Taking a bath

Over the Christmas break I fell into a giveaway addiction. I was determined to win a piece of furniture so we would have something to move into our home. Well, I didn't win any furniture, but I did win a Puj Tub! If you haven't heard of them before I can honestly tell you they are awesome! I randomly clicked on a link for a giveaway that brought me to, the inventor and founder, Katie's blog. Winning the Puj Tub wasn't just a nice win for us it was a revelation...a miracle.

If I am starting to sound over dramatic you must realize that I have a daughter with a plastic tube sticking out of her neck that provides direct access to her lungs. The thought of her slipping or rolling over in a bathtub is terrifying, so we stuck to simple sponge baths at the sink. Enter Puj.

Puj has been all over the place lately, like Ellen and Rachel Ray for starters. It's amazing to me I had never heard of it before...until I won one. I was so pleased with the product I emailed the above photo to Katie with a little thank you note. Then, about a month ago Katie contacted me, asking me if we would be interested in participating in a short documentary about us. I agreed and 3 weeks ago we had a living room filled with lights and cords and a camera. It took about 4 hours start to finish and that will be boiled down to about 5 minutes. It is currently under production and should be ready in a week or two. Crazy huh.

I don't really know what will become of it, but I hope it can serve as a spring board to connect and uplift mothers. I think the Puj could benefit so many other special needs babies that struggle with bath time. I'll let you know when the film is done. And soon I will post Maaike's outfit I made for the shoot, after all, I sew.

One year ago today

Its a bitter sweet anniversary, one year since we left everything we knew behind and embarked on an adventure of a lifetime. We have so many cherished memories from our time in China. We made life long friends, experienced the treasures of civilizations long gone, lived the big city life, and at least partially fulfilled a life list dream. Here are some of the best and worst of our Beijing days:

Worst: the flight to China on March 4th, 2010 Kees threw up all over himself at airport check-in and again and again as we flew through the air, checked in at our hotel, and moved into our apartment. In the photo below Sid and Kees are watching a movie between visits with the barf-bag. Notice the keyboard is covered with plastic-just in case.

Best: Watching our kids love and explore a new culture.

Coy loved to try to eat with chopsticks,

while Kees liked to use them for poking and stabbing.

At first it seemed impossible to find things they would eat,

but it didn't take long before they found their new favorites.

Worst: Commuting with 22 million people

This photo is Coy and Kees in the stroller on the subway

on our way home from the zoo. We purposely keep them

in the stroller so people would not squish them. Sid would read

books on his way to work by holding his book up at face level

with someone jammed under each armpit.

Best: Li Ayi our maid

This is a picture Coy drew of Li Ayi, her, me, and Kees (in that order). It really was as awesome as you would think. Everything in my closet was washed, ironed, and ready to wear. Kees' relationship will Li Ayi would go down hill as she became his non English speaking nanny while I was away in the US, but just yesterday he told me that he missed her.

Best: Hunting for Western products at the markets

Shopping at the markets, even food markets, was really fun. First there was the competitive element of trying to get the absolute lowest price. Then there was the feeling of being on a treasure hunt, never knowing what you would find. And it certainly was always nice to find a little piece of home, like syrup for pancakes.

Worst: Buying meat that was hanging outside

We never got sick and this is a common occurrence the world over, but we Americans like our meat in styrofoam packaged saran wrap.

Best: the fruit!

This little market was just outside our apartment complex. We would stop there on the way home from picking Coy up at school.

The mangoes, oh the mangoes! Juicy, sweet, divine.

Worst: Taking Coy to school

This is one of my favorite photos. We had to fight traffic and cross a major freeway to walk Coy to school each day. I usually walked the kids alone with the stroller, but on this day Sid made the journey with us. This was a worst because on most days Coy would cry as we left her at school. We felt terrible, but knew it would only be a few months before she would start picking up the language and make some friends. Unfortunately we didn't stay long enough to get to that point. Sorry Coy.

Best: Taking our kids on epic outings

We tried to have a family outing once a week. In the short time we were there we managed to make it to all the major sights and then some. Sid and I got to premier a documentary on China last week that Sid had a small part in. As the film flashed through Beijing it was an awesome feeling to know that not only have Sid and I been there, but we went to those locations as a family.

