Almost 2 Weeks Post Op

There's no place like home.   While it is so good to be home, things are certainly busier without the help of 24-hour nurses!  Henry was discharged last Friday morning after only 3 full days in the hospital.  The adrenaline of the whole procedure wore off after a couple of nights home and, of course, that's when Henry's separation anxiety kicked into high gear.  He began waking every 2 hours and not wanting to be put back into his crib.  Wait!? Didn't we just go through this newborn sleep cycle??

Last night was cause for celebration as Henry managed to comfort himself right back to sleep a few times and only truly woke up twice.  Hope it's not a fluke.  Daytime naps are the hardest for him and he "yells" at me like I have never heard a baby holler.  When he is awake, he is just pure sweetness.  Holds onto my neck and frequently nuzzles his head into me as we walk around investigating the house (ugh, no more rain, please).   Henry is even back to enjoying growling at his toys during tummy time and laughing during diaper changes.

The incision looks pretty darn good.  A few of the stitches are starting to pop out and look like crazy hairs that are in need of some gel to get them back in line.   Four year old Avery is rather disappointed to discover that Mom apparently was misunderstood when she told him that Henry would have a "red line" on his head that we'd have to be careful not to touch...he was so looking forward to seeing Henry's new "red light" in his head just like Buzz Lightyear.  We had a good laugh at that one.

We will be visiting Dr. Kuang next Wednesday for our 2-week post op visit and hope to get a passing grade on our home care of the incision.  I was quite relieved when the discharge nurse called earlier this week and let me know that it was ok that I was not able to clean the incision 5 times per day as Dr. Kuang had instructed.  I decided that sleep was more critical since he looks so good.

This has been an incredible journey for us "Northwest Teeds".  And even though we are so far from so many of you, we have felt so close to you all.  Thank you, thank you everyone for each word of love, prayer for good outcomes, and gifts of comfort.   We love and appreciate each and every one of our family members and friends.  Thank you.

48+ Hours Post Op

Day 2 post op has been filled with increasing relief. As Chad puts it, items from the "worry list" keep getting checked off. We had been prepared for Henry's face to become quite swollen and, true to others' recent experience, we greeted a VERY puffy faced baby this morning. Yes, his face, arms, and legs were twice their normal size, but it was his ears that were most concerning to look at. They were not only full cauliflowers, but also pushed simultaneously down and out. It was strange to see Henry not looking much like Henry.

The scary-looking JP shunt embedded underneath the incision was removed around 11am. Chad helped while I was taken to the meditation room for a massage. I am not kidding!! Doernbecher's is an incredible children's hospital. They have two massage therapists that offer service to parents of cancer ward and surgical ward kids.

They also offer various "therapies" for the patients and siblings. Henry was offered pet therapy, but we declined figuring kitty's fur was best left out of Henry's tiny fist. A few doors down, we heard music therapy and it involved a happy guitar punctuated by frequent "woo!"s. Tomorrow, art therapy makes it's rounds. Lest you think Henry missed out, he has fallen in love with the orange moose and singing, twirling crib mobile he was given by the toy therapist.

When I returned from lingering in the meditation room, Chad was holding Henry and giving him a bottle. Little man was plainly blissed out on morphine and Daddy love. When he was returned to bed, my Mom, Chad, and I couldn't help but do some Cheech and Chong monologing as Henry tripped out on his hands.

Henry took a power nap and it was just AMAZING how much his swelling had gone down. His ears were much more normal looking and the swelling of his eyes had gone down such that One-Eyed Hank could partially open his closed eye. His hands and feet didn't feel so stiff and rounded. All this apparently pleases Henry to no end because he began chirping his Happy Henry song...and dis not stop until bedtime

Sweet dreams precious Happy Henry

24 Hours Post Op

What a difference a day makes. Henry had a very good night. He must rest the back of his head in a blue foam donut and did not appreciate being regularly repositioned into it. However, with the morphine, his cries were short lived. The nurse and I offered him a bottle at about 10:30pm and he was mad when it went dry. His nurse was concerned about him spitting up while so sedated, so he had to wait until midnight for more. When it came, that glassy-eyed baby clamped his hand on the bottle in spite of his (tiny) blood pressure cuff! He grunted through the first few minutes as if he was sure those two fuzzy Large People would take it away any second. We did our best to coo at him and he relaxed into it.

Chad stayed late and, to my happy surprise, returned just after Henry's 5am feeding. It was nice to lie down for a few hours and feel safe to drift into a deep sleep (thanks, Melissa, for the ear plugs). Bonus points to Chad for greeting his groggy wife with a hot Carmel macchiato! I must have looked a coffee junkie as I stumbled off the window bed, grunted thanks for the familiar white-and-green paper cup, and tried to join Dr. Selden's rounds. Sweet Henry had just had pain meds. He looked like he was at Wimbledon looking back and forth at whoever was talking. Glad his eyes are not swollen shut...yet.

