March Madness

   One thing I don't think I have talked about before is all the counting, checking off and organizing of the supplies that Michael does each month when Emma's medical supplies get shipped. We get several boxes each month and Michael makes sure we have everything. He also calls at the end of each month to re-order the supplies because we learned the hard way last summer that the supplies do not automatically get shipped, since we assumed they knew she'd still need it all, and we have to call and let them know at the end of each month that Emma still requires all of the same medical materials.

   Some of my jobs related to Emma include picking up her 14 cans of EleCare Jr formula from WIC at the beginning of each month, scheduling doctor appointments and keeping track of our calendar, and ordering then picking up her medicines and treatments from the pharmacy before they are needed. Also blogging!! :)
   Today I was on the phone for at least an hour because one of her doctors apparently forgot to submit an order for some new supplies, including two new custom trachs because apparently each trach is only supposed to be used and washed five times and we've been reusing the same two since she came home from the hospital 9 months ago. We change her trach once a week (usually on Monday nights), which means her two trachs have been used at least 22 times each! I was on hold for 20 minutes with the doctor's office before anyone even picked up, which has never happened before, then they said they forgot to submit the order on Tuesday, but that they just faxed it. So I need to call the medical supply company now and make sure they got it. (Done.) I had the same issue last week with having to call another doctor three different times about getting paperwork for a swallow study sent over to the main hospital so we can get that set up. The speech therapist can't try to give Emma anything by mouth until she knows that Emma will be able to swallow formula or baby food without choking. So now I also need to call the hospital to make sure they got that order. (Still being worked on because the doctor didn't send all the forms that were needed = 3 extra phone calls that I have to make back and forth because I guess they aren't able to call each other..?)

   After we went to Emma's Pulmonology appointment for her last RSV shot they gave me a paper that had her next appointment date and time. The paper also listed her Current Health Issues, so I wanted to list those as a refresher:
  >> Feeding problems (unable to swallow)
  >> Child with short stature
  >> Meier-Gorlin Syndrome
  >> Genu recurvatum, congenital (backwards bending knees)
  >> G-tube feedings
  >> Attention to Gastrostomy
  >> Chronic lung disease
  >> Restrictive lung disease
  >> Airway malacia
  >> Tracheostomy dependent
  >> Ventilator dependent
  >> Need for RSV immunization
  >> Premature adrenarche

That last one listed is a new one. When we went to the pediatrician in January he seemed pretty concerned that Emma has a little bit of pubic hair, so he referred us to endocrinology. (I have not asked any of our Meier-Gorlin friends if they had similar circumstances at a young age.) He said she might have to be put on special medicine or get shots to stop the very pre-mature development of puberty. Michael and I had noticed the little hairs before while changing her diaper often, but didn't think it was a problem. We had to wait a month for the earliest appointment, which we went to at the end of February. Luckily, that doctor was not nearly as concerned as the pediatrician and says it isn't anything to be worried about since it looked more like arm hair and she hasn't started developing baby breasts and does not smell bad or have armpit hair. He got an X-ray of her hand just to check her bone age. He said if her bone age was a few years older than she is, that could explain why her brain is telling her body to start growing the hair. But her bone age is only one!

  A second new thing the pediatrician recommended is for Emma to see a dentist. Since she can't close her mouth all the way (prompting the pediatrician to also ask if we had talked to anyone about her getting jaw surgery- no, we have not) he wanted her to get a fluoride treatment. The dental assistant said X-rays and a cleaning are also typically done, but we aren't sure how much Emma will tolerate. I don't have dental insurance, and wouldn't be able to add it on until August anyway, so we'll just pay the fee for now. Luckily she said we only have to pay for what gets done. If Emma won't let the dentist do the cleaning, we don't pay that part of the fee. Her appointment is scheduled for the beginning of April.
  The pediatrician also highly recommends that Michael and I go out on a date, just ourselves, and have someone babysit Emma. We would only feel comfortable with one of our nurse or RT friends from the NICU watching Emma. However, many things have been recommended to us, and Michael and I decide as a team what we are most happy with doing for/with Emma. One of those decisions is that we like Emma coming on the dates with us. Family dates! So here are pictures of our two recent ones:

   (Pheeew ~ just got her swallow study scheduled for next month!!)  The first few pictures are from when we went to Bahama Breeze a few weeks ago. She was awake then, so after Michael had eaten most of his food he took Emma out of the stroller so she could sit at the table with us. On Tuesday we went to Yard House. She slept the whole time that night, so it was kind of like we were "alone", but I always forget that they have TVs in there so Michael and I didn't talk that much, haha. We did talk about which little towns and parks we want to go to again when we go on our vacation. It's the same area we went to on our Babymoon in April 2017 while I was pregnant with Emma. By the way, these dates were free for us because we were using gift cards that we have accrued over the years. Thank you to our family for sending them. I love gift cards! :)
   Please enjoy these few silly pictures of Emma - she gets so wiggly on the mat that she ends of sliding off either end of it. We have to adjust her every 30 minutes or so.

   Looking like she is getting abducted by aliens in her sleep- haha! (But notice how she always has her mouth open.) And I was so proud of her one night when she found and played with/spun a toy that was behind her! It's so fun to see her learning all these new things. A friend had a shirt on the other day that said, "Grow at your own pace". I wish they made that in baby sizes. I would definitely get one for Emma!

   Yes, that is all her natural baby hair. :)  In the pictures below I got Facebook memory notifications, two for March 6th. The first one from 2017 when I was 23 weeks pregnant, and the second one for last year, about seven weeks before Emma finally came home from the NICU. So, of course, I asked Michael to take another picture on March 6th, 2019!

   In the Best Gift Ever onezie you will notice a big milk stain on her stomach. I took that picture on purpose to show the Gastroenterologist. Michael says we need to get an updated Mic-Key button with a smaller stem (the piece that attaches the outside to the balloon inside her stomach). Since she has been kicking her legs and squeezing her stomach and pulling her legs up to her shoulders, she has been creating abs apparently so her stomach wall is thinner now than it was in November. When she lays on her stomach at night, some of the milk leaks out through the space caused by the Mic-Key button being pushed to the side. The surgical assistant said GI has Mic-Key buttons in their office (the surgical office does not), so we will see GI next week.
   In the other pictures we were practicing tummy time, which she doesn't like. She doesn't mind rolling to her stomach on her own, but she doesn't like being propped up that way. I think it hurts her arms trying to support herself because she always cries in that position. She does need the practice though to build those arm muscles. But I love her little leg bent at the knee (or where the knee would be- she doesn't have knee caps!) like she's trying to move herself.  We know she has some arm strength because lately she has been pulling at the formula tubing so hard that it pops the little door open (where it says Infinity), which causes the feeding pump to stop the flow and alarm.
   Lastly, some new things Michael has been working on lately since he was able to get a 3D printer ~ he has been finding lots of things to make for Emma. The first thing he made was a hook for her formula bag. Before it was on the black part (a Manfroto arm), but sometimes the bag fell off because the only part it was able to hook on to was at an angle. So he made that nice blue piece and he really wants me to mention that the one shown in the picture was prototype #2. He has since made another one that has a thicker part at the bottom where it sticks in to the black Manfroto arm.

   A few days ago he began working on a holder for her pink sodium chloride bullets that get shuffled around this little cardboard box with her "tooth" (white piece used to disconnect her vent circuit if it's stuck too tight against her trach) and the syringe. In the purple box he is making, he has little slits so each pink bullet will stay upright even if you move the ones around it. He keeps tweaking it so I don't have a picture of the finished product yet. But, I tell ya, this man I married is a genius!