Worst: Never getting to say good bye

We loved our time in China. It's hard to pinpoint why. Maybe it,s because it was a dream come true for Sid and me. Maybe it,s because life seemed so free and easy when compared to the trials that came after. Or maybe it,s because we grew so much together as a family. If I had any idea I wasn't going to get to make my round trip flight back to Beijing I would have done a few things differently... like some major shopping, not put Coy in school and bring the kids back with me.

One year ago today we tearfully said good bye to family and friends in the States and set out to change our lives and live our dream. Today I finally feel ready to tearfully say goodbye to China. Maybe we will go back again someday, but if not, we had a great ride. And for now we will continue to write new dreams as a family of five.

New dog with old man tricks

Maaike has started to pull her tongue in more and more. We are hoping that is because it is decreasing in size. It seems to be, but it's so hard to tell. About a month ago we had a little scare when one morning we awoke to find her over sized tongue had swelled up even bigger. It was so big that she couldn't pull it into her mouth at all and it was dry and cracking. We followed her around with little wet medical sponges to try and keep it moist until we go her up to Primary Children's hospital. Many terrible things came to the table with the discussion on possible treatments, including removing the front portion of her tongue, but it was found that she also had an ear infection and there may be a connection between the two. Some of Maaike's cysts are lymphatic and could therefore become inflamed in response to an infection like a lymph node. After the appointment we picked up the prescription and said a prayer...and it worked! In just a couple of days her tongue was back down to it's usual size and now seems to be even smaller. It is such a joy and relief to see her pull her tongue into her mouth. We love it, even if she looks like she forgot her dentures.

Things I never thought I'd sew

I have so much to catch you up on. I have actually been sewing! Crazy I know. While my husband was back in China Kelli flew out to keep me company! It was awesome...minus Kelli throwing up on arrival and then getting the flu, but we both made three skirts while she was here. I shall post on them later when I have the time to go through the photos.

Today's post however is on yesterday's sewing project...arm restraints. Yes. I can't believe it either. Never in my wildest dreams did I think I would be sewing custom arm restraints for my daughter. But here we are.

Every day I have to change out her trach ties (aka the straps that go around her neck to hold the tracheostomy in). I usually swaddle Maaike in a receiving blanket to get the job done, but she has now figured out how to wriggle her arms out. Last week as I was cleaning the wound area she got one of her arms out, reached up, and decannulated herself (aka pulled the tracheostomy out of her throat!)! I stayed calm and cool in the moment, but after I got it back in her neck I let myself have a freak out. As trach kids get older it becomes more common, often as an attention ploy, but 7 months is a little young for that. So, for now, arm restraints it is. But, at least I made it pretty!

love this baby

destined for a corner office

Maaike's physical therapist Betsy, which is not her real name- only the name she goes by, made this custom chair to help Maaike work on her self-sitting. We lovingly call it "the cubical". This is where Maaike sits to eat as she is still too small for her highchair (we had to add a phone book to prop up our little miss in the cubical too). Looks to me like the cubical is in line for a little decorating.
We have started solid foods for Maaike with some veggies. Looking at her tongue you would probably think, "Well there is just no room for anything else in there." And you would be right. In fact, we have to use the handle end of the spoon to feed her because the actual spoon is too large to fit in her mouth. But, every now and again we manage to get a few ounces of pureed peas down the hatch.

None the less the cubical has done its job as Miss Maaike has found her tiny sit bones.

I am thankful for traches

For much of the past 5 months I have felt like Maaike's trach was my enemy. Such a small thing has changed our lives so drastically. The plan was always that Maakie and I would fly back to China to Sid and the kids until the trach came into play. It was our pediatrician in China that told us not to bring her back. "They (doctors in China) have maybe seen one or two traches in little kids before, if ever. Its just too risky. If anything went wrong..." And so we sold and packed up everything we owned... again. There are days when I look at sweet Maaike and pray that we made the right decision. Sometimes I still can't believe that we let them do this to our little girl, something so barbaric. But then I think back on the day when I went to the hospital to consult on Maaike's sleep study results. "Only 10% of her air way is usable...she is working so hard to breath you'll be looking at heart failure...its really the only option we have left..." That was a bad day.
But now, almost five months out from her surgery, I can see her, just Maaike, no trach, when I look at her. I am enjoying this baby stage like I never did before. Maybe its because we are forced to be home so I have to/get to take the time to enjoy her. Maybe its because the possibility of losing her seemed much more real with her. Maybe its because her beautiful fuchsia lip makes her smile pop out that much more. Or maybe its a gift for moms with babies who have special needs. No matter. I am loving being a mom more than ever and if its a trach we need to have Maaike here with us then a trach we will have. I am so thankful for traches.

