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.

Doubled in Weight

  As of the end of September, Emma has more than doubled her birth weight. She was 3 pounds, 3 ounces when she is was born and last night the nurse told us that she weighs 6 pounds, 9 ounces. We are so proud of this little baby. 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. We just have to figure some more stuff out and keep praying.
  In a couple of the pictures you may notice that I'm wearing a bikini top. I thought it would be better for Kangaroo Care (skin to skin) but this is one sweaty baby and she seemed to get uncomfortable when she got too warm. My mom visited about two weeks ago during that time and was able to slip a blanket between Emma little body and my arm and chest. She fell back asleep then. Once in a while she will try to figure out how to suck her thumb. I love watching her figure it out!

Our Best Days

   In the past two weeks, Emma has had her very best days, as well as a few of her worst days. Our emotions tend to feed off of how she is doing, so Michael and I have also had some really great and really sad days recently. But I'm just going to post pictures from the wonderful days because those are what I want to remember more.

   On September 13th, Emma was switched over to the LTV home ventilator and the doctors started talking to us about her coming home in six weeks (around October 25th), and apparently the nurse she had tonight said it still says in her chart that Emma is scheduled to be discharged next month, so maybe it all depends on how October goes? We assumed her discharge was on pause for now. On September 14th, I got to hold Emma and after having her in my arms for a few minutes I told the nurse (Kim) that I often pictured holding her up on my legs so I can see her better. Kim suggested that we try it since Emma needs to practice sitting up more anyway, like she would be in a stroller. Kim took a few pictures for me, which I really appreciated since they are better than "selfies". The first picture is of the LTV vent, but one of her RTs (respiratory therapist) thinks she might do better on the Trilogy ventilator and that one is smaller, which is nice since she will always have to be attached to it (we would have to carry it in a backpack or store it under the stroller when we go places). If that's what they want to try Emma on next, they will have to get one ordered for her.

Playtime!

 Sometimes I wonder if there are ghosts in her room because she will stare up at the corner area of the ceiling for a while. Actually, it's probably all of the angels watching over her! :) When she isn't looking at the ceiling, she likes to watch her monitors. I let her know when the numbers are good so she can relax. We wonder if one day she will be a NICU nurse or doctor because of how much she watches the monitors. Or maybe she just likes it because it's like watching TV?

  We don't really know why, but suddenly last Wednesday (Sept 20th) Emma had a lot of episodes, when normally she would only have one or two a day. That day she had seven just between 8:30am and 6:30pm, and three more during night shift. The nurse was concerned about it on Friday night and suggested that we come up with a plan "in case she doesn't make it". No thank you!! I cried and prayed a lot that night, and it seemed to help because since Saturday Emma has been doing better and back to almost not having any episodes, or when she does they aren't too serious. Michael once asked if her episodes could cause brain damage, so now I have to pray for that to not happen too! For those wondering, an episode starts when Emma gets aggravated about something. There are several things that could bother her including being too sweaty, not being comfortable in the way she is laying, being hungry, wanting her pacifier, if she has a dirty diaper, having a lot of gas, or teething!  Her oxygen level starts to drop and her color starts to change from pink to gray to purple. Often she starts crying (inaudibly) and will arch her back. Sometimes just putting her pacifier in makes her happy and her oxygen level (I call it her happiness level) will go back up between 96-100. If it gets between 76-82, we will give her a boost of oxygen, usually by 10% and that can help too. For the times it doesn't, she can turn dark purple and even pass out. I hate so much when that happens and I definitely cried the first few times I saw it, but now I have to stay strong and help get her out of it. When she wakes up again after getting manual breaths from the ventilator or being "bagged" (a long tube with a ball that we can squeeze is attached to her trach, which is like CPR for her), she often seems really out of it and will slowly turn pink. We hate when she has to be bagged because each time her vent is detached, even for 5 seconds, her lungs collapse. How scary! She is so brave.

  Anyway, the other best day- maybe her very best day ever- was yesterday. I got to hold her again for two hours. We stopped putting clothes on her just because of how sweaty she gets, especially if she gets crabby and starts moving her arms around a lot. She also nuzzled for the first time after rooting around (rubbing her face all over my chest like she was looking for the milk source). I told the nurse (Lori) that I wanted to try it, but hadn't been given permission since they think Emma often has her liquids go down her trachea rather than her esophagus which is why she has the G-tube to slowly push her milk or formula straight into her stomach. But Lori told me to try it and Dana, the physical therapist, thought it was the best idea ever.  Nuzzling is like breastfeeding without her really getting any milk. It's more for her to practice the action of breastfeeding.

 Michael swears that her eyes are blue (like his), but to me they really look like they are gray. Or at least 70% gray and 30% blue. Definitely gray-blue. In the picture below she is watching her monitors again. The monitor that is attached to her leads (the little sticky pads on her chest) and her probe (which is usually wrapped around her foot) keep track of her heart rate and oxygen level. She watches those often. I also look at the ventilator monitor to track her breaths. They are green lines and if there is a white line that goes up on the inhale, then Emma took that breath herself. If the line is fully green, then it means the vent gave her the breath because she took too long (more than 3 seconds) to do it herself.

 That eye kills me ^^ the one that goes crossed sometimes. Ha!  She currently weighs 6 pounds, 4 ounces and is 17 inches long. That is almost double her birth weight and 2 inches longer. They want her to grow longer more than they care about her weight since length will make the lungs grow bigger and stronger. They also believe her episodes are caused because she has tracheomalacia and bronchomilacia, which is the throat cartilage being too soft and floppy that it closes in on itself if she tries to inhale too much or hyperventilates. I'll keep praying that these episodes calm down so she is happy and we can bring her home mid-November at the latest.

  Michael and I are continuing to make time to spend together, even if it just consists of running errands, we like doing that together.  He told me a couple weeks ago that he wishes we had met sooner, which I was pleasantly surprised by because I know sometimes I can be extra dramatic and hard to handle. Yesterday (Sept 25th) was the 7th anniversary of when he asked me to marry him. I like when we talk and flirt about how we fell in love! :)