Our Great Marriage

A quick story first:

I walked into the dark room and Emma was sleeping so peacefully. Quietly, without any signs of labored breathing. She looked like an angel although I don’t like using that term because “angel” makes me think about her being in Heaven and I don’t want that. This is our 5 month old baby and I want her here with us. As I whispered to her she opened her hand just enough for me to slip my finger into her palm. She gently held on to it and I continued talking to her, telling her that I loved her and how beautiful she was. After a good day, I just had to hold her. I scrolled through the pictures on my phone to see the last time I held her. Last Tuesday- six days ago. I started to slip my finger out of Emma’s hand, but she held on tighter with her eyes still shut.
“I promise I’ll be right back,” I told her. “I just want to ask Billie if I can hold you. I’d really like to hold you. I’ll be right back.”
I walked out of her room and over to where the nurse was sitting at the desk in the middle of the pod. “Hey... so... I feel bad asking this, but-“
“You want to hold her?”
“Yes! Is that okay? She is sleeping so well, but it has felt like so long since I’ve held her and since she had a good day.. I’d just feel so bad if she got crabby because I move her.”
Billie laughed, “I know its been a while. I think she’d like that though. Whats the worst that could happen?”
I’m not sure if that was a rhetorical question, but I answered it anyway. “She passes out.” Luckily she didn’t and she seemed pretty comfortable during the hour and 15 minutes that I was able to hold her before having to go home again.

***********
I started reading a “marriage after children” book but it actually started making me sad. I really feel like I don’t need to read it. I am not hesitant to say that yes, before Emma was born, I worried about how things would be after Emma was born. Would Michael and I fight about whose turn it was to change her diaper or feed her in the middle of the night? Would we fight if I wanted to take Emma to Gainesville to visit my parents when he’s at work, but he wanted us to stay in Orlando?

We have talked about those things, and yes for diapers sometimes (in the hospital) we’re like “I changed the last three. Its your turn.” But neither of us get mad about it bc we want it changed so Emma stops crying (or doesn’t start crying) and is content or happy again. We have talked about taking all of our trips together- partly to do everything as a family, but mostly for her safety. I keep imagining that Michael will drive and I’ll sit in the back with her to talk to her and play with her or turn up her oxygen or suction her trach from the car seat.

July was probably the hardest for us. That was when I went back to work, so Michael saw Emma at 5:30, and I saw her at 7:30, but then we barely saw each other. Visiting her at different times made me feel like a single mom in some moments and I never want to be a single mom. We were both so tired (from work, driving back and forth, me pumping milk, and I was still crying often- wanting her healthy at home) which caused us to make harsh snippy remarks. It made me sad thinking “is this how its going to be now? For how long?” But by August, after Emma got her trach put in, we were in more of a groove and we’d visit her at the same time so we could do hands on together. That really filled up my heart and I started referring to it as “Family Time” instead. We were doing it at least 3x a week (almost every other day— giving Emma a bath and changing her trach ties, taking her temperature, putting a new outfit on her).

In October we didnt seem to do Hands On much. We were pros by then (and now we’ve changed out her trach twice together and once each by ourselves), so we let the nurses do it- after all they are getting paid thousands of dollars to take care of her.. But this month we’re more determined to prove to everyone, “Hey, we’ve got this. We’ve learned the stuff. We know what we’re doing. Her issues aren’t going to go away anytime soon, so let us bring our 5 month old baby home where she’ll obviously be happier.” If I were to give each month an emotion, November would be Frustrated.

But our marriage has been really good again since August. We’ve been making more time for fun outings, dates, and each other. Maybe that’s another reason why God is keeping her in the hospital- because it helps us stay close in our marriage? And I love that. I love seeing Michael have cute conversations with her. He tells her how beautiful she is, how much we love her, that we are so lucky to have her, and that she has nothing to be upset about (to help calm her down).

As for the hard parts we are still dealing with.. When everyone at work asks how Emma is doing and I say she’s good so they assume that means she can come home very soon or is already home. No.. I’m sorry my attempt at positivity was so confusing.. And I hate having to ask permission to hold my own baby. After five months, I’m starting to get pretty frustrated about that. I might just start doing it- picking her up. At least when I stand right next to the crib so I don’t have to worry about moving the wires and tubes for her oxygen probe, heart rate leads, farrell bag (for her G-tube/ MIC-KEY button), milk feed, and trach suction.

Back to that “Married with Children” book I mentioned at the beginning, I often wonder how self help and marriage books remain so popular. Everything is about patience and communication. Why is it so much easier to ask everyone else how to make their spouse happy (or whatever) rather than.. *gasp*.. asking their spouse!! I even did it the other day. And after the fourth text to a different person, I was like, “Oh my gosh- come on! Just ask Michael! He will always have the best answer.”

But don’t only ask your spouse one time. Ask the same question every few months. People change. Our wants and needs change. So something that he liked when I met him might not be as important as it was last year or in five years. What am I even talking about right now..? Our marriage is really great and I don’t need a book written by someone else’s husband to tell me what my husband (or I) need.

