I am Adeline's Mom.
I said this phrase over and over again during the duration
of her hospital stay. It was my form of
introduction to each new nurse and doctor I met. They didn't care what my name was...all they
needed to know was that I was attached to Adeline. I was her spokesperson...providing the
required facts of her life: birth weight, age, allergy information, medication
information, ...are her immunizations up to date? etc.
I am Adeline's Mom.
It was a required statement before entering the NICU...I had
to introduce myself as Adeline's Mom, and the secretary would call back to get
permission to open the doors so I could go see my baby.
I am Adeline's Mom.
I hadn't said her name much in her 3 weeks of life, but
after saying it millions of times over the course of her fourth week, I am
convinced we chose the right name for her and love it.
I am Adeline's Mom.
In this simple statement repeated over and over again, I
reaffirmed my love and attachment to her.
I was going to stay by her side as often as I could and give her my
support as she fought hard to get well.
As a Mother, I cared for her so deeply and knew her better than any
nurse or doctor could. I provided
insight into how I felt she was acting and the nurses would listen and
encourage my participation at doctor "rounds." My "motherly
intuition" as they phrased it, was respected and a piece of the puzzle as
they determined each day what needed to be done in her treatment to make her
the most comfortable. I was lucky that I
was able to be by her side - and continually felt blessed that Jeff was home
and able to watch the girls.
It was quite the experience watching my newborn baby be so
sick in her first weeks of life...and here is my version of it, as her mother.
Brielle and Rosalyn were sick with a bad virus earlier in
the month. It was a doosy - remember
Rosalyn's seizure and fever? Brielle got just as sick and we had some wild
nights up with her. When I was sitting
in the ER when Rosalyn had her seizure and was so sick...I prayed hard that my
2 week old baby at my side wouldn't catch her germs. I sanitized and we had bottles of sanitizer
on our hands. But, (as the nurses reassured me later), Adeline was doomed to
get sick and nothing could have prevented it.
Viruses are obnoxious hosts, and will intrude on anyone without caring
the circumstances.
And so, a week after Rosalyn's seizure, when I noticed that
Adeline had a runny nose...I got very worried.
Brielle and Rosalyn were recovering. They were still coughing, but otherwise on
the mend. I could turn my attention on
my new little baby...and attention is what she needed. I started suctioning her nose every few hours
and spraying saline spray to help clear her nose so she could breathe. This went on for about three days. I was up hourly at night to keep her nose
clear when she was so stuffed up. So
already going in to this experience, I was exhausted.
On Tuesday, February 23rd, she was still sick. But I wasn't overly concerned since she just
seemed stuffed up and had a wet cough for two days. She didn't have a
fever...and I figured since she was coughing it was the tail-end of the
virus. But by the afternoon, she had
red, glassy eyes and a pale complexion.
She didn't feel well, and didn't nurse well that day. I prayed that afternoon that I would know how
to best make her comfortable and that she could get better quick.
That evening, my Dad came around 7:00pm for a visit. He was
going to the airport the next morning at 4:45am, so he was going to stay with
us. He was holding Adeline and we had a
fun visit.
I took her later so he could
play with the girls, and all of the sudden, Adeline threw up. She never spits up, so this was quite
startling to me. She lost all of her
milk from the day it seemed. I got her
undressed to get her some new clothes and noticed that she was "sucking in
her lungs." I don't know a better way to describe it, except the medical
term - retractions. I had remembered that this was a red flag of a problem.
Combined with her throwing up, I decided to call her pediatrician's office and
talk to the nurse on call.
(Side-note: I saw many tender mercies throughout this whole
experience. One that comes to mind is
the fact that I noticed her lung retractions and was able to act quickly. When we were in the ER with Rosalyn, I had
asked the nurse before we were discharged about what I should watch for in my
newborn if she got sick too. The nurse
specifically mentioned a fever and retractions - sucking in her lungs. I took mental note of that, and that is what
prompted me to act quickly when I saw it. Coincidence? I think not.)
By now it was about 8:30pm.
The nurse called me back and I told her Adeline's symptoms: Glassy eyes,
threw up, lung retractions, head bobbing, nose flaring, pale, stuffed up and
coughing. She advised me to take her to the ER immediately. That was surprising to me! I was thinking she
would say, "bring her into our office tomorrow." I hung up and told
Jeff and we scrambled to get the girls in bed. It was wonderful that my Dad was
there and after giving her a quick blessing, we whisked off to the ER - for the
second time in 2 weeks.
By this point, Jeff and I were concerned....but she didn't
look to be in any major distress and we assumed they would give her something
to make her feel better and send us home.
