The Big Surgery

Yesterday Emma had the big surgery to get the 3D splints put in to hold her airway open. Michael and I got to her room in the PICU at 6am for more prayers and kisses while she was still sleeping. All of the surgeons and anesthesiologists started coming in around 7 and she was wheeled out of her room at 7:45. We were told that she should be back in her room around 2pm, so we hung out in the Family Lounge and watched movies for several hours. Every hour or so a nurse would either call us or update us face to face on how things were going. 

Last week one of the cardio thoracic surgeons explained how the surgery would go and we signed consent forms for the splints and the procedure. He told us that the cardio thoracic surgeons are the ones who would perform the operation because they were working so close to the heart. Dr. Green would be helping from the head of the OR table (we were told it's like how they show it on Grey's Anatomy) and would tell the surgeons what do to and where to place the splints. Having the surgery explained to us step by step helped Michael feel more relieved and at ease about everything, while it made me nervous. I began picturing a huge DeWalt power saw being pushed through our baby's chest with sparks and bone shards flying everywhere. Obviously that's not at all how it happened, and I was assured that the medical saw is very small, but my brain likes to blow things out of proportion and cause unnecessary worries. So I cried the morning of the surgery and a little bit the night before. The surgeon told us about how she might have to be put on bypass, where they use a machine to pump blood in and out so they are able to control her heart and lungs if she started to have problems during the surgery. That thought scared me too. One thing I thought was interesting is how many 3D splints they make for each patient. He used great analogies and explained that if Emma has a spot in the airway that has a collapse and needs a splint that measures 20mm long on the CT scan, they will make eight splints for that one spot between the length of 17mm and 23mm. That way if they measure during surgery and see that her spot actually needs a splint that is 18mm or 21mm long they already have it right there! 

Everyone at this hospital is super great about communication. Someone is coming in every few hours, usually from different departments and specialties, giving us an update or just seeing how we're doing and asking if we have any questions. The day before the surgery (Tuesday) we knew Dr. Green would come in to talk to us again, so we made a list of ten questions and he gladly answered all of them for us. The first thing he mentioned while shaking our hands is that the splints couldn't be sent back in time because of the weather (they get sterilized for a week in Utah).. but then quickly added that he found out that Fedex makes emergency medical shipments, so they had the splints! Oh, phew!! We confirmed again that Emma was the 16th patient to get the splints. Before her were 14 children and one adult. He had no concerns about any of Emma's pre-existing conditions getting in the way of doing the surgery. He said they would keep her on the same vent settings for a few days or so after the surgery to let her body get used to the splints before weaning her down. This means her PEEP (positive end-expiratory pressure) level on the ventilator will remain at 18. We were told by several people that the first few days post-op are the most "dicey", but usually once it's been two weeks after we will be "in the clear" and everything should be fine after that. I expected that she would be puffy again from the IV fluids. When we asked about her being put on bypass, Dr. Green felt very certain that they would need to do that. 

At 9:30am yesterday was when they began the procedure, starting with the another bronchoscopy. At 10:40 a nurse called to say they were starting the actual surgery (making the incision). At 12:50 we were told that the first splint was in, on her trachea and that they were about to start working on the ones for her main bronchi stems. By that point we knew it would be later than 2pm before we'd see her. But we were told that so far Emma had not been needed to be put on bypass! I was so happy about that. At 3:05 we were told that all of the splints had been placed. Then they would evaluate her to make sure she was still stable, close her up, then do another bronchoscopy before bringing her back up to the PICU room. Around 3:25 Dr. Green came in to talk to us and tell us how things went. He said she had not been put on bypass at all, although they kept the machine on stand by just in case. Oh my gosh, she is so strong!! He did say that her bronchi tissue was very thin -the thinnest they had ever seen- but they were still able to successfully put the splints in. However, several of the stitches needed to attach the splints to the bronchi were creating tears in the tissue and they had to use dissolvable surgical adhesive to cover the tears. He said after a week he would not be worried about new tears. Emma also had an infection from the puss in her lungs and they sent a culture "stat" to check that and immediately started her on broad antibiotics. 

We also talked to Dr. Ohye who works closely on the 3D splints as well. He said that although Emma has further bronchomalacia that collapses in the smaller branches in the lungs, they should be able to get more oxygen with the ventilator. He explained that before the surgery the vent was working hard just to keep the main stems open, but since they are now being held open with the splints, more oxygen can flow through to the lower areas. Hooray!! We were told that Emma's bronchi splints were all made bigger than her airway actually was, so they used smaller sterile packaged pieces that they had left over from another patient's surgery. A big thank you goes to that little kid! Now maybe the next baby can use the ones they didn't use for Emma's.

