Possible Infection

Just a quick update on Hannah...
She is pretty much back to her normal activity at home.  She loves to be the center of attention at the dinner table, have a dance party and eat a lot of snacks!  Overall, she is doing well.  Praise God!

On Saturday night we noticed that part of her incision was red, swollen and draining.  The on-call doctor requested that we go to the ER for the Neuro team to evaluate Hannah.  We were told that she had a "normal reaction" and were released around 1am.  On Sunday morning, that part of the incision started bleeding.  We spoke with the on-call doctor again.  He requested we call and talk with the office today.  We brought her to the office today.  They decided to start antibiotics to be on the safe side.  Please pray that the antibiotics will be effective and the signs of infection will resolve.

Thank you for all who have been praying, bringing meals and checking in with our family.  You are loved!

"I love you Ma Ma"

Thank you for checking in to see how Hannah's recovery is going.  Overall, she is doing quite well.  Her pain is minimal and she seems to be returning to herself.  She is still taking it easy and lounging around the living room most days.  We are seeing more smiles from her and she is excited to get back in action.

FAQ:

1.  Did Hannah's head get shaved?

Yes.  Hannah has a very fancy hair cut right now.  She has a 2 inch racing stripe that goes from ear to ear along with a nice circle design at the top of her head.

2.  Is Hannah's brain tumor malignant?

The doctors do not believe her tumor is malignant.  We are still awaiting the pathology results to confirm.

3.  Were the doctors able to remove the whole tumor?

The doctors are confident they were able to remove the whole tumor and connecting tract.  Pathology results will confirm this.

4.  Will the tumor grow back?

Only God knows the answer to that question.

5.  What type of follow-up is recommended post-operative?

Hannah will see both neurosurgery and plastic surgery in the next two weeks.  She will also be seen 6 weeks post-op along with having a follow-up MRI.  Her pathology will determine the frequency after that point.  She will most likely be seen about every 3-6 months.

Prayer Request:

Hannah's biggest issue right now is her incisions.  She keeps picking at them and itching them.  She managed to remove some of the stitches on her nose incision.  We are praying that it heals well and does not get infected.  The incision on her head is very itchy and she has itched it to the point of bleeding.  Poor girl!  It seems to happen most frequently when she is sleeping.  Please pray for quick healing and no infection.

Recovery Highlight:

The highlight of this week came in the form of 4 words.  "I love you Ma Ma."  They are words that we have longed to hear.  It is a phrase we do not take for granted.  You see, Hannah's heart has been broken.  We are working every day to build trust and love with her.  We tell her "I love you" over and over.  She typically avoids eye contact and doesn't respond.  This week, while chomping on a bowl of watermelon, she responded.
Ma Ma: "I love you Xi Xi."  

Xi Xi: "I love you Ma Ma."  

I jumped off of the couch, sat in front of her and let her know how much she is loved.  It was the first time to hear those sweet words come from her mouth.  I am so thankful for that brief moment that she let her guard down.  Thank you Jesus!  

"We love because he first loved us."  1 John 4:19

Post-Op Day 5 - Hannah is home!!

Last night was a bit rough.  Hannah was very fussy and crying to suck her finger.  It is so hard not to let her soothe herself in the way she has her whole life.  She is not allowed to suck on anything for two weeks post-op due to the repaired tear in the outer layer of her brain.  It is so sad to see her upset, but we certainly don't want to have a repeat trip to the OR to repair another dura tear.  T-minus two weeks until finger sucking can commence!

Somebody was tired this morning after all that fussing last night.

This morning we received great news!  Hannah received her discharge orders.  The Neuro team is very pleased with Hannah's progress.  She is still slow moving but is starting to return to being herself.  We left the hospital around 11:30 and were home by lunch.  She took a nice nap in her own bed this afternoon.  Now, we are soaking up all the Dora and Minnie we can get our hands on.  She is also enjoying her favorite snack...broccoli!!  We are all happy to be home!   God is so good!

For those wondering, we will see both surgery teams in two weeks for follow-up.  In six weeks, Hannah will have a MRI to make sure there is no evidence of the tumor.  Additional imaging will be determined after the pathology reports are back (hopefully by the end of this week).

We are out of here!

Post-Op Day 4

Hannah had a good day.  She was awake for most of the day.  She has been pretty cranky because she is fighting rest.  She had some short moments of activity.  She painted some pictures, played on the kindle, played with a tea set and went for a short walk.  Her appetite is starting to return.  All is well if the girl has broccoli!  She sits back and eats it like a bowl of popcorn or favorite candy. :)

 

Hannah painting with Grandma Tammy

Eating dinner with her baba

The Neuro team has started to wean her steroids.  She also "graduated" to care in general pediatrics.  It meant we got a new nurse, but did not have to move rooms.  Hannah also got some "freedom" since they  were able to unplug her from the monitor.  There is talk that we may go home tomorrow.  Tonight Hannah started to express (cry) her desire to go home.

