Saturday, November 28, 2009

Worth the Wait!

James came home from the NICU last Tuesday afternoon, after 11 weeks of captivity! :-) Here are some of our last moments in the NICU before taking James home, including photos with some of our favorite people at Emanuel Hospital.

(As we are discovering, even though all the shirt-and-pants sets are adorable, they just don't work on a baby who's got so much going on in the tummy area...everything starts flopping around, as you can see in this photo! The last thing we want is for a bag to get punctured or a tube to get snagged on something. So it looks like he'll be in snap-up jammies for a long time!)

One of our favorite nurses, Nicole. She and her friend/fellow NICU nurse Eboney always went above and beyond for James, even making him scrapbook pages and buying him little outfits!

James' main NICU doctor, David Pawlik. He was a great guy, always explained things well and answered all our questions. By the end he felt like a family friend. :-)

He's in the carseat...finally! It's actually happening!

Heading out the NICU doors for the last time, escorted by another favorite nurse, Melanie.

While greatly anticipated, that first day felt like utter chaos. We got to the hospital at 10:00am, expecting to be discharged around noon. Then his ostomy bag fell off, so we had to replace that. Then we discovered that all the stitches holding in the catheter in his lower intestines had pulled out and the tube was just dangling there, so the surgeons had to be called in to repair it. ended up being more like 2pm when we finally got out of there. The home health nurse showed up at our house at 3pm for what we thought would be a quick run-through of how to set up and use the equipment. It ended up being more like a full-on "how-to-become-a-nurse-in-2-hours" crash course, complete with about 5 big boxes of medical supplies. I was trying to furiously take notes and absorb at least half of what she was saying to me, all the while realizing, "We're going to be trusted to do all this by ourselves...on our own baby! Including mixing chemicals and hooking up IV lines that go directly into major blood vessels in his heart! Are they crazy?!" I'm usually pretty good at staying calm, but I can say for sure that all I wanted to do that day was crawl into a hole somewhere and not come out until it was all over. To say I was feeling overwhelmed would be a great understatement. Thank God for my husband! He's such a rock, someone who is steadfast during a storm, and I know together we can get through anything...and already have! We've done all the medical stuff together for the past few days and I can now say that it's getting easier and more manageable each time. I bet in a few weeks it'll feel pretty normal...but it's still scary. The first night James was home, my mom was still here since she'd been watching Maddie for the day. At 6pm it was time for us to do all his medical stuff...change diaper, change gauze dressings, empty ostomy bag, hook up his feeding tube for formula and start his IV nutrition. Since we had to lay him down and "mess with him", James was screaming bloody murder on his changing pad. Just then, Maddie trips on the stairs and now she's screaming too. And Keith and I are trying to breathe, remember when to clamp and unclamp James' central line, and praying every second that we don't do something to cause permanent damage to our baby boy. At that moment I was like, "Okay, God. This is a nice test of my ability to hold it together! What's next? Setting off the fire alarm? A S.W.A.T. team busting through our front door? Could you not give me just a little breathing room on our first try at this?" Then we tried hooking up the feeding tube pump and IV pump and had problems with both of them, so lots of calls to the on-call nurse. Then at 5:00am we discovered James had pulled his feeding tube out of his nose! Just the cherry-on-top to a crazy day. :-)

The first few days were a period of anxiety and adjustment for all four of us. James barely slept more than 10 minutes at a time during the first two days (nights were better) and only wanted to be held 24/7 (which, after 3 months in the NICU, can you blame him?!) and would scream if we even thought of setting him down to do something take a bite of food or go to the bathroom. (How dare we! A baby's got needs, dont'cha know!).

Each day things have gotten a bit smoother as we ease into a new routine. The best part of the day is between noon and 6pm, when James can be unhooked from all his tubes and just be a normal baby. Put that little guy in a Baby Bjorn carrier and walk around the house and he is one happy camper! He's been going to bed around 10pm and this morning he slept until 9:30am! HEAVEN! Keith and I do have to get up during the night, but usually only around 1:00 am and 4:00 am, so it doesn't feel too bad. As long as he's being held during the day, he's very calm and happy and barely ever fusses for more than a few minutes. Pretty amazing, considering all he has going on.

As we go on, our weeks will continue to be filled with doctors and hospitals...Tuesdays are visits with either his gastrointerologist or his surgeon, Fridays are visits at home from a nurse to change the dressings on his wounds (the large one across his stomach is now completely healed over, so now it just needs to get tougher and deeper) and draw blood for labs, and then if he qualifies for Early Intervention he may get services from either physical therapy, occupational therapy or speech (at this point, for issues that preemies face who aren't able to feed much by mouth).