6 month stats:

13.9 lbs (16th percentile! up from the 6th)

27.2 inches (95th percentile! up from 93rd)

Star of the Week

As part of Coy's kindergarten class each child gets to take a turn being the "Star of the Week." The parents get to make a poster all about their child and then come in at the end of class to brag about how wonderful their kid is and what kind of stuff they like and then share their child's favorite treat with everyone.

We took a few moments this morning to talk about what Coy would like on her poster and what her current favorites are. I knew most the of the responses: favorite food = my homemade chicken pot pie, favorite book= "What! Cried Grannie", favorite candy = gummies. But there were a few surprises too, like her favorite color is now light grey. Okay. Top of my list too.

Bragging on Coy is easy these days. She still has her freak out moments for sure, but she has caught me by surprise in the best ways lately. Most notably, the day I didn't wake up.

Getting enough sleep is a daily challenge. Between middle of the night feedings, to changing the pulse-ox probe every four hours, to the oxygen saturation alarm sounding, I average about 6 hours of sleep a night. I do pretty good most days, but one afternoon it all caught up to me.

After dropping Coy off at school and putting Maaike down for a nap I wanted to give Kees a little one on one time. We curled up in a chair with a few books to read and set an alarm on my phone to remind me when to leave to pick up Coy. I can't remember how many books we read or if I even finished one before I fell asleep. Kees stayed right there in the chair with me and looked at the pictures while I snoozed sitting upright.

I don't know what finally woke me, but as my eyes went to the bird clock I went into simultaneous shock and panic. It was 4:15pm! I was suppose to pick up Coy from school at 3:30, 45 minutes ago! I ran first to check on Maaike, fearing I had slept through her oxygen alarm, but thankfully she was still sound asleep and breathing well. I then grabbed my phone. not only had I slept through the alarm I set, but also through a call from the school asking me to come pick Coy up, and a call from my husband after the school had called him. We only have one car so he was powerless to help.

I tried first to call the school, but the line went automatically to the after hours voice mail. Then I called my mother-in-law. No answer. My sister-in-law. No answer. My brother-in-law. No answer. Sid. Answered and he had gotten a hold of my father-in-law. Knock on the door. Royce, my father-in-law, he would leave to get her straightaway. I was still in a groggy daze of shock, but went in to unhook Maaike from all her machines who was now stirring. Kees, Maaike, and I went out on the front lawn to wait.

I imagined the reaction she would have getting out of the carin tears, "Mom! I was the last one! Why did you forget me!?! Why didn't you come get me?" I felt terrible as it was. Over whelmed with Maaike's care I however determined to make sure that Coy and Kees still felt as loved and cared for as ever. I hated to think of a little kindergartener waiting alone in the office for 45 minutes. Just a few weeks before Coy had offered up this prayer at dinner, "...and please bless that Mom and Dad will care for me and Kees as much as they do Maaike." A piercing arrow straight to the heart.

When Royce's car pulled up my heart was racing and I started crying. Before she could say anything I started to tell her how sorry I was. But she was not crying. In fact, Coy looked just fine. She only stopped for a moment to say, "It's okay mom" and gave me a quick hug before she ran off to play.

I stood there crying for a minute, letting myself purge it out, but then took a seat with Maaike as we watched Coy and Kees play on their bikes. It was a beautiful moment, the sun was shining through the giant maple tree, there was a slight crispness to the early autumn air, and I was in awe of my five year old's resilience.

She's a Saint

Maaike just couldn't be anything else this year. How many things in this world come with a barrel under their chin? I colored one of her nose-piece barrels to match the Saint Bernard's. The only problem is what to do next year?