This morning, Henry was switched from morphine to oxidicodone, which allows him to be awake, but comfortable. He discovered that his right big toe is currently glowing red from the pulse ox monitor. He has spent his waking moments trying to grab and investigate it. As I type, he is "telling" Chad that he really wants that light-up toe...and is hungry. Oh, whoa! He just kicked off a probe and was stunned into silence by the new bell sound.

Chad is giving Henry a bottle while the nurse takes out his Foley and arterial catheters. Then, we'll be going UP two floors to the step-down unit! Ironic.

Half Way Point

11:00am The resident anesthesiologist just came out to say that Henry is doing so well. "he's great." She estimates another 2 hours to finish the surgery. Then, he'll go immediately to a CT scan before being taken to the recovery area.

Chad and I are doing fine. My mom is here with us and we all went for a bite to eat. I had no appetite, but am determined to NOT pass out when we see him.

--Tina

Henry's Surgery Begins

Oh what a start. Henry was taken to surgery in the loving,joyful arms of the nurses and anesthesiologists at 8:00. Just a little behind schedule. The check in with Henry's nurse, Sandy, began calmly. Then, every parent's nightmare happened directly across the room from us. A baby girl with serious heart troubles went into cardiac arrest. It took restraint not to run and throw my arms around that poor, agonized mother. I am still shaking. Our hearts are with that family and we pray she'll be ok.

After Sandy took a few minutes to collect herself, we gathered in the recovery ward to finish checking Henry in. Sweet little man was getting so hungry, but just barely complained. Sandy undressed him to weigh him and put on his tiny, pale orange (with animals) hospital gown. He giggled at her and everyone just lit up. You could feel the tension leave the air...and the flirt festival was on.

The staff were sharing joyful stories of other Henrys and it helped the hand-off so much. I cried when he went out of site. His eyes were locked to mine and I am so grateful to have kept my face smiling. Chad looks worried but says he's fine. So glad he's Henry's dad. What a wonderful man . Now for the 4 plus hour wait.

Eve of the Surgery

Tomorrow morning, at 7:30am, Henry will undergo his surgery.  Chad, Henry, and I will report to Doernbecher's at 6am.  I suspect that the hour and a half prior to handing little Henry off will be both a total blur and incredibly gut-wrenching.  Just hope the sweet little man is more sleepy and snuggly than hungry and pissed.

The loving, hard work of his daycare teachers (and maybe a little of the OCD hand washing of his mother) have really paid off.  Henry went to bed tonight with absolutely no runny nose, no cough, and no fever.  Whew!  I can't imagine having to postpone the surgery and go through the steeling-up process all over again.  Thank you so, so much for helping to keep Henry well (Billie, Brooke, Jaime, and all).

In my very best Snow White voice, I told Henry's brothers tonight that Henry would be going to the hospital for a couple of days and that when he comes home we must be very careful not to touch the "red line" that he'll have on his head.  Avery smiled brightly and replied, "Well, then I will kiss him on his cheeks and not his red line!"  Riley just meowed at me.  Gotta love 2 year olds.

My Mom is here with us for the week to help keep the older boys' routine normal.  Today especially, it has been a huge help to have her here.  Chad and I have struggled to keep from going to that dark place of worry.   Chad managed to stock the house with enough groceries to feed an over-wintering army and I washed every piece of laundry not currently on someone's body.

The surgery is anticipated to take 4 hours.  Dr. Kuang will come talk to us once Henry is taken into recovery.  While we wait, we'll be given a pager in case we leave the waiting area.  You can't help but visualize handing over your precious baby and being handed, in exchange, one of the blinking coasters they give you at Outback Steakhouse.

Can't stand thinking of handing him over.  Can't wait to hear Dr. Kuang say that he did great.  --Tina

1 Week To Go

In exactly 1 week, little Henry will be undergoing his cranial vault surgery at Doernbecher Children's  Hospital.  To say that we have nervous butterflies is an understatement.  We have not yet explained the upcoming hospital visit to Henry's older brothers and will be doing so this week.  Trying to think of the right way to explain the need for a hospital visit when Henry is not technically "sick" and there is no obvious boo-boo that needs fixing is proving challenging.  Advice is most welcome!

Henry had a lingering cough from his RSV infection last month and that has thankfully finally subsided.  As of today, he has no cold, no cough, and no signs of illness coming on.  The wonderful teachers in our daycare center are working very hard to keep him well.  I asked if Henry could somehow be isolated from the other babies and, wow, did they deliver!  Henry has sole access to the "pool" (a padded, bumpered circle) and his own little basket of toys.  When another child crawled into the pool while Henry got a fresh diaper, a teacher calmly removed the child to another toy area, sprayed disinfectant (diluted bleach) over the pool, wiped, and put down a fresh blanket inside.  She said it made her feel good to help keep him well.

Thank you, everyone, so much for the constant stream of love, prayers, and words of encouragement.  You keep us feeling strong through our worry.  --Tina and Chad