Girly Mees

My little darlin is holding strong. She has had a rough couple days. Her finger tips are purple, she is breathing really fast, and she is really uncomfortable. I am pretty sure her stomach hurts due to the lack of profusion to her stomach. She is still tolerating her feeds which is more than the doctors expect from her. For some reason she spikes a fever every day. Her heart rate is continually in the 200's- mostly when she is really mad. She is still on C-Pap, but is tolerating it less so they leave her off. I never mentioned this before but her central line came out (double lumen)- and they had to re-tunnel it under her skin. Her kidney function or BUN level was at 53- which if you are like me and don't know much about BUNS- it is really high for an infant. She should be in the single digits. They have her on a continual morphine drip to help with her discomfort. Some times this is not enough and she still has to have bolus doses to help her sleep. Her liver is also very large due to all of the heart medications. She is currently on four heart medications along with a bunch of other meds that help maintain her little body.

In summary- we're not doing so hot. I keep having dreams that she receives her new heart. I have been contacted by other heart mommies and I am so grateful for the support. Some days I feel like I am being tortured (watching her go through all of this), but most days I am just grateful to be here and to be her mom.

On a lighter note-here is a pic of her with a little cowgirl belt given to her by her papa.

Socks and sandals

Today I wore socks with my sandals. Sure it may be a fashion faux pas, but at the end of a long day at the hospital my feet are smelling very nice.

Below is a funny commercial that fits well with the culture of the great northwest.

A good conversation

Yesterday I was at the bank minding my own business as usual, when I couldn't help but overhear a candid conversation taking place behind me. Neither could I help but notice that this conversation was taking place with a middle-aged gentleman and....himself. I have put much thought to these conversations over the years. In this particular encounter, I felt a little strange (thinking he might feel strange as well, maybe noticing that I noticed that he was talking to no one, and doing it loudly and that oops he didn't realize it but his thoughts were being projected by way of his larynx) and struck up a little conversation with him. He just looked at me like, "dude, you don't just go talking to people in the bank line, weirdo." It hit me that he doesn't realize that he might be the object of our favorite Sesame Street song: "one of these kids is doing his own thing, one of these kids is not the same." Let's be honest, everyone talks to themselves a little bit. Hit your thumb with a hammer, you might yell "idiot!" That is the first step of talking with yourself. But my question is, how does a person go from that, to having full on conversations out loud? Some of the more heated, bitter arguments I have ever witnessed were from people ripping into some imaginary opponent. Are these people reliving a previous altercation or are they creating new ones with some window friend? I also would like to know why these conversations are usually angry ones? Why aren't people talking to themselves more pleasantly? I suppose it is possible that there are a lot of very calm and pleasant one-way conversations going on all around me, but I just am not noticing as much due to the sheer volume of a shouting match. I do enjoy listening in on these rants to some degree. But, I keep my distance. I just want to make sure that if you find yourself saying more than just a couple words out loud, you are just that much closer to crazy.

Small update

This morning Mimi and I did another interview, this time with KOMO 4. It went well and I told the interviewer to only use clips of Mimi, and to black out my face like when they do those interviews where the witness does not want to be identified. But she was really nice and did a good job. It airs tonight at 5:00 I beleive. Mia is doing ok these days. The last two days she has been extremely fussy and Mimi has gotten little or no sleep each night since Mia likes to have her binky replaced or to be held. I am up here so that Mimi can take a nap. I am seeing first hand how Mimi has had to stand by her bed pretty much non-stop. So, we continue to lean on family and friends to help us make it by. We have been so blessed with willing helpers. Our children have been to many friends, cousins and grandmas houses. They even had a spontaneous invite to the zoo! More later

Costco

Today I walked out of Costco having spent under $100.00

Moles Beware

The kids are the best helpers on the planet. If there is a project I am doing, chances are I am the third closest person to the action. I love this and have already seen how handy they are becoming as they can install light bulbs, remove or place screws, hammer nails, remove Sheetrock and the list goes on. The latest is they help me set mole traps. We dig the hole, place the trap, cover it and wait. Here is our latest catch. We have buried all three of these guys in our lawn in their tunnel. I wonder where they are coming from and I hope that when one of their friends shows up they will split. I can imagine them slapping their dead mole buddy and shouting, "Bill, wake up!"


*Here I think Ellie is so engrossed in her pose that she doesn't seem to remember that she is holding a dead rodent. Where does she get that camera ready smile from?