This past weekend was hard due to Emma being really puffy for an unknown reason and her breathing seeming harder for her. Luckily those problems seemed to go away when I saw her on Monday night. But the marriage part of the weekend was so nice. We went to Universal just for a few hours on Saturday so I could get a butterbeer and for the first night of the Hogwarts castle lighting. I dressed up as I usually do. Michael told me at least four times that I looked beautiful, even with my Hermione hair which I might start styling like that more often. On Sunday after I helped Michael with some yard work, we ran errands including picking out two Christmas dresses for Emma, then going to get tacos. Later we went to Kohls to get our own new Christmas outfits. (They are doing professional family photos at the hospital soon.) I let him pick my dress out and then he picked out some ankle boots with a chunky heel on them. He knelt next to me and helped me put the shoes on without me asking. He said it was because he knows I never wear heels, but I’m pretty sure he did the same thing a few months ago when I was trying on flats. He’s good at that kind of stuff. And when I tried on the whole outfit (including a matching necklace and earrings) he gushed about how amazing I looked. “Shnooks, please tell me that you think you look beautiful.” I did think I looked really good even without makeup which I dont often wear anymore.

NICU Life in Photos

   There is a photo challenge going around on social media about posting seven black and white photos of your every day life, but it can’t be pictures of yourself or people you know. It’s supposed to be a week long challenge, but since it’s impossible for me to go that long without posting a picture of Emma (plus then I would be denying everyone else on Facebook pictures of Emma, and nobody wants that), I took all of my pictures in the same day. And then added a few more from other days that are NICU related, such as views out my window while driving to the hospital.

 The other night I wondered what advise my best friend Mia would give herself to stay positive if she was in our situation. She gave the uplifting words I was looking for, but then this song came on and it was great listening to the lyrics too.

"Be strong in the Lord and Never give up hope,
You're going to do great things, I already know,
God's got His hand on you so, Don't live life in fear,
Forgive and forget, But don't forget why you're here,
Take your time and pray, These are the words I would say.."

   Another mom and dad had their baby outside and I saw that she had a G-tube too, so I asked if I could get a picture of everything together to see how it might be for us. I'm not sure if she would have all of that with her, but maybe. I can't really imagine pushing that around Disney Springs with us (and all the ventilator stuff) but we want to be able to take Emma around places. That baby did not have a trach.

   Emma joined in on the photo challenge too. Here are three pictures of what she sees and gets to “enjoy” every day. 

  How boring- ha!! But they have been giving her “pod time” where she gets to sit in the carpeted area where the nurses and doctors sit at the computers to document how the babies are doing. She seems to like that a lot since she gets to be closer to everyone and gets more attention, especially when she was dressed up as Baby Dorothy! The fourth picture was a photo challenge done by her guardian angel. Anytime Emma is looking up at the ceiling, I always ask her if she sees the angels. :)

And now here are more black and white artsy pictures that do include sweet baby and family faces!!

 Twins!! Emmy and Emma. Can you tell who is who? ;)

 ♡

Trach-or-Treat

    Thus begins the hospital holidays of 2017. On October 24th Emma began passing out again, and has done so almost every day since October 24th (from taking too many breaths in and not being able to exhale enough when something bothers her- usually tummy or gas issues- due to her trachaeomalacia and bronchomalacia) but she has been such a trooper when I take advantage of her good times and dress her up. Luckily although now the bad episodes have lasted more days, at least she isn’t passing out ten times per day like she did those three days in September. However, having her come home by Christmas seems to be an old dream, and now we’re hoping for January or February. 

   I did three photoshoots with Emma since last week. When my mom visited last Wednesday, she surprised me with a tiny Dorothy dress, matching onesie and ruby socks for Emma. Emma was kind of tired and crabby the day my mom was there so we didn't change her clothes. She was better the next day when I visited, so the nurse (Kim) took a bunch of cute pictures of us!! 

   On the 29th at work, I dressed as Hermione since I can’t just not dress up. Originally I talked about being a Slytherin since I always felt that those traits defined me the most, but after everything we have been through with Emma these past six months since I had to be in the hospital while pregnant, I feel like I’ve had to be a lot more brave, strong, and determined than I have before. That night I visited Emma, but she passed out right after I got there, then fell back asleep. I held her hand for 20 minutes, and on Monday she was better so I dressed her up for a few pictures. She currently weighs 7 pounds, 3oz and is 18 inches long. Growing slowly! :)

 ^^ that night she kept her hand in the holding position after I moved my finger, so I let Curious George (I just call him "monkey") hold her hand while she kept sleeping.

   Yesterday at home I dressed up as Dorothy then went to the hospital for more pictures. Nurse Kim had sent another picture and video of Emma (they use an app called EASE) smiling and having a good time in her swing right outside of her room. She was still in an okay mood when I got there and was wearing her “My First Halloween” onesie.

   Our neighborhood is a dud on Halloween night. There was not a single person walking around when I got home at 7pm. I guess next year we’ll have to try our luck in the bigger neighborhoods behind ours. I saw a Halloween shirt while looking up “costumes for trach babies” that said Trach-or-Treat, so that might have to be our family’s little inside joke over the years, even when Emma is older and doesn’t need her trach anymore. I was even talking to my co-workers about pushing her in a stroller next year, then I realized she might be able to walk by then! She’ll be a year and 4 months, so it depends on how quickly she heals after her knee surgery (surgeries?) in the summer. Our little Emmy is growing up so fast!