Welcome to Holland

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

This essay was hanging on the wall in the PICU and it describes how I have felt the last two months perfectly.  I am still working on finding the windmills and tulips in our life with little Ellie, but I'm sure they'll be there eventually.

The last 48 hours have been an emotional roller coaster with Ellie.  I am too physically and emotionally exhausted to rehash it all but it went something like this.  Failed swallow eval...feeding tube placed... one more night in the hospital...I had a total and complete breakdown...kiddos visit Ellie and Mom in the hospital...FEES study passed...feeding tube pulled and oral feeds restarted...discharged...got home and Ellie is not tolerating oral feeds at all.
We are home from the hospital but my seat belt remains securely fastened because the ride is not over yet. I'm not really sure what the future holds for Ellie's eating, but I have have a feeling it might be long, skinny, and yellow (a feeding tube).  We are waiting to hear back from the doctor to find out what the next step will be.

Ellie Surgery Update

Sorry for no update yesterday. I couldn't keep my eyes open long enough to post one last night, but yesterday was a good day.  We spent most of the day hanging out just trying to keep Ellie comfortable and slightly sedated with Morphine while the breathing tube was in. The doctor's plan was to take her back to the OR after 4 pm to extubate her so we had to let her wake up and get a little aggitated as that got closer. It broke my heart watching her cry soundlessly with the breathing tube in.  Her poor little face (and whole body for that matter) was so swollen and puffy I hardly recognized her.

They usually just extubate in the room but she was classified as a "critical airway" and the doctor wanted to be in the OR in case it didn't go well. In what was very unfortunate timing, a code blue was called shortly after they took her back and I didn't hear the location clearly but it sounded like it could have been in the OR.  I started freaking out thinking it was her, but minutes later the nurse came back saying she had done great and was on her way back. Phew! That took a year or two off my life. When they rolled her back she was awake and breathing on her own.

She is on a little more oxygen than she normally is at home because of all the swelling, but the Dr feels confident that will improve quickly. A few hours later I was able to feed her for the first time since surgery and boy was I NERVOUS! I just couldn't wrap my mind around how she would be able to eat with her epiglottis stitched up (to the back of her tongue I found out) and not have everything run straight down her trachea. My heart was racing and I was shaking, but she did amazing! Actually better than before surgery! It was such a relief. Since then she has had two more feedings that have gone well with occasional dipping in her sats, but no major choking. She had one scary episode when we were giving her some tylenol this morning. I squirted a small amount in her cheek and she didn't actively swallow and she totally aspirated. Her sats dropped into the 30s and she turned gray, but with some rescue bagging she recovered quickly. We put the rest of her tylenol in a nipple and she swallowed it down great. Lesson learned, we can't put liquids in her mouth without a nipple so she knows she must actively swallow.

Her breathing is still pretty noisy due to the swelling, but it is obvious she is no longer obstructing. I never thought I would say it is great to hear Ellie cry her little heart out. But she cried and cried and was able to breath through it without turning purple or her sats dropping. I am amazed at how peaceful and calm she has been. Before surgery she was just a restless and figety baby because she was always obstructing and trying to reposition herself.

 

I have been so impressed with Dr. Park and his team here at Primary's. We are so lucky to have one of the top Children's hospitals so close. I feel like Ellie couldn't be receiving better care.  I am cautiously optimistic that she will continue to improve and this surgery is going to help her out quite a bit. The plan is to observe her through a few more feedings today and hopefully discharge home this afternoon. Thank you for all of your faith and prayers for little Ellie.

