Home.

Well, last Monday we were just starting down this path. We are still just at the beginning of a long and certainly winding road but we have reached the first milestone. We are home, all of us. Kaya was discharged from the hospital this morning. Her appetite can only be described as ravenous. We are all so happy to have our little family intact and at home. Again we thank you all for your kind thoughts, words and prayers. It's been a rough week and we have a long way to travel yet. Within the coming month we have appointments with the Pediatric Surgeon from Primary's to look at the eventration in her diaphragm. We have an appointment to see the Pediatric Cardiologist to look at the ASD in her heart, We have to go see the Audiologist for her hearing loss in her right ear. Next is the big kick in the goners. The geneticist at UVRMC had a good look at her over the last two days. I think she was looking for an explanation for all of Kaya's problems and she found a hook to hang them on. The Dr. thinks she has several "Markers" for a rare but serious Genetic Syndrome (not Downs but with similar implications) She was basically looking at Kaya's entire body, face and her internal problems and piecing them together until she found a possible diagnosis. They took a blood draw this morning and it will be sent to the University of Chicago, one of only six places in the world that do this testing. The test results won't be back for 2 months so we get to worry. Even then the test will only show a positive if she has it but if the test is negative it still doesn't rule out the problem. The test misses the gene 50% of the time. So basically if it comes back negative we still get to worry our brains out for a few years while we watch her develop. IF she has it, it's a very mild case but even the mild cases seem to have very serious problems, so we wait and we pray and while we have her here, at home she is our beautiful little girl and we will cherish every moment. Your continued prayers and thoughts are very appreciated as we move along what may prove to be a VERY long road.

Dressed for the ride home.
Her eyes are all red and puffy again due to having an eye exam this morning where they clamped her eyes open and poured fluid in them.


Moose gets to hold her for the first time.
He's a defender of his little Sister. On Saturday Tiff was rubbing her feet and she started to squawk and Max piped up "Leave her ALONE mom!!"
She's in good hands

Day 5, We've moved

Today we all moved. Tiff got to move back home albeit temporarily since we have to be in the NICU for feedings. Kaya also made a move today. They removed the last line from her navel and she move to the b-side of the NICU. We still have a corner but now we have a window(into the hallway) so we feel like we've received a big promotion. Things have gone quite well today, Tiff has been feeding her and Kaya is slowly figuring out the process. Now she just needs to eat more. As far as problems go, we still have the eventration in the diaphragm. The pediatric surgeon from Primary Children's looked at the X-ray. They feel like it may need help in the future but for now we'll just leave it as it's not causing any problems. He wants to see her again in a month. Kaya also had her hearing test today and like her dad usually did on tests, she failed. They then called for a more sophistimucated(homer simpson word) test. The audiologist put some electrodes on her head to monitor brain impulses, then they put a speaker in her ear and tested the brain's response to sound. Her left ear passed, her right did not. The audiologist told me she has some minor hearing loss in the right ear that is likely due to some debris in the ear or some water behind the ear drum. He tested the auditory nerve and it was responsive so again, we come back in a month. Otherwise most of the problems have been resolved. We had a slight setback in the breathing department and she is back on a canula but they say it's nothing to worry about as it usually happens when they have to start nursing instead of just lounging around being lazy all day. Her eyes are still swollen and they want to make sure her lymph system is working properly. As I type Tiff is feeding her and she is eating like a champ. So all things considered it was another good day. The room we left for this one had two premature twin boys in it. They we're so small Kaya could have put some Sumo moves on them. I am so happy our little girl is doing so well and I feel so guilty as well. The other day the father and grandfather of the twins were in a panic attempting to contact the Bishop and then they gave the small boy a name and a blessing. I'm guilty of a little eavesdropping and I was amazed and humbled by their prayer. You never have to look far to see others who are suffering more than you are. We are so grateful for our families, for our two wonderful boys, and for all of you out there in cyberworld who have offered your kind thoughts and prayers. We pray that Kaya's progress continues and that we will be able to take her home soon.(Then the fun starts) That's all for tonight. See you all tomorrow.

Getting ready for some chow.

Spaceman Spliff getting her ears checked

Tonight...

Tonight we'll all sleep with a smile on our faces :)

More of the good, less of the bad.

The alcohol wipe they used to remove the mysterious alien marks on Kaya's head are some kind of medical miracle wipe. The problems are all going away on their own. Lungs are doing better each day. Food is being digested and amounts increased each day. The eventration in the diaphragm is still there but not causing respiration problems so the are just watching it. There were some things with the Heart echo called ASD Atrial septum deviation where basically the Atrial walls of the heart have not closed completely but they say it is common and not of concern. The Doc this morning even thinks the facial paralysis is beginning to diminish. All great things. So I asked if I could take home some of the miracle alcohol wipes for when she breaks her arm or some other injury, I can just wipe her with the "Healing wipes" and be good as new. They told me to take as many as I wanted.

Tiff also got to start trying to breastfeed her today. It's a slow start because for the first 3 days when Kaya was showing the signs of wanting to nurse they can't let her so she's a little confused but it'll all be good. She get's to try every 3 hours. They are also planning to take out the last line from her navel tomorrow and then they may move her to the other side of the NICU for babies without respiratory problems. After that it sounds like she just has to learn to eat regularly and we may get to take her home.

Tiff is doing well. She is a trooper and has been up and moving since the second morning. I think she's about done with the hospital but it looks like she'll be here one more night.

