Monday, November 26, 2012

Evan's Blessing

Yesterday Evan was given a name and a blessing at church. Amongst other things, Evan was blessed that, through his life, others may come closer to God and know of God's love. Some time while I was pregnant with Evan I read the story of Christ healing a blind man (John 9). The disciples and Jesus passed by a man who was blind since birth. The disciples asked Jesus who sinned--the man or his parents--and caused his blindness? Jesus says, "Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him."

I've been asked how Evan got Spina Bifida. There are still a lot of unknowns about the cause of Spina Bifida but it has often been linked to a deficiency in folic acid. The truth is I've felt a lot of guilt because I got pregnant quicker than anticipated and had just started taking prenatal vitamins. I'll never know if that is why Evan has Spina Bifida but I do know that God knows Evan and Evan is exactly who he is supposed to be. I have faith that, through Evan's challenges, others have and will continue to see miracles and draw closer to God. Evan is a little miracle.

Evan's Great-Grandpa Packard, Great-Grandpa Garrett, Grandpa Garrett, Daddy, and Grandpa Hudson

Monday, November 19, 2012


This is how he looked when I put him into bed,
 This is how he looked when I checked on him later.
I should probably raise the crib side and swaddle him a little better next time.

Sunday, November 18, 2012


Today is my due date. I can't imagine not knowing this boy until now!

Evan is 5 weeks, 5 days old.
He weighs 9 lbs. 11 oz. (as of Thursday)
He is 20 inches long.
He wears size Newborn clothes.
He just graduated to size 1 diapers, though they're still a little big. (When he's 16 he'll probably love that I included this detail.)
He screams like a baby when we change his diaper.
He doesn't cry otherwise.
He eats 4-6 oz. each feeding, about every 4 hours.
He is easy to burp and can burp quite loudly.
He loves car rides.
His hair is ridiculously curly when it's wet.
He is the cutest baby ever!!

Evan's daddy likes to make sure he's all wrapped up before we go outside or go into public

Wednesday, November 14, 2012

Surprise for Me!

Some of you might be interested in seeing THIS:

When I got home from San Francisco we walked in the door carrying much of our luggage. The lights were off but I looked ahead and thought I saw a piano. I looked again to make sure I really saw a piano. The lights turned on.

Me: Is this ours?
Isaiah: Yes.
Me: To keep?
Isaiah: Yes.

And then I cried. And sometimes I still cry thinking about how nice people are!

Thank you so much to everyone who contributed to this beautiful surprise for me. I understand it started with my thoughtful husband who wanted to do something nice for my return from surgery and had been saving money for a piano (without my notice). I also understand there were some very generous contributions made from family members so Isaiah could pick a nicer piano than he planned on and a nicer piano than I ever imagined I'd own. I love it! Thank you, thank you, thank you!

[One benefit of my baby growing up in the NICU is he can sleep through almost anything, including my piano playing.]

Friday, November 9, 2012

One Month

Happy 1 month birthday Evan!

I think Daddy likes having Evan home
I thought the harness would limit cuddle time but Evan has proved me wrong
Evan and Ben. Ben, the oxygen.
Evan rides on top. Ben rides on bottom.
Rolls on his arms and a double chin. Way to plump up, little preemie!

People keep saying, "It gets easier." I don't believe them. I don't think it can get easier than a newborn who sleeps 4 hour stretches (and would probably go longer if I didn't wake him up), who doesn't cry much at all, who loves to cuddle with his mama and fall asleep on his daddy, who is content on his back, side, or belly, and who looks as stinkin cute as my baby does. It doesn't get easier than having a husband who wakes up to help with feedings in the middle of the night. It doesn't get easier than having delicious, home-cooked dinners (and desserts) brought to you all week. It doesn't get easier than being together with our family in our home. Seriously, I have it all.

We celebrated Evan's 1 month birthday by going to Spina Bifida clinic at Primary Children's Medical Center in Salt Lake. LOTS of good news...

Evan still doesn't look like he needs a shunt.
Evan's left hip is relocated so we will NOT be harnessing him for the time being.
Evan has beautifully functioning kidneys so we will NOT be cathing him for the time being.

To be honest, these are things I haven't even been praying for because I didn't really think we would have such good outcomes. I figured I couldn't pray away every trial--some things we'd just have to deal with. But everything seems to be functioning or improving and I feel like someone out there with some serious faith is offering some extraordinary prayers and causing some miraculous blessings for us. Maybe it's Evan. He's always praying.

Wednesday, November 7, 2012


In the NICU I constantly felt like Evan and I kept taking two steps forward then one step back. We finally took our third step towards home about two weeks ago.

