ENT hold up

7/28/10

Well today we thought we were going to go home. We were so sure of it that we took a bunch of things home - should have known better! This morning they let us know that they wanted the Ear/Nose/Throat Doctor to check her since her strider (irritated trachea) seemed louder today. She did get checked out and it appears that one of her vocal chords is paralyzed, which could be a combination of the head trauma and the breathing tube. This may be something that clears up as the swelling goes down from being irritated or it could be permanent. Her speech will be fine and her other vocal chord will try to compensate. We won't know long term how this will affect her until she is one. What that means right now is that her little cry and coo's will sound kind of raspy.

We have a swallow study tomorrow as the above info could be part of the issue she is having with drinking from a bottle. We will just wait and see.

Other than that, we had a pretty good day with Josie. The girls (along with their cousins) were able to come visit with their sister. They loved it!

We continue to be patient and wait for God's right timing to take Josie home. He knows what needs to happen before we go home so that we as ready as possible.

Blessings to all-
Marc & Darcia

Back to work for Marc

7/26/10

Since it has been really quite quiet with Josie the last few days on Floor 7, I haven't posted much. We are very pleased and excited for all the good reports we are having about Josie. I was told at one point today that the doctors and nurses in their rounds are calling her a miracle baby. She sure is!!! We are truly blessed.

Today has turned out much more crazy than I anticipated. Marc was planning on going back to work today - he still did go, but he ended up going in later. Josie's CAT scan was moved to 9am (was at 5am), so when Marc got here to the hospital, he ended up waiting - hoping to talk with the neurosurgeon before he went to work. He left at 11:30 and of course the doctor came at noon. It was all good though and the CAT scan of Josie's head is looking good. YEAH!

From that meeting with the doctor, I ended up talking to so many other doctors, nurses, specialist and friends. Somewhere in there I was supposed to take a nap...it didn't happen. :) Everyone is coming to meet with us to prep us for going home.

Home...it's a wonderful, yet terrifying word. I am trying to turn my worries into trust in God as I hear these words. I truly believe we will be equipped by everyone here to handle the transition, but it will be quite the transition. For example, one of the discharge nurses is going to create a calendar for us with meds and dosage and other such information. Any help we can get...the better!

We were worried about Josie's neck having a kink in it because she likes to always look to her left side, but thankfully, PT (Physical Therapist) came today and let us know that she is only a little tweeked that way and promptly showed me techniques to get her to go the opposite way - and they work!!! Tried them already!

Lots of other information that I won't go into, but wanted to let you all know that Josie is doing well. We still covet your prayers as this next stage of life is going to be just as crazy, but in a different way.

We are thanking God for such a miraculous recovery that Josie is making. We couldn't have made it through without all of your prayers being lifted up on our behalf for our baby girl and our family.

Blessings,
Darcia

*By the way - big sisters are coming home tomorrow! Can't wait to see them - they've had a GREAT "vacation" with Uncle Josh and Aunt Tara and of course their cousins!

EEG - recheck

7/23/10
A little eventful morning - Josie had to have the EEG put back on for a spot
check, which meant putting 26 little electrodes on her head again and then
record it for 2 hours or so and then take those 26 little electrodes off again.
Then the nurse gave her head a bath (not a popular choice!). Poor kid - her
head has already had so much happen to it. She is still seizure free and down
to 2 anti-seizure meds.
The rest of the day was very calm and Marc and I had some really nice and long
cuddle time with her. So nice to be able to hold our baby again.
I (Darcia) am staying here at the hospital with her and now Marc will get some
good rest. I need to get there myself while Josie sleeps.
Blessings- Darcia

Daddy daughter bonding

7/22/10
Hello all. Well, we have reached the end of a long and eventful day. Darcia has
headed home for what will hopefully be a long, peaceful night of sleep, and
Josie and I are just hanging out here in the Butterworth PCCU. A little father
- daughter bonding time, if you will. She is currently sleeping in a crib, and
the only thing running into her is a feeding tube. Praise God! Yesterday the
breathing tube came out. Today, all sorts of stuff came out - the catheter, the
arterial line, the EEG electrodes, the constant pain killer drip. Tomorrow,
there's talk that her central line (IV under her collarbone) will be removed.
We've had a speech therapist here (to discuss her feeding abilities, not her
speech, that comes later), an occupational therapist to evaluate her arm and
hand movements, the neurologist, the neurosurgeon, and a host of other folks to
poke, prod, and assess her. So, it has been a very busy, but very good day.
Darcia and I got to hold Josie this evening, which made us both quite happy, since
it's been about a week since she's been held.
I guess that's pretty much the summary for the day. I feel like there should be
more, but that's enough, I suppose. We are excited for the progress over the
last couple of days, but are trying to remain cautious and keep in mind that we
have a long road ahead of us, with lots of appointments and tests, and another
major surgery (unless God chooses to resect the rest of this tumor in a
different way :) ) and the rehab that accompanies it. Thank you again for all
of your prayers, calls, cards, and all around support. Josie is in the hands of
our Creator, and we continue to pray for her continued healing and
rehabilitation.