At 6pm the Nurse Practitioner told us that Emma was in the room, but they needed to place another PICC line that had two tubes since she was getting so much medicine. She said once that was done we could go back and see her. She also told us that they would keep Emma sedated and paralyzed (with neuromuscular blockers) for 24-48 hours. I thought that was a good idea due to how much she moves around and arches her back when she gets uncomfortable in bed. 45 minutes later one of the Fellows came to get us. He said they weren't able to place the new PICC line, but the one that had been in her arm for two weeks was still good for now. We walked back with him and finally got to see our daughter after 11 hours of waiting! She was puffy, but not as bad as we have seen in the past. The dressing bandage on her chest made the incision look smaller than I expected, and the chest tube was not that noticeable, but I'm used to seeing her with stuff taped all over her body. She also has another sensor connected to her arterial line in her groin that keeps track of her blood pressure, as well as pacer wires attached to her heart for a week in case of another cardiac arrest. Even with all the medicine in her system we could still see her right foot twitching once in a while. 

Today was pretty boring, but extremely wonderful. Boring is very good in a hospital. Emma still looked puffy, and got even puffier as the day went on due to her body holding in the IV fluids. The biggest problem we have faced so far is that she is barely getting out any urine. She got lasix once so far to make her pee, but that has not really worked yet. The nurses did a bladder scan -one in the morning and one in the evening- but they showed to not be full. She said she is waiting for the night doctors to do their rounds and give her the new instructions. Emma did not have any big alarms go off and when Dr. Green came in to check on her this afternoon he admitted that most of the kids code on the first day post-op. The night nurse started her formula feeds again through the NJ tube in her nose. She started with 3ml and is scheduled to go up by 3ml every four hours until she reaches 21ml, which is the amount she has been on (per hour with continuous feeds) this whole month. Emma is also getting eye ointment every two hours to keep her cornea lubricated since her eyes have stayed closed for two days now. She has metal stickers on her left forearm that they attached tiny jumper cables to in order to lightly shock her muscles every few hours so they can tell if they need to raise or lower the amount of paralytic medicine. The hardest part emotionally is that we are trying not to touch her much or kiss her at all because we don't want to stimulate her. She really needs to rest and heal these next few days, so we only get up from our chairs near her bed to whisper a few motivational words; telling her how proud we are of her, how beautiful and strong she is, and that we love her. At one point this afternoon I did place my hand on her head while talking to her and I noticed her right arm and lip moving a small amount, so I let go. 

