The Road

We are now a week out from surgery.  Hard to believe it's "only" been a week.  I feel like the surgery was about 5 years ago at this point.  The whole week has been somewhat of a blur.  I'm not really sure how I'm functioning or standing to be quite honest.  I can count the hours of sleep I've had in the last week on my fingers... and I only have 10, so you can do the math.  About 10 hours of sleep since last Monday night.  With a loving husband, great family and friends, a lot of coffee, and my typical determination, though, I have somehow made it to this point without forgetting to get dressed, forgetting an appointment, or forgetting a child.

The week has gone 'fairly' well.  But we are still having ups and downs.  Meagan's swelling continues to subside.  Matter of fact, the bottom of her face is mostly back to her "normal" look.  Her forehead and top of her head are still quite swollen, but it is a lot better than even a few days ago.  Some of the change is also in the shape and position of her head.  Meagan gained 3cm on her head from the surgery.  It's kind of ironic to me - she was born with a head too big... and now had it made bigger because it had sunken too small.  Oh what a way to come full circle.  

Swelling continues to go down!

Meagan has a lot of times during the day when she is 'herself.'  She will coo, babble, look around, hit her tummy with her hands, and smile.  But then she also has episodes during the day when she will flinch and make a painful face, cry out randomly from a sound sleep making her upset,  or suddenly, for no obvious reason, get incredibly fussy and be literally inconsolable for 2 or more hours at a time.  I'm sure a lot of these up and down behaviors are post-op related.  I remember back to my c-section (which was a cake walk compared to Meagan's surgery), and even 3 or 4 months out, I had twinges of pain that would stop me in my tracks... so I can't imagine what she's feeling when she is having a down day or a painful moment. 

Meggy during one of her episodes.

 I'm also cautiously watching her behaviors because of her shunt.  The Neurosurgeon told us there was a pretty good chance in the weeks following her surgery of her shunt malfunctioning.  He said because the surgery was so invasive, and her skull was manipulated so much, it could definitely impact the functionality of her shunt.  She has had episodes in the last few days where she will scream inconsolably while grabbing behind her right ear (where her shunt is).  She will wince and scream more if I run my fingers along her shunt catheter, and flails her head backwards because of the discomfort.  But again, it is very hard for me to tell if these episodes are pain related due to surgery, or an impending problem with her shunt.  It is difficult for me to tell because so much has changed with her since the surgery, I can't determine what the culprit is.  Only time will tell, so I will continue to watch her and log if these episodes become more frequent.  She sees Dr. Reisner again on October 3rd for her follow up appointment.

That said, there are still many moments during the days when Meagan is Meagan again.  Her smile can brighten up any room, and make your gloomy day turn to sunshine all in a matter of seconds.  She sleeps well, almost better than before surgery, and is definitely getting her rest.  

How Meagan sleeps these days.. mouth open, passed out!

I was driving the girls to school the other morning when we turned on to the main road.  What had been a smooth sailing ride the day before, was now stopped traffic. Orange construction cones. And many bumps and turns along the way.  I was so frustrated because even though we left with plenty of time, these new obstacles were going to make us cut it very close, if not be late for school and a subsequent doctor's appointment. Today, when we drove the same way today, it was a smooth uneventful ride the entire way.  It became clear to me at that moment why people say "road to recovery."  The road may be clear one day, and then may be full of stops, bumps, and obstacles the next.  I have to remind myself of this as Meagan continues to recover.  Everyday is a day closer to getting back to "normalcy" (whatever that is for Meagan), but along the way, the road to get there may take a few turns we don't expect.  In any case, it's a road we'll continue to travel.  And if more twists and turns present themselves along the way, we'll just slow down, be patient, and knock out obstacles one at a time.  Meagan's road to recovery is still under construction...but we are definitely in a better place this Wednesday than last.  

My sweet girl!

Notsomuch

Well recovery night #5 was interesting. The short list goes something like: fussiness and irritability, 100.2 temperature even with Advil in her system, and multiple seizures. Yea, the picture pretty much says it all. 

Hopefully last night was our "low point" at home, and we go back up from here.  I'm just going to count on today being much better!

There's No Place Like Home

HOME! It felt so good to carry Meagan right out of Children's and head home yesterday. I think she knew what was happening:


First post-op smile!




  We got home in the late afternoon.  She really slept for a good part of it, and then woke to eat.  She nursed great, and only minimally spit up.  I took her upstairs to get her settled in and warmed up a bath for her.  She finally had her first bath post-surgery, and she looked very relaxed. Not sure if she was "happy," but she was relaxed, and just looked content to be home.