Strong, Patient & Happy

   Last night Michael and I were arguing about when we each think Emma should get her next bronchoscopy done to see if the fistula in her trachea has completely healed yet. I vote for July, but he wants to wait until the end of the year. I hate disagreeing with him about medical stuff because since we started trying to have a baby in January 2016, getting through my miscarriage together, and then everything with Emma, medical stuff has been what bonded us. Nobody knows what we have been through. Nobody! It has always been “us against the world” or sometimes even “us against the doctors” (when we really did know what was best for her on a specific topic, more than they did). Even our families have no idea what it takes to be Emma’s parents. They come to our house once in a while and watch us work with her, doing her treatments, and they've seen a trach change done. Yes, I would say sometimes it is pretty easy being her parent. But there is a lot of medical behind the scenes that I don’t talk about on this blog, or little things we do that I don’t normally think to mention in regular conversations.

   On two occasions we have had family members (not our parents) ask why we couldn’t bring Emma on a beach vacation this year.. Really?! I was so surprised that they were surprised, and it just makes me sad how little they know and understand about her. (1) She’s ventilator dependent and we can’t push her stroller in the sand. (2) That and the salt water could get all into the medical equipment or blow into her trachea. (3) She doesn’t do well in the heat. If it’s 80 or more she gets so sweaty and cries and has trouble breathing. (4) Most likely if we attempted a beach trip with family, the reality would be that one person would end up staying in the condo with Emma while the other person did fun stuff in the pool or ocean, which makes it not a very fun vacation for the one who is “babysitting”. EDIT: I just read something (on 3/5/19) that another woman wrote in the Special Needs Parents Support & Discussion Facebook group that I was invited to recently. She was commenting on someone else's post, but it definitely applies to this rant. She said, "Try to let it go. They do not understand what they have not experienced." I love that!! And I will try to remember that more. 
   We are embarking on a huge adventure by taking Emma on her first vacation to the North Georgia mountains soon. I’m really hoping it doesn’t rain because, again, she’s on the ventilator 24/7- definitely can’t get that wet! Today Michael started talking about making a rain cover for it. 

  I already have tons of questions about this trip..

How long does it take us to make the 7 & ½ hour trip? How often do we have to stop?

How does she do in her car seat that long? Does she take lots of naps in the car?

Does she have any issues with the altitude change (although Pulmonology said she won’t)?

Does the whole trip go super well without an emergency hospital visit?

How much hiking (amount of days, time & distance) are we able to do with Michael using the heavy Ventilator Backpack? Do I use it at all? (He's already voting "no" on that. My muscles are limited, ha!)

Did we forget anything that we need to remember for the next trip?

   My friend Alana is about to have her baby, as in: she's in the hospital right now, so I’ve been reading all of Emma’s earlier blog posts from May to October 2017. I found this quote in one of the September posts and it seems to apply more to me right now.. “She is so strong and brave and I hope she knows that life will get a lot better and that it won’t always be like this.”  Michael says I’m still in denial about Emma and all her medical issues, and I probably am. I told him that the root of my aggravation last night during the argument was that I want her to get the bronchoscopy done sooner that way, if the fistula is fully healed, she has a couple months to meet Peyton and Helena (her cousins) and possibly another baby friend or two. I say “a couple months” because while she is getting the RSV shots during the cold and flu months (October-February) she has to stay away from kids anyway. All trach & vent kids do, I think. Or at least it is highly recommended by the parents that I follow on Facebook and they are used to spending Thanksgiving and Christmas by themselves.

