She's Coming Home Soon!!

   We are currently FIVE DAYS away from finally bringing Emma home!! I have been waiting so long (over 10 months) to be able to tell everyone that. We had a really good meeting last Monday, April 16^th, with 17 of Emma’s doctors, nurses and everyone involved in her care including the pharmacist who is in charge of weaning the rest of her meds, and the dietician who is in charge of her formula and nutrient needs, as well as a call on speaker phone with the doctor who will be her pediatrician. When Doctor Lipman said in his British accent, “We will plan to get Emma home in two weeks,” my eyes teared up. I have kept saying that Emma’s Homecoming will be the very best day of our life --so far. We even have a graduation ceremony planned for her. We got her a pretty black dress (in place of an oversized gown) and Michael already made the cap and today I made the tiny diploma.

   A lot has happened recently. On Easter (April 1^st) we were able to take Emma outside for the first time ever. She had only been outside when transitioning from ambulance to medical jet, to and from Michigan, but she was in the cavatron pod, unable to feel the breeze on her face. She liked being outside and began smiling the second we walked through the doors. My cousin bought baby sunglasses for Emma last year and she finally got to wear them! She didn’t like the sun so much when it came out from behind the clouds and she got really sweaty, but did very well in the shade.

   On April 2^nd Dr. Lipman made the call to get Emma’s discharge started and told Home Health to get set up by the end of the month!! During the meeting Dr. Lipman thought all of her ventilator equipment and all the supplies she will need (there are a LOT) would get delivered on April 30^th, so he said she could come home on May 1^st. But the next day, the company called and said they could deliver everything and explain how to use all of the equipment tomorrow! So the Nurse Practitioner told us that Emma is back on the Homecoming schedule for April 30^th!!

   On April 10^th Emma got a CT scan done to check the size of the three fistulas in her trachea wall. They had several people look at them and everyone confirmed that the fistulas in her windpipe are healed!! They called to tell Dr. Green in Michigan the wonderful news, but he still requests that one more bronchoscopy be done before she comes home to make sure that the fistulas are really, really healed. He said we can bring Emma home either way, but that lets him know if she needs to stay on a certain antibiotic (Augmentin) longer. However, the ENT doctor (Ear Nose and Throat) would prefer the bronch be done out-patient. So I’m not sure if it will be done next week or at the end of May? She does have an MRI scheduled for tonight or tomorrow night, which is mainly to check for any brain damage due to the 9-minute cardiac arrest she had on December 11^th due to her trach being clogged. But to us she seems perfectly fine, aside from understandable developmental delays. Last night she was the most “hyper” I have seen. She was laughing a lot and kicking her legs so fast. We are all very excited for her to come home!!

When the Mommy is in denial about the Baby growing up and not fitting into Newborn clothes anymore!
At 10 months old, 3-6 month clothes fit her the best. ;)

   Wednesday, April 11^th Michael spent the whole day at the hospital, from 7am to 9pm. I had an eye appointment that morning, so I came in at Noon, but also stayed until 9pm. Around 12:30 we met Deborah who is the Home Health manager. She was there to see Emma and get to know us and our personalities. That night we took Emma on her first stroller ride outside at night! The next day Deborah came to our house to see how the place is arranged, to check if Emma had her own room, and make sure we had safe living conditions. She told us that they used to do the home checks about a week after the baby got home, but then found people living in terrible conditions, without electricity (while the baby had a ventilator!) or a ton of bugs and mosquitoes or it was a one bedroom apartment with nowhere for the nurse to work. That was the only thing she suggested for us: to get a small table and chair for the nurse to be able to work in Emma’s room at night. (I always picture us keeping Emma in the living room during the day.) We had an extra chair in our bedroom already, and ordered a laptop desk with wheels from Amazon. Deborah loved our house and they way Michael has decorated it.

