Hello Snow

Introducing Arctic Explorer Grayson! Made in a limited edition of 1, he is ready to brave the coldest temperatures of the far north. Or at least the front yard. For about 10 minutes.

Hello Santa

Goodbye Kitty Colfax

Colfax passed away yesterday morning. This wasn't unexpected, but we will all miss her a lot. I had suspected that she had a brain tumor early in October and she had been blind for about a month. Tony and I were getting used to being seeing eye people for her, but felt bad when a paw would occasionally end up under one of our feet. We were in Indianapolis visiting Grayson's specialists on Thursday and when came home Colfax was repeatedly seeking out corners and then becoming stuck in them. She had the first seizure about 10:00 that night. I took her to work with me yesterday morning and placed a catheter so that I could give diazepam to calm the seizures. She passed away in between seizures without ever regaining normal consciousness. The tumor was underneath the left side of her cerebrum. It's amazing that through the whole process she became more social and more gentle. The house is much quieter without her.

Thanksgiving

Happy Thanksgiving! We hope that your meal is tastier than rice cereal!

Tube is out for good (we hope)

We have been hopping lately and haven't had a ton of time to catch up, but there has been a lot of good, a little bad and some rare but serious ugly the past month or so. We started weaning Grasyon off of his tube after his Halloween visit with Dr. Escobar (what a great treat!). The trick was that as he spent more time off of the pump, the flow rate had to be higher while he was on it and this lead to vomiting whenever his position changed. So, there was spit up or vomit after the first diaper change of the morning, spit up or vomit after swinging or sitting in the high chair for a while and spit up or vomit around bed time. It was very frustrating when Grayson vomited just after a nice bath. However, when the pump wasn't going Grayson discovered hunger and that hunger can be alleviated by eating! So now he really does like to eat!

On the 9th of November, Grayson pulled out his tube again, which created the ugly. The ER staff knows him on sight now and fortunately he pulled it out at daycare about 12:30 so I was able to get him in during the day. Replacing the tube only took 3 hours instead of the usual 6. For the first time, Grayson got a bloody nose as the tube was being replaced (this is part of why I don't put it back in myself). It had stopped by the time I traded off with Tony, but when I got home that night the little guy looked like he'd been in a prize fight. Blood under the tegaderm, blood on his eyelids, blood on his jacket, blood on Tony's shirt. Grayson had rubbed his face on Tony's shoulder as he often does when he's sleepy and the nose bleed had started again. He felt fine, but I couldn't stand looking at my baby with blood on his face. Any mother-toughness I had managed to cultivate was gone until we had changed the tape and cleaned his face. So, that's the ugly.

Last Wednesday the tube came out again. Dr. Escobar had given the OK to try 24 hours off of the pump the day before, so we decided to leave the tube out overnight and see what would happen. My part of this decision was largely influenced by the nose-bleed the week before. Grayson chugged! He didn't necessarily take a lot at one time, but he wanted to eat. So far the tube has been out for almost a week. I'm a bit worried that he might be losing weight and I don't know if we'll be able to leave the tube out, but he's been a pretty happy baby this past week. He's been sleeping without snoring, he's still had some vomiting but he eats right after, and he's having a great time practicing standing up so I'm really hoping that the tube can stay out.

Fire in the sky

I just wanted to share last night's sunset. We're not having fires here in Indiana, but you might have thought so.

Friday night excitement

Last night as I was getting ready to leave work I followed my normal routine and called home to let Tony know I was on my way. Grayson had been having a lot of cranky afternoons, so I like to let Tony know that the cavalry's on the way. HIs response,"You might as well meet us at the emergency room, Grayson's pulled his tube out." We've been through the ER tube replacement routine before, so I stopped for Taco Bell and drinks on my way. Grayson was a very happy tubeless boy when I arrived and a very unhappy boy with a brand new nasogastric tube when we all left 5 hours later. However, he has suddenly decided that a bottle may be a worthwhile source of nutrition after all. Maybe it was experiencing a stomach that was truly empty, maybe having the tube end in the stomach rather than passung through to the jejunum is an appetite stimulant, all I know is thst for the first time weeks he's had real interest in getting nourishment from something besides his tube. I'm going to offer another bottle in a bit and see how he does.

