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!

More Great Laughter

   Michael and I got to the hospital last night for her second hands on time and changed her trach- me taking it out and Michael putting the new one in with fresh ties after he cleaned around her trachea stoma and neck. We didn't give her a bath because the nurse said she had given her a good one the night before, plus then that gave Michael extra time to hold Emma. She has been doing so great lately and barely having any desats, or even when she has them they are manageable, rather than being the bad "breath-holding spells" that cause her to pass out.

   Is that not the cutest little nose scrunch ever?! Lately she has even been less bothered by getting her diaper changed (at least when we do it). Today while I was wiping her bottom she even smiled!! She's proud of herself for doing so well and knows she will be coming home soon. We don't have a scheduled discharge date yet, but hopefully that will get set this week. Dr. Hardy thinks it is definitely possible for her to be home before Christmas.

   Today my friend Tonia drove up from Sarasota to meet Emma. She texted me two weeks ago asking when a good day would be, and I loved the assertiveness since not many people have asked to meet her. She really loved Tonia though and it helped that she was in a great mood too! She was awake when we got to the hospital at 1:30 and her legs were dancing to her "Toddler Adventure Songs" CD.  We stayed for two hours and watched her play. I did her hands on stuff (blood pressure, changed her diaper, took her temperature, put an outfit on) and then she got my milk. Tonia asked a lot of questions and we talked about a lot of different things. She was really great with Emma, including helping her fall asleep before we left by quietly repeating "Shhhhh" until Emma kept her eyes closed.

Twelve More Kisses

    On Sunday morning I wrote a poem for Emma. I started it after visiting her on Friday night, not wanting to leave her because she was doing so well and seemed really content. Not overly happy, with big smiles, but a few small ones here and there and she was also "dancing". She was kicking her legs and moving her arms and head around a lot. She does the same thing when she gets aggravated or has gas, but this was a great night. She didn't even furrow her eyebrows when I changed her diaper.

Here is the poem:

Two short chubby legs, dancing in the air
A cute little face, smiling without a care
I'm excited to see you, I've been waiting all day
Mommy is here now, Mommy will stay
You hold me tight with your small baby hand
I can't help but wonder if God told you this plan
I stay for ten minutes, but it's really an hour
You build my heart up like a strong tower

One more kiss and then I'll sigh
Next to you I'd love to lie
Twelve more kisses and then I'll go
Okay, now six more and don't say no
Oh my heart, it wants to cry
Every time I say goodbye
Never goodbye, but Emma goodnight
I'll hold you tomorrow in the afternoon's light

You are our perfect baby
Our little pumpkin bee
Even more wonderful than we ever could have dreamed
Your eyes light up, we watch you beam
The smiles you give Daddy just melt his big heart
Together forever, we will never be apart
Daddy hold you tight, he won't let go
We'll keep you safe I hope you know
I cry when you cry, but please don't be scared
Just keep being strong and know that we care

Nine months of hugs were never enough
For a three pound baby, you sure are tough
Oh how the time it tends to fly
Every time I say goodbye
Twelve more kisses and I promise I'll go
Okay, just six more and don't say no
Never goodbye, but Emma goodnight
I'll hold you tomorrow in the mid morning's light

   When I read the poem to her on Sunday night after her bath and trach care, I got teary at the end. Probably because we were about to leave again. After the meeting we had with the doctors and Emma's therapists two weeks ago, the case worker talked to us and suggested that we take some days off without feeling bad about not visiting, remembering that we are still really great parents. And she said taking a day off from the hospital because we are working doesn't count. But she doesn't have kids. It's not possible to not feel guilty and one day I cried that we even have to make those decisions. Nobody should have to think, "Hm, should I see my baby today?" But Michael and I have to ask ourselves that and we're getting through it the best that we can. 

  Yesterday the Home Health lady called and said she just got updated paperwork saying that Emma was scheduled to come home on Halloween.. Ahhhh!!!! My heart began pounding with excitement, but at the same time I was really skeptical. I am pretty sure it will be at least December before she is home. They still have to ween down her vent settings and some of her medicines. Plus she's still having episodes. Not bad ones like last month when she was passing out three times a day, but her stats still drop. Luckily after four months we are all better at figuring out what she needs. Sometimes just giving her the pacifier and playing with her hair is enough. She just wants the attention and to make sure she is not forgotten about. I don't think that is possible. Definitely not for us and even a lot of the nurses come by just to see how she's doing even if they are not her nurse that day. I called the NICU on the way to the hospital and our case worker confirmed that no, Emma is not coming home on Halloween. And that's okay since she still needs more time to get stronger.

Pumpkin Bee

   Originally this post was going to be called Pumpkin Pie, but the other day, possibly by accident, Michael called Emma "Pumpkin Bee" and now I like that.

  Two weeks ago (Monday, October 2nd) my parents came down to visit with my brother Zach, and his daughters, Peyton and Helena, so we could go to The Crayola Experience and then visit Emma. I liked naming the crayons and a few other activities and watching the presentation of how crayons are made, but was anxious to see our baby girl. We are still only allowed to have two people in Emma’s NICU room at a time, and one of those people when we have visitors is either me or Michael. I took Zach back first since he had not met Emma before, then my dad (for his second time seeing her), then my mom. They took turns watching Peyton and Helena in the lobby since little kids aren’t allowed in the NICU without paperwork saying they have updated shots, and even then only siblings are allowed in, not cousins. Luckily Emma was having another great day and liked the attention so she didn’t mind wearing the pumpkin hat that my mom brought.

   Last Sunday (October 8th) when we visited Emma she was having another really great day. She's actually had a lot of really great days this month. I keep waiting for the doctors to tell us that she's back on track to come home in six weeks, but they haven't yet. Not only was she not having episodes, but she was also smiling at herself in the mirror and playing with her toys. The nurse, Kim, put a new pretty dress on her so we took advantage of her happiness for another family photoshoot. Kim was busy with another baby when we got there so Michael took pictures of me holding her. 

   We had a meeting two days later with the nurses and doctors. The week before they found fractures on her lower ribs and wondered if she has Brittle Bone Disease, but testing showed she does not. Thank goodness- poor baby doesn't need any more problems. The ribs are healing, but her trachea and bronchi are the main issues which cause the episodes when her throat closes, so we still don’t know when we can bring her home. I’m hoping in December, before Christmas.

   On Thursday (October 12th) along with Michael's birthday, it was also Emma's 4 month "birthday" and since she was doing so well we got pictures. I'm trying to keep our life as normal as possible, still wanting to do as much as I would if she were home already.

 ^^ This picture makes me laugh. It's currently one of my phone wallpapers!

  It makes me so happy that she has been smiling a lot more lately and laughing a little bit. From what I have seen she doesn't cry as much as I assumed babies do. Maybe because she stays fed every three hours and we change her diapers often, or because I'm only around her for one to four hours per day. Everyone has been saying how great she has been doing lately, so that's always wonderful to hear. Max, the music therapist, recorded me reading a short version of the Wizard of Oz for the nurses to play when I'm not there. Apparently Emma loves it so they keep it on repeat.