May 14
As we had mentioned in a previous post Kelli had been really
dizzy and had started itching due to an allergic reaction to one of the pain
killers they had put her on. Through the night the doctors and nurses finally
had determined which pain killer was causing the itching and they took her off
this medication.
Midday on Tuesday Kelli was able to get up and walk around.
She was still in pain and very sore from the previous day activities, none of
which included Disney Land, beaches, sunsets, cartwheels, or ponies. Kelli
finally started ordering real food from the hospital menu! Surprisingly the
hospital food was really good. Kelli might just be saying this because she hasn't eaten anything in 36 hours other than saltines, Jell-O, and water.
Once Kelli was fed and drugged, we decided to take her over
to the NICU for the first time. She was a little too excited and kept
forgetting that she had just undergone major surgery less than a day ago. I had
to keep reminding her to sit still and be patient. The nurse brought us the wheel chair and we
covered Kelli up with a sheet and a couple of hospital gowns, she looked like a
cute little ole’ lady (no offense Grandma). As previously explained the route
from one hospital to the other is all in doors and typically takes me 8-10
minutes to get from one side to the other. With Kelli situated and ready to go
we set off for the NICU. I had to take it rather slow as she was still a little
motion sick and every bump seemed like I was dealing her a death blow. I had to
realize that I wasn’t writing a performance piece for Car and Driver, and I
didn’t need to know how fast I could take the corners or how well the chair
handled. So, instead we had a nice LONG trip to the NICU so Kelli could finally
see her baby girl.
Mine and Kelli’s main purpose for visiting our baby was to
name her. We wanted to see her and “study” her to see what name sounded right. While
Kelli was in the recovery room, the prior day, she turned to me (while throwing
up) and said what about Hannah? I told Kelli no, and we would talk about it
tomorrow when we saw her. Once in the NICU, we pretty much knew instantly that
she wasn’t a Mckynlee, like what had originally thought, or our second choice,
Brooklyn. She was definitely a Hannah. I initially did not like that name very
much and had abandoned the name about 4 months into the pregnancy, but it was
clear while we were looking at her that her name was to be Hannah Marie
Bennett. Some of you might be wondering why that name. Hannah is a random name that
we liked (and now absolutely love!). Marie is my mother’s middle name and
Bennett is my last name, which your kids typically take if your kids want an
allowance.
Our nursed explained to us how Hannah had done that evening.
She had a number of apneic episodes where they would have to remind her when to
breathe. In our previous blog post we mentioned this as well. The heart
medication they have her on sometimes makes her forget to breathe. So they come
over and coax her along. They haven’t had any major concern about this, but it
is something they are trying to resolve before surgery. Other than that she
held rather steady throughout the night.
On a daily basis a group of doctors, nurses, neonatologists,
cardiologists, medical students, residents, and what seems like anyone else
they can find to tag along, do their rounds in NICU. This typically happens
around 10 AM. This group of 8-10 individuals crowd around the infants bed while
someone reads off of her chart a summary of the previous day’s events. There is
a lot of medical jargon that they throw around, but if you ask them what in the
heck they are talking about they are very good about dumbing it down for a
minute or so. I have found this is best opportunity to ask questions and get a
quick and accurate response that is relevant to my baby. Google is great, but
sometimes it makes sweeping assumptions across wide groups. This is really a
cool meeting and makes me feel like they truly care about us. They know who we
are and really want to ensure we know what is going on and have all of our
questions answered. I think I am starting to understand why this hospital is in
the top 1% in the Nation.
We hung out for a few more minutes, but had to get back
because Kelli’s meds were wearing off and my parents were bring down bring
brother Jack. We made the LONG trip back with Kelli, and 5 minutes later I went
down to the Lobby to meet my parents and my boy. I hope that all parents will
have the opportunity to experience what I experienced when Jack saw me. I heard
him from across the room, “Daddy!!! Daddy!! Daddy!!! Daddy!! Daddy!!! Daddy!! Daddy!!!