She wasn't gasping for breath or otherwise appearing very ill. We got to the ER and when the nurses saw her,
they put oxygen in her nose as a precaution. She didn't improve. We waited for what felt like a long time...
and they finally gave her a vapor mist that was supposed to help open up the
airways. But her oxygen level didn't
change, and she didn't look any better than before.
It was decided that she needed to be transferred to Seattle
Children's Hospital. Because she was
hooked up to oxygen, she needed to go by ambulance. We decided to have Jeff drive back home and I
would go with Adeline in the ambulance. We
both figured at this point she would be monitored and sent home...and Jeff
would come get me before my Dad had to leave for the airport.
It was my first time in an ambulance. They strapped me to a gurney and I held
Adeline in my arms.
It was a bumpy ride and I couldn't figure out where we
ended up. I'd never been to Seattle
Children's and I assumed it was downtown.
The next day I looked it up and realized I was north of downtown---a
pretty far distance from home when you factor in Seattle traffic. This was another reason why I stayed at the
hospital every day instead of going back home.
We got a room in the Emergency Room and there was a flurry
of nurses and doctors all around Adeline to get her stable and
comfortable. They did all sorts of
evaluations and I again repeated her vital medical information and
history...little did I know this would be repeated over and over again as each
new team of doctors came in.
She continued to cough and need suction. Her oxygen levels were not great and she was
having retractions near her lungs and neck. She was working very hard to
breathe and it was using up all her energy.
She was uncomfortable, so in a quiet moment I tried to nurse her. She hardly nursed at all - little did I know
that would be the last time for almost a week that I'd be able to hold and
nurse her well.
And now, the narrative can be picked up in my texts to Jeff. I was always sending him updates, so it is easiest to just type what I wrote him and follow the events in chronological order. Here are some of the texts. The bold words are my additional commentary.
12:33am - She just got this major suction treatment. It made me cry.
But she's doing good. They put this tube down her nose and
throat and sucked everything...she had this pitiful, raspy scream and it was
horrible.
2:40am - She's not breathing too great, still working really
hard. They are starting her on a new treatment. It's called Hyperflow something. It is a humid compressed oxygen that will
help her open up her lungs to breathe.
The respiratory specialist recommended it, and the two doctors came in
and immediately said she needed it just by looking at her when they walked in
the room. The downside is she can't feed
while on it because she might aspirate to her lungs since the flow is so
strong. So I can't nurse her and they
will need to give her an IV. Poor little
thing!!!
3:01am - They started the flow and she hated it. But now she's gotten used to it. So just waiting. I am still in the same room in the Emergency
department. ..I'm so exhausted but there's no where comfortable to sleep or
sit.
She was admitted to the NICU - paperwork stated she was "critically ill" with "respiratory failure". I'm glad I didn't see that till a few days later.
She was admitted to the NICU - paperwork stated she was "critically ill" with "respiratory failure". I'm glad I didn't see that till a few days later.
5:30am - Moved up to the NICU.
She is diagnosed with Rhino Bronchilitis and RSV. Basically two types of colds. Newborns have a real hard time with RSV. They will keep her here till she is
better. Could be a couple of days. She's comfy on the breathing treatment now -
handling it well. Still a very sick baby
though.
When they told me at 6am that I could have a "sleep room", I about cried
for joy. I was so tired, and the idea of
sleeping in a chair in a hospital room wasn't appealing. The room was narrow and windowless. There were bathrooms with showers and towels
around the corner, and a laundry room where I did laundry twice. It was so nice to be able to have clean
clothes and shower every day. The Family Resources
Center
Don't be deceived. The bed was plastic and not the most comfortable. But I was grateful for anything!
Inside her room
WEDNESDAY
When I came back to the room, Adeline's nurse was getting her
vitals. I stood at Adeline's side while
she did everything. She then had to do a
deep suction on her. It was so miserable
seeing her go through that every time.
Adeline was all swaddled up so she wouldn't move during the
procedure. But Adeline twisted and
lurched up off the bed in pain. As the nurse finished the procedure, something
started beeping and the nurse looked startled.
She quickly unwrapped Adeline, and to both of our horror there was blood
squirting from her little arm. Adeline
had pulled out her IV and since it was a live vein, there was blood everywhere. The nurse quickly took care of her while I
tried to soothe Adeline. It was a
disturbing sight. She got her all
cleaned up and wrapped up again. Since
the IV was already out, and they were thinking of doing a feeding tube anyway,
the nurse didn't immediately put the IV back in.