This smug look is the look only a seasoned hunter can have. You don't want to mess with this!

Sweating bullets

Ellie and Jensen love to talk to new friends everywhere we go. Here are a couple of the more awkward encounters

Jensen: "She is really big" to innocent hallway co occupant.
Jensen: "That girl is really short" as we passed by a Dwarf in the hallway.
Jensen: "I saw in your mouth and can see that you are missing a lot of teeth." To random guy in elevator.

There are others that just don't sound right to repeat. The good thing is that people don't take offense when it is a kid. I just say things like, "ya buddy" and try to keep moving.



Then today when we were heading to check out of our hotel in Seattle Jensen ran into the elevator ahead of us with the door shutting right behind him. I dove to hit the button but was too late as I heard Jensen's frantic crying getting quieter as he headed down. I grabbed the phone and notified the front desk and it began to set in that he could get off on literally any of the 50+ floors and could be quite the task to find him, especially with 6 elevators that were not individually marked to get the search party looking in the right place. Luckily a couple was getting on an elevator right when the drama went down and found him in the lobby crying. The poor kid. They showed up back on our floor with my boy. I must have thanked her 20 times and she was really sweet. That was about all I could handle on top of our Mia heartaches. Then I left Mimi's suitcase in the lobby since i was so frazzled. It was recovered and all is well.

Max

Aunt Natalie has come to town to help our family for the next few months. She is a nurse and will work at ST. Francis Hospital, helping us when she is off of work. She has been a pillar for us to lean on in many ways. Max, a Maltese, is her 2 year old dog. The kids LOVE little Max, and since we aren't getting our own dog ever, it has been awesome to have hers around to love and play with. Let me say again that they LOVE this dog. If you didn't look closely, you might mistake her dog for a neck warmer permanently attached to Jensen's body. Thanks Max for being a welcome distraction.

Painting Baby's room

Mia's room is getting painted and prepped for her longed for arrival. Since Jensen and Ellie have taken the initiative to paint the carpet and walls on their own (They were in BIG trouble), I decided to let them paint some of the poka-dots so they could do their part. They loved getting on the Ladder and painting. I just followed behind with the wet cloth and it worked out.

T- Ball

Just one look at this little heavy hitter and 5 year olds run away. It is crazy to think that a year ago Jensen would lay down in the middle of the field in the fetal position. He was showing major signs of shyness but he seems to really be over it. He goes right out onto the field full of others he doesn't know and does really well, making friends as he goes. We are so proud of our boy. Jensen is also all about equipment. He loves his cleats, bat, mitt, helmet etc.

Baby Mees

Baby Mia is holding strong. There isn't much of an update other than how cute she is. She spends a lot more time awake lately, and does the cutest things. Mia has a permanent furrowed brow that has created creases above her eye brows. This is most likely due to the fact that she is wondering what is going on. When she sneezes her entire head crashes forward (and she sneezes a lot!) Whip lash wouldn't be very fair on top of everything else she has going on. She also likes to twist her fingers in her hair (obviously not on purpose) but her fingers are always on the move up behind her ear.

She still only weighs 7 1/2 lbs- but is is 23 inches long. The doctors don't really change anything from day to day. They just want to keep her stable and eating (well not eating, but food going into her intestines). Hopefully there will be an update soon that she is getting a transplant!!

Suicidal Moth

Ellie has developed a habit of "stretching the truth" lately, and mostly with things that don't matter. Earlier today I walked in her room as she was writing on her leg and immediately informed me that Jensen did it. I was like, "uh, you are still writing, what do you mean?" Strange. But late tonight Ellie was getting more and more creative on her tactics to stay out of bed. She came out of the bathroom wanting me to run in and kill a moth. Jensen has developed a concern about moths as his eyes get real big and he gets really worried about the moth eating the clothes off his body. Despite this and even though our friend Jayna has had many near-death experiences with Moths, I told Ellie that I was confident that she could handle the situation. A minute later she shows up with half a moth. I asked her if she'd killed it (ready to give her a congratulatory high five). She said no. I was like, "but Jensen is in his bed.." She must have realized that she was in a corner, so thinking quickly said, "the moth killed itself." Awesome.

