So many fricken tubes and cords (G-tube, ventilator circuit, foot probe to monitor her blood oxygen level and heart rate, suction machine, and broncho dilator treatments), which sometimes makes this whole "having a medical baby" blessing a lot harder than I let on. You try changing a big, poopy diaper without any of it getting on everything that needs to remain sterile! Especially this morning was a panic when I accidentally ripped out her inflated Mic-Key button because it got caught on the side of the crib when I went to move her. Blood seeped out with tummy juices. She cried a lot as I quickly jumped into my important nurse role and put everything back together again.
October 27th:
Michael and I holding hands. We have held hands twice in the car since Emma came home from the NICU a year and a half ago.. twice!! I should rephrase: We have been able to sit in the front of the car together twice since she came home, and that was only because we brought the wagon in the car (for the 4th of July and last weekend's pumpkin patch), so the seat next to her needed to be folded down to fit the wagon. Every other time Michael sits in the back while I drive.
We have had a lot of ups and downs in our relationship/ marriage over the past ten years, but this year has definitely felt the most strain (to me - Michael may vote that our "worst marriage year" was in 2013 when we lived in California). Crazy that this time seems more difficult now than when Emma was in the NICU, but that was more of a parental strain. Surprisingly, we agree that our 73 days in Michigan were the best we've had! Not the best for Emma since she was there for a major surgery. But we were so strong and loving and supportive for each other. We had all that time to spend together and with Emma. No jobs to worry about going to, very little financial stress, living at the Ronald McDonald House for free, no weight loss drama (another one of my issues), we went on dates, and would hold hands or lock arms all the time while exploring downtown Ann Arbor in the snow. Everything was focused on Emma.
Unfortunately, we're back in the middle of everything now, the complete opposite: something always taking our attention away from each other. Working as much as possible individually (we have to take turns working so one of us is always home with Emma), but not working enough to keep us at the financial level that we were when Michael was able to work full time. Michael wishes he could work more, I wish I could switch to part time, but we've done the math and it doesn't even out. We fight a lot and shoot jabs at each other because we hate that we barely get time together and other things become more important and more worthy of our time. There is a lot we have to work on, especially if this is how it's going to be for the next three years until Emma starts kindergarten. We still have a decent enough of good, fun family days, (like when Michael and I are both off because Emma had a doctor appointment), but when it's bad, it feels really bad.
I love when people tell us that we are such a great team for Emma - and medically we are, jumping into Nurse Mode when needed, but there is a lot more arguing going on behind the scenes of the smiley photos that I choose to post. A lot of times I think "this year has been so rough", but then years later, looking back, that part didn't seem so bad. So that must mean in a couple more years, this rough patch will be old news too.. right?
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Another hard part is more of a back and forth feeling of parenthood and all of the help Emma still needs. She is in three different therapies and even though they give us homework (needing to "feed" her twice a day and do a bunch of different exercises with her), which we know is important and will help her grow in many ways, sometimes we don't have time for it between doctor appointments or running errands, or sometimes we are just so tired and all we want to do is relax and watch TV or take naps when it's our turn at home since we have spent the other days working. Sometimes when we are trying to schedule appointments, the nurses or receptionists seem surprised that we only have a few days available each month or appointments. Do most parents with medical kids not have jobs? Then how would we be expected to pay the thousands of dollars in medical bills each month?! But unfortunately, us being responsible and working as much as possible causes us to make too much money according to the government and then.. never mind, this isn't meant to be a rant about that..
Michael and I are aware that we aren't doing everything we can for Emma. We feel really guilty about it too, like we aren't very good parents to this super amazing girl. There are days where we have more energy and we play the games and explain the shapes and help her with balancing and read a bunch of books. But since Emma is so independent and is really good about occupying her time and keeping herself entertained in really basic ways (such as playing with her medical attachments, flipping the corner of the rug 40 times, playing peek-a-boo with her slobby rag, moving herself around on the living room floor, balancing her vent circuit on her toes, laughing at random things, dumping the water cady out or emptying the diaper basket, giving herself wet willies in the ears and nose, spinning her turtle toy 100 times when she's in the stander), we tend to take advantage of that and use that time to relax and watch TV or clean up around the house and catch up on the mountains of laundry waiting for us in the dryer. I also feel like the gross 5:30pm darkness of Fall Daylight Savings that is throwing off our schedules and making us more tired than usual is not helping either.
And while I'm being honest here, I am well aware that getting pizza and mini Cinnabons delivered twice a week isn't helping our bodies with the laziness and tiredness affects either, but since I can't leave the house with Emma, I don't have any time to run out and get groceries. I suppose I could walk her the two miles down to Publix, but then where would I put all the groceries..? I know Wal-Mart does grocery delivery. Maybe I should start doing that instead since I'm already paying delivery fees and a tip anyway.. So much unbalance right now. We're working on all of it..
This morning I wrote out a "perfect schedule" to include all of the therapy homework we need to do with Emma and I will follow it on Thursday to include photos of each activity and post about that later. I'll put a note to eat a smoothie bowl and salad too! Those always make me feel better.
Photo below is from a lazy day when we stayed in our jammies and didn't brush our hair.
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And now for an easy part, or more rather, a great day we had: Friday, November 1st. My mom came to visit and I was feeling brave and really wanted to try taking Emma out shopping for half of Halloween decor at Marshall's and Ross without Michael's help. My mom assisted where she was able, but I was in charge and gave verbal step by step instructions on how we would do things. Michael usually takes charge, but after a year and a half of taking Emma places, I was ready to prove that I could take her somewhere and do everything by myself too! I would not have done this if my mom wasn't there to help. Taking care of Emma is often a two person job when it comes to a lot of her cares (especially with trach care/ trach changes and taking her places in the car).
It was a really fun experience and I was hoping for a few more outings "on my own", but we recently agreed that we should sell my car and put that money into savings, which we did this past Wednesday. So we will go back to wagon rides around the neighborhood whenever Michael is out with the one car we now have. We agreed this was a good idea because we wanted the sale money to increase our savings account and because there had only been three times since May 2018 that both cars were used at the same time. And those three times were not necessary. We are officially a one-car family!!
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Here are more photos of our happy times this summer (between June and November) that I don't really have more to say about and it seems weird to just put these all in a separate post without a long paragraph to go with it. First photo from June at her last pediatrician appointment. That is Doctor Coffman. We like him a lot because he is really nice, cares about our marriage because he knows that it will help us be better parents, and he is great with details. After her check ups, he always lists everything we talked about before setting the next appointment. He says since she sees lots of other doctors every month, he doesn't need us back until after her third birthday! He asked if he could get a picture with Emma so he could show his wife since he says he tells her about Emma. :)
^^ This thing Emma is doing with the end of the suction catheter and the little accordion piece of her vent tubing is what I refer to as "playing the violin". She holds it there against her teeth and uses her right hand to move the catheter back and forth a bunch of times. It was even the first thing I heard her doing when she woke up this morning. Also this photo below is my current favorite of us, taken November 7th (my mom's birthday). I love seeing her be so silly while I was holding her on the couch, but when I was looking at it for the 17th time, I then noticed that her eyes are looking at me! So of course, that made me love it even more. As if she's thinking, "Oh, Mommy, you are so much fun!"
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