James getting a little "tummy time" on Daddy.

I'll try to keep updating the blog when I have time, but lately any free moments have been reserved for things like eating, using the bathroom and sleeping! (I know, how selfish of me!) Thank you all for your prayers throughout this crazy journey and know that we appreciate them now just as much as in the beginning--we're entering a brand new phase, which has its own joys and fears and challenges. Please also pray for Maddie and her adjustment. All of this has been taking a toll on her as well and I'm sure it's overwhelming for a little 3 year old mind to make sense of it all and her new role. The last few days have been filled with constant whining and many tears, some warranted but most not (did you know that needing to change the batteries in the TV remote should be cause for a meltdown?). She's missing the 1-on-1 attention she's had for the last 3 years, is not getting enough sleep, is feeling the pressures of potty training, and is not quite sure how to handle James crying while Mom and Dad are hunched over him with tubes and syringes and bags coming out of him and whatever else. So she could use some comfort from our Heavenly Father right about now. :-)

Maddie is already teaching James his numbers.

I'll leave you with some photos from Thanksgiving at my parents' house, which also happened to be Keith's 38th birthday!

Tuesday, November 17, 2009

Home, James!

Update from Keith:
Some of you may not have heard the good news so let me pass this along. James gets to come home next week! Things have been very stable over the last month and most of the time has been spent letting James heal and finding the appropriate level of feeds that he can tolerate along with the optimal level of TPN he needs to be on. It will be several months still until James is able to have the surgery to reconnect his small intestines, and we have been hoping he wouldn't have to spend that whole time in the NICU. Due to issues with his Hickman catheter (like it falling out every few days!) they were not able to re-feed him through the distal (lower) portion of his small intestine so that allowed him to get to a stable point in terms of his feedings a little faster than everyone anticipated. The down side to this is that he is not able to get very much nutrition through his feedings and instead has to rely very heavily on the IV nutrition (TPN.) There are dangers with being on TPN long term (mainly to the liver) but it is being monitored and at this point the dangers are still low. (To get an idea of how he little he gets, he only gets 3cc an hour. If I understood the conversions correctly it is about 30cc per ounce, and I think the normal range for a baby at 2-3 months is between 24 - 30 ounces, so he is basically getting about 1/30th of what normal baby would get.)

The positive part of all of this is that James gets to come home on either Monday or Tuesday of next week! Lisa and I have been getting trained on everything we will need to do to care for him once he is home. One of the things that they have been working on at the hospital is slowly increasing the times that James can be completely unhooked from all of his equipment (feeding tube and TPN.) Yesterday he moved up to 3 hours and all of his levels were very good. The ideal goal would be to get him to a point were he can be off of everything for 6 hours, although it may end up being set up as two separate 3 hour periods during the day.

Lisa will be spending the night at the hospital one night this week to do a "dry run" before he comes home, just to make sure we are familiar with everything. Then on the day James comes home we'll have a Home Health Care worker come out to the house to train us on all the equipment for home use. It'll be a steep learning curve, but we're sure James will thrive here at home and we can't wait to get to know him more each day.

Thanks for all of your prayers and support! Now on to the next phase of our journey. :-)

Monday, November 16, 2009

Cake Pops are calling my name...

If only I had a TON of free time on my hands, Maddie and I would have a blast making these as Christmas gifts! Completely adorable. (If you want to see all her other "cake pop" creations, click on the cake pop picture on her homepage!)

Sunday, November 15, 2009

Let's Play!

This last Friday I met my friend Heather and her two adorable boys, Boston and Cooper, for a playdate at Play Boutique in Lake Oswego. The main area is a big open space with tons of hands-on toys for the kids to play with on their own while the parents actually get to sit and chat...and I actually go a free latte out of the deal, so you can't beat that! It was $5.00 for 2 hours of play time and Maddie loved every minute of it--we actually shut the place down! :-)

Heather & the kids

Maddie, Cooper (1) and Boston (3.5?)

Cooper's daddy & brother are both into soccer...looks like he'll be a natural!

What a gorgeous little girl, inside and out! :-)

Sunday, November 8, 2009

Mickey Mouse birthday

Maddie's two favorite cartoons are Mickey Mouse Clubhouse and Little Einsteins...she watches them every day when she wakes up & when she's engrossed in imaginative play during the day I can hear her reciting phrases and storylines to her dolls. :-) For her birthday party, we invited family and some close friends to celebrate with cupcakes, a great Mickey & Minnie cake (from Safeway, of all places--after I'd called about 6 other stores that no longer made them!), and way too many presents. This 3-year-old is now up to her eyeballs in cool toy food, a tea set and cute clothes.

