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.

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.

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.