Baby's First Christmas 2012

We started baby's first Christmas traditions on Christmas Eve when Evan got to open his first present--pajamas!--at the Packard Christmas party at Grandma and Grandpa Packard's house.

Evan and Uncle Austin show off their new pj's

 Evan woke up around 6:30 on Christmas morning, eager as ever to open presents.

We tried to let him unwrap presents on his own but he kinda failed so Mommy and Daddy helped him. Let me note here that I only bought Evan one present for Christmas: a rubber ducky. Let me also note that Evan had over 20 presents to open Christmas morning. He has very generous uncles and grandparents who are to blame for that. Consequently, present-opening took quite some time.

Really? A book for Christmas?

This is the point where Evan was so exhausted from opening his pile of presents that he sorta fell asleep. We let him open the rest with his eyes closed. His Giants and 49ers gear is from his Daddy and Uncle Josh. They must not know that Evan actually likes the Nationals and Redskins, like his Mommy.

Evan managed to wake up for a brief appearance on Skype to meet Uncle Nate who is in Bulgaria. Afterwards he tried to Skype with his Grandma Hudson to tell her about all the presents he got but he was a little too sleepy.

 We don't spoil our child.

Merry Christmas

Merry Christmas Everyone!

In lieu of a letter repeating the news and events you've read from us all year long, we mostly just want to express our gratitude for the love shown to us this year by so many people. In January I don't think I could have imagined a more unexpected year with so much heartache and so much joy from the hardest times our family has experienced so far. Thank you for your encouragement, prayers, cards, gifts, emails, diapers, and blog page views :)

When all is said and done, Isaiah and I feel we've ended this little journey closer to each other and closer with the Lord. My testimony of prayer and my faith in my Savior have been multiplied. I believe our Savior Jesus Christ lives and He loves us. I believe there is no more important knowledge than this to have as we begin raising our children and growing our family. We know God has been with us and has shown us many miracles in 2012 including blessing us with Evan. Here's to a less-eventful but equally testimony-strengthening year in 2013!

Merry Christmas!

Love,
Isaiah, Jenna, and Evan Hudson

 

Most believable Santa. Ever.

I'm the happiest Christmas tree! Ho Ho Ho! He He He!

Try Again

Bath #2

We bribed Evan to not cry during his bath by telling him he'd get to wear his new bathrobe afterwards if he was a good boy. It must have worked because there were no tears shed and he actually ended the bath cleaner than he started.

Cousins

Evan and Aisley met this week. Their due dates are 16 weeks apart, but Aisley came late and Evan came early so they're only 9 weeks apart. Aisley is longer than Evan, but Evan beats her out on basically every other size measurement. He's no longer a preemie! However, Aisley beats Evan on smiles and giggles. When she gets in a laughing fit she'll laugh at just about anything you say and it's hilarious to watch!

Aisley: Hey Evan, give me some attention!
Evan: Umm...not interested

Evan: Aisley, lighten up! Watch me dance!
Aisley: We're certainly not in Boston anymore.

Austin: Babies love me.
Evan: Waaahh!

 

Grandma: I'm in heaven!
Aisley: I'm bored out of my mind!
Evan: I'm chubby!

Quick Health Update

I took Evan to his head ultrasound today. Long story short, no shunt yet! His ventricles have remained stable and, dare I say, maybe even shrunk a little bit?! We'll (always) continue monitoring and take him back in 2 weeks for another check-up and ultrasound. It's good to know he's on a close watch with the neurosurgeons at Primary Children's.

We also got really positive news from Orthopedics today. The doctor checked out Evan's past hip ultrasound and confirmed his hips look like they're in place. He felt Evan's hips and said they feel pretty secure now so I imagine we won't have any problems with them in the future. He also checked out Evan's feet and said he thinks they are positionally clubbed and can be fixed just by stretching them every day. He doesn't think they'll need casting or surgery like we expected. He also said this is the point where parents usually ask, "What will my child be able to do when he's 15? Walk? Play sports?" He said the biggest indicator or future mobility is the quads, and Evan's got great quads! The doctor said it's not a matter of if he can walk--the only question is if he'll need braces to help him. From an orthopedics standpoint Evan looks awesome!

When we got home from the doctor's I took off Evan's wound dressing and his cardio-respiratory monitor leads. For the first time EVER (except the first minute of his life) he was an accessory-free baby. No gauze, no tape, no wires, no tubes, no nothing. It was an overwhelming great feeling to hold just my baby.