Daddy!! Daddy!!! Daddy!!” He is yelling this as he runs across the room while
the entire lobby is watching the scene unfold. It was like something you would
see in a movie but a million times better because it was happening to me. It is
moments like this that I am thankful to know that families can be together
forever and I will get to hear him say that for all eternity. Check out this
awesome video if you want to understand why families are so awesome. Isn’t life
amazing! Aren’t Families the Best!
Once upstairs Jack finally got to see his mommy. Kelli: Jack walked in the door
grinning from ear to ear saying my name.
He ran over to the bed and said “hold you!?” He then looked at my hand (where my IV was)
and said “OH NO, mommy owie?” He then
very gingerly lifted my hand into his and kissed my “owie all better”. What a sweet little boy I have. He kept asking to sit on the bed with me;
unfortunately he wanted to jump on the bed and on mommy. So we decided it was time to head over to see
baby Hannah.
Ethan: We left Kelli in her room because it is very exhausting
for her to make one trip a day, let alone two.
I took my parents and Jack to visit baby Hannah. Only two people are allowed by the bedside at
a time, so Dad and I went back first. We stayed back there for 5 minutes or so.
We gave her a Priesthood Blessing and went on our way. Mom stayed a little
longer and took a lot more pictures. We finally had some time to look at her
hair which unfortunately is not red, but like her Daddy’s, a nice beautiful
brown color. Jack wasn’t able to visit his little sister because of age restrictions.
They won’t let anyone under the age of 3 back into the NICU for a number of
reasons I am sure. There are way too many button back there as well as little
kids seem to be the walking plague. Every time our kids goes to play group,
church, or the YMCA he comes homes with some random cough, rash, or some
stomach virus that quickly spreads to every family in the entire city.
Nana holding baby Hannah's hand
A peek of her hair
After visiting Hannah, I took my parents down to the Ronald
McDonald House to show them how I was planning on surviving for the next month.
They had a local church group that had brought in a delicious baked potato bar.
We sat out in the courtyard on a perfect day and enjoyed the sunshine and the
good food. We took a little tour of the place while mom took pictures of
everything.
We came back to let my family say their goodbyes. My dad was
flying out of Indianapolis back to Birmingham that afternoon and my mom was
heading back to Fort Wayne with Jack. They left early afternoon and Kelli and I
crashed the rest of the day. We hadn’t slept the prior night and we were
totally drained both emotionally and mentally from all that had happened.
I went back over to Riley’s later that evening to eat dinner
and see my baby girl again. I spent a couple hours over there learning how to
take her temperature and clean her mouth out because of her feeding tube. I was
able to ask a ton of questions about how the NICU functions and what we could
expect over the coming weeks. Kelli called around 7 that night to tell me that
the Ronald McDonald House outside of the hospital had called her to tell us
that they had an opening and wondered if we wanted it. We jumped on the
opportunity and ran over there to secure our room. This house, off the hospital
campus, is only 2 blocks away from the entrance to the hospital. This is a very
large house with close to 50 rooms and two very large kitchens. They provide a
comfortable place to sleep, linens, food, laundry, and pretty much anything
else you could think of for a suggested donation of $15 a day. Pretty amazing.
Kelli: Originally we told the Ronald McDonald house we wouldn’t
need a room until the following night.
My nurse came running down the hall to my room and told me that the
Ronald McDonald house just called and they were transferring the call up to my
room. She told me that I should accept
the room at Ron’s even though we don’t technically need it just yet. There is no guarantee that we would get a
room the following night and she wanted us to secure ourselves a spot. I would have told the lady on the phone that
we didn’t need it yet if I had not gotten the advice from my nurse, Darla. We found out later that the Ronald McDonald
house filled 8 rooms that night, and thanks to Darla we were one of them. I had the impression that if we would have
said no, we wouldn’t have gotten a room.
So, thank you Darla for saving us from my stupidity and having to get a
hotel.
Ethan: I went back after securing our spot at the Ronald
McDonald house to check on Kelli and see Hannah one last time tonight. I then went off to sleep on a real bed. Kelli
and I decided I should sleep at Ron’s house tonight so that I could get a good
night sleep. The previous night I had
slept on the fold out chair in the hospital room. Needless to say my back and I
had some pointed conversations the following day. I finally settled down to
sleep around midnight and don’t think I moved an inch all night.
