietly, and we laughed.

I had wished for a plan, an instruction book on how to do this. How to act, the words to say, the choices to make. But now I think I'm glad we had to make it up as we went. We chose joy over sorrow. We chose hope over fear. We chose glory to God over despair over why us. We chose to give our child to God and let his will be done over ..... well, there wasn't really another choice there was there. Your will be done on earth as it is in heaven.

So many thousands of people prayed for my son today. I can't even fathom how many prayer lists, churches, quilting groups, sewing machine collectors, people in shops, people we've never met, all praying for OUR baby. And God heard them. I think I'm glad there was no book.

There is a social hierarchy in a waiting room. Some people have been there for months and some wander in unsuspectingly and plop down in prime waiting room real estate. Us for example. Jeremy was taken aside by the receptionist and informed that we had staked the prime TV front property and to leave our stuff there or we would lose our spot. We have complete TV control, a place to lie down, and access to the pizza at it's hottest. I did lose control of the remote at one point and had to watch HGTV but their baby was sicker than ours and wasn't doing as well so I figured it was the least I could do. We ended up watching Ghost because it's the movie that crosses all boundaries of language and situation to touch hearts. Also, who doesn't like Patrick Swayze?

Jeremy thanked the lady that brought us pizza from the RMDH. She looked surprised. No one else thanked her. Some complained. I think pain takes away manners and I can understand that but I'm glad Jeremy showed gratitude for the service and comfort they offered us.

Wednesday, December 10, 2014

Well THAT escalated quickly...

This morning I woke up excited to get to bottle feed Bennet again. It was so wonderful getting to be a mommy and satisfy my baby. I got dressed, ate breakfast and loaded up in the wheelchair. I collected my giant Bag O Milk I had pumped for him amongst praise from the nurses and went to NICU. They wouldn't let us in. The unit B they just moved him to with the other cardiac babies was in lockdown for a surgery. I was beyond sad. Good thing I started on drugs already.

We wheeled back silently to our room when I crawled into bed and slept. Woke up and Jeremy said they had called and it was back open so without ordering lunch we ran back over with more milk. I had missed the 12 feeding but would be there for the 3:00 bottle. We pulled up to his bad and there were several people around and they started in giving us info. His o2 stats had dropped overnight, the cardiology team met and decided to do the balloon septostomy today, like now. So no more feeds, he would be intubated, sedated and oh yes, by the way, his switch surgery is Thursday. I sat for a minutes while she continued talking and I had to stop her.... wait, Thursday? big surgery, not next week? ok. ok.

Things started to fly then. Dr's in and out, informed consent forms that Jeremy signed after we discussed all the things that could go wrong. She had a great sales pitch though that she was a perfectionist and didn't allow things to "happen". I like that. More Drs. more equipment. A portable X-ray machine, a rolling table of sterile tools, I sat back in my wheelchair and watched to see how much I could take. I watched the nasal Versed slowly calm him down and make him restful. I took pictures constantly. Of the Drs, of my baby, of the overwhelming machines. I wanted to remember it all.

After they intubated his limp little body Jeremy wheeled me out and I started to feel the waves crashing over me. We went back to my room and right back into bed. Ordered lunch this time since it was 4. Jeremy went downstairs to get pizza delivered and I had a salad. Shortly after we ate the phone rang and they said they stopped the procedure. This was news to me since they had seemed pretty darn committed when we left.

We were to meet with the cardiologist at 6 so jeremy rested and I sat and then we went. Arriving there Bennet was still intubated but resting very quietly for the first time. My poor guy. When they intubated him his O2 stats went up from lower 70's to upper 70's and then Dr Fraser came in early from his surgery to watch and said he would be fine on those numbers until he did the surgery on Thursday. I'm glad. Maybe tearing a hole in my babies heart would have helped, but it would mean another repair Thursday and longer with his heart stopped.

We sat and just stared at him for awhile sleeping. We will meet Dr Fraser later today I think and Thursday most likely my baby will have his heart changed. I'm falling alseep now. More tomorrow. almost there..