** Today Emma is 200 days old ! **

Therapy

Emma has been getting therapy since shortly after birth. It was her 10th day of life that the OT (occupational therapist) in Orlando created little removable casts for her legs that bend backward. The casts were made out of heat-formed PVC plastic, lined with Tempo fabric, and had a slight bend where the knee would be. They were placed on the top of her legs, like shin guards for the whole leg, with a few soft pieces of fabric that would velcro around the cast and hold it in place. She took pictures of Emma's legs while placing the casts and made a sign so when they were taken off for nightly baths, the nurses would know how to correctly put them back on. However, when Emma had a nurse that was less familiar with her, we would sometimes come in to visit and find them rotated or down lower so the knee part was not in the correct spot. In the middle of August (when Emma was 2 months old) the OT made bigger splints, and this time made it like a shell that opened on one side, so when velcro'ed the casts covered the front and back of her legs. These were a bigger size as she was growing a little bit, but she only wore them for a week or two because the nurses said she seemed aggravated by them and would "desat" while wearing them, meaning she got cranky or cried and her stats would go down. Other times her stats go down even when she's fine just because her leg is kicking so much and the probe on her foot has "poor signal". We would often forget that even though the casts felt so light, for a five pound baby those little casts were the equivalent to having 20 pound weights strapped to your legs! Having her stats up and breathing well has always been the top priority, so the casts have not been used since August.
Since OT was no longer able to work with her legs in that way, the therapist would sit Emma up and let her work on using neck muscles to look around more and hold her own head up. They also worked with using her hands to comfort herself- bringing her hands to the midline, where they are folded over her chest, and playing with her hands in her mouth or sucking her thumb. I also think this was around the time that she began using mirrors and instantly loved them! She loves looking at "the baby" and often smiles or laughs at herself. 
Physical therapy worked with her a lot too in Orlando, as well as with me and Michael when we were there at the same time. That therapist would very gently move Emma's hips and legs to practice them bending properly in different directions. She showed us how to help calm Emma down by placing our hands on her and taking deep slow breaths. The first time I showed this technique to Michael it worked magically and he was very impressed! ;) 
We were surprised when Emma was also assigned a speech therapist in August since she obviously wouldn't be talking any time soon, but we learned that speech also helps with oral stimulation and swallowing so she could later learn to bottle feed. They were not able to do much with speech because that was around the time they said she needed the G-tube for feedings and had the feeding tube taken out of her nose. She got the G-tube placed at the beginning of September. They did a test the day before where they put dye in her mouth to see where it goes. Unfortunately hers went down her trachea and into her lungs rather than down her esophagus. A couple other times she would accidentally get condensation from the ventilator that went down her trach and she would instantly turn red and began coughing. One time she quickly passed out because of it. 
As for the therapies in Ann Arbor, Michigan, it is interesting to see the different things they work on. Granted they couldn't do much in November for Emma in Orlando because she was still passing out every day and sleeping a lot of the time. But with the higher vent settings in Michigan, she has not passed out in 11 days -hooray!!!- so the therapists have been able to do more with her.
Physical Therapy would lay her flat in the bed and work on her rolling from side to side. She can't roll over all the way yet because of her trach and stomach prolapse where the G-tube site is. They first had her turn her head by getting her attention with her circular mirror and moving it to the other side, then giving her a small nudge. She kicks her legs so much and if she kicked in the direction that they wanted her to roll, the momentum of that leg would roll the rest of her little body. The Buddha belly helps too! They also sat her up straight and held her head up or would scoop Emma with the therapist's forearms against her back and then she would lean back so Emma was upright more. She fell asleep during that part on Thursday. One day (they have come twice a week) they brought a baby table that they were able to lean her over on to stretch out and work different parts of her body since Emma is almost always on her back or left side. A couple times per week she gets tummy time, which is completely safe due to her breathing through the trach. 
Occupational therapy came in on Monday and Friday this week. Yesterday she worked more with sitting up and rolling Emma on her right side. That side is a little weaker due to the right upper side of her lungs not working well. She did some massage type moves to help relax Emma's shoulders since she tends to hold them high. The therapist also laid her on her left side with a roll under her armpit so she could learn that she needs to support herself with her arms. Then she laid on her stomach with a roll under her chest and held her head up while working on tracking with bells. Emma has tolerated the therapies very well when she's not falling asleep. Or pretending to fall asleep. Sometimes she seriously opens her eyes once the therapist walks out the door.
The speech therapist gave us a nifty tool like a toothbrush to help get Emma used to having objects in her mouth such as a spoon in the future. One side has raised lines and the other side has bumps. We just have to practice with it in her checks, on her tongue, and against the roof of her mouth. Michael and I have done it twice for a few minutes without the therapist and Emma did great! She even laughed a little bit. Tonight I practiced her sucking on a pacifier that was dipped in formula and she held her cheeks together and chin up as instructed which helps her mouth get the swallowing reflex. I wondered recently if Emma's swallowing reflexes have improved at all, so the speech therapist in Michigan says we can do more trials for it next month when she's healed from her surgery. 
Everyone will try to come back on Tuesday (the 26th) for one more round of therapy since Emma is having her big surgery on the 27th and won't be able to do anything for a few weeks -or more?- after that. She's a fighter though so I bet she'll be back to smiling and kicking her legs around by that weekend! The Mott Children's Hospital also has Cupcake Therapy every Friday! But really it's just an excuse for everyone to decorate and eat cupcakes. We've done that twice so far. ;)

Consult Day

When they did Emma's bronchoscopy and CT scan last Tuesday, they saw that she has malacia (floppy airway) in the lower bronchi that they cannot reach to fix and that she will still need to be on a ventilator when she finally comes home. While we are here Dr. Green will put 3D splints in to keep Emma's trachea and main bronchi stems open. They also saw that she has what could be pneumonia in her secretions in that area since they are stuck there and not able to be moved due to the collapsing airway. Some secretions are normally able to be moved with cupping or by patting the baby or child firmly on the back, but due to Emma's weak and fractured ribs, they can't do that. On Tuesday evening they started her on antibiotics and sent a culture testing the secretions. It came back negative for pneumonia and showed that it was just a staph infection. She has stayed on antibiotics (Augmentin) for one week for that.