   So Monday of last week was the big meeting, then at 5pm we got another room set up for our “hotel” sleepover! I say hotel because it was a room with a bathroom attached, but it was still inside of the NICU, not too far from where her regular room is. Aside from us not getting as much sleep, I think it went very well. I only had one issue with Emma desatting, but after she passed the gas and I changed her diaper, she was content again. I left for a couple hours to go home and eat and take our dog out, then Michael and I gave Emma her bath and did trach care. The nurse only came in to hand us her medicines and bring more formula every 3-4 hours. Michael said he woke up at 2am and played with Emma since she was awake in her crib, but I slept through that. At 4:15am I woke up because I heard her “talking”. She was just playing with her hands and looking at her new Moana doll, happy as could be! I changed her diaper and the nurse came in right at that time. I figured she was watching me because I was half asleep. I did everything right, but maybe a little slower than usual. Then I went back to sleep for another four hours. I like how we know what each alarm sound means. A few times I heard a soft “bing” noise several times which means the pulse oxymeter wasn’t picking up on her foot. That happens a lot after a bath when her foot is a little colder or if she is really happy & kicking her legs around, so I slept through that. If her heart rate was dropping for a bad reason like desatting, then I definitely wake up for that and check on her. Earlier in the evening it kept alarming once every few minutes because she was sleeping so hard that her heart rate was dropping below 80 for a beat or two. Michael and I definitely took real naps back at home later on Tuesday.

   The “hotel stay” lasted about 17 hours, and I asked Michael if he wanted to do it again a few days later, but he reminded me that the whole point of it is to make sure that we can handle everything on our own with our equipment. It was a fun experience, but I joked that Emma was making it too easy on us by being sleep the first three hours! Around 2:30pm that Tuesday we got back to the hospital and the Speech Therapist, Michelle, was working with Emma on “talking” more with the Passy Muir valve in. Then she tried her first baby food ever- Organic bananas! In total she “ate” 0.7ml of bananas, but to me it seemed more like the tiny spoonfuls simply got absorbed into her saliva? Emma seemed confused and unsure about the experience, but Michelle says they will try sweet potatoes next. After that we changed her into a cute pink bathing suit for Beach Day! The occupational therapist came up with that idea so Emma could play with sand and in a baby pool. Emma is definitely getting stronger and I really had to hold her arm down when she instantly tried to put the sandy hand back in her mouth.

   She has recently been getting her hearing tested and I think she will have one more eye exam in the next ten days. We are working and praying about getting Emma’s special formula cost covered. She has been on EleCare since December, but our insurance won’t cover it. Michael looked up that one can is $40 and lasts 3 days, equaling $400 per month! Last Wednesday they began transitioning her back to Alimentum formula which she was on before EleCare in hopes that it does not bother her tummy or intestines, plus it is about $100/month less. However, during the five days she was on Alimentum her poops were watery and she was receiving higher Watt scores, meaning she showed more agitation, so she is back on EleCare. Michael currently has an interview set up with WIC to see if they will cover it. We also found out today that my insurance will only cover 60 days of Home Health (full time nursing), so we are prepared to be “on our own” by June 29^th!  It is good though because we didn’t really like the idea of having a nurse at our house with us 24/7, but 60 days will be a good amount of time to learn everything else we need more practice with -- on top of everything we have learned since she was born in June!

   FIVE MORE DAYS, PEOPLE!!! J J J Also Emma has 10 teeth now and her most current weight from last night is 11 pounds, 8 ounces (she lost about ½ pound due to the Alimentum issue).

Good News!

   Emma has been doing very well lately. One of her primary nurses, Kim, said on Wednesday, March 21st that Emma had the best day she had ever seen since she started caring for her around August when she got moved to the Critical Care Unit. And on Thursday this week Dr. Lipman said Emma looked the best he had ever seen her. Even with the slight stomach prolapse from her new G-tube, he did not seem concerned enough to plan a surgery, which is great!! She got the new G-tube on March 6th and we were so excited because then we got to see her whole face again without a feeding tube or suction tube in her nose. Within a few days it started to prolapse again, so they put six stitches in (on my request) compared to the two in December before we went to Michigan. Two didn’t seem to hold the spot closed last time, especially since she was on higher ventilator settings/ pressures then. She was on a PEEP of 14-18 then, and is down to 6-7 now!! :)