No More Breathing Tube!

7/21/10
Josie has had a good day, which includes getting her breathing tube out! This
was a little bit unnerving to us because of how she reacted the last time, but
yet we wanted her to get off so that we could move to this next stage. We are
grateful for this good step. We still have a long way to go, but we are glad
for the "ups" in this journey.
As far as how Josie has responded, she has been awake a bit and looking around
- she moves all of her limbs well and likes stretching. I would like stretching
too if I had slept for 3 days. :)
Keep praying - God is answering and moving - we can see it!

Seizure update

7/20/10
Today was a fairly quiet day with
Josie again - which is a good thing. We needed some quiet and down time, it has
been such a rollercoaster until now. If you missed Marc's post on the
"wall", we have had some good news from the neurologist today. Josie
has not had any seizures since mid to late afternoon yesterday (Monday), which
means that they can start dropping and changing some of her medications to
start the process of finding the right combination. We are taking every little
"up" we can get at this point.
She did have some issues with a variable heart rate today, but the doctors and
nurses don't seem to be terribly concerned, they believe it may have something
to do with changing meds and just the nature of getting her stable.
Marc and I are going home again tonight - we debate all the time of what we
should do and finally decided that if we can get good rest and can call in to
check on her whenever we want, we are comfortable with leaving. It is very hard
to leave though, but we are only 10 minutes away if needed. She is in GREAT
hands (God's first and then the nurses and doctors).
We will keep you posted - Blessings to you all,
Marc & Darcia

Sweet Gift

7/19/10
Josie is resting very peacefully today and for that we are so grateful. She is
now on 4 different seizure meds, but they are doing that in order to stop the
seizures all together. Once that happens, they can start backing off on some of
the drugs and find the right combination for her - they really want to get her
off the seizure drug that sedates her so that she can wake up a bit more. Other
than that, she is doing quite well today - Marc and I have finally been able to
pull out some reading and paperwork that we have had in our bags since her
delivery.
On a sweet note, our friend and neighbor brought us a little gift today of a
tag blanket - which is super soft, beautiful and has her name embroidered on it
(plus she had it made in the colors of Josie's room at home - Pink and brown!).
As soon as Marc and I walked back into Josie's room, the nurse asked if we had
something soft that she could place under all the tubes and wires so they
didn't press on her belly so much. We immediately were able to give her the tag
blanket - it was perfect timing!
Blessings to you all - Marc & Darcia

Not So Quiet Josie Day...

7/18/10 Not So Quiet Josie Day...
Ok, so Josie is now having about 26 EEG electrodes attached to her head to
monitor her seizure activity. She'll also be on video. Josie has had quite a
first week! The doctors are saying that if anyone is entitled to have some
seizures, it would be Josie. She has had some tremendous trauma to her brain,
between the raquet ball size tumor and the surgery to remove part of it. So,
she is on some anti-seizure meds to control them as well. This will hopefully
keep her calm, which should help in the healing process as well.
We saw the "after" MRI photos this morning, and there appears to be
quite a difference. There's a bit more room in her head now, so that's good.
Her head circumference has gotten smaller as well. Hopefully, after a morning
of getting picked at, poked at, and fussed with, Josie will have a good
afternoon of rest and be able to work on recovering from her major surgery on
Friday.