May 15
We were able to go visit Hannah this morning. We showed up just in time to talk with the cardiology
team. All the medical jargon is beginning
to make sense. They talked about how she
still had trouble breathing last night, she had 6 apneic episodes and actually
had one while we were standing there with the cardiology team. One of the cardiologists was listening to her
heart when she stopped breathing. He tried
to coax her into breathing again but she wouldn’t respond. One of the other team members made the
suggestion to flick her toes, which he did and Hannah started breathing
again. She then promptly started
screaming at him. It was a little nerve
racking watching her apneic episode; it was the first one we actually
witnessed.
Ethan: It was a short visit because Kelli was in a lot of pain
and we needed to get her back to rest. I
was able to go back and visit Hannah later.
She had a stable and uneventful day, but it was a great daddy daughter
night. I stayed in the NICU for a few
hours and really felt like I was able to bond with my little princess.
Kelli had a really rough night. Her pain levels shot up to an 8 on a scale of
1-10; they hadn’t gone past a 4 the whole week.
We think she must have tried to do too much this week and she needed to
really take it easy. The nurse decided
to change one of her pain killers, which seemed to have an immediate
effect. Kelli was able to rest as long
as I stayed close, she asked me to sit at the foot of her bed while she fell
asleep. I decided to stay the night in
the hospital so I was close at hand if she needed me.
May 16
I have taking my blog back from my hubby :). He did a great job helping out, but I am
starting to feel better.
This morning was a pretty slow morning; we did a lot of
waiting around to be discharged from the hospital. We thought it would be best to wait to go
visit Hannah until after we were discharged.
We wanted to keep my physical activity to a minimum; however, being the
big klutz that I am, I tripped on a cord and fell while I was headed to the
bathroom. It was a pretty graceful fall,
if I do say so myself. However, it was
the most nerve racking falls. I caught
myself with my hands and knee, but I was sure I had messed something up. I don’t think I have ever seen Ethan move so
fast. He jumped up and rushed to help me
off the ground. He repeatedly asked “are
you alright?” followed by “are you sure?”
After the nurse closely examined everything, she said I was fine. What a relief. That’s the last thing we need
to deal with right now. Thankfully
everything was fine, just a little extra pain, and we were able to leave the
hospital around 4 in the afternoon.
We went straight to the NICU and found Hannah’s eyes open! It was the first time we had seen her open her eyes. It was hard to tell the color of her eyes in
the dim lighting of the NICU, but I think they are dark blue like her brother
and her daddy. As we were sitting there
talking to her, Hannah was trying so hard to stave off sleep. Her eyes kept rolling back in her head and
going cross eyed. She wanted to stay
awake because she heard mommy and daddy.
It was so fun to see that she recognizes our voices.
Peek a boo
They were able to remove her arterial line today, an IV
inserted into her umbilical cord. This is
used to monitor the blood pressure and to draw blood. This is a very sensitive line and one of the
reasons we weren’t allowed to hold her. The
nurse told us this had been removed, and then looked at me and asked if I wanted
to hold her. Grinning from ear to ear I nodded
my head. It was such an ordeal getting
her out of her bed. It is a very tedious process making sure none of her tubes
or IVs gets pulled out. It took Ethan,
me and the nurse to get Hannah and all her tubes out of her bed. The nurse told me not to move too much because
if her IVs. She is still getting life
sustaining medicine to keep her heart working through the IVs in her belly and
it wouldn’t be good if those came out.
I can’t even describe the emotions I felt as I held my
little angel in my arms. I had tears of joy
running down my face as I looked at this little miracle that Heavenly Father
had given to me. What a blessing it was
to be able to hold her, even though it was only for a short time.
It is so fun talking to all the nurses and hearing their
take on our daughter’s attitude. They all
say she is a sassy one. She is constantly
trying to pull her CPAP machine off her face.
Despite her sass all the nurses love her; they always comment on how
cute she is.