   As I have gotten older I have noticed a lot of similarities between my mom and I that I hadn’t realized before. The part of my personality that gets hyped up to make fun plans and then get upset when those plans don’t work out, I get from her. But instead of thinking of all the things Emma can’t do yet (like an Easter photoshoot with Peyton and Helena in pretty matching dresses- good thing Michael is really good at Photoshop!), we have to focus on all the good things. That is one thing I love about this blog, getting to reread everything that we went through and realizing HOW FAR she has come in the past year and 10 months. In October 2017 a “good day” was her in the NICU and "only" passing out 2 or 3 times. Really!? That was a good day?! And now here we are still complaining about less important things. Even compared to when she came home last May, I am super glad she got weaned off the rest of her meds so we didn’t have to give those every 3 hours, including waking up at 1am and 4am and me worrying I’d be too tired and give the wrong one or the wrong amount. Now there are times we get great sleep, Emma sleeps all night or her alarms don’t go off until 9am. I was thinking recently about how we haven’t had to do random trach changes in the middle of the night, like we did over the summer, because she couldn’t breathe well. All (3) of our hospital visits have been scheduled and just G-tube related, nothing respiratory. And everything with her G-tube has been great since she got the revision surgery done in August. Before that, her G-tube popped out a lot! Like 5x per month, and even 3x in one DAY in May, but we always put it back in ourselves. No issues with that now and the Mic-Key button she got switched to in November has been working super well for us. She hasn't used or needed any oxygen in almost two weeks. Lots of positives!! I am SOOO glad that Doctor Green made a note before we left Michigan saying that Emma did NOT have to stay in the hospital until her fistula healed. I made a big sign that said that when we got back to the NICU in Orlando. It was very important that the doctors knew that! The fact that Emma has been home for almost as long as she was in the hospital is a HUGE deal (obviously there will be a photoshoot for that celebration too). She has been staying healthy on the Augmentin medicine and I am very glad that she didn’t catch anything from us when I was sick for a week with my sinus/cough garbage and then on February 22^nd when Michael had a 24 hour flu! Luckily I didn’t get any of that either. That's a little different though because we don't have the option to not stay at home, but we can decide who is safe and not safe yet for her to meet and interact with. So meeting her cousins (no offense) should be the least of our worries right now. Definitely not something to yell and stress about, causing distance in our relationship when we need each other so much. We will always be Team Emma no matter what!! 

   “Life moves at the pace it wants (and God wants), not the pace you want.” && “A good life is not a life without problems, it’s a life with good problems.” Quotes by Mark Manson. Photos below are from February 22^nd (in the dress) and March 1^st (on the couch) using the flowers Michael got me for Valentine’s Day.

Valentine's Day ♡

    On Valentine's Day (last Thursday) Emma and I had the day together, so of course a photoshoot had to be done. I even put make up on because I love getting Mommy/Emmy pictures together!! Michael bought and arranged the super beautiful bouquet of flowers on Tuesday night. He was smart and got them early before Publix had slim pickins! My mom sent the "cheeks to swoon over" outfit and other fun goodies in the photos. The white bear in the kissy lips photos is from my friend, Miriam. :)
   You can read about last year's Valentines Day *HERE* when we got glorious news and had one week left of a real winter while staying at CS Mott Children's Hospital in Ann Arbor, Michigan.

"He loves me.. he loves me not.. HE LOVES ME!!"

 Look at her sitting up with her straight leggies. She can definitely still bend them up and backwards, but she has been doing better with keeping them straight at times. Emma also got new, longer leg splints made recently (which I take off for photoshoots). Side note: I like the different Instagram edits because they make her outfit look different colors ~purple at the top and red below VS the regular pink.

 Can't let Sasha feel left out! She keeps close to us when we are around Emma, as if to say, "Don't forget that I'm here too!"I love Emma's water spout ponytail compared to the ponyloop I usually do.

   Emma has been acting more child-like lately, and less like a baby, but that makes sense considering she is 1 year and 8 months old! The night of Valentine's Day she showed off her "child side" when she was in her portable bathtub in her room. She has started splashing her hand in the water, getting a bunch of water on the carpet. I gently held her arm down, so she started kicking her leg instead! She has been doing "crunches" for a couple weeks during trach care, where she lifts her head and her legs up so her stomach gets tight. She always laughs about it and Michael thinks she is trying to sit up on her own, but she never makes it farther than a crunch (so far)! She usually does about 3 in a row. And this morning during physical therapy with Grace and Lara she was doing a nose scrunch a lot of times. It reminded me of a bunny or like when someone is trying to get a sneeze to go away. Maybe she was trying to keep her glasses on her nose? I was thinking I would love to write a post called "Her New Thing" about all the new things Emma learns or starts doing, but I don't usually write them all down with the date and just hope that I remember to blog about them later. I definitely want to post blogs with all her hilarious kid quotes, whenever she starts talking in sentences later on in life. ♥