Ellie's Surgery

Tuesday was our long awaited appointment with the ENT, Dr Park, at Primary Children's.  After talking about Ellie's history of eating and breathing problems and then assessing her he said there was definitely some type of obstruction happening in her airway. To see what was going on he performed a micronasolaryngoscopy which is where he runs a straw-like camera up her nose and down to her vocal cords. Once down there he was able to see that she has severe laryngomalacia or a soft and floppy larynx. As she breathes and especially when she eats and cries her epiglottis and both sides of her arytenoid cartilage collapse in and obstruct her airway. Ellie showed off for the doctor by having one of her purple screaming episodes where she cries, can't breath, and turns purple until she pretty much passes out and then slowly recovers. He didn't like that at all. He said her laryngomalacia is severe enough it required intervention as soon as possible. So he squeezed her on his surgery schedule for today (Thursday). The plan was to put Ellie under general anesthesia and do a bronchoscopy which is a bigger scope that goes all the way down into her airways. This would allow Dr Park to take a really thorough look at everything and make sure there were no other problems. Then he would trim up the arytenoid cartilage to remove some of the bulk as well as to cause some scar tissue that will eventually help firm up the cartilage. He also wanted to stitch her epiglottis up so it doesn't flop down obstructing the airway. This surgery will not fix the problem, but is an attempt to lessen the obstructing until Ellie can grow out of it which usually happens at 18-24 months. 

So today was the big day. Ellie could only have breast milk after midnight so we weren't able to thicken her bottles with bananas which made for a couple really tough feedings for her. She could only have breast milk until 9 and pedialyte until 10 then nothing else to eat until surgery. I was nervous about the whole NPO thing because Ellie gets super mad when she's hungry and as mentioned above, she doesn't breath well when crying so I wasn't sure how it was going to go. We checked in at 11:30 with the expected operating time of 1:00. When we got back to the pre-op area they informed me they were running behind and it was going to be an hour later than expected. I was worried because Ellie was already acting hungry and starting to fuss. But I know thanks to the many many prayers being said on my and Ellie's behalf she settle down and was an absolute angel. She went to sleep and slept with very little fussing until they took her back at 2:30. You know she's a wee little one when the Children's hospital doesn't even have a gown that is close to fitting her. So they just kept her in her onesie.

Handing her over to the anesthesiologist and watching her carry Ellie away was incredibly hard, but I knew she was in good hands. The surgery took longer than expected due to her tricky little airways as well as the fact that she wouldn't breath on her own so they had to intubate her and put her on a ventilator, but overall Dr. Park felt like it went well. He said her epiglottis is an odd shape and just folds in half, so he thinks stitching it up was the best option even though it might initially make eating more difficult for her. They left her intubated and on the ventilator and admitted her to the ICU for close observation. They are hoping she will be ready to extubate tomorrow, but said she very well could be on the ventilator until Saturday. They placed a feeding tube to feed her through for the next little bit. I have to mention that every doctor here has been amazed that she has been tolerating oral feedings with this condition. It just goes to show what a fighter she is. Once again I am so grateful for my nursing background, especially in an intensive care unit, because all of the machines and tubes and wires don't bother me at all, but not being able to hold her and seeing her sweet little face scrunch up in a grimace is enough to rip my heart out.

It is killing Scott to be so far away during this. Thank goodness for facetime that allows him to feel a little bit closer. My mom stayed home to take care of the older kids. She told me Miles had a hard day today. He kept going to the living room and looking around for Ellie. First his Daddy left on Sunday, then Grandpa left to Scout Camp, and then his Mama and Baby disappeared. Poor little guy just doesn't understand what is going on. Hopefully our stay here will be short and we can get back home with a new an improved Ellie.

When Daddy Comes Home

The 4th of July is my favorite holiday because it is filled with so many fun traditions.  This year we didn't do the Freedom Run or make it to the Grand Parade.  Sadly we even missed out on the Hale Family candy drop/water fight. Even without some of my favorite things, this 4th of July topped them all because Scott came home to visit.  After being apart for 6 weeks it didn't matter what we were doing, we were together and that made it absolutely perfect. Scott flew out after work Wednesday night and the 3 older kids and I picked him up from the airport. When Miles saw Scott walk through the airport door he yelled out "Daaaaaaaa!" in a high pitch squeal and sprinted toward him completely unprompted. It brought me to tears. From that moment on Scott was showered with endless hugs, kisses, and "I love you"s from the kids. Scott was reunited with Ellie and was able to get to know her a little better. My parents were able to have a break and go on a much needed trip together so it was just our family of 6 for most of the weekend.  Because we didn't have anyone to watch Ellie for most of the time we were limited on what we could get out and do but we still managed a couple swim outings, cul-de-sac of fire, Stadium of Fire fireworks for Scott and the big kids, an afternoon in Woodland Hills at the Murray's, Despicable Me 2 while Ellie and Miles were napping at home with my mom, and even a date night for me and Scott.  Life has been so overwhelming with Scott gone. I have had more help and support than I could ever ask for, especially from my parents, but Scott is my partner and best friend and life felt so much better with him by my side. Scott's trip marked the half way point in his internship. We are so glad our Daddy came home for a few days and look forward to when he will be home for good.