Then I got a call from the Pulmonologist. We've been waiting for his call with the results from Evan's sleep study (when he was hooked up to a pulse oximeter to track his oxygen saturation while he was off oxygen for a night). We wanted to be justified for keeping the oxygen off even after the study was finished. He said the results were...slightly abnormal. Oh boy. I guess for 4% of the time Evan's oxygen saturation was in the 70's and 80's. That's just bad enough that the doctor doesn't feel comfortable recommending Evan to be off oxygen. He wants us to keep him on it and repeat the study in early February. I was really really disappointed. I'm glad, though, of all the negative news we could've received today, that the oxygen was the worst of it. Oxygen is just temporary--even if it's a few months longer than anticipated. It's just ironic to me that we were concerned about Spina Bifida but the only thing we're dealing with right now is oxygen--and that isn't even related to Spina Bifida.

We celebrated Evan's last moments of freedom by taking his first ever real bath. He hated it.

Bein' a Mom

Sometimes Evan doesn't seem like a human being. He's just an eat, poop, and sleep machine that I try to keep oiled and running smoothly. If it works well then I've succeeded. Then sometimes when I look at Evan the moment transcends what is actually happening and I feel like I can glimpse his soul and his emerging personality, and boy is my son hilarious! He makes the funniest expressions and my mind imagines what he would be saying and I just start laughing.

Tomorrow we're supposed to get a call telling us whether we can take off Evan's oxygen or not. Don't tell the doctors, but we already took it off almost a week ago. There's a lot of baby things that probably would have seemed inconvenient or hard had we not experienced them with oxygen on top of it. For example, carrying a car seat is hard. Carrying a car seat and an oxygen tank is even harder. So now that we only have to carry the car seat we love it!! It's so simple! Another example: Dressing a newborn is hard. Dressing a newborn from the bottom-up to avoid the oxygen tubes around his head is even harder. I thought pulling his clothes over his head would be a nice change, but his 99th percentile head is actually not that easy to pull clothes over, so I'm sticking with the bottom-up method for now.

Speaking of his big head (no offense, Evan), tomorrow we're going to get another head ultrasound to see if Evan's ventricles are getting too large for him to handle. If they start affecting his behavior then we'll look into getting a shunt in his brain. We were initially scared about getting a shunt, but now we realize that it's scarier if he needs a shunt and doesn't get one. We've noticed a few of the signs for needing a shunt including increased fussiness, changes in his sleeping pattern, sunsetting eyes (I'll try to get a picture of this), and increasing head size. Most of these signs can be explained away by other things and could just be "normal baby things," but since we've seen multiple signs we're a little concerned which is why we're having the ultrasound done. We just want Evan to be the baby he's meant to be.

Don't Cry Over Spilt Milk

Tonight I spilled a bottle of my pumped breast milk and didn't cry.

Now I will share a previously-untold story to show why this event was significant.

Date: Saturday, October 13, 2012
Time: Late at night
Place: Family house in San Francisco
Event: Phone call with Isaiah

Me: (bawling) Isaiah, the WORST THING EVER happened to me today.
(pause a moment to think about what is running through Isaiah's mind at this point. Our 5-day old baby is staying in the NICU.)
Isaiah: (very concerned) What?
Me: First, you had to leave today. But that's not the worst part. After your family dropped you off at the airport they came to the hospital to help me pack my things to take them to the family house. They had to leave before I was discharged so they took over my luggage and left it in my room there.
Isaiah: (confused) Was that the worst thing ever?
Me: NO. It gets worse. I wasn't discharged until after 5 so I was sitting around with nothing to do, just watching TV in an empty bedroom waiting for the doctors to give the discharge order.
Isaiah: Was that the worst thing ever?
Me: NO. The doctor came in to do a final discharge exam and I was feeling all emotional and stressed out about finally leaving the hospital so I was just crying to her and she probably thought I was crazy. Then my nurse came in and I was still emotional so I was just crying to her and she probably thought I was pathetic too.
(pause)
Me: (rambling, and still bawling) When I was finally discharged it was after hours at the pharmacy so I couldn't pick up my pain meds. The nurse gave me one pill before I left but I won't have anything all night and I don't want to move because it hurts and that made me cry. And then I had to leave Evan in the NICU and I won't get to see him until tomorrow morning and I didn't have enough milk to leave him so he might have to have some formula tonight and I feel bad so that made me cry too. Then I got on the shuttle and the driver tried to talk to me but he just made me cry even more and then I finally got to the family house and I was hungry but I don't have any food here but then there was food left in the communal fridge from a meal some volunteers brought in. It was so nice but then that made me cry even more that people are so nice and the family house is really nice but also since it's after hours there was nobody here for me to rent a breast pump from so I had to use my hand pump. It was hard and my hand hurt and it took forever but then I had a totally full bottle and then when I was almost done it dropped and SPILLED...all over the bed and on the ground.
(pause while I start sobbing hysterically)
Isaiah: (hesitantly) Was that the worst thing ever?
Me: (upset that Isaiah didn't see the enormity of the tragedy that just occurred) YES!! It made me so sad and it took SO long to pump and my hand hurt and I had a full bottle and I'm not going to have enough milk for Evan tomorrow and it's the WORST!!
Isaiah: (very relieved nothing worse happened and trying not to laugh at his hormonal, emotional wife) Well don't cry over spilt milk!