An anniversary to remember

Our day passed by very calmly and slowly on July 27th. We were at the hospital with our baby and enjoyed a romantic cafeteria meal as we kept our baby near. I hold this (our sixth) anniversary very dear as we were able to spend an entire day together with little interruption as Mia was very stable at this point and would calmly let us hold her or sleep in her bed. Apart from the obvious heartbreaking moments recently, I have cherished the time that Mimi and I have been able to share as we have spent much time just her and I in the hospital. I have fallen in love all over again. John

The News

All Washingtonians need to tune in the the 5 O'clock news on Channel 5 tonight! We just finished an interview here at Children's hospital discussing our situation with the goal in mind of raising awareness about organ donation. I sure hope they captured my good side... See here to watch

Miss Mia

We figured it was time for an update on our Precious Mia. "On Paper" Mia doesn't look too good. Her heart function hasn't improved since she returned to the hospital. From the time that we took her home, Mia's right side of her heart (the working side) is even more dilated than the deformed non-working left side. From what I gather, they are keeping Mia stable via an orchestra of medications, constantly consulting many professionals and tweaking meds depending on her latest problems and reactions. We have been impressed time and again at the skill and wisdom of the nurses and doctors caring for her. The doctors say we will not be leaving icu any time soon, and after that last bout of drama, I (John) would just assume keeping her here anyhow just to be safe. Mia has been on C-Pap (breathing assistance) but gets breaks. According to Mimi, this device makes her look like an elephant because it connects to her face and nose and goes upwards like a trunk. I personally think it looks like that thing on that old movie "Alien" when it attached itself to that guys face and they couldn't get it off. I think Mia probably enjoys it about as much as if it were indeed and alien. She is sassy like her mom and sis and you should see the fight that this one month old puts up against this device. Also, since her heart cannot function well enough to pump the necessary blood to her stomach to digest food, they started feeding her today though an ND tube which bypasses the stomach. It is a small amount of food, but nonetheless it will get her digesting food. Apparently it is bad news if the stomach goes for a long period of time without digesting. This seems to be the same story with most of Mia's functions as a brand new body learning to live. I know they keep weening her from the breathing machine so her lungs can learn to breath and grow strong. One thing is certain. Mia is fighting with all that she has. The doctors tell us her ex rays and all info is pointing to bad news, but somehow Mia is getting decent amounts of oxygen to her extremities. We love her more than we can express. Thank goodness Mimi is as determined and as tough as she is. I was fine for the first month, but I have since discovered that I am about as tough as a swooning lady of the court when I am faced with each new dramatic twist in Mia's condition. We are grateful for all prayers and words of support. Without God's hand on our shoulders, and without all those around us acting as His angels we would surely have cracked by now.

A Brothers Love

The bedroom that will be for Mia upon her return has been undergoing a complete overhaul (thanks to Jo Dee). After the walls were painted it was time to put on the plates that cover outlets and switches. Ellie and Jensen have become very adept with a screwdriver and placed most of them. The last item was the plate for Mia's light switch. I couldn't find it for the life of me and took no notice of Jensen's concern at the time. Later that night I was tucking Jensen into bed and noticed an outlet plate hanging cockeyed on his light switch. It came to me in an instant. He had sacrificed his own plate for sis. He still couldn't find a switch plate, but the odd one would be good enough for himself. I love that he can just change the plates at will. I did notice that the plate in Mia's room was tightened to the extreme as it is all but snapped in half. What a good brother.

A blog for Mia

Over the past months our lives have been turned upside down to the degree that often we seem to lack the ability to do anything but the basics: Eat, sleep, care for our children, help Mia. Everything else has become unimportant, and even the simplest decisions have become real brain busters! (If you have asked our opinion on anything in the last while you know what I mean). We have been touched as there has been an outpouring of offers to help from all angles. Friends, family and from tons of people we barely even know, or whom we don't know altogether! Because of our lack of coherent thought beyond remembering to breathe in and out, we have been in awe at the ability and desire of those around us to sense what is needed and to make things happen without any direction from us! The dialog usually is, "How can we help?" We respond "I don't know what to say. Keep praying." The prayers have been felt almost tangibly.

A good friend of ours was looking for a way to help and had a great idea. She created a blog, and included a short summary of our situation and set up a means for anyone wishing to help out do so. We are truly grateful for the effort and thought that has gone into this. Already in just one day we have seen an enormous response. Thank you!

Five Wonderful Days

Here are a few pics of our time at home. This post will not have too many details until daddy can get to it.
Getting ready to take Mia home. Ellie is practicing being quiet while she sleeps- we'll see how long that lasts.


