First Days in Michigan

Last Sunday morning I got the call from Gary (the respiratory therapist) about the hospital in Michigan having a bed available for Emma. I was literally dancing in the hallway! We were going there for Emma's life-saving surgery so she could get the 3D splints to open up her airway. He said we would either leave that day or the following morning, so I was able to go home from work and Michael and I got everything packed for our trip!

Originally I was told that I could ride in the medical jet with Emma, but that day Dr. Lipman told me that a safety officer needed that spot, so Michael was able to get me on the flight he had booked. We left on Monday morning and got Gary's phone number so he could give us a few updates. Emma's flight left around 9am and by the time we landed for our connecting flight in North Carolina, they were already in Michigan. The nurse who was with them texted us saying Emma did great and sent a couple of pictures. She said they would let us know when they got to the hospital. When we landed in Detroit around 3pm I did not have any new texts, but Michael had a voicemail from one of the doctors at Mott Children's Hospital asking us to call her back.. I listened while Michael spoke to her and kept saying, "Okay.. okay.. okay.." I wasn't able to hear anything she was telling him as we navigated around the airport to get our luggage and meet the Uber driver.
He was told that everything went very well up until the point that they moved Emma from the cavatron to the bed in the PICU. She passed out, but didn't wake up after 30 seconds like she normally does. They felt her and she did not have a pulse, so they had to give her chest compressions for 9 minutes and a dose of adrenaline. After that they put a new trach in and saw that hers had been fully clogged with secretions. Once she had the new trach in, she was fine, turned pink again and began looking around like normal. The reason they did not originally think the trach was the issue is because Michael and I (and his mom who drove down) had visited Emma that morning in Orlando before our flights and put a clean trach in, so she was only wearing that one for about six hours and usually they are good for a week! But she does have a lot of secretions, especially when she gets moved, and a cross-country plane flight, two ambulance rides, and being pushed around two hospitals is a lot of moving. ;)
When we found our way to Emma's PICU room around 5pm she was asleep, but looked like she was doing well. The nurse (Sara) suggested that we get checked in to the Mott House and then come back. The Mott House is part of the Ronald McDonald House that is on the same floor as the PICU. It has 12 rooms, each with one twin bed and a bathroom with shower. There is a communal living room and kitchen (with several free snacks, soup, chips, etc) as well as two washers and dryers. We were very thankful to be able to stay there for the first five nights. The main house is across the street. 

By the time we came back from checking in to the Mott House and dropping off our bags to our room, Emma was awake and smiling at us. It was so wonderful to see after her arrest earlier in the day. That evening Michael and I stayed with Emma for a few hours, meeting a handful of nurses, doctors, respiratory therapists, and fellows (residents training for a specific field). We verbally gave them a list of things that Emma likes and doesn't like. The night shift came in at 7pm and a lot of info was passed along. I was pretty emotional the first two days and even began crying when the male nurse didn't want me to change Emma's diaper because of how her stats were. I kept mentioning that a lot of the time she cries because she needs her diaper changed, plus I was worried she would pass out again if she cried too much. The nurse saw my tears and let me change Emma's diaper, then was surprised to see that her stats instantly went up once she was clean.

The next morning at 5:45am (Tuesday) Michael got a call saying that Emma had needed chest compressions again for two minutes, but then she was fine, and did not need a new trach or any life saving medicine like the day before. They scheduled her bronchoscopy and CT scan for that day, put a PICC lins in her arm, and she was rolled down the hall at 3pm. But shortly before that she got a very special visitor: Santa Claus! However, she was on extra medicine for the procedures and was asleep when he came by. Michael was pretty worried while we waited, but he was called two hours later and we met Emma back at her room. She was still asleep for another hour, but squeezed my finger when I slipped it into her hand. A few minutes later she opened her eyes and smiled up at me. Michael rushed to her side and she looked over at him too. Doctor Green talked to us and said that they adjusted her vent settings during the procedure and found that when she was at a PEEP of 18, that is when her airways stayed open as they should. Previously her PEEP had been set at 14, even while in Orlando. PEEP stands for "positive end-expiratory pressure", which is how many millimeters the ventilator keeps the lungs open. Emma has done very well on the higher PEEP and has not passed out all week since Tuesday morning! That is a record now since she had passed out almost every day between October 24th and December 12th. Tuesday was also her six month "birthday". Emma's surgery for the 3D splints is currently scheduled for December 27th. 