It felt different washing her hair this time.  When Meagan was really overlapped, her bones were so far over each other, and fused so tightly, Meagan had no soft spot anymore.  She had no soft spaces on her head anywhere.  It was solid and very rigid/bony.  Now, there are several spaces in her skull where they have spaced the bones apart to allow for growth.  So the first time I put my hands on it to put some gentle soap in her hair, her head moved.  It is palpable and squishy in several areas.  It reminded me of when she was first born and her head felt the same way.

All the new little ups and downs of Meagan's post-op head

All of the craters are spaces where her bones were pushed apart. If I put my hand gently on these little 'craters', they squish very easily and move. The best way to describe it is it feels like pressing on a "waterbed."

I was very careful washing around Meagan's incision line.  It goes from ear to ear and the stitches should dissolve on their own.  The plastic plates and screws that are spacing her skull pieces apart should also dissolve over this next year. (Which is just fascinating and weird to me all at the same time).  Her incision is looking great though, and we only put a tiny bit of Neosporin on it after her bath to keep it moist.

The Neurosurgeon said to be very patient with Meagan's head.  He said of course from her cheekbones up, she is still extremely swollen.  That will subside over time these next several weeks.  He said as for her skull, it will "float" in different shapes over time.  Flat, crooked, pointy, protruded, sunken..just about any shape or angle.  But he said it will all even out over time as her skull can now naturally grow and expand as it should have been doing these past 6 months.  So we wait patiently and hope it all works out this next year.  There is a chance she could need a 'touch up' cranio surgery in the next few years if some of the spaces don't end up fully fusing when they are supposed to, but, the Neurosurgeon said this should be a very small risk since he chose to re-attach a lot of her own bone in "islands" and not just cut out a strip in one area.  

In the meantime, I'm very happy to say Meagan is doing well so far.  We have seen a few seizures, but, nothing new from her 'normal' existance.  Her pain is still handled fine with just Advil.  And she is slowly coming back into her old personality and quirky little self that we love so much.

  

In Case You Wanted to Know....

September is Hydrocephalus Awareness month. 

 The Asher Foundation has created a collection of bracelets in honor of Meagan and some of her Hydro soul sisters. All the profits from these bracelets and all of their other adorable bracelets, neckla

ces and headbands, help support Cure International , an organization which helps other people with Hydrocephalus in the world, providing life saving services which otherwise wouldn't be available. To order one in Meagan's name, you can visit HERE

The bracelet designed after our Meagan is 3rd from the top (with the reds and corals).  Meagan's bracelet is the "Meagan Theresa" design on the "shop" page.  

A great way to get some Christmas or birthday shopping done; purchasing a lovely handmade bracelet in Meagan's name,  while also supporting a great foundation that helps other kids like Meagan around the world!

Cranial Vault Reconstruction - Big News on Recovery Day 4!

Dr. R already made rounds this morning.  He looked at Meagan's head and thought everything was healing beautifully.  Here is what his orders were this morning:


1. Try to let Meagan continue to wake up and become interested in her surroundings again. Prop her upright when I can. Tylenol or Motrin for any pain.

2. Wash Meagan's hair with baby soap and clean water.  Soft spots all look palpable, so no reason for another CT scan and we will leave the shunt setting where it is for now.

3. Take her loot, and get outta here! Dr. R said there is no need for her to stay here and get stuck all the time..we can do all her care at home. I. Love. Our. Neurosurgeon!!!

WE ARE HEADED HOME!

Cranial Vault Reconstruction Night #3

This was what my night looked like:

... Snuggles all night!

Cranial Vault Reconstruction - Recovery Day 3

After Meagan got changed from throwing up this morning, and was settled back in bed, I went ahead and took advantage of the time.  I showered, got dressed for the day, and cleaned up our stuff around the room. The night shift nurses switched off to the morning shift, and day #3 was officially started.

The plastic surgery team came by first... they took a look and were still happy with the healing.  Dr. W said he would leave it up to Dr. R as to when Meagan could step down to the Neuro unit and then eventually go home.  He said he would see Meagan in the morning just to verify she was still on the right road to recovery.