10:10pm - She told me Adeline is the calmest baby with RSV that she's ever treated. She said most babies with RSV are cranky and crying because they are so miserable. But A is so calm and mild, just dealing with the treatments as they come.
She has a hard time though with some of the things they have
to do. The intense suctioning of her
nose and throat make her scream this hoarse scream. It's horrible for me to endure. I wipe tears from her eyes when it is all
done. And myself too. :(
THURSDAY
11:09am - Ok, here is what the team of doctors said...they
are keeping her in the NICU for monitoring at least another 24 hours. They decide that on a daily basis. She will move down to the normal floor after
that if she's improving. They think she
hasn't hit the "tipping point of healing" yet. She's still in the middle of her sickness -
feeling a lot worse today.
She's hungry a lot and crying for food so they are going to
give her more in her feeding tube. Yay!
I've been telling them she's hungry.
They have to follow procedures.
My brother Jeff & wife Kate came up for the morning to watch the girls so Jeff could come be with me in the hospital. It was wonderful to have him there and to see what I had been describing. Jeff and Kate came to visit later that evening, and we had a wonderful time chatting together. I needed the support.
3:11pm - Yikes. Just
got back to Adeline and they put her flow up to 7 cause she wasn't breathing
well. She's been at a 4 ever since she
got to the hospital. 7 is the highest
they go. She's sleeping and looks
comfortable now. But the nurse said she
was working hard. :(
5:37pm - The doctor just told me they will most likely keep
her here in the NICU through the weekend.
Whatever she needs, but long for me.
The doctor was saying she's had a rough day.
10:30pm - I'm sitting in my room crying.
If I would have known we would be in the hospital almost one week later
by that point, I would have cried a lot harder than I already was!
That was one thing that made things difficult...I had no idea how long
Adeline would need to be in the hospital.
I was unable to plan, and it was unnerving for me.
FRIDAY
3:44am - I'm up pumping.
When I walked into the room, I went over and looked at her falling
asleep. I didn't touch her. She gave me this little half smile. :) It
made my night. It's like she knew I was
in the room. Or she had gas. ha ha.
SATURDAY
3:46am - It took a while, but I made enough milk this time.
Yay!!
The nurse said she's been fussy. Maybe needing more food than they are giving
her through the feeding tube. This is
what makes me sad...that she's hungry, but can only be given what the doctor
orders and on a three hour basis. So if
she's hungry, she has to wait it out and babies don't understand patience!
She also said she dipped her pacifier in the milk and put it
in her mouth. The look on her face was
priceless. She misses getting milk by
mouth and tasting it I'm sure! Her throat must be so dry not drinking and
coughing so much. She can't drink anything while on such a high flow that she's
on.
Jeff came and brought the girls in the afternoon. Jeff picked me up and we drove to a park he
had found on a map that was near the hospital.
It was so good for my soul to get out and get some fresh air and just
play with the girls. They were so
excited to run and play at a new park.
It was a beautiful, sunny day and there were lots of children playing at
the park. I couldn't hide my tears...I
was so emotional looking at all these healthy children playing when I just left
a children's hospital with so many sick children inside. I missed seeing my girls every day and to
play with them again brought tears to my eyes.
It was an emotional park experience.
We then went to get some pizza at a pizza place around the corner. We got a little extra so that I could take
some leftovers for meals. It was really
helpful to have some yummy food.
The girls got some wonderful bonding time with their daddy throughout this experience.
SUNDAY
6:41am - They brought her down to a 5 in the night! Yay!!
10:30am - Went to rounds this morning.... they were very
positive and optimistic that she's turned the corner. It was great to hear.
She is doing great on 5, so they want to move her to 4. Just waiting for the Respiratory Specialist
to get up to do it.
1:11pm - Just got the sacrament. Met with two wonderful men that were so kind
and helpful. We went to a closed room on
the floor and it was great to get the sacrament. They do this all the time and had a travel
sacrament kit all prepared.
They brought me a bag of goodies and toiletries. I'm crying at the kindness in my time of
need. Wow, I can't believe so many
people have been so willing to help, friends, family and strangers! It's
amazing.
4:33pm - Her oxygen is down now so we may not be ready to go
down. The nurse came in without a gown
on and things are beeping. So that's not
a great sign. She's fine, just lower
numbers which makes me nervous.
My Dad came back into town after a work trip and drove up for a visit. It was great to have him there. My Mom was sick in bed with a terrible cold! Poor Mom was so sad she couldn't be there.
I texted two friends, Charity & Natalie and they came up Sunday evening for a visit. It was a wondeful, needed break from all the worrying.
