Winning at Life

  I have been beaming for the past two days and am filled with nerves and excitement! Yesterday morning (which somehow already feels like a week ago) while Michael and I were in Emma's room at the NICU, Dr. Lipman came in and told us, "I have good news." I love good news!!
   Let me back up a little bit.. When I was six years old -just kidding..

   At the beginning of last week I was pretty bummed. Even with Emma having the most severe case of bronchomalacia they had ever seen, it seemed like there wasn't much they could do for Emma to help prevent her passing-out episodes (yeah, that's still been happening almost every day since October 24th, plus those three really bad days in September). It seemed like all we could do was wait for her to grow out of it, but how long would that take before she stopped passing out so we could take her home? Another six months? Or until she is two years old!? They didn't know. We were told that another baby was in this NICU for 10 months before going home, but that baby didn't have it as bad as Emma does. On Thanksgiving while I was in Gainesville with my brother and parents, Michael called me (he stayed in Orlando with Emma) and said that Gary -one of her respiratory therapists- and Dr. Hardy mentioned that a couple of hospitals up North had done some new experimental surgeries in the past four years for babies with issues like Emma's. He said they could do something to open up her bronchi and keep them open since the problem with them collapsing often is what makes her pass out. I was sooo excited! Yes! Anything to fix the issue and make her healthier! My heart was pumping fast. When Michael asked my thoughts, I honestly told him, "I just kept thinking, 'Wow, this will make a really cool chapter in my book!'" It was crazy to think about flying to Cincinnati or Boston for a surgery, but they don't have the technology for 3D printing in Orlando yet. It was only done in a few hospitals across the US, but that day for us it was still just a possible idea.

   On Tuesday of this week we had a informal meeting with Dr. Lipman, Dr. Weatherly (the pulmonologist), Gary, and a few nurses and such at Emma's bedside. We were told that the surgery they could do here would be to implant a tube into her bronchi, but that they would also later have to do another surgery to take it out. However, it was not recommended due to there being a high risk of infection that could become fatal. Um.. no, I'd rather wait it out. But option two was to fly with her to the University of Michigan where they could print 3D tiny casts designed specifically to fit around her bronchi, which would hold them open from the outside (still inside her body/lung area) but was made from a material that would dissolve on its own within two to three years. We told them that if they thought doing this surgery could really help Emma, then we definitely wanted to take her there. So they started making phone calls and sending emails.

   Yesterday was when Dr. Lipman said he had good news. Michael and I had both been able to leave work early in order to get our Christmas pictures done with Emma in the NICU. We all dressed up fancy for the occasion and received several compliments. The good great news was that the doctor in Michigan (Dr. Green) said that Emma was a great candidate for their surgery. There had been 12 surgeries done and all were successful and after some extra monitoring and weaning down ventilator settings, the babies were able to go home. Dr. Lipman did tell us that one of the babies died and I immediately asked how. He said it was due to heart failure, meaning it was not related to the surgery. We were told in May that Emma had a VSD (ventricular septal defect) and she would probably need surgery a year or two after birth, but in June after she was born they kept checking it and said everything seemed to be healing on it's own. They have checked it a couple more times since then and said everything looks good!

   Dr. Green said he just needed Dr. Lipman to order a CT scan of Emma to get more info about how severe her bronchomalacia is. He gave us a 10-page article from 2015 about the process, surgery, and the outcomes of their first three patients. Michael read it all last night and I've been reading it today. Two of the patients were able to wean off their ventilators within 1-4 months, so I guess they still had their trachs, but breathed regular air through it. I'd have to ask more about that and if they think that would be possible for Emma. I just want her to stop passing out so we can bring her home. Anything more than that would be a spectacular bonus. Today was her day #173 in the NICU, and some a lot of those days have been really, really hard, but it sure is a whole lot better than day #172 in Heaven!! :)

   Enough of this science talk, let's get to these Christmas pictures. Apparently Emma did not sleep much the night before and had been awake since second hands on at 2:30am. I had been saying prayers that she would be awake by 9am since she hates being woken up and will sometimes cry so much that she passes out and I did not want that to happen. I also prayed that she would have a nurse that day who knows her really well. Both prayers were answered! Emma stayed awake until the nurse and RT put her in my arms, then she promptly fell asleep. They still took pictures of us (more professional ones, not just the ones from my phone), but gave up after about five minutes since they had to take pictures of all the other babies too. We put Emma back in her crib and after a ten minute power nap she seemed pretty awake again. Somehow Michael got her to smile and laugh again. I almost started crying because I hadn't seen her laugh in over five weeks! About six other people rushed into the room when they heard us talking to her. Everyone aww'd at her, mentioning how they hadn't been able to work with her much (therapy wise) because she had either been crabby or sleeping all month. It made me so happy seeing her so happy and I am very thankful that I got it on video- and that the video didn't get saved upside down (I don't know how that happens). The photographer came back and got some pictures of Emma smiling in her crib, then we got into position again and he got some more pictures of the three of us with her eyes open. She wasn't smiling in those, but at least she was awake. Michael is eager to frame it since they printed out 8x10 copies for us of the best shots. We'll get a CD with all of the pictures on it later.

