Thursday, May 23, 2019

Trach Awareness Week

   It’s Trach Awareness Week! So here is some Emma specific trach/ recap life info: Since she has tracheobronchomalacia (severe floppy airway), she needed a breathing tube attached to a ventilator down her throat for the first 7 weeks of her life. They tried taking the tube out a few times, but she wasn’t able to breathe on her own. We had to wait for her to be big enough (4 & 1/2 pounds, and she was 3 pounds 3oz at birth) before they could do the surgery for the trach placement. I have heard many parents on social media talk about how they cried hearing that their baby needed a trach, but after one Fetal doctor thought Emma wouldn’t even live past birth, Michael and I had no problems with surgeries. “Whatever Emma needs, do it to help her breathe.” However, I cried so much when a respiratory therapist named Errica told me that Emma would *not* be able to come home a week after getting the trach, like the ENT doctor had told Michael. She said, “Please don’t think Emma will be able to go home any time soon.” 
At 10 days old (left) and 1 month old. ♡
Bottom left photo from a few days after she got her trach and opened her eyes again.

   You can read the original blog post I wrote about Emma getting her trach in 2017 ---> HERE
Emma around 5 months old when she slept a lot because she was exhausted from passing out often.
   But we THANK GOD that’s old news now and she’s doing super well on her trach and vent! She still gets overheated easily, which is common for trach kids & those with dwarfism, which Emma also has (specifically Primordial Dwarfism with her Meier-Gorlin Syndrome), so we keep the house cool. Last Friday our AC went out and since Emma’s room was so stuffy, she got to sleep in our bedroom! It got up to 83 degrees inside by 4pm & stayed that hot until Saturday morning when the guys came to fix it. We had the windows open and 3 fans going in the bedroom, so she did great and did not get sweaty! Emma’s ventilator settings are slowly getting lowered, but she will most likely have the trach for many years. 
We survived the night!!! 
   A trach or tracheostomy tube is a small tube inserted into a hole into the trachea in the neck. This tube allows the person to breath without using or bypassing their mouth and nose. Emma needs hers for respiratory issues such as severe tracheomalacia and bronchomalacia, and chronic lung disease due to her Meier-Gorlin Syndrome. However, the 20 other people in the MGS group on Facebook have never had a trach (nor had Genu-Recurvatum/ backwards bending legs like Emma has). Even after she got her trach, her tracheobronchomalacia (which affects 1 in 2,200 babies) was so bad that anytime she held her breath to poop or if she took too big of a breath while crying, it caused her airway to collapse each time, which made her pass out, go limp and turn purple. The nurses always got her back pretty quickly, but Michael and I started worrying about mental damage because of the lack of oxygen to her brain from passing out so often, sometimes up to 10x per day! This happened a lot between August and December 2017 until we were finally able to go CS Mott Children’s Hospital in Michigan before Christmas so Dr. Green and Dr. Oyhe could perform the semi-experimental surgery with the bioresorbable 3D airway splints sewn over her trachea and bronchi. They are made to hold the airways open that way she would always get airflow to her lungs. She was the 16th patient to get the surgery done, the second little person to have it done, but also the one with the thinnest trachea wall. Dr. Green said it was like tissue paper! Although the surgery was super successful, and her PEEP (Positive End-Expiratory Pressure, which is the pressure in the lungs that exists at the end of expiration) went up from 14 to 18, which is a very high amount and not usually recommended, but it worked well for Emma and helped her stop passing out. 
Happy baby in Michigan after her big surgery (photos from 6-8 months old).
Top left photo on the way to trach surgery in July 2017. Bottom photos: February 2018, towards the end of our stay in Michigan when we finally got to hold Emma again. We couldn't hold her while she was on paralytics.
   Within two weeks after the Michigan surgery, her PEEP was down to a 6 (a huge, great deal for everyone because that is almost no support), she unfortunately developed little rips/holes in her trachea. Although her hair grows fast, her body heals slowly. Normally these holes heal within a few days, but because Emma's trachea wall is so thin, it takes her body so long (it's been 15 months so far) to build up scar tissue and cover the holes. She still has one or two now that we are waiting to heal. With these holes, the air that normally passes into the lungs goes into the surrounding tissues. If she is around other little kids who can easily pass along bad germs, or any adult who is sick, a virus could get into her body and she may not be able to fight it off and we could end up back in the hospital, or worse.. That's why Michael and I are so particular about who visits her and why she has not been able to meet her cousins or any of my friends’ kids yet. I sure went on a tanget there, talking about more than just why she has a trach, but it all ties together!! We are so proud of Emma and all she has been through these two years and how she has continued to smile through all of it. We are very pleased with how well her little body has healed from her six surgeries, and protected her, with the help of some medicine and lots of prayers! Happy Tracheostomy Awareness Week!
Being silly and finding another fun use for the blue cuff port.
The "real" use for it is to inflate the balloon inside her airway, but we always leave it deflated.
Doing well during our weekly trach changes! Switching it out for a clean one.
I don't normally post photos like these because I think seeing the stoma/hole is a little bit gross.
But if it is pulling down on the area (mainly bc she has her head back), that's what it looks like.
   Other notes about the trach. It is kept on with ties, which are thin, soft fabric pieces that go around her neck and hold the trach in place- the ones she has always worn are blue with little white stars. Emma's ventilator stand has a humidifier on it to make sure her throat doesn't dry out. The peach colored foam piece around the trach is so the plastic "arms" of the trach in the front of her neck don't rub on the skin. Sometimes we still have to put Hydrocortisone cream and Stoma powder (thicker powder that doesn't leave the hazardous smoke puff like regular baby powder) on the area because it still gets raw and red.
  Also I used to be confused about whether the correct long version of the word was "tracheotomy" or "tracheostomy" (with an S in it) because I thought I had heard both. And I had- Tracheotomy is the word for the actual surgery, while tracheostomy is the long version word of the trach piece that goes in her neck. Before Emma I used to think that trachs were only for older people who couldn't breathe or had lung problems because of smoking so much during their lives. Although I wonder how many babies need trachs and have lung problems because the mom smoked while she was pregnant? That is something that makes Michael and I very mad to see and we even sometimes saw it around the hospital! Not only are they hurting their own health and their unborn baby's health, they are also blowing smoke in the faces of other families where there are tons of signs around saying it was not allowed to smoke on hospital property or in the parking garages. 