Cousins on parade.
Coy wanted a cat pumkin, I carved a trach for Maaike's (really the scariest of all), Sid went for the the Nightmare before Christmas, I finally ended up with a haunted tree, and Kees wanted a bat.
Next week Maaike goes back up to Primary for the trach clinic and more evaluations. It's always nerve racking wondering what they will or wont find, but it is comforting to know that regardless of or visit next week or next month Thanksgiving will come and sooth me to sleep with tryptophan.

Team Edward

It is actually blood, her blood, but obviously she isn't bothered a bit. We had five bloody mouth episodes yesterday. An over sized tongue engrossed with vascular cysts just can't compete with one tiny baby tooth. What ever are we going to do? Her gums aren't going to stop with just one. But at least I feel I can finally and clearly throw my alliance to Edward. What can I say? We are pale. We stay inside most of the time. We drip blood down our chins. We are ... Just say it... Vampires.
Here is Maaike associating with Team Jacob. Amazingly these two are first cousins. Just feel the tension.

Maaike enters the world

Maaike (Micah) was born at the end of May 2010, a whopping 7 days late. Everything about her delivery was as normal and textbook as her brother and sister before her. The only unusual thing was the location I suppose. Three months prior to her birth we had sold just about everything we owned and moved to Beijing, China. She was delivered at Beijing United, an international hospital that has a great reputation among expats.

After a taxi ride to the hospital and about 5 hours of active labor Maaike made her grand appearance. 8 pounds, 14.5 ounces. 21 inches long. As they wisked her over to the warming table and started to patch me up I over heard the doctor saying something to my husband about possible laser treatment and "it's not that uncommon," and "it's strictly cosmetic." For some reason I was imagining that she had webbed toes or fingers. I would blame it on the drugs, but I hadn't had any. When they finally brought Maaike over I could see that what they were discussing was her lower lip and tongue. The doctor called it a port-wine-stain, aka birthmark.

It wasn't until the next day or two later that I felt a rather large bump under her left ear. The doctor's new assessment was hemangeomic tumors. That would explain the dark coloration on her lip and tongue as well as the growth we were feeling. The doctor advised we get an MRI to be sure of the tumor placement and to make sure there weren't any others. the hospital we were at didn't have an MRI machine, but Maaike could be taken via ambulance to another hospital. I was assured that she would be taken care of as they would be sending a wet nurse with her. I graciously declined the wet nurse as I felt just fine to take her myself.

The other hospital was contacted, but the MRI would not be available until the next Friday. Just for good measure we had an ultrasound performed on Maaike's mouth and neck. she slept through the whole thing, blue jelly in her mouth and all. The tech stopped counting the cysts at 10. The tech, doctors, and ENT started discussing the possibilites right there supposing I didn't speak Chinese, but I do. My husband Sid was gone caring for our other two children, so I was left to wonder what it all meant.
Our pediatrician, Dr. Alexander, was an American and as soon as he got the report he "after hours" advised us to get her to the States as soon as we could get her passport together, before any of those cysts started to grow. He also advised us to carefully guide the Chinese pediatricians to the same conclusion so that they might think it was their idea in the first place. This we did.

Sid called the US embassy and the next morning we had two representatives in our hospital room expediting Maaike's passport. It was ready just the day after that. It would be another two days to get her visa for re-entry to China.

At nine days old Maaike and I would board a plane bound for Utah's Primary Children's Hospital. Little did we know there would not be a return flight.

So Blessed

The original plan was to bless Maaike on the 4th of July in Beijing. My wonderful parents bought their tickets back in December so that they could be there. As it turns out I was at the hospital with Maaike, two days out of her trach surgery. So instead of going out to help us settle and adjust with a new baby in China my parents flew out to rescue Sid from single parenthood and pack us up for another international move. We don't know what we would have done without them. Now, other a month later and on the other side of the world, Maaike finally got her turn. My parents were able to make a trip once more to be here with the added bonus of my sister and her family from Chicago. It was wonderful to celebrate all the blessing we have received in the past couple of months and to call on the Lord to continue blessing our sweet baby girl.