Hannah is now getting my breast milk through the feeding
tube. The tube goes in her mouth
straight into her stomach. She has
plenty of milk stored up because my milk came in today. They are starting her out slow and she is
getting 8 mL (.27 oz) every three hours.
They will slowly increase this as she learns to digest it.
As we are sitting with our baby girl Dr. John W. Brown came
up to talk with us. He is the doctor
that will be overseeing the surgery on Hannah.
It was so nice to meet the man that will be fixing our little girl. He told us he wanted to schedule her surgery
for Tuesday, May 21st. He told
us this surgery on a difficulty scale of 1-10 is a 7 or 8. He explained what
they were going to do and the risks of the procedure. He also stressed that
this is the only way that she has any chance of living. He said that they do
roughly 15-25 of these procedures (Norwood Procedure) each year. At the end of our conversation he said, “I
won’t withhold any information from you, she is your daughter and you have the
right to now.” He made sure we knew that he wasn’t going to sugar coat how the
surgery went and what he thought her outlook would be long term. He is an older
man and said that he would treat her as if she were one of his Grand Daughters.
When we got back to our room we looked him up on the
internet and read that he is in the top 1% for heart doctors across the nation.
Hannah is in good hands and her parents trust that her doctors will treat her
as if she were one their own.
That night both of us went back to the Ronald McDonald house
to sleep. It was wonderful to be out of a hospital bed and not get interrupted
every 3 hours. Technically I still get up to take pain medication and pump, but
I can be the one who determines when I will do that.
May 17
We went and saw Hannah this morning, it was a great morning
for me; my pain had decreased dramatically and the itching was completely gone.
Hannah was doing pretty well with the breast milk, she had
some residual in her tummy (this is normal for newborns) after a few hours so
they aren’t going to increase her feedings just yet. She was also off her CPAP machine. She is still on a vapotherm machine, which she likes so much better. It is two little prongs in her nose instead of the big bulky CPAP mask.
No more mask!
I took a pain killer while at the hospital in hopes that I could
stay with Hannah longer. However, I
started to feel very dizzy and nauseous so we had to leave and get me home to
bed. I took a 2 hour nap, but still didn’t
feel 100% afterwards. Shortly after I woke
up I got a phone call from one of Hannah’s nurses; my heart immediately jumped
into my chest for fear they were calling me to tell me something was
wrong. The nurse said “Hi is this Hannah’s
mom?” I answered with a worried, yes (heart jumped into my chest). “My name is Kelly; I am one of Hannah’s
nurses. Don’t worry; everything is fine,
just breathe.” It’s funny that the nurse
knew her phone call would cause me to react the way I did. She was calling to get consent on putting a
PIC line into Hannah. They want to do
this because this type of central access IV can be used for long periods of
time. The IV in her belly is usually
only good for a week. She explained all
of the risks and concerns, and I gave them my consent.
Ethan decided I shouldn't go back to the hospital to see
Hannah tonight so I could continue to recover.
I was very upset, but deep down I knew he was right. I need to take care of myself if I am going
to be able to take care of my baby.
Ethan left to go to the store to get a few essentials and I decided
to call the NICU and get an update on Hannah.
The nurse informed me that they were unsuccessful at getting the PIC
line in. Infants with HLHS typically
have smaller veins, making it very difficult to put it in without it blowing
the vein. The nurse said that Hannah was
very well behaved during the procedure which happens at her bedside. Her nurse fed her “sweeties” (sugar water)
while the nurse practitioner attempted to place the line. I quickly thanked the nurse and hung up the
phone because I was about to lose it big time.
I called Ethan sobbing and begged him to come home and get me so I could
go up to the hospital and be with my baby.
I felt so guilty that I couldn’t be there for her and comfort her. I thought she needed her mommy and was really
struggling to understand why I couldn’t be there for her. Thank goodness Ethan has his head on straight;
he talked me off of the ledge. He reminded
me of how much pain I am in and promised that he would take lots of pictures
for me while he was up there. He was
true to his word and brought me home some very cute pictures and a video!
SMILE!
I love reading about Hannah. She is adorable!! Kelli, I am so glad you are getting better. Praying hard for you and little Hannah.
ReplyDelete