   My supervisor is so kind and understanding, and when I told her that they ordered the CT scan, she let me have the rest of the day off! Originally I was only going to be gone for two or three hours, and then go back to work around 11am. Emma's G-tube hole had also been stretching out, which caused part of her insides to push out of the hole. It looked really gross and a surgeon was notified, but they couldn't come in until today to fix it so Kim (the nurse who was there yesterday and today- one of our favorites) was able to fold gauze over it to keep it contained, plus with her dose of Adavan every 6 hours which helped her sleep, it didn't leak milk except in the morning. Oh and side note, speaking of milk, I am officially done pumping as of Thanksgiving night! Hooray, freedom!! I definitely said that I would keep pumping as long as Emma was in the hospital, but I changed what I ate several times during those five months, and everything continued to bother her/ give her a bad diaper rash/ make her cry a lot when she pooped or had gas, plus they switched her to formula full time a few days before I started weaning. I was really surprised how quickly I was able to wean off and definitely thought it would take at least a month.
   Also, since I'm already side tracked -- I didn't blog in the middle or end of November, so here is Emma's 5 month old picture with her bunny from November 12th. At that time she weighed 7 pounds, 11 ounces and measured 18 & 1/2 inches. On November 26th (in the picture at the top in the scale) she was 8 pounds, 10 ounces. Wooo!! Oh and this super good family one from Tuesday before I dyed my hair.

   So back to yesterday, the CT scan was scheduled for 4pm and at 3:30 Emma got a second dose of Adavan to keep her calm during her "field trip" across the street (via 3rd floor bridge/hallway). Due to the G-tube area leaking a lot in the morning, Kim put two overnight diapers around Emma. She was sleeping really well until 4pm when she was put into the cavatron, or as I like to call it, the NICU taxi. She was fine as long as Carla -the RT supervisor- held her monkey pacifier in her mouth. I got to watch as they moved her onto the table thing that slowly moves into the circular machine for the pictures, but had to leave before the scan actually started. They tucked her hands into the diapers around her chest and secured the thick vest around her. I only had to wait about five minutes and they kept mentioning how great she did. Carla said she talked to Emma though the whole scan and held her pacifier in so she stayed calm and content. Carla mentioned that she was at Emma's delivery (I'll have to ask what her role was, in a way that I would remember- I'm wondering if she was the one who handed Emma to me, and told me to give her a kiss before having to take her to the NICU) and I think she'll fly in the medical jet with us if we truly are able to go to Michigan. We have to make sure that my insurance will cover the cost of the flight and ambulance rides to and from the hospitals. That is my current number one prayer. *please please please* If it's not, we probably can't go because it would cost at least $50,000 and I may be way underestimating that?! Dr. Lipman says if the insurance company resists at all, they will fight for it. Michael is praying like crazy for her surgery to go well. *please please please* I'm hoping we will know if we can go for sure by Monday. And we could leave as early as next Friday!

  Today before Noon Emma got the minor surgery done at the bedside to close the G-tube hole where the stomach part was protruding out. The doctor put in three stitches and Kim sent us a picture afterwards with an update saying she handled it like a champ! I have told Emma so many times since yesterday how proud we are of her and how strong and brave and beautiful she is. I keep thinking about this beautiful story that one of my favorite bloggers posted about their daughter.
   I brought a notebook to write notes and questions down in, then remembered that I had been wanting to try to get Emma to draw a picture. I put the pen in her hand and held up my notebook. She made a few small marks. When the other nurse (Krista) walked by to check on us, she loved the idea and brought in colorful markers and a blank piece of printer paper. Art therapy! :) The only thing I did was move the page a little bit to the side with two of the five colors so she didn't keep scribbling in the same spot and get a hole in the page. She did the up and down/ half-rainbow motions all by herself! We're definitely going to frame that too.

   In this last picture she is mesmerized by her mobile. Kim and I laugh because every time they turn it on, Emma gets really gassy. I joked saying that the music it plays relaxes her, and the gas doesn't bother her, which is great. Today she was only on an IV to give the stomach 24 hours to heal without continuing to pump formula into it. Tonight she was also really in to licking and sucking on her fingers like she did at the beginning of November. I like when she does that because it's good to know that she can use techniques like that to keep herself happy rather than relying on someone else to hold the pacifier in her mouth until she falls asleep. But three times today (I was there for 5 & 1/2 hours) if the pacifier came out of her mouth, she was able to push it back in with her hands!
   I'm not sure if I'll be able to post again until we get back from Michigan and we aren't sure if we'll be there for two weeks or three months! Hopefully not longer than that though. Please keep us in your daily thoughts and prayers.