   This morning I did a fun little photo shoot with Emma in the front yard by the flowers. And by "fun" I mean it was hot outside even at 8:45am and really difficult pulling the 65 pound ventilator stand through the grass, but Emma did so well. She did not mind or whine at all while sitting and laying in the grass, even with it being a little dewy, and she kept her balance the whole time. Her shirt is from a website called StomaStoma and I'm really trying to get Emma on one of the posts on their Instagram page, HiStomaStoma. Even today my BFF Mia made a cute little Trach Awareness Week collage and put it on her Instagram page for more people to see. 

dropping stuff has been her thing lately. 
   If we had a home nurse again, her only job would be to take pictures and videos of me doing all these photo shoots with Emma as well as all our medical care and doctor appointments for her and then Michael could edit together a web series and we'd be YouTube famous! #goals But for now I'll just keep blogging. 

Tuesday, May 14, 2019

1 Year Home-iversary

On Tuesday, April 30th, we celebrated Emma being home from the Winnie Palmer NICU in Orlando for a full year! And by "celebrated" I mean we acknowledged it, bragged about how great she'd been doing, and had a photo shoot in the living room! I got these letter balloons while I was pregnant, and planned to use then when Emma was a couple weeks old and home from the hospital like any other normal, healthy baby. But of course that never happened and even at 11 months, she didn't seem like a baby anymore. I would have brought them to the NICU, but they had a "no balloon" policy in place. Anyway, I figured I would dust them off and use them for this occasion. However, before sending and posting the photos, I made sure to let my family and friends know that this is definitely not a pregnancy announcement. We have our one baby and our dog, and that's all we need! :)
Emma says, "Oh! Has it been a year already? Woohoo!!"
   And a special appearance by older brother, Shrimp. ^^
The wood burned frame was made by my best friend, Mia, and given to me for the baby shower.
 Emma was throwing around peace signs for a couple days. Peace and love!!
"Shove off, bunny. These are my pictures!"
   With Emma's arms getting a little bit longer, she is able to start pulling her bows out. This was her letting me know that I had taken enough pictures, haha. She did so well sitting up! As of a couple weeks ago her balancing record is 7 1/2 minutes. Great job ~ check out those abs. 
   This morning (May 14th) we went to Pulmonology for a check up and Emma currently weighs 16 pounds, 10 ounces and is 24 inches long. The doctor turned her Pressure Control on the ventilator settings down to 14. She says ten is usually the lowest they set it at (her Breath Rate is already at ten!) so hopefully by August or September we can try sprinting her. That is when they see how she does with the ventilator disconnected. I'm not holding her to any specific dates (like how I was so eager to get her home from the NICU after her due date and then let down so many times), but we are definitely moving in the right direction with everything!
  Also we started having family dinners together, with Emma sitting in her high chair next to us. Since she passed her swallow study last month, we have been giving her tiny amounts of applesauce on a spoon and she ate a lot of it (about seven little scoops) for us, compared to turning her head away and crying during Speech Therapy. So proud!! 

   Happy 1 Year at home, Emmylou! So glad to have you here, striving and surviving like a baby boss, far past many doctors' expectations. We knew you could do it, and it has been so nice getting to come straight home from work each day, instead of making a detour to the hospital first. Those days are still all too clear in my mind. Here's to the next 96 years of great Meier-Gorlin health! :)

Thursday, May 9, 2019

Easter 2019

   This was Emma's first Easter at home on April 21st!! Last year it was on April 1st, so she had her last month in the NICU, but it was still a happy day for us since we got to take her outside in the stroller for the first time! Emma and Michael didn't do anything that I know of since I went to Gainesville and met my mom, brother, and niece for church then hung out at their house for a few hours. On April 24th I took Emma's Easter pictures in the living room.
   Even though Michael and Emma couldn't come to Gainesville with me this time (we have to wait until her fistula -the hole in her trachea- is fully healed before she can meet her cousins or play with any other kids, but Peyton asked about her a lot), I still pulled Emma out of her crib and got a couple pictures with her before I left.
I was glad she held the egg for a picture because she's been in a big throwing phase recently. 
   When we took our Christmas photos last November, we first took them outside, but Michael said they looked more like Easter photos since we took them by the plants and flowers in our front yard. Anyway, I hadn't posted them before since they are in the Easter category. We took them using the Manfrotto arm as the tripod- Michael attached it to the top of my car and put the timer on. It's so crazy to see how long Michael's beard was back then. Also now he looks so different because he is almost clean shaven, has lost weight, and got his ears pierced on Sunday! Here is a comparison photo from a few days ago before we went out to dinner with Emma for our 8 year wedding anniversary, plus some pictures at The Cheesecake Factory (using a gift card, yay!).
 ^^ These pictures, directly above and below, look almost the same, but I like in the one below she is doing the "foot hug" around my wrist a little bit more. I'm trying to teach her how to hug for real! :)
 ^^ This is the picture that I chose to use before we took the better themed ones inside.