Of course that made me cry even more! It was a long, hard night where I felt like the worst mother ever for leaving my child and for not keeping up with Evan's milk needs. Fellow beginning-breastfeeding-mothers will sympathize with me here. I figured I'd laugh about this experience eventually and tonight when I spilled that milk I did laugh at myself. And I didn't cry. This story may make me seem pathetic, I realize, but I hope to show how far I've come as a breastfeeding mom. I've got milk aplenty and even if I didn't I know my child would survive with a bottle of formula.

The end.

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

Ninja

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.

D-Day

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

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.]

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.

Discharged

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!

Surprise!

We're home!
(details to come)

Evan's Heart and Hip

Here I am complaining about my situation, and then I take a look at my son:

EKG

Echocardiogram

Pavlik Harness

I'll explain.

Recently Evan started having episodes of supraventricular tachycardia (SVT) where his heart rate gets really high--like 280 beats per minute. At first they were sporadic, short-lived, and he came out of them on his own. The docs tested his electrolytes and gave him an echocardiogram and EKG. Everything came back normal so they decided to postpone treatment. Then when I came in 2 days ago I found out he had a 15 minute episode of SVT and didn't come out of it until ice was placed on his forehead. All day he continued having short SVTs. His nurse had to encourage him out of them with ice or by shoving a tube down his throat. It was not looking good. She called in the Docs. They called in Cardiology. They hooked Evan up to a 12-lead EKG to track one of his episodes. They did another test of his electrolytes. Everything still looked normal except that he's still having these SVTs. The docs decided to start Evan on a heart medication and he has not had a single SVT since.

Next:

Evan has a dislocated left hip which is fairly commonly associated with Spina Bifida. He gets to wear this lovely skydiving suit that puts his hip closer to the socket in hopes of relocating the hip. Right now he wears it for 12 hours on/12 hours off. When we go home he'll wear it for 22 hours a day. When he's 4 weeks old we'll have a follow-up hip ultrasound to see if the hip is relocated. If it's not relocated, Evan will get a more rigid cast of some sorts to make sure his hip is in place correctly. Super annoying, yes, but it's nice that this is a fixable problem and it's definitely better to fix his hip while he can't walk anyway.

The good news is amidst all these new complications...Evan is eating!! No tube feeds for almost 2 days. Go Evan!

The NICU

Here's a typical post I might write about our experience so far in the Neonatal Intensive Care Unit (NICU):

Evan is progressing, even if it's slow and some days are a step back. When he was first born he only ate for about 5 minutes before falling asleep but now he usually lasts about 15 minutes. His record was 25 minutes--what a champ! The nurses are so encouraging with each feeding and they give us hope that some day we'll go home and forget this whole experience. Sometimes its annoying when the other babies in Evan's room are crying and he's trying to sleep but it's also nice to share a room with other parents who can relate with my experience. All of our babies have their own challenges and we all work together to stay positive. I think Evan has the most doctor visits. He is followed by urology, neurology, neurosurgery, neonatology, cardiology, othopediatry, occupational therapy, physical therapy...

and yet the only reason we're staying in the NICU is because he won't eat on his own.

Here's how I really feel about the NICU right now:

It really stinks to be a brand new mother who is away from her husband while trying to raise her child under the control of demanding doctors and nurses. I wish I could hold my son without fear of pulling off the wire monitors he's connected to. I feel badly when Evan is subjected to seemingly constant pushing and rubbing and blood draws. I cried the first time I had to change the dressing on his back because the tape was pulling his sensitive skin and he was squirming, kicking, and crying. It pains me to leave Evan at night, especially when he's laying in bed with his eyes wide open. I don't trust all of the nurses here. I wish I had control of my son's care. I don't always have a positive attitude about my trials. Right now I just wanna go home.

Mr. Evan

Evan and I had a little photo shoot with Jana Eliason today. She did SUCH a great job helping us document this precious time while Evan is a newborn. He is definitely his father's son, don'tcha think?