Complete

 I'm still not sure I'm cut out for this four kids business, but I look at this picture and know it wouldn't be complete without any one of these faces. 

Mason. 

My creative, silly, obsessive, walking encyclopedia. 

What would my day be like without his constant larger than life ideas and projects?
So what if my house is constantly covered in paper scraps and crayons?

Brynn.
My fun, adventurous, talkative, sweetheart.
What would my days be like without all of the outings she gets so excited about.
I will never be too busy to listen to her tell me in great detail every thought going through her head.

Miles. 

My energetic, happy, trouble-making child. 

What would my days be like without his big mischievous grin smiling up at me? 

I can always replace things that get broken.

Ellie. 

My tiny, innocent, fighter. 

What would my nights be like without her little body curled up on my chest? 

I can handle sleepless nights for a while longer.

All of these pictures were taken by Bree of Bluebird Photography when Ellie was 2 weeks old. I planned this photo shoot with Bree before Ellie was born. I never imagined that Ellie wouldn't be well enough to do pictures in her first week of life and that we might not get the opportunity to take newborn pictures at all. The night before the photo shoot I was so overwhelmed with everything going on with Ellie I almost cancelled the whole thing. It was just too stressful. But with the help and encouragement of my sister-in-law and mom we were able to make it happen. I have mixed feelings about naked baby pictures, but with Ellie I wanted nothing more than pictures of just her. We took off all her oxygen and monitor accessories and did blow-by oxygen during the shoot. This was the very first time in her entire life I had seen Ellie without a feeding tube or oxygen, or something else on her face and her little body free of monitor leads. It was so worth it. To remove all those distractions and just be able to see my beautiful baby was so special to me.  Bree said Ellie was the smallest baby she had ever photographed. She did an amazing job and I would highly recommend her.

I'll end with a quick Ellie update.

6 week weight -- 7 lbs 8 oz 1%

length -- 19 3/4 inches 1%

Ellie caught a little cold that went through all my other kids earlier this week. With the added congestion she's had to work a little harder breathing so I have temporarily turned up her oxygen to 1/16 again to help her breath a little easier. Two steps forward and one step back seems to be the way she goes.

Growing Girl

Ellie is growing and changing so much every day.  I feel like she is getting so big, but everyone who sees her is still in awe of how teensy she is, so I guess it's all relative. I wish I would have taken pictures of her in her first weeks that scaled her size better, but she had so much going on that taking fun little pictures was not a priority.  Yesterday I pulled out the preemie outfits she has grown out of and realized they fit one of my old dolls perfectly. This doll is pretty much the same size Ellie was when she came home from the hospital. It is crazy to see how small she really was.  It was fun to put Ellie next to the doll and see how much she's grown in 5 weeks.

For fun we threw in my other doll that is wearing a newborn outfit.  Ellie still has some growing to do before she catches up to it. The newborn size diapers that Ellie wears comfortably won't even fit over that baby's bum.

Ellie's body isn't the only thing that is growing, though. Her hair and eye lashes keep getting longer and longer. Her long, dark eyelashes are enough to make a grown woman jealous. She almost looks like she's wearing mascara because they are so dark and long. Here are some pictures I sent to Scott to show him how long they are getting.

 
It's bitter sweet watching my baby grow knowing she's my last. I guess one positive thing about her being so small is I get to enjoy the teensy tiny newborn phase a little longer.