Wednesday (December 13th) was our third day at Mott Children's Hospital in Ann Arbor, Michigan. We had all sorts of doctors, nurse practitioners, attendings, and therapists coming in to meet us and examine our baby girl. Emma had an echocardiogram done at 11am and they confirmed that she was not showing a VSD (ventricular septal defect) in her heart. Hooray for good news! They did see that she has two veins that dump blood into the heart, while people normally only have one, but the cardiologist told us that her having two is perfectly fine.  We were told about how Emma might need a VEPTR (vertical expandable prosthetic titanium rib) because her rib cage is very small and they are not sure how much it will grow over the years. They have to make sure her ribs grow so her lungs can develop properly. It was just something mentioned for us to think about in the future, but makes us sad to think about her needing another surgery! 

I was pleasantly surprised to see so many different doctors coming in because I thought we were just here for her airway. Occupational therapy and physical therapy came in too, as well as music therapy later in the week. They also had the Child Life guy (Joel) come in and he gave us a developmental toy and four books that we could read to Emma. He gave us a Hope Beads sheet that has check off boxes for us to keep track of each time Emma meets one of the challenges such as getting a shot, IV, a blood draw, having surgery, etc. Each "activity" earns a colorful bead. She already has 8 check marks for different things, so before we go home, they will give us a necklace to represent everything Emma went though here! I love that idea. Joel also has a therapy dog, Denver, and he came in on Friday, but Emma was asleep. He said they will come back another day so she can pet him! 

This day Emma had 3 X-rays done. One was skeletal for the orthopedic doctor to look at her hips, spine, and arm bones. I don't think we have heard back from that woman yet.. Two of the X-rays were to check if her NJ tube was placed correctly. An NJ tube is similar to an NG tube, but instead of it being placed in the stomach, it goes straight into the intestines. I will explain that next, but the reason she needed that tube was because the G-tube in her stomach still had a lot of prolapsed gastric mucosa. That means the G-tube hole was stretching and when Emma had gas, air would push out from her stomach, pushing part of her stomach out of the opening! She had this sutured in Orlando on December 1st because it had happened before, but it stretched out again, poor baby. The gastroenterologist here in Michigan took the G-tube out and attached a Hollister bag over the opening that could vent the stomach and drain any fluid out. Emma's stomach has always been distended, but it is even a little bit more now with the higher ventilator settings (which she needs). Since they took her G-tube out, they had to put the NJ tube in for her to get her feeds. She has been on EleCare hypoallergenic formula since November 21st and on continuous feeds since November 29th. That is helping a lot and her pain while having gas and stooling has seemed to decrease. We told the nurses that Emma likes holding on to her feeding tubes and has a history of pulling them out, so they had to bridal (tie and clamp) the NJ tube around her nasal bone. We were told today that it can take up to three months for a G-tube site to heal before they connect it again, so I don't think they will fix it while we are here. 

In the evening the eye doctor came in to check Emma's eyes because since her cardiac arrest on the day we got here, her eyes have been shaking back and forth quickly (maybe 40% of the time). They called it a horizontal pendular nystagmus (eye jiggle). When the nurse would shine a light in her eyes that usually helped Emma focus and they would stop shaking, but we had to tell everyone that it was not normal for her. The optometrist warned us, "I have to shine a really bright light to look in the back of her eye. Most babies hate this, so she will probably start crying." Emma began snoring! Her night time medicines had kicked in and since she was sleeping so well, her eyes were not responding normally, so he had to come back the next day when she was on less medicine. The test came back fine and they did not detect any other problems. A few of the doctors wanted to get an MRI done to check Emma's brain activity, but other than the eye concern she seems really great and even happier and more awake than before, (probably because of the higher ventilator settings). Since they saw that we were not too concerned, they have pushed the MRI idea aside for now. They may still want one before we go back to Orlando in February. 