   I printed out my schedule for the nurses to know my days off and began aiming for a Mother’s Day Homecoming date (May 13th)!! That weekend is six weeks from now which is about how long it will take to complete her discharge and get Home Health set up. We know that it could always take longer if she gets an infection or virus somehow, but things are really looking up. We aren’t sure if those two fistulas in her trachea have healed and closed because we asked the doctors here not to do any more bronchoscopies unless its for more of an emergency reason. Dr. Green said she can come home either way, so there is no real point in making the baby go through another procedure and bill our insurance for one more thing. Emma has not had any issues that would lead them to believe that there is air in her chest. They did an X-ray or two earlier in the month, and everything looked great!! Even her eye exam recently went well. They did not seem concerned about the nystagmus that began after her cardiac arrest in December. Many doctors have said they thought it was related to her being on so many medications.

   She weaned off the Versed on March 21st, the Morphine on the 22nd, and the Precedex (aka Dexmed) today, so she finally got her PICC line out!! I was at work, but the nurse said Emma was smiling and laughing after it was removed from her arm. She is still on Seroquel, Clonodine, Valium, and Methadone, all which are given through her G-tube. Another big thing we have been able to do is take Emma on stroller rides around the NICU. She has been on three so far, each one getting longer as we slowly push her through the various Pods to wave hello to all the nurses. The first two times we walked, Gary (her primary respiratory therapist) pushed the ventilator and oxygen tank on the stand, while the nurse pushed the medicine pole. For the second stroller ride, Emma began smiling once she was placed in the stroller. That was wonderful to see. Last weekend Michael used scrap wood that he had in the garage to make what he calls a detachable ventilator bracket. It hooks and snaps to the stroller in four places and even has a secret storage area. Having the ventilator sit on the front of the stroller leaves room for her “emergency trach bag” under the stroller, which we will have to take with us anytime we leave the house. Everyone at the hospital was very impressed with Michael’s “inVENTion”!!

   One thing I’m not sure if I mentioned in the Michigan posts is that Emma has Klebsiella, which is a common bacteria in people with trachs. They said it is something she will probably always have as long as she has her trach. Luckily there are usually not any side effects, but she does have a multi-resistant kind meaning when the Klebsiella gets stronger (like it did around mid January in Michigan), there are about 15 commonly used antibiotics that do not help it decrease to a lower level. Vancomycin and Meropenum seem to be the best for Emma, but thankfully she has not needed to be on that since we got back to Florida over five weeks ago. In Michigan the nurses and doctors all had to wear gowns and gloves while helping Emma and sometimes even while simply standing in the room. Luckily they said we did not have to wear gowns because they told us it is likely that Michael and I already have a low form of Klebsiella ourselves, from kissing Emma’s face and hands. Also because we would not be going into other patient rooms we would not likely spread it to others. We did wash our hands and use hand sanitizer often. However, at Winnie Palmer the rules are different, maybe because we’re in the NICU there versus being in the PICU in Michigan, but we do have to wear gowns now. The doctors here believe that the Klebsiella could be passed to another person or child, so when she is home and eventually has visitors (for her birthday party?!) we all need to be careful about people not touching Emma’s hands and face because they could spread it around. Maybe even our dog will get it!!

   Emma has six teeth right now. Four of them came through this month, and three of those busted through on the same day (March 20th)! She has had her bottom central incisors since September, then finally got her top central incisors, which we kept expecting to pop through while we were in Michigan, and lastly we can now feel and see the top of the left lateral incisor and the tooth that I’m not sure is the 1st molar or the 2nd bicuspid. Since she has been in much better moods this month as the medicines were weaned off, the Occupational, Physical, and Speech Therapists have all been able to work with her several times per week. She used a Passy Muir valve (talking valve) for the first time on March 14th. It was fun to hear her "talking" a lot by making sounds in her throat. The Child Life Specialist, Julia, even started a scrapbook for us and gave us our own personal Mini Polaroid camera to use in the NICU. We have taken about five pictures with that so far and all of the nurses wrote notes to Emma that are in one of the page pockets.