Not too long after, Stacey, Dr. R's PA, came to see Meagan.  She liked how Meagan's incision was healing.  She said the swelling looked good/normal but noticed Meagan's head felt rather puffy (as in, from fluid on the inside).  She also noticed the top part of the back of Meagan's head seemed full, and almost protruding.  She went ahead and ordered a CT scan because she said she suspected Meagan's ventricles had grown at too fast a rate with the new space in her skull and was now adding pressure from the inside out, making Meagan's new "spaces" in her skull tense.   The PA was right.  Meagan's vents had expanded a bit too much and too fast..  While we were happy to see her new skull space "utilized," it happened a bit too quickly for Meagan's comfort. Dr. R's PA reprogrammed Meagan's shunt to a faster flow so we could release some of that fluid pressure and hopefully make Meggy more comfortable.

 It didn't help that her day nurse completely let Meagan's pain meds lapse, and was nowhere to be found.  Meagan started freaking out again, thrashing, crying, and whimpering.  The Tylenol wasn't touching the pain because she had now been over an hour with nothing in her system.  I spoke with the PA and she said she would take care of it.  Meagan got some pain medication, and within 30 minutes, calmed down.  The PA said she would work on us getting down to the Neuro unit as soon as possible so Meagan could get settled for the next few days, and have a nurse that was more attentive to her pain management (which I was very thankful for).


While waiting to move to the Neuro unit, and Meagan was resting comfortably,  we had some friends visit.  First, another local Hydro friend, Jack, came by with his mom , Kathryn.  They brought Meagan a sweet little bunny stuffed animal and a colorful book of Bible stories.  It was so thoughtful of them to come by and visit! Jack enjoyed exploring Meagan's hospital room and looking through the bars of the crib to check on little Meagan.  After Kathryn and Jack visited, my friend Lori came back.  She brought me lunch again, and we visited a little bit.  She was also really helpful in keeping an eye on Meagan while I packed up our stuff.

Finally the transport nurse came to get us and officially move Meagan out of the ICU.  As soon as we got down to the Neuro floor, Meagan was much happier.  She seemed to feel better and I could tell the pain meds had definitely set in.  She nursed well once we were settled in.  She had a little throw up about 10 minutes after eating, but not as much as this morning, so she held most of the feed down well.  She seemed comfortable laying in her hospital bed, and the nurse was very helpful in making a plan to stay on top of Meagan's pain to avoid any more setbacks.  I noticed when Meagan woke up from sleeping this time, she tried to open her left eye.  I also noticed her right hand started to pick at her IV line and pull on her blood pressure cuff and her leads. I haven't seen any other evidence of cranial pressure, like this morning, and I haven't seen anymore seizures this evening.  I know that stubborn little baby I'm starting to see today.  I think we are finally on the road to recovery.

Trying to open that eye!

Why hello gorgeous!

Cranial Vault Reconstruction Night #2 - Sleep

Night #2 started off with a visit from my mom.  She is here to care for our other girls while Meagan is in the hospital, and so tonight, I had our sitter go stay with the girls so my mom could come down and see Meagan.   It was nice to have some time to talk with my mom, and tell her about everything going on with Meagan in person.  She got to spend some time chatting with me, and also got to hold Meagan's hand and talk to her.  Meagan really loved her visit from Nanny.

Nanny also brought lovely pictures our older girls made for Meagan.  We hung them on Meagan's crib to make her digs a little more cheerful.

Daddy spent some time with Meagan too because he had to go home finally.  He needed to get up for work, so he couldn't spend the night at the hospital again. He told Meagan he'd be back after work the next day to check up on her and make sure she was doing alright.

Night #2 was better for Meagan because she actually slept peacefully.   Her pain meds were under control, and her itchy head wrap was off, so she slept. And slept. And slept.  Matter of fact, she barely moved even when the lab techs came to draw blood.  

Around midnight, one of the nurses came in our "fish bowl" (what I called our room because it was all glass in the front, so I felt like we were being observed in a fish bowl).  She told us that they needed the big observation room for a new sick patient, and that Meagan would have to move to another room in the ICU.  So we made the trek with all our bags, balloons, and special prizes people had brought Meagan for her stay.  We got settled into our new room in the ICU and Meagan still slept. I decided to go ahead and get some sleep too since I had only slept around 2 1/2 hours total since Monday night.

Around 4am, I awoke to the sound of Meagan crying....she seemed hungry....so I picked her up and she nursed.  However, a few minutes later, we had a "milk volcano." She threw up every last drop she had just eaten.  All over her bed.  All over her pillow. And all over her lovely comfy gown (Sorry Claire! We will wash it and clean it all up just for you!)  So, for now we are still a "no go" on the eating.  We will keep trying based on her hunger cues, but, I'm not sure how much of it she will be able to hold down, so I'm not going to press the issue.  The last thing I want is a puking baby on top of everything else she's dealing with right now.   We'll see what today brings.