Last night Dr. Green came to talk to us and answer any questions we had, even though it was his day off and his daughter had graduated during the day. He mentioned that Emma's right upper lobe of her lung does not move air. We had heard the respiratory therapists in Orlando mention that several times. Dr. Green said it might be something that eventually needs to be removed, but Michael and I will have to get more information about that. He said they might even remove it (if they need to) while she is in the OR for her 3D splint surgery. He is not sure if her airway will heal itself over the next three years while the splints are in, or if she will need another (more permanent) airway surgery after the splints slowly dissolve. He told us that she has scoliosis, but it does not seem like too much of an issue right now. He did bring up the rib extenders again, and then he answered some questions about what to expect after the airway surgery. Dr. Green said she will have one or two chest tubes to help drain fluid and that the first four days after surgery are the hardest/most "dicey". Emma will remain sedated for a few days to help with the healing. He said she will probably keep the same vent settings during that time, then slowly start weening down. After two weeks post-op we should be "in the clear". We are saying lots of prayers and staying pretty positive. Emma has been smiling and laughing at some point every day while we have been here, either at herself in the mirror, or at us and the nurses. That is definitely making things easier on everyone and helping us enjoy this cold winter! 

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.

Our Great Marriage

A quick story first:

I walked into the dark room and Emma was sleeping so peacefully. Quietly, without any signs of labored breathing. She looked like an angel although I don’t like using that term because “angel” makes me think about her being in Heaven and I don’t want that. This is our 5 month old baby and I want her here with us. As I whispered to her she opened her hand just enough for me to slip my finger into her palm. She gently held on to it and I continued talking to her, telling her that I loved her and how beautiful she was. After a good day, I just had to hold her. I scrolled through the pictures on my phone to see the last time I held her. Last Tuesday- six days ago. I started to slip my finger out of Emma’s hand, but she held on tighter with her eyes still shut.
“I promise I’ll be right back,” I told her. “I just want to ask Billie if I can hold you. I’d really like to hold you. I’ll be right back.”
I walked out of her room and over to where the nurse was sitting at the desk in the middle of the pod. “Hey... so... I feel bad asking this, but-“
“You want to hold her?”
“Yes! Is that okay? She is sleeping so well, but it has felt like so long since I’ve held her and since she had a good day.. I’d just feel so bad if she got crabby because I move her.”
Billie laughed, “I know its been a while. I think she’d like that though. Whats the worst that could happen?”
I’m not sure if that was a rhetorical question, but I answered it anyway. “She passes out.” Luckily she didn’t and she seemed pretty comfortable during the hour and 15 minutes that I was able to hold her before having to go home again.

***********
I started reading a “marriage after children” book but it actually started making me sad. I really feel like I don’t need to read it. I am not hesitant to say that yes, before Emma was born, I worried about how things would be after Emma was born. Would Michael and I fight about whose turn it was to change her diaper or feed her in the middle of the night? Would we fight if I wanted to take Emma to Gainesville to visit my parents when he’s at work, but he wanted us to stay in Orlando?

We have talked about those things, and yes for diapers sometimes (in the hospital) we’re like “I changed the last three. Its your turn.” But neither of us get mad about it bc we want it changed so Emma stops crying (or doesn’t start crying) and is content or happy again. We have talked about taking all of our trips together- partly to do everything as a family, but mostly for her safety. I keep imagining that Michael will drive and I’ll sit in the back with her to talk to her and play with her or turn up her oxygen or suction her trach from the car seat.

July was probably the hardest for us. That was when I went back to work, so Michael saw Emma at 5:30, and I saw her at 7:30, but then we barely saw each other. Visiting her at different times made me feel like a single mom in some moments and I never want to be a single mom. We were both so tired (from work, driving back and forth, me pumping milk, and I was still crying often- wanting her healthy at home) which caused us to make harsh snippy remarks. It made me sad thinking “is this how its going to be now? For how long?” But by August, after Emma got her trach put in, we were in more of a groove and we’d visit her at the same time so we could do hands on together. That really filled up my heart and I started referring to it as “Family Time” instead. We were doing it at least 3x a week (almost every other day— giving Emma a bath and changing her trach ties, taking her temperature, putting a new outfit on her).

In October we didnt seem to do Hands On much. We were pros by then (and now we’ve changed out her trach twice together and once each by ourselves), so we let the nurses do it- after all they are getting paid thousands of dollars to take care of her.. But this month we’re more determined to prove to everyone, “Hey, we’ve got this. We’ve learned the stuff. We know what we’re doing. Her issues aren’t going to go away anytime soon, so let us bring our 5 month old baby home where she’ll obviously be happier.” If I were to give each month an emotion, November would be Frustrated.