7/18/10
Well, things have calmed down a bit since the last post. Josie now has a
breathing tube in again, to help regulate her breathing. She is on some
anti-seizure medication, hooked up to a continuous EEG to monitor any seizure
activity, and she's been somewhat sedated to help her remain calm. I think
right now there are about 42 different wires / hoses going into her or coming
out of her. Poor kiddo. This morning was a little rough for Darcia and me (I've
hijacked Darcia's account to post this). Seeing and hearing our little lady
upset, in discomfort, and struggling for breath was very disconcerting, as you
may imagine. We are feeling that the previous week is catching up to us, but
are really trying to maintain our rest and food intake, and I doing ok with
that. Thanks so much for all of your prayers, visits, notes, and visits. We lov
eyou all and really do appreciate and feel your support and prayers...

Quiet Josie Day...

7/17/10 Quiet Josie Day...
We have had a pretty quiet day today and for that we have been thankful.
Josie's breathing tube came out today without much problem and she has been
breathing on her own most of the day.
The evening however has been a little bit harder. Josie started having seizures
around 4pm today - she has clusters of them and then she will sleep for a
while. The doctors and nurses have told me several time tonight that this was
to be expected because her brain has gone through quite a trauma. They have
given her 2 anti-seizure meds and so far they are still not under control.
Watching her is quite painful to me. I can touch her and sing to her though
whenever she goes through a seizure. I am getting tired, but just don't want
her to go through these seizures by herself. The nurses and doctors are
watching her extremely close - which is reassuring to me.
For now, please pray that they can get these seizures under control and that
they are not harmful to her brain and the healing that it needs to be doing.
God is with us - we have felt him all along the way - He is the great healer
and He is the one in control of Josie's little life. With God - there is always
hope.

Post Surgery

7/16/10 Post Surgery
Josie is out of surgery. The day has been very rough all the way around. Once
Josie was taken to the OR, we walked down with her and it was very hard to see
her in pain, her pain med had worn off and she cried a lot and we could tell she
was hurting.
Once in the OR, the surgery started at 10:50am and finished somewhere around 4
or 4:30 (although time just meshed together, so we aren't completely sure).
The doctor came up and talked to us about the procedure and he even said that
Josie had a rough time of it in surgery. He was able to remove 50-75% of the
brain tumor, but due to excessive bleeding from the blood vessels around the
tumor, he had to close things up. The tumor has become more aggressive since
her biopsy and was putting lots of pressure on her head - which is why she was
in so much pain. Josie also had some heart issues during this time and they had
to move quickly, fortunately they did and she came out fine. She is back up in
her room recovering. She has tons of things hooked up to her and she is getting
transfusions of blood. A prayer request would be that she start making her own
blood (which she is doing) enough to keep things going well. Josie will have an
MRI tomorrow morning in order to see how much of the tumor is left. The doctor
will most likely do another surgery when she is a bit bigger (6-9 months) to
get the rest of the tumor, unless she needs one sooner - dependent on the
growth rate of the remaining tumor. For now, she is stable and actually looking
around and moving her limbs.
Here is a bit about what Josie has:
Desmoplastic Infantile Astrocytoma
Non-cancerous tumor (praise God!)
Rare form of tumor 3-5% of tumors in children and even lower percentage in
infants
We are tired tonight, so we will give more information at a later date - both
of us are having a hard time thinking.
Thank you for all your prayers - we needed them today and Josie needs continued
prayer.
Marc & Darcia

Respirator Update

7/15/10 Respirator Update
Marc and I were able to go home last night and get some better sleep, which is
much needed. We completely trust the doctors and nursing staff here at the
Pediatric Critical Care Center (DeVos Children's Hospital) and could rest with
this in mind.
We were able to meet with the Doctors and nurses this morning for their daily
updates and we met individually with Josie's Neurosurgeon. We hope to have a
plan of action sometime tomorrow if all goes well.
Josie was able to have her breathing tube removed this afternoon. It was a
little more nerve racking than anticipated and Josie experienced quite a bit of
pain, but she is breathing on her own and resting with some pain meds while I
write this update. She needs to have a good cough or cry to help things smooth
out in her breathing. Keep praying for this.
As for things to pray for, the doctor said that when the biopsy results come
back and when they do the next surgery, the best outcome would be that they
find that the tumor is growing from the outer area of her skull (not really
medical terms used here) rather then near the center of her brain. Everything
is waiting though for final results on her biopsy.
Thank you for praying! We are truly blessed by the support that we have been
receiving.

Post Biopsy

7/14/10 Post Biopsy

Praise God!! Josie came through the biopsy surgery incredibly well!!! She is sedated and on pain meds yet and will be for a while - she has a few more tests that she needs done in order to help the doctors in her prognosis and what the next steps will be for her journey. The biopsy was taken without much bleeding - which was the main cause for concern during this process. At this point, that was a positive during this process. The biopsy will now need to be processed and we will hopefully know more by the end of the week. At this point, we will take this as a good step for Josie.