Thank you to our visitors Pastor Jerry and Grandma Tammy.  Thank you also to everyone that is praying, calling, and sending messages.  We love you guys!  We see God's grace, mercy, and power on display every day.

Post-Op Day 3

Good morning!  It's 5 AM and time to change rooms.  Pack your stuff and let's go.

Today we got to change rooms.  Although we weren't thrilled about moving to a new room and transitioning care to a new nursing team so early in the morning, it's actually a good thing.  Hannah is getting better and we're one step closer to getting home.

Hannah was much more awake today.  She even cracked a smile one or two times.  Her day was filled of watching Mickey and Dora on repeat and eating broccoli with apple juice, milk (pronounced nilp), or water.  Hannah also took a little walk today (more on that below) and got a bath in bed.  We're happy to see her little personality starting to return.

The big event of the day was the 20+ minute temper tantrum she threw around 3PM.  Basically, she woke up from a nap and starting screaming inconsolably.  The next thing we knew, the heart monitor was beeping like crazy and her heart rate was up to 180 bpm.  She was thrashing around like crazy and it took both parents to keep her from hitting her head on the bed rails.  Thinking she was in pain, the nurse went and got an order of pain meds.  By the time she got back, however, Hannah had ripped out her I.V.  Lovely ....

The team decided Hannah had to go to the "procedure room" to place a new I.V.  Miraculously, as we walked the 40ft to the procedure room, she stopped crying.  Turns out she wasn't in pain after all.  She just wanted to go for a walk.  No matter, she still had to go through the "procedure" and get a new IV.  This involved 3 grown adults pinning down a 3 yr old while a nurse carefully stuck a new needle in Hannah's hand.  We are thankful that they got the IV in on the first try.  Praise God!  She is such a hard stick!

After the procedure, we held her and walked her down to the toy room.  There she found a little grocery cart and pushed it most of the way back to our room.  It was great to see her out and about and playing a bit.

Special thanks to all of our visitors today (Jim and Christine Ommen, Grandma Tammy, Nathan, Micah, and Claire) and the nursing staff on Floor 6!  Doctors say we will be here at least another couple of days as they start to wean off the steroid that Hannah is taking to keep her swelling down.

Post-Op Day 2

Hannah is doing well today.  She had some moments of being awake, but spent most of the day asleep.  Her sodium levels are on the lowest end of normal.  The doctors are feeling better about that.  Her swelling has increased around her eyes, but she can still open them!  Praise God!  Her pain remains well managed.

She got out of the bed to be held today.  She also drank some Gatorade, ate ice cream and had 3 chips.  She is able to express her needs.  We hear a lot of "I want..." or "Nope!"  She had visits from Grandma Candice, Pastor Fred, Grandma Tammy and her siblings.  Nathan, Micah, and Claire were very curious about her incisions and all of the machines and wires.  They were happy to see their little sister doing well.  We are so thankful that she remained stable today.  The doctors are hoping that she will transfer to intermediate care tomorrow.

 

Thank you to everyone that is praying, sending us messages, and visiting.  We are very encouraged by all of your support.  We apologize if we do not respond individually.  Please know that we have read all of your comments.  :)

Post-Op Day 1 Update

A number of prayers have been answered tonight as Hannah continues to recover.  Firstly, Hannah's CT scan results showed some swelling of the brain, but nothing too concerning.  Also, it appears that her sodium levels have come up a bit and are headed in the right direction.  The nurses plan to draw blood one more time tonight to see if the sodium levels continue to increase.

Around 10:15, Hannah sat up (no dry heaving) and wanted something to drink.  This little girl drank two apple juices and even had some chicken noodle soup.  It was fun to watch her eat her noodles out of a cup with a spoon all by herself.  She stayed up long enough to look at some of the gifts that were delivered to her earlier, watched a little Dora on T.V., and even sat on dad's lap for a bit.  Both right and left arms seem to be functioning, and she even stood up for us so we could change her diaper.  Glory be to God!

By the way, if you're wondering at all about the other kiddos, they are doing well.  I (Matt) went home tonight for a bit and hung out with Nathan while Claire and Micah went to soccer.  Everyone was in good spirits tonight as I put them down for bed.  They are all anxious to come visit Hannah in the hospital and give her gifts.

Before I close this post tonight, I wanted to say thank you to everyone who stopped by to visit us today.  Jim and Christine Ommen, Pastor Joel, Kathy Heisey, and Grandma Candice, you were all a great blessing to us today.  Thank you for your love and support!  Thank you also to the great doctors and nurses who are providing such excellent care for Hannah!  You are loved.

