Thursday, November 25, 2010

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)

Sunday, November 7, 2010

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.

Sunday, October 31, 2010

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.

Sunday, October 10, 2010

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.

Wednesday, August 25, 2010

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.

Monday, August 23, 2010

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.

Saturday, July 31, 2010

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.

Tuesday, July 27, 2010

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.

Saturday, July 10, 2010

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.

Saturday, July 3, 2010

One tough chick

After a long night I awoke to a freshly washed baby with another hospital accessory. Our kind night nurse brought in a little purple bow to make sure everyone knows our precious Maaike is a girl. Some how this simple bow softened everything and started us off on a great stride making day. The ventilator is now gone and she is breathing all on her own through her new air port. Then, late this afternoon, Maaike surprised everyone again by drinking from a bottle and bypassing a feeding tube. We are so proud.We have many more steps to go, including my five day tracheostomy care class, but we are glad to be on our way.

Friday, July 2, 2010

Many thanks

I have had my moments of disbelief and being over whelmed, but almost all the tears I have shed in the last month have been in amazement and gratitude for the friend and family that have watched out for us. There have been cars borrowed, beds slept in, children watched and walked to school, meals delivered, hours driven for comfort given, and prayers offered up on our behalf. We feel absolutely loved and cared for. Thank you. Let me share just one experience that testified to me of the power of your prayers.

I was borrowing a car to get to and from some appointments for Maaike. On one trip over the point of the mountain, between Salt Lake and Provo, the car started sputtering and then lost all power. I was in the middle lane of the freeway and rolling. Seeing eighteen wheelers start to swerve behind me I began franticly looking for the hazard lights. I couldn't find them so signaled to change lanes and work my way to the emergency lane. No one would let me over. People started honking and swerving. I was rolling at a nice 3 miles per hour.

Then, out to the left, I saw an arm waving me over. A tow truck pulled up behind me and blocked the other lanes giving me time to roll out of traffic. He then pulled up in front of me and came and kneeled next to my window helping me trouble shoot the situation. When nothing worked he hooked up the car and towed me right to my in-laws house with Maaike and I sharing shot-gun. The timing was more than impeccable. The fact that Rick- the tow guy was right behind me at that time is more than coincidence; its an answer to prayers. Thank you.
This is Maaike's last photo before surgery. I'm in the waiting room right now. She should be done any minute and our new lives will begin. And since I know it works, any more prayers on her and our behalf will be gratefully accepted.

Saturday, June 26, 2010

The next step and new accessories

Baby Maaike and I are doing well. Being back in Utah has given Maaike the chance to meet some of her relatives and has given me ample time to catch up on all the TV I had been missing (unfortunately I hadn't missed much). Maaike has been tested, observed, and discussed. So young and already so popular. Fortunately we have come to a resolved coarse of action. On July 2nd Maaike will undergo a one hour surgery to place a tracheostomy in her tiny neck. A great website with photos of other kiddos in Maaike's club is We estimate she will have her trach for 2 to 4 years, buying us time for Maaike to grow and to observe the growth of her cysts. To ensure Maaike makes it safely to her surgery she has picked up a few new accessories including an oxygen tank and oxycemeter for her sleeping hours. Next stop... a 1980's choker.

Thursday, June 17, 2010

2 weeks and the lipstick legend

When Maaike was born one of the first things we noticed was her beautiful full lips. Many a woman has paid big bucks for a nice pouty bottom lip and Maaike's even came with purple lipstick pre-applied. Sid told the kids that while I was pregnant I accidentally swallowed some purple lipstick that Maaike grabbed. But, being a baby, her application skills are a little premature and the lipstick got all over her tongue too. At three days old an ultrasound showed that Maaike didn't stop there and decorated the inside of her neck with some bead like accessories. So young and already a diva.
So what does that mean you may ask. Well, we don't really know yet. Our pediatriction in Beijing sent Maaike and m e on a plane to Primary Children's hospital in Salt Lake City to hopefully find out while Sid holds down the fort with Coy and Kees in Beijing. Thankfully Maaike has been doing really well and we only had to spend one observational night at the hospital. Our days have been spent running different tests, meeting with specialists, enjoying the beautiful Utah mountains, and waiting. Sid has been super mom and dad taking Coy to school, changing Kees' diaper, taking the kids to the park and aquarium, catching a little of the playoffs, working, and waiting. We are praying that the waiting will be over soon and we can start getting to work fixing up Maaike and bring our family back together... for the love of a baby diva.