Monday, December 8, 2014

Bennet day 4

I've been in a bit of a daze but wanted to type while I'm feeling so happy. Bennet is doing so well today. He woke up with a fever of 101 so they decided not to do his balloon septostomy until maybe Wednesday. I was miserable in pain and depressed in bed while Jeremy went to Katy to get our stuff and do some laundry. When Jeremy came back NICU called and said Bennet was going to be able to eat and I wanted to give him his bottle so I got dressed and ate lunch just in time for Psych to show up finally and interview me and give me good drugs to help with my panic and depression. When they left we rolled to NICU and there I got to give him his first bottle that he drained in 3 minutes and got to support him with my hand. The second bottle three hours later he wasn't interested in but then he had to move his bed to a different ward so we left it unfinished. The nurse said he took his 9 o'clock bottle in less than a minute though. I'm so grateful for minutes of mommy time.

Monday, November 24, 2014

d-TGA, contractions and sewing

Dextro-Transposition of the Great Arteries. It's an effort to recall all of that when telling people our story. More often than not I have to turn to Jeremy to say it. Maybe I'm just resistant to saying it. Maybe big words be hard. I don't know but I don't feel like struggling with words when I'm already struggling to keep it together.

Last night in Joann's we got a call that 3 of the four boys are sick. Nathan has a sore throat and cough, Noah has fever and one of his ear aches, Henry has his croupy cough. Not sure what to tell her to do as taking four little boys to a clinic is sure to get Freddie sick and be exhausting for her. Hoping they feel better on their own very soon.

Last night after we got home and talked to the boys, seeing how they felt, I started having contractions. They started about 10 minutes apart, went to 8, down to 4 minutes apart a couple of times. Probably the most painful ones I've had. They lasted several hours but I fell asleep finally and they settled down. This morning my abdomen is really sore like I've been doing crunches. Baby is moving ok but it was a really rough night. Just wasn't sure whether to load everything up for an hour drive to the hospital. Jeremy was so sleepy.

Today I am just going to do next to nothing. Might cut out parts for Madison's birthday skirt and finish some little blankets for the bassinet. Probably would feel better to go out but pretty sure that would stir things up even more. Went to Katy Church of Christ yesterday and ate lunch with them in their visitors lunch. That's enough gadding about for me.

Friday, November 21, 2014

Write down your priorities before making decisions

I've been hiding in the room upstairs and wondering if I should try to get out and see what Houston has to offer. Or stay in my comfy jammies and stare at the window some more. Both options seem like valid choices. Something weird about this shock thing is that all options and choices carry the same weight. Apparently this is common when in shock. I actually had to write down my priorities on paper the day after we found out because I had no idea how to prioritize things. It was difficult to say the least and I had to refer to Jeremy frequently. Here's my list. I still don't know if it's right or wrong but it's what we made choices by.

1. Glorify God (make his goodness show)
2. Bennet and Charla's health
3. Boys safety- us not worry
4. Boy's happiness
5. Jeremy's work
6. Nathan's cello class
7. School

Putting myself above my children was painful but to save Bennet's life I really had to. Still hard. The boys probably would have been fine at many of our choices, but they had to be where I wouldn't sit and worry about things that could go wrong or where things have gone wrong in the past. I felt better about them being near school with no long car rides and with another school mom that knew the teachers and had a friend kind enough to offer her home up for my school kids. They love the Lord and understand the situation so I felt very confident in leaving them in their family. I also knew that they respect our wishes. Very important in being able to relax.

My younger guys we left with my in-laws out of town. I didn't have many options for them. I wanted to take them most of all of course but I also knew that Jeremy would be tied to them while I was in surgery and recovered and he wanted to be with me but having no childcare so far from home it would have been almost impossible. My heart breaks everytime I think about my babies. I can feel it ripping. It's just so wrong I say in my head over and over. I feel like they are safe but as most in law situations go, they are not terribly concerned with our wishes for their care and will pretty much do whatever they want to. SHRUG. What are you going to do. I don't have the strength to fight someone willing to care for my babies for a month and a half. I just don't ask many questions and am not surprised when my questions go unanswered or avoided. Still trying to have peace with it. I have gotten to see them on Facetime once and it was good to see them playing. Until they were gone and then everything broke again.

My big boys have told me they are very happy and are trying to be helpful and good. My 3rd grader was written up by his teacher on THE DAY WE LEFT for talking in class. NICE. I am not a fan. I hope it was very loud and very disruptive rapping for him to be written up for the first time ever on such a traumatic day. Not going to send off an angry e-mail to the woman that is being more of a mother to my son than I am right now. I'll just send it in my head.