Post-Op Day 1

The Good News:
Hannah is doing fairly well today.  Her pain has been well managed.  This morning they were able to remove Hannah's head drain, foley catheter and ART line.  She still has two IVs left.  They also weaned off of sedation.  She has some eye swelling, but she is still able to open her eyes.  We are told that her swelling will possibly worsen tonight into tomorrow. 

The Concerns:
Hannah has been really sleepy today.  She will awaken for brief moments.  When she awakens, she sits up, vomits and then goes right back to sleep.  The team of doctors is concerned that she has not been more alert.  She has not had anything to eat or drink.  They would like to see her more responsive and taking food and drink by mouth. 

She also has low sodium.  They would like to see it trending upwards, but it went down and has stayed low.  The doctors have decided to get a CT scan of her head to rule out any complications.  They are also starting some new medications.  With her low sodium, she will require more blood draws.  She is a really hard stick and her IVs do not cooperate to pull out blood.  There is talk that she may be sedated later tonight to place a central line. 

Prayer Requests:
-Please pray that Hannah's pain will remain under control.
-Please pray that Hannah's sodium will stabilize.
-Please pray they will be able to obtain blood with minimal difficulty.
-Please pray Hannah's head CT scan is normal.
-Please pray Hannah will begin to drink.
-Please pray for wisdom regarding further interventions.

Thank you praying.  We know that God is in control. 

Surgey Day Recap

Thank you all so very much for your prayers today!  The doctor's reports are that everything went as expected.  They were able to remove the mass (a.k.a. tumor, cyst, polyp, lesion) in her brain and the tract connecting it to the nose polyp on the front of her face.  The other good news is that they removed less of her eye sockets than they originally planned on which made the reconstruction less complex.  The outer covering of her brain (the dura mater) was thinner than expected.  It did tear in a couple spots and required repair.  By our estimation, the surgery took just over 6 hours. 

Hannah is now in the PICU (Pediatric Intensive Care Unit) and is officially recovering.  Her post-op CT scan looked good and her blood work came back O.K.  Prayers are still needed for the next several days as she recovers.  Over the next 24 hours specifically she is expected to swell quite a bit.  It is still likely that her eyes will swell completely shut. Although she is sedated right now, she will eventually be weaned off sedation.  We imagine that it will be quite scary for her not being able to see for a few days.  Please pray that she will remain calm, be easily soothed, and have her pain be minimal and controlled.  There is also some risk that the repairs to the dura mater could open up and allow cerebral fluid to leak out.  Please pray that everything holds together so to speak.

We wanted to thank you again for your prayers and support!  A big thank you especially goes to Jim and Christine Ommen.  Jim and Christine attend our church and provide a ministry that encourages families staying at the hospital.  This Godly couple visited us today.  They helped us pass the time through conversation, provided us with Biblical encouragement, and prayed over us.  I'm sure God was glorified through their visit today and through their ministry and outreach.

Thank you also to all of the other brothers and sisters in Christ who reached out to us today to check in on us and tell us they were praying for us.  We certainly felt wrapped up in love and had a certain peace about everything today.

Pre-op

"I want to eat!"...on repeat!

Resting comfortably.  The recovery room nurses gave her a bow.  :)

Surgery Day - 4:30 pm update

Hannah is out of surgery! Praise God! She is resting comfortably in the PICU. More details later.

Surgery Day - 1:30 pm update

The Neuro team has almost completed the removal of the tract and tumor. They will begin the reconstruction of her skull shortly.

Surgery Day - 11:30 am update

The nose polyp has been removed. They are now working on removing the skull bones to gain access to her brain.

Surgery Day - 10:20 update

Surgery started at 9:40 am. Everything is going well. They plan to update us every two hours.

Surgery Day - 7:30 am update

We arrived at the hospital (OSF) at 5:30 am. There was some confusion and miscommunication regarding her preoperative MRI. She was taken back for the MRI at 7:30 am (1 hour late).  We will let you know when we hear more news. Thank you for your continued prayers.

Hannah's Surgery

We would like to share that Hannah will be having surgery Wednesday, September 16.  Although some people know of her surgery, we have debated about whether to share all of the details.  It is her history after all.  We have decided to share the details for a few reasons.  First, we know that there is power in prayer and we humbly ask for prayers for the surgery.  Second, we are told that Hannah's condition is very rare, so we are hopeful that we can help other families by sharing.  Third, we seek to glorify God, because He is the Great Physician!