Daddy can't wait to bring home his little girl. We were so excited to take her home we left without a pager for when it was time to bring her back for a transplant. They decided to mail it to us instead.We made it home Wednesday around 2:00- the kids were waiting on the front lawn. When we pulled up to the house I was overwhelmed with happiness. Mia was hungry and crying when we arrived, and Ellie stepped on a rock trying to fight her way into the truck. All girls ended up in tears- all for different reasons. Happiness, hunger, and pain.

Let the mauling fest begin. "Can I hold baby?" is the only phrase we would hear out of their mouths for next four days. They were enamored with their sister, and wanted their fair share of holding time.

Ellie, long since bonded with her little sister- needed the most time reuniting with Mia.
Jensen was surprisingly good at holding her by himself.
Mia photo shoot. We gave her a bath and put her in a dress that Ellie wore when she was a newborn.
Holding onto Aunt Boonie's finger... so sweet!
Checking out the ceiling.
Big yawn- she is a big yawner- always needing a little extra oxygen!
Aunt Boonie and Uncle Carl were able to fly in for one day to meet little Mia. I am so glad they were able to be here when she was home- it was a special treat.

Mia was always wide awake and calm when uncle Carl was holding her. I was surprised how alert she was when in his arms. Kisses from Uncle "Ca-woah"

Mia in her bouncy seat- in OUR HOUSE!

Daddy must have thrown out our baby tub because when I went to retrieve it from the kids bathroom it was nowhere in sight. She fit perfectly into the sink for her first home bath.

Just a cute pic of her getting dry.


Nana spent a lot of time holding Mia as well. She was basically held during her time at home. You can see Ellie in the background- she spent most of her time waiting for her turn to roll around again.
Unfortunately, Sunday Mia went into heart failure and we rushed her down to the local ER. From there she was life flighted back to Children's. Today she had a line placed in her chest that will be there until she receives the transplant. It was such a blessing to have her home for the time we did. My heart is broken for my sweet little daughter- I just want to hold her and let her know how much I love her. For now I will be patient while she continues to fight.

Calm before the storm

Mia has decided that she prefers Helicopter to Ambulance. Yes that is right, we had to Life Flight Mia on Sunday night. Her heart just isn't strong enough to sustain her all by itself. She is now stable in the ICU at Children's Hospital. We did have a wonderful week previous to this though. On Wednesday July 30th we got to take Mia home. We truly had great joy as we were able to interact as a family again. The kids LOVE their sister. Mimi got to recoup a bit being home, and we all got to be together and hold baby whenever we wanted.
In order to come home, Mimi had to learn to administer all necessary medications. Two were taken orally and one via injection. We had to monitor her Blood/Oxygen saturation as well as her other vitals. We enjoyed 4 solid days together in our home. We also had Mimi's youngest sister Boonie in town along with her fiance Carl who the kids and I met for the first time. We all got to hold Mia for hours on end and made some headway on making up for lost time with our sweet baby.
On Sunday Mia started to spit up her milk and was acting a bit agitated. We decided to take her to Children's Hospital, but by the time we walked downstairs, her blood/oxygen saturation had dropped from mid 80% to 45%. We panicked and ran out of the house to go to Good Samaritan Hospital without even our shoes on! Since Mia is a heart patient and especially since she has a very delicate and specific problem, they didn't even know what to do with her down at Good Sam. They got her vitals to be stable (her blood sugar was at 5, and they got it bumped up to 105) but her breathing was still very labored. There wasn't an ambulance close by that was well enough equipped to handle Mia's risks so they sent for the chopper. I was thinking that "finally something good from this night, at least we get to right in the chopper!" Well, we had to drive ourselves up there. No parents in chopper. We actually saw them fly over us when we were on Hwy 167 heading northbound towards the hospital. he doctors informed us that she is suffering heart failure and needs more help due to the fact that her heart just cannot handle the workload. They intubated her to lighten the load of the heart by taking the work of the lungs. They are also medicating her to loosen certain parts of the heart and tightening others so that it will flex with less effort, and also the blood can exit the heart with less resistance. Our hope is that she will become stable enough to be able to remove the Breathing tube so she can be fully conscious while waiting for a heart. Our hearts are broken once again by this new chapter in Mia's journey, but we are eternally grateful for the time we got to have at home all together when she is so small and life is so new. For now it looks like we are back at the hospital. Mimi wanted to let everyone know that she loves all the work that has been done on the house. It looks great and she was able to enjoy it for the time she was back home gathering strength for the next challenge. I have marveled time and again at the strength Mimi has shown.