Birthday Bug

Brynnie Bug turned 4 years old this week! Why is it that 4 seems so much older than 3? Brynn of course has been very excited for her big day, and since she still doesn't really understand the difference between a birthday party and an actual birthday she pretty much thinks she got two birthdays this year.  Her first "birthday" was last week when we had her birthday party. Brynn requested to have a Hello Kitty Slip N Slide party. I interpreted that to be a water party with a Hello Kitty cake. Brynn is such a social butterfly that as she started naming all her friends she wanted to invite the list quickly approached twenty people. I wasn't quite feeling up to hosting that big of a party so we trimmed the list down to her closest neighborhood friends that she plays with on a daily basis.  We had buckets of water and squirt sticks for all the kids, a slip n slide, a sprinkler, and water balloons for the kids to play with. The water balloons were everyone's favorite. The annoying part about water balloons is my dad spent an hour filling up over 100 water balloons the night before, but they were gone in a matter of minutes. As with any birthday party it felt chaotic and crazy, but the kids were laughing and smiling and having a good time, so I guess it was a success.

Maggie Glaun, Kennedy, Miles, Sophie Romrell, Mason, Cannon, Hailey McCann, Brynn, Allie Jenkins, Emmett Davidson, and Briggs Christiansen.

The Slip N Slide

Mason and Cannon slipin' and slidin'

Hailey, Brynn, and Allie enjoying their popcicles.

Breaking out the ice cream sidewalk chalk Brynn got as a present.

Emmett, Briggs, and Allie. The brave crew who took on Mason and Cannon in a water fight.

Proof that Ellie still exists. Thanks again to Kacie who came and watched Ellie during the party. Ellie made sure to be extra cranky for her.

Brynn's actual birthday turned out to be a perfect day for her. We started off the day with tennis lessons which Brynn loves and she even got to be first in line for all the drills because she was the birthday girl.  She then chose McDonalds with the Play Place for her birthday lunch. We were lucky enough to have Kacie bring her kids and meet us there. Brynn adores Kennedy and had an absolute blast playing with her.  After lunch I took Brynn on a special birthday date to get a pedicure. She beamed the entire time and loved showing off her pretty toes to everyone after. Thanks to my mom for staying home with Ellie all day so I could spend the day with Brynn.

The finished product.  Brynn informed me "I chose I much prettier color than you, Mom"

The rest of the day was spent playing at the park and around the neighborhood with friends. What more could a 4 year old ask for? Well, let me tell you.  Brynn doesn't ask for much, but the one thing she was asking for for her birthday was some makeup like her friend, Hailey's.  So when Hailey gave her some make up Brynn couldn't have been happier.  She has since enjoyed applying and applying it until she looks like she's been in a fight.  Or as Mason says, she looks like a zombie.  Top it off with the fake nails she also got and she is one good looking little lady.

The beginning of the application.

The Beauty Queen herself.

 Some of her other favorite gifts included a basket for her big girl bike, her baby Rapunzel doll, and her big stuffed fish she named Boppy. 

Brynn loved every minute of her birthday, but that's no surprise. She is easy to please.  I know moms aren't supposed to have favorites, but Brynn is definitely my favorite right now. She always puts a smile on my face.

All About Brynn

• She loves having long hair which is good because it grows like a weed and even with regular trims it always seems to be waist length. She does not love having her hair washed and combed.
• She practically lives off of Macaroni and Cheese, Grilled cheese sandwiches, and chicken nuggets. When she doesn't like what we're having for dinner she is just fine skipping dinner and waiting until breakfast.
• Brynn is a great sister. She is Mason's playmate, she is extremely patient and tolerant of Miles, and she is a big helper with Ellie.
• She is a peacemaker and does not like contention.
• Brynn is a social butterfly and loves to play with friends.
• She loves to get out and do things, even if it is just running errands.
• She likes all things girly, pink, and princessy, but she doesn't mind switching gears to play with the boys either.
• Her best friend of all is Emmett Davidson. They are so cute together.
• She loooooooves her Daddy.
• Brynn likes rules and routine. 
• She can talk, talk, talk...I have no idea who she got that from.
• Her nicknames include Brynnie Bug, Buggie, Love Bug, Bug. Don't ask me why, it just kind of happened.
• She is excited to do her reading and practice the piano every day. (she wanted to start piano lessons when Mason did so we put stickers on the piano for her)
• She can often be heard singing and hums songs as she plays by herself.
• She remains very physically coordinated.
• She is a sleep walker of sorts as she has been since we took her out of her crib.
• In every prayer she says, "please bless Heavenly Father and Jesus that they will be safe." and lately she's even added "bless Heavenly Father and Jesus that they will be good and not do bad things."