The Details:

It is no secret that Hannah has a lesion that comes off her nose.  The question was whether it is a superficial nose polyp or has a connection to her brain.  Hannah has gone through extensive imaging since her arrival in the U.S.  Her records have been reviewed by doctors all over the country in addition to our local doctors.  Here is the conclusion: Hannah has a rare case of mid-line birth defects.  The lesion on her nose has a connecting tract that goes through her skull bone to a tumor in her brain.

Hannah's condition requires surgical intervention because the nose lesion provides a direct path for infection to get to her brain.  The surgery is very invasive and will have a lengthy recovery.  The surgery will involve a large surgical team that is led by a neurosurgeon and plastic surgeon.  The surgeons will make an incision from ear to ear to gain access to her skull.  The front portion of her skull and tops of her orbits will be removed.  Then, the surgeons will work to remove the nose lesion, tract and brain tumor.  Once removed, they will work to reconstruct her orbits and skull.  The surgery is expected to take up to 12 hours.

Photo credit: https://wiki.uiowa.edu/display/protocols/Cranioplasty

(Warning: Link contains graphic images)

Photo credit:https://en.wikipedia.org/wiki/Craniofacial_surgery

FAQ:

How long is her hospital stay?

She is expected to be in the hospital around 5 days with the first 2-3 days in the ICU.

Is Hannah covered by our health insurance?

Yes.

How will we prepare Hannah for surgery?

Hannah has adjusted very well in her four months with us.  We are praying that God will give her some understanding and peace.  She understands most of what we say to her.  She is starting to speak English in the last couple weeks and is able to make 3-4 word sentences.  We will do our best to explain going to the hospital (which she has done many times before) and the doctors' special job.  We will also went on a tour of the hospital to aid in this discussion.

Did you KNOW (she required a major surgery)?!

Does it matter if we knew?  Would we "change our minds"?  No and No.

You see we KNEW that Hannah was our daughter within moments of receiving her file.  Did it have unknowns?  Yes.  Did we go against our agency and doctor's opinions?  Yes.  Through prayer and many God winks along the way, God gave us a peace.  He led us to our sweet girl despite scary unknowns.  God knows!  He knew that Hannah was meant to be our daughter.

We also know:
Hannah is WANTED!
Hannah is SO LOVED!
Hannah is SPECIAL!
Hannah is a CHILD OF GOD and FEARFULLY and WONDERFULLY MADE!

Prayer Requests:
We need you, prayer warriors!  Please lift up Hannah to the Lord!

-Please pray for Hannah to have an understanding of her hospitalization.
-Please pray for the surgical team, the details of the surgery and her post operative care team.
-Please pray for the unknowns of the surgery.  May God give clarity, direction and stamina to the surgical team.
-Please pray that Hannah will have limited complications, manageable pain, and quick healing.
-Please pray that Hannah will not have regression in her attachment, developmental milestones, or language.
-Please pray for our family's anxiousness and nervousness regarding the surgery.
-Please pray for Nathan, Micah and Claire while we care for Hannah.  We praise God for our family's availability and willingness to travel to our home and help care for them.
-Please pray for all of the grandparents to have safe travels and a sweet time with their grandkids.

Thank you for praying.  We will post as we have additional details and updates.  We are grateful for the support of so many!

"The Lord will fight for you, and you have only to be silent."  Exodus 14:4

Four months with Hannah

Hannah has been with us for four months!  She is doing very well and learning so much!  With school in full swing and activities started, we are trying to make the most of our family time.  We are especially trying to make the most of our time with Hannah.  Her surgery is this week and we know that her recovery may be long and unpredictable.  A detailed post about her surgery coming soon!

Here is what we have been up to!  At the end of August, Matt's Uncle Johnny tragically passed away.  We loaded up in the car and headed to his burial at the National Cemetery in South Dakota.  Although it was unfortunate circumstances, we were grateful for the opportunity to see Matt's Mom's side.  Hannah was finally able to meet Grandma and Grandpa Marquette.  She approves!  It was a sweet time with our extended family.  

Over Labor Day, we headed up to Chicago for a night.  Matt had a surprise in store!  We went out to dinner, went to see War Room (highly recommend it!), and stayed overnight at a hotel (without kids!) to celebrate our 9th wedding anniversary.  We were so thankful for that time together.  We reflected on all that God has done in our marriage.  We pray that we He will be glorified with all that we do.

One of our favorite Chicago restaurants and also where we had our rehearsal dinner.

This weekend we spent (freezing) at the big kids' first soccer games of the season.  Claire scored two goals for her and Micah's team.  Nathan scored three goals for his team.  They are very excited to be playing soccer this Fall! 

We also made our annual trip to Tanner's Orchard.  There was apple picking, the Back 40, horse riding, goat feeding and FUN!  It was a beautiful day and the kids had a blast!

Thanks for checking in our family!