Going to Jail

Next Tuesday I'm being Locked Up for Good for our local Muscular Dystrophy Association. Grayson doesn't have muscular dystrophy, but it seemed like a good opportunity to give a little back since we're lucky enough to have him home and doing well - almost up to 12 pounds now! If anyone would like to help me raise bail I'd appreciate it.


No worries if you're not interested, just thought that I'd put it out there.

Bonding with Colfax

A boy and his cat, bonding.

The Journey Home

Today's adventure (sorry about the rotated pictures, it's late, we started early and my skilz are not mad) :

Leaving the hospital!

Not terribly thrilled about the car ride

Ahh, my swing.

We are all happy to be home!


No more hospital beds for Grayson.

Grayson is happy that he might be coming home this weekend. We are too!

New Hope

Grayson has been at St. Vincent's (now Peyton Manning's Children's Hospital at St. Vincent) for about two weeks now. He's been prodded and poked, scanned inside and out and had tubes and cameras shoved though every orafice. We've traveled down the roads of fear, panic, relief, hope, dashed hopes and frustration. But something has finally come back that all doctors involved agree is probably a big part of the problem.

A stomach biopsy came back showing elevated levels of some long complicated science-y word that point towards allergic reations occuring in is GI tract. So they are switching his formula (going directly into his intenstine via nasal tube) to a hypo-allergenic variety. They will check again in a few days to see if that makes a positive change.

He will likely still have to do a few weeks of therapy to help overcome his eating issues. He's spent so long associating eating with discomfort that he'll need help getting past that into some normal feeding behaviors. But they have a program that will come to our house for that.

He is looking very good -- up to 9lbs. 5oz., good color and wide, alert eyes, occasional smiles. There is a chance we could take him home this week (still on feeding tube, but still - home) until they are ready to recheck or while the results are out.

In other health news - I am sick as a dog. Sore throat. Phlegmy cough. Runny, congested sinuses, and as of last night, so nasty red-eye swelling and mucus secretion. So sadly I can't feel comfortable interacting too much witch Grayson, dispite my face mask and constant handwashing. Still it's nice to see him.

Rug pulled out

We're going to be pretty incommunicado for a while. Grayson started vomiting Saturday night so we rushed him to the emergency room. Being a holiday weekend, we didn't get to touch base with our family practitiioner until Tuesday, by which point we had both been vomiting and didn't want to go back to the hospital and expose the other kids in pediatrics. Since we'd been planning on a trip to Indianapolis for a more detailed workup, Grayson was transferred down to Saint Vincent Children's hospital Tuesday night. We followed Wednesday. We know that he has bad gastroesophogeal reflux, so basically it hurts him to eat. Today he's getting an MRI and a bone scan. He had a CT done yesterday. His poor little feet and hands are bruised from blood draws and he's being fed through a nasogastric tube. Unfortunately, he's vomiting up some of the high calorie formula if it isn't diluted with pedialyte. The neonatalogist/pediatric geneticist doesn't think that whatever the problem is is fatal, but we don't have a name for it yet.

Still, after almost four days without one, Grayson smiled for us before we had to come back home yesterday and he smiled twice for my mom, who's there until we can get back tomorrow.

Sweet Relief

We haven't posted about this, because it's been very frustrating, but we'd been living with The Incredible Shrinking Baby and then The Incredibly slow growing baby for the past couple of months. Finally, though Grayson's weight is in the positive column! All babies lose weight at first, but Grayson went from his pleasantly plump birth weight of 9 pounds 2 ounces down to 7 pounds 12 ounces. Then, as he grew in length, his weight would go up a bit and then go down a bit. I've been nursing and pumping and supplementing and trying soy supplement (resulting in two days of bad constipation). We've also been trying to keep him as calm as possible, realizing that every screaming fit burns precious calories. Finally, last week he hit a peak of 8 pounds 12 ounces. He also started smiling more and being a bit less fussy. Today, after a week of both parents and a grandma encouraging eating Grayson weighed in at 9 pounds 3 ounces. So, for the first time ever, Grayson's up above his birth weight! He also rolled over for the first time this week, but that single ounce has really made all of us happy. Once he reaches 10 pounds, we'll even let him go road trips again.