But our marriage has been really good again since August. We’ve been making more time for fun outings, dates, and each other. Maybe that’s another reason why God is keeping her in the hospital- because it helps us stay close in our marriage? And I love that. I love seeing Michael have cute conversations with her. He tells her how beautiful she is, how much we love her, that we are so lucky to have her, and that she has nothing to be upset about (to help calm her down).

As for the hard parts we are still dealing with.. When everyone at work asks how Emma is doing and I say she’s good so they assume that means she can come home very soon or is already home. No.. I’m sorry my attempt at positivity was so confusing.. And I hate having to ask permission to hold my own baby. After five months, I’m starting to get pretty frustrated about that. I might just start doing it- picking her up. At least when I stand right next to the crib so I don’t have to worry about moving the wires and tubes for her oxygen probe, heart rate leads, farrell bag (for her G-tube/ MIC-KEY button), milk feed, and trach suction.

Back to that “Married with Children” book I mentioned at the beginning, I often wonder how self help and marriage books remain so popular. Everything is about patience and communication. Why is it so much easier to ask everyone else how to make their spouse happy (or whatever) rather than.. *gasp*.. asking their spouse!! I even did it the other day. And after the fourth text to a different person, I was like, “Oh my gosh- come on! Just ask Michael! He will always have the best answer.”

But don’t only ask your spouse one time. Ask the same question every few months. People change. Our wants and needs change. So something that he liked when I met him might not be as important as it was last year or in five years. What am I even talking about right now..? Our marriage is really great and I don’t need a book written by someone else’s husband to tell me what my husband (or I) need.

This past weekend was hard due to Emma being really puffy for an unknown reason and her breathing seeming harder for her. Luckily those problems seemed to go away when I saw her on Monday night. But the marriage part of the weekend was so nice. We went to Universal just for a few hours on Saturday so I could get a butterbeer and for the first night of the Hogwarts castle lighting. I dressed up as I usually do. Michael told me at least four times that I looked beautiful, even with my Hermione hair which I might start styling like that more often. On Sunday after I helped Michael with some yard work, we ran errands including picking out two Christmas dresses for Emma, then going to get tacos. Later we went to Kohls to get our own new Christmas outfits. (They are doing professional family photos at the hospital soon.) I let him pick my dress out and then he picked out some ankle boots with a chunky heel on them. He knelt next to me and helped me put the shoes on without me asking. He said it was because he knows I never wear heels, but I’m pretty sure he did the same thing a few months ago when I was trying on flats. He’s good at that kind of stuff. And when I tried on the whole outfit (including a matching necklace and earrings) he gushed about how amazing I looked. “Shnooks, please tell me that you think you look beautiful.” I did think I looked really good even without makeup which I dont often wear anymore.

NICU Life in Photos

   There is a photo challenge going around on social media about posting seven black and white photos of your every day life, but it can’t be pictures of yourself or people you know. It’s supposed to be a week long challenge, but since it’s impossible for me to go that long without posting a picture of Emma (plus then I would be denying everyone else on Facebook pictures of Emma, and nobody wants that), I took all of my pictures in the same day. And then added a few more from other days that are NICU related, such as views out my window while driving to the hospital.

 The other night I wondered what advise my best friend Mia would give herself to stay positive if she was in our situation. She gave the uplifting words I was looking for, but then this song came on and it was great listening to the lyrics too.

"Be strong in the Lord and Never give up hope,
You're going to do great things, I already know,
God's got His hand on you so, Don't live life in fear,
Forgive and forget, But don't forget why you're here,
Take your time and pray, These are the words I would say.."

   Another mom and dad had their baby outside and I saw that she had a G-tube too, so I asked if I could get a picture of everything together to see how it might be for us. I'm not sure if she would have all of that with her, but maybe. I can't really imagine pushing that around Disney Springs with us (and all the ventilator stuff) but we want to be able to take Emma around places. That baby did not have a trach.

   Emma joined in on the photo challenge too. Here are three pictures of what she sees and gets to “enjoy” every day. 

  How boring- ha!! But they have been giving her “pod time” where she gets to sit in the carpeted area where the nurses and doctors sit at the computers to document how the babies are doing. She seems to like that a lot since she gets to be closer to everyone and gets more attention, especially when she was dressed up as Baby Dorothy! The fourth picture was a photo challenge done by her guardian angel. Anytime Emma is looking up at the ceiling, I always ask her if she sees the angels. :)

And now here are more black and white artsy pictures that do include sweet baby and family faces!!

 Twins!! Emmy and Emma. Can you tell who is who? ;)

 ♡