God has heard our prayers and we are so humbled by how many of you are praying.

Marc and I decided on the name for Josie, mainly because we liked it. When I later looked up her name, it means:

Josie - God will give.

I am looking forward to seeing what God will give throughout this journey - he has already given so much by giving us such an incredible daughter.

Blessings for this evening. Darcia

Biopsy Update

7/14/10 Josie's first surgery day

We have been able to have lots of snuggle time with Josie today and lots of awake time with her. She is so incredibly precious! The original surgery (for her biopsy) scheduled for 12pm was bumped this morning to 2pm. They first started with a pre-op procedure that was done right in her PCCU room. That process went longer than expected, so we were only able to walk with Josie down to the OR, but at least we were able to see her. We are waiting to hear if the surgery has started, but once it does, it will last approximately 2 - 2 1/2 hours.

Marc and I are doing okay - we are a little more rested, which helps, but we go through rough times quite often.

Our other girls are being shuffled right now, but I think they are doing okay. It is going to be rough on everyone - especially the next few weeks.

Please keep praying for Josie - she is such a precious lamb of God.

Josie LeeAnne Black - July 13, 2010

July 13, 2010

This was Marc's first email to lots of you:

First of all, I would like to introduce to you all our third daughter, Josie LeeAnne Black. Josie came into the world on July 11, 2010 at 3.42 a.m. She weighed in at 7 lbs 12 oz, and is 19.5" long. The labor went quickly, and was preceded by a mad dash to the hospital. I've attached a photo or two of our beautiful baby girl for you see.

Now, to the second part of this note. It is with heavy heart that I write this next portion of this chapter in our lives. Josie came out healthy and strong, and passed her tests with flying colors. Sometime in the course of her being evaluated, someone noticed that the "soft spot" on her head (where the plates of the skull come together) was a little too large, or something like that. So, they ordered an ultra sound, just to check things out. Sometime around 4:00 pm (we've kind of lost track), our journey with Josie took a hard right turn. A doctor came into our room and informed us that the results of the ultra sound were not what they were expecting. Josie has a 6 - 7 cm tumor on her brain, which is causing the swelling in that soft spot on top of her head. She was trasferred to the Neo-Natal Unit in the DeVos Childrens' Hospital Floor here at the Butterworth Campus. Two floors down from us. She is scheduled to have an MRI tonight at 10 pm to gather more information about the tumor. At this point, we have very few details. A pediatric neurologist is meeting with us tomorrow, and I believe an oncologist (cancer dr. ) is getting involved as well. She now has an IV in her umbilical cord stub, as well as one in her foot. She has wires and monitors all over her.

The last two days have been rather long, but got even longer this afternoon. Our hearts are very heavy, and it hurts so terribly bad to see our little one like this, and knowing that she has this thing in her brain. We've been told that it has likely been present for quite some time, and does not likely pose any immediate emergency action. But, they are obviously taking it very seriously and trying to get some more details as soon as possible, so we might determine a proper course of action. The word "surgery" has been tossed out there frequently, but again, it's hard to say until the specialists take a look at the test results.

So, with all of that said, we would desperately covet your prayers as we wade through these deep waters. We desire that God is glorified through this. May we honor Him in our words, thoughts, and actions. We, as human beings, do not know or understand why these things happen, but our God, the Creator of the Universe, holds our little Josie in His hands. He knows the particulars, the why, the how, and the when. Of course, we greatly desire healing, and are praying to that end. But whatever the outcome, may our Lord be glorified. Please pray with us to that end. Please pray that we have the strength, wisdom, and courage to endure, to make wise decisions, and to look to God and others for help. And pray for little Josie, that her body would be strong as she's poked and prodded, and as numerous tests are performed. And pray that she would be healed! Our God is bigger than this tumor.

I will try to keep you all posted as things develop. Thank you to those of you who have already extended your love and support.

Happy Birthday!

On Sunday, July 11, 2010, at 3:42 am, Darcia and I welcomed Josie LeeAnne Black into the world. Darcia's labor was very smooth, and just over 3 hours long. She weighed in at 7 lbs 12 oz, and was 19.5 inches long. We praise God for a beautiful little girl.