After the service we met back at our farmhouse, under the big oak tree, for a family lunch. It was wonderful to have both sides of our families together and to thank them for all the love and service they have given us.

The road is still unclear for Maaike, we meet with a pediatric radiologies this week to look at some possible treatments, but one thing is certain. Maaike is one very loved and very blessed little girl.

Matrix the next generation

Thursday night brought us back to Primary Children's Hospital for a second sleep study. The first one was done when Maaike was about 2 weeks old and was the catolist for the tracheostomy. An average kid will desaturate (have their oxygen level drop below 90%) a couple times during the night. Maaike's first sleep study showed that she was desaturating more than a hundred times in an hour and using only 10% of her airway. At Maaike's first sleep study I had to told her down while the techs hooked her up. This time I was amazed as Maaike sat patiently and let them do their work.
Results will be back in about 2 weeks and we are expecting they will be much improved over the first time. Hopefully they got enough data. In the 8 hours of sleep time Maaike clocked in about 6 and I got about 2. Sleep studies just aren't very sleep promoting.

Poor thing. After they finished Maaike looked like she was ready to enter the cyber dream land induced by computers in The Matrix. Next sleep study I will make sure to dress her in black patten leather. I did always think that Sid looked a bit like Keanu.

sweet baby girl

The day before Maaike's surgery I had her pictures taken by Haley Ann Warner who just happened to be up my way from St. George. We are thrilled with the pictures she got and will forever treasure the memories they hold of our baby girl as she came into this world: pure, sweet, and trach free.

The new normal

Leaving the hospital was nerve racking. First of all I have had a nurse or tech sitting at the foot of Maaike's bed or just outside our room door for the past 8 days, 24 hours a day. Yes, a trach baby gets their own personal army. Second, it was my choice to leave the hospital. Usually you have a discharge nurse come and tell you when you get to go home and are, aka, kicked out of there. In our case we are not supposed to leave until we feel confident that we can care for her trach. Our interactions with the discharge nurse went something like this:

"How are you feeling? Are you sure you're feeling okay? We can wait and discharge you tomorrow if you think that would be better. Maybe we should wait til after the weekend and discharge you on Monday. What do you think?"

Wow. Loaded questions. and believe me I weighed the decision carefully, but what I finally came to was that I know what to do and between Friday and next Monday I wouldn't be getting any additional training, so now was the time to start doing. We left the hospital with two cars filled with my suitcase and all of Maaike's gear. We had to use a wagon to get all of Maaike's stuff out to the car. I pulled over twice on the way home to check on and suction Maaike, but finally we made it. My mother in law Rita followed behind me the whole way home and when we pulled off to our exit we started sending each other high fives from car to car. It really did feel like a big accomplishment.

Just after arriving home we welcomed in Kerry, a respiratory therapist, and Tami, a home healthcare nurse, and a truck load of equipment and 3 more machines, the hospital sent us home with two. So this is the new norm.

What I am still getting used to:

• waking up without a panic to one or more of Maaike's alarms going off and unfortunately they are so sensitive that if Maaike kicks they will go off.
• remembering to bring the suction machine, pulse-ox reader, and emergency resuscitation duffel bag with me wherever we go, not to mention the old normal stuff like diapers and wipes and a change of clothes.
• Maaike's silent crys. As she breaths through her neck now no air passes over her vocal cords so she is no longer able to made audible crys or anything for now. At some point she will get a speaking valve that will force the air up and out of her mouth again, but for now the only time when I get to hear her sweet voice is when she burps. Oh how I treasure those burps.
• Seeing just Maaike and not her new appendage. I do have these moments, when I can see only her beautiful face and think of her as just my little baby, but those moments only come and go as I focus in on her daily care. I know with time all of her needs will be second nature and she will just be our little Maaike, but I'm not there yet.
• The sounds our lungs make. I had no idea how noisy our insides are, but now that we have a direct port into Maaike's lungs I know that sound and am learning to gage when it is a happy swishing, hiccuping hiss, or a gurgling I need to be suctioned kind of a sound.

This is a rare sight of Maaike with no attachments on her trach. Oh baby, you had better be a perfect teenager. I can't wait for her daddy and brother and sister to get to know her again. Sigh. Tomorrow can't come soon enough.