Getting Answers

  This picture that the nurse sent us on Tuesday cracks me up! It looks like Emma is just whistling the day away while she waits to find out all of the Michigan details. ~ La dee da. That's how I've felt the past few days, but with checking my phone every few minutes to make sure I didn't miss a call.

   Yesterday we found out that Emma has officially been accepted to Michigan for her surgery. Yippee!! It's really happening!! They also said they would create a stint to hold her trachea open as well as for the bronchi. Today the social worker called me and said that my insurance company confirmed that they will cover the medical flight and hospital stay while in Michigan! She is also getting things arranged for where we will stay while we are up there. The reason we didn’t leave today is because their PICU (Emma will get upgraded to the pediatric suite, with the big kids) is full right now, so we’re praying for another baby to have a speedy recovery, so Emma can have that baby’s spot in Michigan. We aren’t sure if they will call us tomorrow and Emma and I will fly out on Sunday, (Michael has to fly separately) or if it will be more scheduled and we’ll leave in a few weeks? Either way they told us to be ready to leave with short notice and that we should plan to be there for about 8 weeks. I’m already packed! We’re definitely praying to go as soon as possible because Emma is still passing out every day. On Wednesday she passed out twice while I was there and three times that night. 

   When I was there in the afternoon, she passed out after half waking up from a nap and realizing she was lying in a dirty diaper. I changed her diaper, but five minutes later she had gas which caused her to cry a lot and pass out again. A nurse came in (the regular nurse was on break) and began giving Emma a lot of manual breaths with the ventilator which is the best for her, knowing not to disconnect her trach from the ventilator to “bag her” which is like CPR through the trach. The nurse called for more help and told someone to get Gary. “He always knows what to do with her vent settings.” It’s true and because of that, he is making sure he is on the flight with us to Michigan. Gary turns up her oxygen by ten percent (I already did it that time before the nurse came in) and her Tidal Volume by five percent and then eventually (after 10 to 30 long seconds) she starts making noise, turning pink again, and slowly opens her eyes. Her hands reach out in front of her and if I’m there I put my finger in her hand. She grasps it tight, and I like her knowing that I’m there even if I can’t do anything else to help her. But sometimes just being there for someone is the thing they need the most, right?

   We used to sit her up and gently rub her chest over her heart during the breath-holding spells since her heart rate drops low (around 50?) and we thought that would help, but one day at the end of September the doctor told us they had done another X-ray and saw that she had fractures on six of her ribs! They were unsure of the cause of it. They thought she had brittle bone disease, so they tested her for that, but luckily it came back negative. They added extra iron and magnesium into her formula to help the ribs heal on their own. I sometimes forget about that issue, but was reminded of it again on Wednesday when Gary was talking to another respiratory therapist who works in pediatrics. “A lot of the normal things that work on kids her age, don’t work on her. She is very particular. She can’t be bagged because every time her ventilator is disconnected, her lungs collapse. And you can’t give her chest compressions because the first time you push down, you’ll crack every rib in her body.” I heard Gary say that if someone doesn’t handle things correctly according to all of Emma’s necessary rules, she could get BPD (bronchopulmonary dysplasia), which is a form of chronic lung disease that affects newborns and infants. It results from damage to the lungs caused by mechanical ventilation and long-term use of oxygen. The nurse says right now Emma does not have that, but when we get back from Michigan, she will have to get weaned off of her medicines, mainly Adavan. 