Evan was struggling to maintain the stamina to eat his full feedings. He had a great "suck" but simply lacked energy. You can't teach stamina. "You just have to be patient," I was told. But I wasn't good at being patient anymore. On Tuesday (the 23rd) we called in the big guns to help us out--Nora is her name. She's an occupational therapist. She came to Evan's bedside for his 3:00 feeding. She laid him in bed and propped his head up with blankets. She put the bottle in his mouth, rubbed his head, and stroked his jaw. For the first time ever...something clicked in Evan's body and he drank the whole bottle! Following Nora's model I fed Evan the whole bottle at his 6:00 feeding! All through the night Evan drank the entire bottle at EVERY feeding! All in a day he learned how to eat!! Now Evan had to prove he could gain weight without having any food through his tube, which would take a few days. I felt on edge at every feeding knowing the importance of Evan eating on his own. However, we had taken a step forward.

With our biggest challenge hurdled, plans started rolling to get us home.

Still on the agenda before leaving:

1. Brain and spine MRI
2. Car seat test
3. Altitude test

1. On Thursday Evan had his brain and spine MRI. Although he already had head ultrasounds done and his head circumference was measured every day, the MRI would give the doctors a better idea about how Evan is handling the extra fluid in his brain. Evan couldn't eat for 4 hours before the MRI and was sedated during. He came back looking rather pathetic. It took him a while to get back to eating again (one step back) but the MRI results showed nothing significant and at least no urgent need for a shunt (one step forward).

2. Next Evan had to prove he could sit in a car seat for at least an hour while keeping up his oxygen levels and breathing. We rolled up two small cloths on each side of the car seat and left a gap in the middle to keep pressure off Evan's back wound. He passed the test with flying colors! Thank goodness! (one step forward) (Otherwise we would've gone home with a car bed--NOT very convenient.)

3. Another test Evan needed to pass was an altitude test. Although Evan didn't have a problem with breathing in San Francisco (sea level) we had to test his ability to breathe in Utah (about 5000 ft. above sea level). The pulmonologist put a mask over his face and connected it to this giant oxygen tank. Slowly she lowered the level of oxygen he was given from 21% to 20...19...18...and that's when the apnea started; Evan's respirations began to slow down and have long pauses. This didn't mean we couldn't go home--it just meant we needed to go home with oxygen (one step back). Here at home Evan has a little oxygen tube until his lungs can adjust to the air here in Utah. The doctor estimated he'd need it less than 6 weeks. Don't worry--the oxygen tanks we use are MUCH smaller than this one:

With these tests complete the plans for discharge continued to progress. Evan still had to prove he was stable until the following Tuesday--our estimated date of departure. Actually--the plan was for Evan to come to the Family House with me on Monday. Then we would have a urology appointment on Tuesday and leave for home after that. At least this was the plan up until Monday. Then we took another step back.

On Monday morning I found out Evan had tested positive for some bacteria in his urine on Sunday afternoon, but afterwards tested negative at 10 pm Sunday evening. He needed to go 24 hours testing negative before he could have his Tuesday urology appointment so I wouldn't find out until 10 pm Monday night if his test was negative and if we could actually make our appointment and go home. Since he would be in the hospital on Monday now and one of the neurologists thought his head was growing too quickly, the doctors ordered another head ultrasound. This would also need to be stable in order to leave on Tuesday. On top of all this, Evan had a day of weight loss. He needed to gain weight on Monday night in order to leave on Tuesday. There were a lot of things pending now. I was glad I hadn't told people we'd be home Tuesday because now I wasn't so sure.

First was the head ultrasound. It turned out, once again, that everything was stable. His head is growing but is following the normal curve. (one step forward) Next was the big weigh-in. Evan gained weight! (another step forward) Now I had to wait for 10 pm and hope that no bacteria had grown. I went to the family house and got on Skype with Isaiah. Just after 10 I got a call from our doctor: No bacteria for 24 hours! We could go home! Not until this point was I sure enough, but now I was ready to buy a plane ticket and pack up to go! I called my in-laws to give them the final "go-ahead" to pick us up on Tuesday morning.

On Tuesday I picked up Evan's prescriptions, got our final discharge information from the nurses, signed all our paperwork, disconnected Evan's monitors, and let the hospital with my baby!

The best part of the whole day was picking up my son (JUST my son--no wires, harness, IV, tubes...) and walking around. Once we got to the airport, which is another story, I had to put the oxygen tube on his face, but for just a few hours I got to enjoy holding just my son. Some day soon Isaiah will get to enjoy that feeling too.
He's so tiny! And so cuddly!

Thursday, November 1, 2012