We are
currently FIVE DAYS away from finally bringing Emma home!! I have been waiting
so long (over 10 months) to be able to tell everyone that. We had a really good
meeting last Monday, April 16th, with 17 of Emma’s doctors, nurses
and everyone involved in her care including the pharmacist who is in charge of
weaning the rest of her meds, and the dietician who is in charge of her formula
and nutrient needs, as well as a call on speaker phone with the doctor who will
be her pediatrician. When Doctor Lipman said in his British accent, “We will
plan to get Emma home in two weeks,” my eyes teared up. I have kept saying that
Emma’s Homecoming will be the very best day of our life --so far. We even have
a graduation ceremony planned for her. We got her a pretty black dress (in
place of an oversized gown) and Michael already made the cap and today I made
the tiny diploma.
A lot
has happened recently. On Easter (April 1st) we were able to take
Emma outside for the first time ever. She had only been outside when
transitioning from ambulance to medical jet, to and from Michigan, but she was
in the cavatron pod, unable to feel the breeze on her face. She liked being
outside and began smiling the second we walked through the doors. My cousin
bought baby sunglasses for Emma last year and she finally got to wear them! She
didn’t like the sun so much when it came out from behind the clouds and she got
really sweaty, but did very well in the shade.
On April
2nd Dr. Lipman made the call to get Emma’s discharge started and
told Home Health to get set up by the end of the month!! During the meeting Dr.
Lipman thought all of her ventilator equipment and all the supplies she will
need (there are a LOT) would get delivered on April 30th, so he said
she could come home on May 1st. But the next day, the company called
and said they could deliver everything and explain how to use all of the
equipment tomorrow! So the Nurse Practitioner told us that Emma is back on the
Homecoming schedule for April 30th!!
On April
10th Emma got a CT scan done to check the size of the three fistulas
in her trachea wall. They had several people look at them and everyone
confirmed that the fistulas in her
windpipe are healed!! They called to tell Dr. Green in Michigan the
wonderful news, but he still requests that one more bronchoscopy be done before
she comes home to make sure that the fistulas are really, really healed. He said we can bring Emma home either way, but that
lets him know if she needs to stay on a certain antibiotic (Augmentin) longer. However,
the ENT doctor (Ear Nose and Throat) would prefer the bronch be done
out-patient. So I’m not sure if it will be done next week or at the end of May?
She does have an MRI scheduled for tonight or tomorrow night, which is mainly
to check for any brain damage due to the 9-minute cardiac arrest she had on
December 11th due to her trach being clogged. But to us she seems
perfectly fine, aside from understandable developmental delays. Last night she
was the most “hyper” I have seen. She was laughing a lot and kicking her legs
so fast. We are all very excited for her to come home!!
 |
| When the Mommy is in denial about the Baby growing up and not fitting into Newborn clothes anymore! At 10 months old, 3-6 month clothes fit her the best. ;) |
Wednesday,
April 11th Michael spent the whole day at the hospital, from 7am to
9pm. I had an eye appointment that morning, so I came in at Noon, but also
stayed until 9pm. Around 12:30 we met Deborah who is the Home Health manager.
She was there to see Emma and get to know us and our personalities. That night
we took Emma on her first stroller ride outside at night! The next day Deborah came to our house to see how the
place is arranged, to check if Emma had her own room, and make sure we had safe
living conditions. She told us that they used to do the home checks about a
week after the baby got home, but then found people living in terrible
conditions, without electricity (while the baby had a ventilator!) or a ton of
bugs and mosquitoes or it was a one bedroom apartment with nowhere for the
nurse to work. That was the only thing she suggested for us: to get a small
table and chair for the nurse to be able to work in Emma’s room at night. (I
always picture us keeping Emma in the living room during the day.) We had an
extra chair in our bedroom already, and ordered a laptop desk with wheels from
Amazon. Deborah loved our house and they way Michael has decorated it.
So Monday
of last week was the big meeting, then at 5pm we got another room set up for
our “hotel” sleepover! I say hotel because it was a room with a bathroom
attached, but it was still inside of the NICU, not too far from where her
regular room is. Aside from us not getting as much sleep, I think it went very
well. I only had one issue with Emma desatting, but after she passed the gas
and I changed her diaper, she was content again. I left for a couple hours to
go home and eat and take our dog out, then Michael and I gave Emma her bath and
did trach care. The nurse only came in to hand us her medicines and bring more
formula every 3-4 hours. Michael said he woke up at 2am and played with Emma
since she was awake in her crib, but I slept through that. At 4:15am I woke up
because I heard her “talking”. She was just playing with her hands and looking
at her new Moana doll, happy as could be! I changed her diaper and the nurse
came in right at that time. I figured she was watching me because I was half
asleep. I did everything right, but maybe a little slower than usual. Then I
went back to sleep for another four hours. I like how we know what each alarm
sound means. A few times I heard a soft “bing” noise several times which means
the pulse oxymeter wasn’t picking up on her foot. That happens a lot after a
bath when her foot is a little colder or if she is really happy & kicking
her legs around, so I slept through that. If her heart rate was dropping for a
bad reason like desatting, then I definitely wake up for that and check on her.
Earlier in the evening it kept alarming once every few minutes because she was
sleeping so hard that her heart rate was dropping below 80 for a beat or two.
Michael and I definitely took real naps back at home later on Tuesday.
The
“hotel stay” lasted about 17 hours, and I asked Michael if he wanted to do it
again a few days later, but he reminded me that the whole point of it is to
make sure that we can handle everything on our own with our equipment. It was a fun experience, but I joked that Emma
was making it too easy on us by being sleep the first three hours! Around
2:30pm that Tuesday we got back to the hospital and the Speech Therapist,
Michelle, was working with Emma on “talking” more with the Passy Muir valve in.
Then she tried her first baby food ever- Organic bananas! In total she “ate”
0.7ml of bananas, but to me it seemed more like the tiny spoonfuls simply got
absorbed into her saliva? Emma seemed confused and unsure about the experience,
but Michelle says they will try sweet potatoes next. After that we changed her
into a cute pink bathing suit for Beach Day! The occupational therapist came up
with that idea so Emma could play with sand and in a baby pool. Emma is
definitely getting stronger and I really had to hold her arm down when she
instantly tried to put the sandy hand back in her mouth.
She has
recently been getting her hearing tested and I think she will have one more eye
exam in the next ten days. We are working and praying about getting Emma’s
special formula cost covered. She has been on EleCare since December, but our
insurance won’t cover it. Michael looked up that one can is $40 and lasts 3 days,
equaling $400 per month! Last Wednesday they began transitioning her back to
Alimentum formula which she was on before EleCare in hopes that it does not
bother her tummy or intestines, plus it is about $100/month less. However,
during the five days she was on Alimentum her poops were watery and she was
receiving higher Watt scores, meaning she showed more agitation, so she is back
on EleCare. Michael currently has an interview set up with WIC to see if they
will cover it. We also found out today that my insurance will only cover 60
days of Home Health (full time nursing), so we are prepared to be “on our own”
by June 29th! It is
good though because we didn’t really like the idea of having a nurse at our
house with us 24/7, but 60 days will be a good amount of time to learn
everything else we need more practice with -- on top of everything we have
learned since she was born in June!
FIVE
MORE DAYS, PEOPLE!!! J J J Also Emma has 10 teeth now and her most current weight from
last night is 11 pounds, 8 ounces (she lost about ½ pound due to the Alimentum issue).
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