   Emma has been doing well with keeping her legs down/straight for the past couple of months, with the help of physical therapy (when she will tolerate it), but when she’s extra tired or wants them up, this is how they look: You can see how her knees bend up or backwards depending on the angle you’re looking at. She was breech for at least half of the pregnancy, so I think her legs got formed that way from being in the upwards position for four months, but maybe it has something to do with whatever genetic syndrome she has too? We’re not sure. According to Google it’s called Congenital Genu Recurvatum which translates as "backward-bending knee". Here is a comparison of when she was a few days old to a few days ago (almost 6 months old). So they definitely look better since then. Originally a few days after she was born they told us that her hips were dislocated, but an X-ray the following day showed they were not, so that’s a plus! 

This is a safe (and comfortable) position for her because of the trach.

   There sure is a lot for us to keep praying about! But I make sure to throw in a handful of thank you prayers too, because our daughter could easily be in Heaven right now. I am very happy that she is not. I am happy that we get to hold her and kiss her and that she is so comfy in our arms most of the time that she falls back asleep. I’m glad that she has not really been puffy this week (just her eyelids) and that she has been sleeping so well, with a great resting heart rate of 134 and 20 breaths per minute. The two weeks before that while she was puffy, she would keep her eyes closed, but we could tell she wasn’t really sleeping. She was unsettled with a heart rate around 180 and 40-50 breaths per minute. She would get sweaty and cry unless someone held her pacifier in. Now since she sleeps so well during the day, the nurses at night send us updates around 3am and she’s usually awake. Party time!! She is being weighed three times per week right now and her weight on Tuesday was 9 pounds, 1 ounce. 

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.

Trach-or-Treat

    Thus begins the hospital holidays of 2017. On October 24th Emma began passing out again, and has done so almost every day since October 24th (from taking too many breaths in and not being able to exhale enough when something bothers her- usually tummy or gas issues- due to her trachaeomalacia and bronchomalacia) but she has been such a trooper when I take advantage of her good times and dress her up. Luckily although now the bad episodes have lasted more days, at least she isn’t passing out ten times per day like she did those three days in September. However, having her come home by Christmas seems to be an old dream, and now we’re hoping for January or February. 

   I did three photoshoots with Emma since last week. When my mom visited last Wednesday, she surprised me with a tiny Dorothy dress, matching onesie and ruby socks for Emma. Emma was kind of tired and crabby the day my mom was there so we didn't change her clothes. She was better the next day when I visited, so the nurse (Kim) took a bunch of cute pictures of us!! 

   On the 29th at work, I dressed as Hermione since I can’t just not dress up. Originally I talked about being a Slytherin since I always felt that those traits defined me the most, but after everything we have been through with Emma these past six months since I had to be in the hospital while pregnant, I feel like I’ve had to be a lot more brave, strong, and determined than I have before. That night I visited Emma, but she passed out right after I got there, then fell back asleep. I held her hand for 20 minutes, and on Monday she was better so I dressed her up for a few pictures. She currently weighs 7 pounds, 3oz and is 18 inches long. Growing slowly! :)

 ^^ that night she kept her hand in the holding position after I moved my finger, so I let Curious George (I just call him "monkey") hold her hand while she kept sleeping.

   Yesterday at home I dressed up as Dorothy then went to the hospital for more pictures. Nurse Kim had sent another picture and video of Emma (they use an app called EASE) smiling and having a good time in her swing right outside of her room. She was still in an okay mood when I got there and was wearing her “My First Halloween” onesie.

   Our neighborhood is a dud on Halloween night. There was not a single person walking around when I got home at 7pm. I guess next year we’ll have to try our luck in the bigger neighborhoods behind ours. I saw a Halloween shirt while looking up “costumes for trach babies” that said Trach-or-Treat, so that might have to be our family’s little inside joke over the years, even when Emma is older and doesn’t need her trach anymore. I was even talking to my co-workers about pushing her in a stroller next year, then I realized she might be able to walk by then! She’ll be a year and 4 months, so it depends on how quickly she heals after her knee surgery (surgeries?) in the summer. Our little Emmy is growing up so fast!