Sleepy time

They're just too cute together!

Grayson's big photo shoot

Grayson was going to get some super-fancy photo-stylin' done this weekend -- but one of Daddy's co-workers went on vacation and took the super-fancy company camera. In the meantime, we can throw up a couple inferior quality photos by special request.

We think that he's gorgeous!

Here are some more Grayson pictures. He's starting to gain some weight back, but he's still a tall and skinny boy. He has recently learned that he does not have to sleep at night. We would like to convince him otherwise, but he really is the one in charge here.

Grayson pictures

Hopefully these will work.

One week later

Sorry that it took so long to update. This week has been a blur.

It really was labor and I skipped over the contractions every 15 minutes and the part where you go to the hospital when your contractions are every 3 to 4 minutes apart for at least an hour. When we left for the hospital at about 2:00am the contractions were 2 minutes apart and lasting 45 to 50 seconds (so I got about a minute breather in between). Unfortunately, when the resident checked me I was 20% effaced, but not dilated at all. So, we hung out in the triage room on the fetal monitor for a couple of hours and I walked around a little and breathed through my contractions since the pain was only about a 2 to 3 out of 10. It did get up to a 4 by the time the resident checked me again at 5:30am, but breathing was working well.

Still no progress as far as dilation went at 5:30am. The resident called Dr. Byrne and she said that we could either go home or wait until she came in about 7:30 or 8:00am. We live very close to the hospital, but at that point it was easier to just stay. Thankfully, they moved us out of the triage room into a labor room with a better bed and a chair that pulled out so that we could try to sleep. My last day at work had been Saturday morning, so by this point I'd been up for about 22 hours and Tony wasn't far behind me since he'd installed the floor in the kitchen that day. I don't feel like I slept, but I must have for at leat half an hour. The contractions got up to a 4 to 5 on the pain scale. I could still breathe through them, if I knelt down on the bed with my head on my hands or I stood and leaned forward onto the bed. The anesthesiologist, Dr. Brzkowski (I'm certain I spelled it wrong) actually came in before Dr. Byrne, just to touch base on anesthetic techniques in case a c-section would be needed.

Dr. Byrne came in and checked me about 8:30am. 2 centimeters dilation (not a whole lot, but progress) and 80% effacement. We discussed options and risks, given the baby's size, and decided to wait and check me again in a few hours. If I was progressing, great. If not, then we would skip cervical softening and pitocin and just move to c-section. I was allowed to move around the room, an IV of lactated ringers was started and I was officially admitted to the hospital. The next few hours were actually OK. Breathing did the job. The contractions did get stronger, but sitting on a birthing ball helped a lot. The rocking chair and sitting/laying in bed did not. Walking was good, too. We listened to cds and played Blockus and waited for our parents to arrive. I didn't want to risk slowing anything down with an epidural. The monitors looked good except for three instances when the baby's heart rate dropped along with or right after a contraction. The nurse, Chris, told us they were also monitoring and not to worry just yet. At 12:30 Dr. Byrne came back. There had been no progress. We opted for the c-section rather than risking further distress or a shoulder dystocia with pitocin.

Grayson Christopher was delivered at 1:52pm on Father's Day, June 17. The cord was wrapped twice around his neck and he had meconium, but he was still able to let out some good yells and his APGAR scores were 7 and 9. Tony cut the cord and even peeked over the sheet once during surgery. Dr. Brzkowski used a spinal block with bupivicaine, fentanyl and morphine and it worked beautifully.

Having a Baby

This may be a false alarm, but I certainly can't sleep through the action going on in my belly every minute or two. Not excruciating yet, but probably time to go soon.