All our thanks to everyone for the thoughts and prayers.
We are so happy with the progress she has made and we look forward to being home in the near future.

A little time with the mommy.
Good good things.

What a difference a day makes...

Today started off good like yesterday and then it got better instead of worse for a change. The "Free air" outside the lungs has dissipated on it's own
The eventration (sp)? which was the diaphragm problem that almost sent us to Primary Childrens was not seen on this mornings X-ray as large as it had been. It will be watched but is not presently a huge concern.
Kaya is Breathing on her own, no tubes, no C-pap, no canula. Her breathing is good although her lungs are still a little cloudy with meconium.
The facial paralysis is likely a damaged nerve from being born and may never go away. Not sure how evident it will be.
All of these things were combined with some mysterious dots on her head. The dots were black and down both sides of her head in a symmetrical pattern and had the Docs completely baffled. They were thinking some kind of genetic disorder. Each of the NeoNat Docs had different thoughts. Possible birth marks, other things I can't pronounce. The Attending Doc this morning had been online on medical journals looking for answers and had been measuring the spots. We started to discuss the spots and I commented that it looked like someone had used a magic marker to spot her head for identification. The Doc laughed and said she also thought they looked like ink. Then she said "just for fun let's see if they rub off" she grabbed an alcohol rub and proceeded to rub off the strange genetic defects. I thought Tiff was gonna pass out, then she and the Doc had a little cry over it. Turns out that when they did the brain scanner for the seizures they had to mark her head, but they failed to wash it off, or communicate it to anyone else. So there you go, Occam's Razor says the simplest solution is usually the right one. Kaya is currently sleeping easily and has been eating (from a tube) and digesting well. We are extremely encouraged by her progress while trying to remain cautiously optimistic about the coming days. Our thanks to all of you who have kept our little girl and us in your thoughts and prayers, it's working.
And now for the pictures.


Sleeping peacefully
The tube is just a feeding tube

The obligatory pink bow.

I got to hold my daughter for the first time.
today it was a good day.

She even tried to open her extremely swollen eyes for her dad.
That's Daddy's girl right there.

Day 2, One step forward, 5 steps back

This morning before the C-pap went on.

Last night when Tiff and I went to bed we were very encouraged by Kaya's progress. She was off the vent, breathing on her own and getting rid of the rest of the junk in her lungs. This morning I went up to see her and she was doing well. I got pictures of her with just a canula in her nose. Went back with my dad an hour later and the neonatal Doc hit me with a laundry list of problems. They had to put her on a C-pap because she was having a hard time breathing. She has air that has escaped to the outside of her lungs through a small tear and is building in her body cavity, It's going to require a needle through the ribs to tap it and let it out. Sign this consent form. They later decided not to do it as the air pocket is shrinking. Next, partial paralysis on her face. Not sure why but maybe a nerve that got stretched during delivery. Next she has a body that is small. Head is normal size but body didn't get everything it needed from the placenta. Which then leads to her lungs and diaphragm. The diaphragm is not developed correctly on one side and may require surgery. Doc says he wants to review the x-ray with the surgeons at Primary Childrens and possibly move her there for all of these problems. Do you have any questions? I told him my brain was still back on the C-pap machine.
So there you have it. We have one very sick but very strong willed little girl. So this is where we are now at 5pm. The Surgeons at Primary's think the diaphragm problem may not be the whole problem with the lungs, so we wait.
The air pocket is shrinking, so we wait.
The facial paralysis may or may not ever go away, so we wait.
They want to send chromosomes to the lab to test for genetic defects, syndromes, that may be part of a larger picture that is causing so many problems, or it may just be that the placenta didn't do it's job very well, even though Tiff did everything right.
So we wait.
Tonight they are going to do a songram of her brain to check it out.
So we wait.
Then they'll sonogram her heart
so we wait.
Then at 8 they will take another X-ray of her chest to check the air pocket.
And so we wait.
From what I can gather we expect to be in the NICU somewhere between another week and a month. It all depends on how our little girl progresses. Currently she is sleeping soundly with her Cpap and her array of wires and tubes,
and so we wait.




On an up note Tiff did get to hold her for a minute.


Our plugged in baby girl.

Kaya Kinnerley Newton Day 1

We are rapidly approaching the end of one of the best and worst days of my life. Tiff was scheduled for a possible C section as Kaya has been breech for about 2 weeks. We came in at 5am. They prepped her for a C section and then at 7:15am the doc checked and she had turned, put her head down and was getting ready to join us. Fast forward to around 4pm the doc came back, unhappy about the progress and decided to do the C section. When they broke Tiff's water it was green so they knew Meconium(Poop) was present and had the NICU respiratory team standing by to suction Kaya. The C section went well but once she was out they found she had aspirated a lot of meconium. I watched as 5 then 7 then 11 people worked on my little girl. They had to intubate her. It was very touch and go for a while, I felt like I was in a scene from ER. Then once in the NICU she started having what they thought were seizures possibly due to blood on her brain or oxygen starvation. Right now that has ceased and may have just been normal infant reaction to life on the outside. It is now 12:15 am and they just pulled her off the ventilator. Things are looking slightly better, but now we have the possibility of infection due to the meconium she inhaled. Tiff is recovering well and I just wheeled her up to see Kaya.
I have no idea what time she was born and all the weights I heard during the chaos were in Kilos but they tell me she weighed in at 5lbs 3oz
Our little girl is alive and fighting.
Prayers, kind thoughts, and good vibes are welcome offerings.

Our little Girl


Proud Brothers