I texted two friends, Charity & Natalie and they came up Sunday evening for a visit. It was a wondeful, needed break from all the worrying.
MONDAY
9:00am - She's definitely headed towards recovery. I've just been surprised at how sick she has
been through all this. I guess I had no
idea it was so bad because the nurses treat her like a routine patient. But terms like "critically ill" and
"respiratory failure" have been on her chart. I guess that makes sense considering she's
been in the NICU a week!
11:17am - Just got out of rounds. They said she's doing great! Making great
progress. They want to transfer her down
to the pediatric unit. Yay, out of the
NICU! They will then wean her down to a 2, and then I am able to nurse
her. They will monitor her for another
day or two. They don't want to discharge
too fast in case her little body can't handle it.
They switched out her NICU bed for a crib with colorful bedding that we got to take home since someone donated it. What a sweet gesture.
And then she was moved downstairs to the regular hospital room. It was very spacious and in the back had a little sofa bed that I slept on for the rest of the stay.
And then she was moved downstairs to the regular hospital room. It was very spacious and in the back had a little sofa bed that I slept on for the rest of the stay.
That night I was holding Adeline in the rocking chair before going to bed. She sneezed a few times quite violently and
her feeding tube started to come out.
She was covered in mucus on her nose and I tried to wipe it away from
her canula. But it just made it worse and she sneezed again, and the feeding
tube was making her gag and choke. I
pushed the nurse call button and started to panic. I ended up pulling out the feeding tube
myself since she was gagging so hard. It
was a traumatizing experience. A nurse
came a few minutes later to check on me and said she would call my nurse to
come in and replace the tube. So I was
holding Adeline in my arms with this tube at her side and just such a
mess. Ten minutes
later, the nurse came and put the tube back in...that was miserable for poor
Adeline.
As I held Adeline, I noticed that she was so weak. She could barely hold her head up and seemed
to have lost some muscle tone laying down for a week. I cried at seeing her in this weakened
state.
TUESDAY
3:56am - Oh so tired.
I've been up multiple times an hour.
She's agitated and has lots of suctioning and muscus.
That morning she was doing well with her oxygen levels and they took off the tubes completely. She continued to do well and so they gave me permission to nurse her from now on. I had to weigh her before and after each feeding, and they would weigh her diapers to make sure she was getting the milk she needed.
3:50pm - I just finished feeding her! It went great! Picked
up right where we left off. The look on
her face was priceless. :)
I gave Adeline a bath for the first time since she was admitted to the
hospital. They brought in this tub on a
cart and I filled it in the shower and let her soak in the tub for a
while. It was fun for me and relaxing to
get her cleaned.
WEDNESDAY
6:50am - Long night. She was up needing to be suctioned and just
generally uncomfortable
10:12am - I've been wondering if she is ready to
go home. She still looks sick and
pale. But I know they won't discharge
her if they feel she isn't ready.
12:24pm - Just talked to the doctors and they
want to discharge her!! yay!! They want to watch her until 4pm and make sure
she is feeding well.
I talked to the doctors about my concerns that she still looked
sick. They said she would still be pale
for about a week as her body replaces her white blood cells. She's still sick,
but not sick enough to be hospitalized at this point. She can breathe room air and I can suction
her well with a new mouth suction that they gave me. They told me that she would probably get sick
again...it's just this time of year, made worse with two toddler sisters. But
hopefully she wouldn't get sick enough that she would need to be brought
back.
Goodbye, Seattle Children's Hospital! It was a great hospital with wonderful staff...but I hope to never have to return. :)
It was great going home for the first time in 8 days and being all together as a family.
It was great going home for the first time in 8 days and being all together as a family.
The
only problem was that Adeline was completely thrown off from the hospital and
getting woken up all the time. She was up
most of the night that first night home...and several nights after that. Now, weeks later she is just barely
getting back to where she was when she was 3 weeks old - sleeping in 4 hour
stretches. I felt like I had a week old
newborn again who wanted to nurse around the clock and wouldn't sleep at night!
It was worse than when she was born. But
we endured, and thank goodness Jeff had another two weeks left of paternity
leave so that we could catch up on things.
But how grateful I am for the tender mercies and blessings that made a
hard experience that much easier. And
grateful for the wonderful doctors and nurses that were so compassionate and
caring for her. And especially for Jeff
who held down the fort...keeping the girls 24/7 and not complaining.
I am happy to report that she is happy and healthy now, and we are even more grateful for modern medicine than we were before this experience.
I am happy to report that she is happy and healthy now, and we are even more grateful for modern medicine than we were before this experience.
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