Nathan is doing his cello class that he's worked so hard for. Another teacher friend is taking him and bringing him back. The in laws did not see this is a priority and this was one motivating factor in the big boys staying with friends instead of all with them. It's important to him, therefore it's important to me. We won't always be able to afford cello lessons at this level for him and want to take advantage of lessons we've already paid for. Thinking about missing his Christmas performance. HEARTBREAK. Tears, hard to breathe. All of it.

Jeremy's work has been crazy. He had 6 days left in the semester and four classes. Through a small miracle of FMLA he has been allowed to record his lectures online and post them for students to download. He answers questions via a class Facebook group. Not working perfectly. Not ONE other professor was willing to cover his lectures or labs although he has covered their classes before. NICE. His boss is covering one class for him but no one will even unlock the lab for his students. SO mostly their class is online. Because of it being the baby and not him allowances have been made. I am truly grateful to not have to come here and be alone. My depression would know NO bounds if that were the case. Maybe I should have included my mental health on my priority list.

As for Glorifying God. I don't know if I am yet. I keep it in mind as I make choices though and have to hope if it is my intent that in the end He will be. I can't help but feel that my baby will do a far better job of this than Jeremy or I. Babies show the glory of God without an effort. I wonder if we will meet parents struggling through this battle without faith to lean on and wonder if we will be courageous enough to share our faith. I have NO idea how anyone would get through this without believing in God. No idea.

Thursday, November 20, 2014

One week away from home

We've been away from our home, our kids and our life for a week. We uprooted, doled out our children and left town November 12th to come to Houston to save our baby Bennet. Bennet was diagnosed with Transposition of the Great Arteries when I was 32 weeks pregnant. I was being checked by sonogram for a window in my uterus because of four prior C-sections and were referred to Dr. Robinson, a pediatric cardiologist in Lubbock, because my Dr. couldn't get good views of the heart because of position. I happened to mention offhand that my Dr. thought the left heart might not be fully formed and then I happened to mention he thought "something might be switched". He said that's what he was seeing. I was frozen, not knowing what to think. What did that mean, switched? He said it so casually, walked us out and said he would see us again , not to worry, that it was fixable and oh by the way, we would need to deliver our baby in Houston.

Houston??? That wasn't even sort of on my list of how things could possibly go wrong. My first thought was, "What will I do with my dog?". Probably not my most sane thought seeing as I have four kids that also might need tending to. Houston??? I hate Houston. Traffic, no one I know, long drive. What the hell? Houston? Surely there was someone here that could fix this little heart mix up. How bad could it be? We live in a medical mecca. I just needed a second opinion.

Came home and called my pediatrician. When I mentioned to the nurse what I was calling about oddly enough the Dr. came right to the phone. Weird. I've never gotten service that fast. I told him our diagnosis and asked if he knew someone here that could fix it. He said, "You know this is really serious, right?" Ummmm, sure, serious. Yes. NO, I had no clue how serious this was. It sounded like the title of a fancy novel. Transposition of the Great Arteries. A novel about sailing ships, and pirates and Narwhals. He said if it was his child that he would go to Houston, that no one in Lubbock would touch it. My head was spinning. There is no way I can do this.

How does one plan out what to do with four boys under the age of 10, still in school, for weeks? Do I take them? Do I do the unthinkable and leave them here? With who? Who could I ask to do MY job? Making the choice to have five children was a decision we made because we were taking care of them and doing a real bang up job if you ask us. They are adorable and sweet and GOOD boys. But they are boys and they eat a lot and have a lot going on. How does a mother leave her 1 year old baby??? I cry when I have to leave him overnight at Nanas! How do I leave for a month or more with him not understanding that I would come back.

Well we did it. We planned, our date we were required to be here was bumped up by two weeks because of my uterine window. I freaked out and we still did it. I heard God telling me that it would all come together and I wouldn't have to work that hard and he was right. People stepped forward and offered to do my job for a ridiculous amount of time and my cousin even packed for me because I would freeze and crawl under my covers every time I tried to start. Family sent a check in the mail that shocked me and made me cry. Our neighbors gave us money the same day because their church adopted us as their Christmas family. We had no where near enough of a budget to do this but God provided. It was awe inspiring and we felt so undeserving. Feel. We still feel undeserving.

So here I sit. In Houston. Hours and hours away from my kids that are doing great as best I can tell. I'm not a mother anymore. Just a woman that can't make a baby heart right. In a completely unfamiliar world. Every night I cry that I just want to go home. Mature, right? Yep.