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! :)
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