   For some recent weights, Emma was 10 pounds, 10oz on March 7th and 11 pounds, 8oz on March 28th (vs only being 4 pounds at one month old in the first picture of this post). Her EleCare formula was recently increased from 28ml to 29ml per hour while remaining on continuous feeds, and she will be 10 months old on April 12th. We have been working with her on waving and she has been better about holding her hand open by her face, not so much about moving her arm or wrist back and forth. We'll keep practicing, but she has been doing very well with grabbing and holding those plastic interlocking rings when you hold them in front of her. We like to test her muscles and gently pull them higher as she pulls them down. Michael even put a small plastic Easter egg in her hand to hold and she didn't let go of it even when she started falling asleep. We are so proud of our girl and can't wait for all the new adventures to come as we get closer to bringing her home with us!! :)

Michigan Photos, Part 2

  Here is the second helping of favorite photos while we were living in Ann Arbor, Michigan for two and a half months while Emma prepared for and recovered from her 3D Splint surgery with Dr. Green. It is still considered to be an experimental procedure and she was the 16th patient to receive the splints.

 1/16/18: When you can't bring the baby to the snow, you bring the snow to the baby!! I loved that one of Emma's primary nurses, Bridget, let me fill up a bucket of snow to bring to Emma so she could feel it. I also loved that none of the desk staff questioned it.

 Emma always loves getting her hair shampooed with a head massage during bath time!

 1/18/18: Occupational Therapy with Alice to practice reaching for and grabbing objects.

 1/24/18: Around this time, although the rest of Emma's recovery from surgery was going well, because her trachea tissue is abnormally thin (less than 1mm thick) tearing occurred which created a couple small fistulas. One of the fistulas caused air to leak into her chest, and too much air caused a pneumothorax (collapsed lung). This happened on two different occasions, so twice she had to get a pericardial drain placed to suck out the air, and the chest tube to keep the lung open.

 1/27/18: Fresh air in the Law Quad, part of the University of Michigan.

 1/29/18: Snuggles with her new best friend. On this day Emma was having trouble maintaining a warm temperature and stable blood pressure. There were several reasons for this (blood needed for testing, but her body was not making enough new blood fast enough, and some of the meds she needed included a side effect of low blood pressure, etc) so they had to give her a blood transfusion on a few different days and put a thing that blew warm air on her under warm blankets. She was back on sedation and paralytics during this time so her ventilator pressures would stay low and keep the fistuals closed, in hopes that less air would leak into her chest. Poor baby.

 Sweet kisses from Daddy before one of her weekly bronchoscopies (2/5/18) and being read a Valentines book that was sent by Billie, one of Emma's primary nurses in Orlando (2/8/18)!

 2/8/18: Holding the baby's arm up while the nurse changed her chest tube dressing. She did very well and did not squirm or make any sad faces. She is such a brave little trooper!!

 2/10/18: I absolutely LOVED laying in the crib with Emma. I did this about six times? I liked it even more than holding her. I loved watching Fixer Upper or the Simone Biles biopic at night and talking to Emma during the commercials.

 2/12/18: Very excited to hold Emma after three weeks of not being able to because she had been on paralytics. Since I had my crib time with her, I definitely felt that it was fair to let Michael hold her first.

 2/14/18: After a meeting with Dr. Green, Michael and I decided that the best option was to vote against another surgery (a risky/ low survivable trachea replacement surgery which involved using her esophogas to cover up the fistulas)

 One big thing that Michael and I worked on with Emma while in Michigan was teaching her to hold the monkey pacifier herself. Every time we put it in her mouth to soothe and calm her, we also put her hands on the pacifier. Finally around her 7 month "birthday" she caught on and one day when I put the pacifier in, both hands reached up to hold the pacifier before I could reach for her hands myself. That was another proud parent day for sure!

2/20/18: Emma being her usual silly entertaining self and playing with her various tubes while sitting up in her fancy new Tumble Forms chair. 

We all flew back to Orlando on February 21st. :)