  

Cranial Vault Reconstruction - Recovery Day 2

The day started out early.  Around 8am the plastic surgery team already came in to check on Meagan.  They looked her over and were happy with how things were going.  They told us we may wait until Thursday to take off her head wrap depending on how she was doing.  Soon after, Dr. R stopped in.  He, too, was happy with how she was recovering so far.  He noticed how much she had suddenly become even more swollen, and so he advised she stay in the ICU for another day.  He said perhaps at night, we could re-evaluate if she would move to the Neuro floor or stay in the ICU.

The day went fairly smooth for Meagan.  The nurses helped me change her into her buddy Claire's cool green hospital gown.  She felt much more stylish than being in the old scratchy hospital provided gowns!  Meagan was in and out of sleep, and in and out of pain throughout the day.  I realized they only had pain meds ordered "as needed," so I asked the nurses to please change it to continuous for at least the next 24 hours to avoid any lapse in relief.  Meagan also didn't eat much today.  She attempted to nurse a little, but only whimpered.  She attempted to eat a few bottles, but would only suck lightly and then cry.  The nurses turned back up her fluids until she gets on a more regular feeding schedule.

Around lunch time, my good friend Lori came by to visit.  She brought me a goody bag of snacks, books, and the most important thing a mom needs in the hospital: caffeine. Yummy Starbucks drinks and snacks.  It was the perfect package! Lori also brought a cute little bear for Meagan to snuggle.  She then went and brought us Chipotle for lunch (yay for no hospital food!).  I also really enjoyed visiting with her and taking a break by having some good laughs and conversation.

Later in the afternoon, the plastic surgery team came back around.  They checked over Meagan and decided to go ahead and remove the head wrap.  She was so uncomfortable, that the team didn't want any possible heat caused by the head wrap to be adding to that.  Also, her face swelled up so badly today, the wrap was starting to actually indent into the sides of her head, so they thought it was best to go ahead and take it off.

HEAD WRAP ON

HEAD WRAP OFF.... We still have curls!! 

Dr. W's nurse practitioner stayed behind to show us Meagan's incision.  She has a long incision from ear to ear.  It is very wavy, which Dr. R said is so it heals more naturally.  He told us a straight incision makes too much of a line/ridge and causes a part in the hair, whereas a wavy incision will heal much more naturally and allow the hair to cover the scar. (I love how much thought he puts into these kids).

The nurses then showed us how they put the antibiotic cream along Meagan's incision.  They used a long Q-tip to apply the cream from ear to ear along the incision line.  Then they propped Meagan up on her pillow and let her rest.  She didn't want to be touched any more!

 

She is resting comfortably now that she has continuous pain meds.  I'm going to start pumping again and have the nurses store the milk because Meagan has no appetite at the moment. Meagan is in and out of pain and sleep still.  Her eyes are very bruised, as is her face. They are still swollen shut. She is also incredibly swollen from side to side.  Dr. R stopped by once more and said hopefully by tomorrow, she can move to the Neuro floor.  She certainly is my little fighter!

Cranial Vault Reconstruction Night #1 - Restless

The title pretty much describes Meagan's night.  She was fairly comfortable, but pretty restless through the night.  She fussed here and there, and wimpered.  At one point when she seemed more alert, I decided to try and see if she would eat since she hadn't yet.  She was so uncomfortable, I didn't want to move her, so I tried a bottle first.  After running it across her lips a few times, she took a sip out of it.  She continued to sip slowly and break in between and was able to finish 2 ounces.

Around 2am, Meagan woke up again seemingly uncomfortable.  She had no covers on, so I went over to comfort her and rub her leg. It was hot! The nurse took her temp and it was 101.  She gave Meagan some Tylenol and then I picked her up and nursed her.  She would sip and wimper like on the bottle, but at least she was nursing.  She nursed for about 20 minutes.  We cuddled a little bit and then I put her back in the crib.  

Around 3:30 the nurse came back by to change out her antibiotics.  Meagan still felt hot so she took her temperature.  It had gone up a little bit even with the Tylenol, so they are going to re-assess the fever this morning and talk with the doctor about giving her something else to help bring the fever down and make Meagan more comfortable.  

I finally went to sleep around 5:30am... I was up by 6:30am because it was time for Meagan to eat.  She nursed very slowly for about 25 minutes and then passed out again.  I put her back in her crib, and let her rest.  

Hopefully today goes smoothly.  The nurses said we'll monitor the fever closely and hopefully it improves today. We will also find out if Meagan can be stepped down to the Neuro unit or if she has to stay here in the ICU another night.