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. :)

Michigan Photos, Part 1

  We have been back in Florida for just over a month now, so here are the first half of my top favorites from our time while we were in Michigan for two and a half months. If you have not seen the PICU Christmas post that I wrote in January, please check it out since I just added pictures that were not originally on there.

  One of the first pictures I got of Emma when we saw her after we arrived in Michigan on Monday, December 11th. She had a 9-minute cardiac arrest when she got to the PICU around 3pm (due to her trach being clogged), but was smiling and happy to see us when we arrived around 6pm. Originally I was pretty bummed when I was told the day before that I was not able to fly up with her in the medical jet, but after hearing about the arrest, I am so very thankful that I was not there to witness the event.

 12/15/17: Emma got a visit from Denver, one of the therapy dogs at Mott Children's Hospital.

12/16/17: Six months old now and laughing about something! :)

 12/22/17: Working on holding her head up and tracking objects with Alice and Sarah, the Occupational and Physical Therapists at Mott. I was very excited that they worked with her on so many things, when I assumed they would only deal with the 3D airway splints, which was the main point of our stay. It is a really great hospital.

 This is Emma's oral brush given to us by the Speech Therapist, Samantha. She showed us how to get Emma used to different feelings (to later use a spoon to eat with) and instructed us to practice holding Emma's cheeks together while using the pacifier to work on her sucking muscles. We either dipped the brush and pacifier into sterile water or formula.

 12/27/17: Heading down early in the morning for the big surgery!! Lots of prayers were said the night before, during and after this surgery. Emma did so well. We could not be more proud of our girl!

 12/29/17: Although heavily sedated and on paralytics, Emma peeked her eyes open for us this morning and gave us a quick smile before going back to sleep for a long time.

 When Emma had recovered more from surgery and it was safe to do so, the nurse and respiratory therapists would use this percussor to "hit" Emma's chest and back in order to get the secretions moving up so they could be suctioned out of her trach. The tool was loud against her skin, but very soft and she really seemed to like it being used.

1/3/18: Emma was lifted off of the sedation and paralytics on New Years Eve. She still slept most of the day. This was a few days later when she did not require so many naps. This day her PICC line was moved from her left arm to the right arm because one of the lumin wires had migrated up her neck instead of being in a central spot near the heart where it should be. 

 1/9/18: I was very happy when one of the nurses, DeSharra, said I was allowed to sit in the crib with Emma! She seemed a bit confused by it, ha. :)

 1/10/18: A few pictures early in the morning before Emma went down for another surgery- a tracheostomy revision so it would be easier to change the trach with the 3D splints placed.

1/13/18: Emma in her favorite place ~ Daddy's arms! He is so great at getting her to laugh by making silly noises, making her toys give hugs, and massaging her head.