Homemade cupcakes & decorations. I saw similar cupcake wrappers online for a ridiculous $1.00 each and thought, "I'll just whip out my scrapbook paper and find a template online!" Voila...custom wrappers and sticks for about $3.00 total.

A couple seconds after this, Maddie decided to lean in and bite the whole cake with her mouth (don't ask me why!)...and in the process lit her hair on fire! Thank goodness Keith was right there and it was out within a second and Maddie never knew what hit her.
It's not truly a party until there's the smell of burning hair in the air! :-)

Lisa's aunt Kristen & cousin Bridger

Alli's daughter Macy (age 6)

Alli & Ava (age 2)

Cheryl & Henry (1 month)

Nana & Papa

Maddie is normally an unusual kid in terms of opening presents--she loves whatever the thing is and wants to devote her full attention to it right then. "Let's unwrap it and play with it right now!" Well, when you're having a party with little kids on a school night, there's a need to rush things along. So I encouraged Maddie to open everything first and then we'd play with everything afterwards...well, then she went into birthday-girl-speed-mode. You know, how normal 3-year-olds do it--rip off the paper as fast as you can, glance at it for 1.2 seconds, chuck it over your shoulder and get on to the next gift! I think I created a monster. By the end of the night the living room looked like a tornado had hit it. Oh well! Fun was had by all!

Friday, November 6, 2009

PRAISES & Prayers

First let's hear the great news...JAMES IS COMING HOME SOON!!! We met with his team of doctors today and they told us he should be coming home before Thanksgiving, probably during the week of Nov. 16-20! Praise the Lord!! I can hardly believe it. When they told us those dates I was in a mixed state of bliss and sheer panic. It's like going into know it's coming for 9 months beforehand, but when it actually is time, then it feels like it was suddenly sprung on you. :-)

We are absolutely thrilled that James will soon be coming home to join our family...for real...and enjoy all life has to offer beyond a sterile hospital room. The next week or so will be very busy I'm sure. Mon & Tues we have a follow-up kidney ultrasound for Maddie and visits with her doctor at OHSU, Thursday I have a 3-hour infant CPR class, and I'm sure we'll be in the NICU more than usual every day because we'll have to be trained on all the different aspects of James' care for when he comes home. Our little guy looks perfectly healthy on the outside (and he's now tipping the scales at 7 lbs 3 oz, can you believe it?!), but when you get him undressed it's like a medical mine field in there...central IV line in his chest (tomorrow), healing incision across his middle, catheter port coming out his right side and ostomy bag on his left side. Considering all that, he's a super strong boy who hardly ever fusses about anything and must have a very high tollerance for pain.

Now for prayers...
1) Tomorrow (Friday) around noon James will have a minor operation to place the central IV line in his chest. They'll have to make incisions in his neck and under his collarbone, thread a thin catheter tube into a main vein and then place a port in his chest. This port will be used to deliver his TPN (liquid nutrition of fats/proteins/carbs), which he'll likely be on for the first year of his life or more. They perform hundreds of these procedures a year, but of course there's always risks involved. James is anemic, so he was given extra blood products today to prepare him--please pray for minimal bleeding during the procedure & also that there wouldn't be any complications with his heart or lungs or infections.

2) He wasn't able to digest my breastmilk as well as they would have liked, so he's been switched over to a formula that has the proteins already partially broken down so that his intestines don't have to work quite as hard. Pray that he is able to absorb as many nutrients as possible from this new formula and that he can handle an increase in volume of formula.

3) The catheter in his lower intestines has been very problematic over the past week or two and has fallen out/been pulled out at least 3 times. This, along with other factors, has made it so that the doctors are not going to be able to re-feed through that tube--a major bummer. Pray that his intestines be protected from infection and atrophy, since they will be sitting dormant until he has the re-connection surgery (in 6 months or so).

4) Pray for continued healing of his wounds, regulation of his feedings, and that Keith and I would feel confident learning all the medical techniques so that we can take our boy home & that there aren't any complications that would delay the schedule. Pray for good health for each of us and lots of energy to get preparations done before he comes home.

Wednesday, November 4, 2009

Need a Laugh?

One of the blogs I subscribe to daily is by Heather Armstrong. She's hilarious! I just read her book about motherhood and laughed out loud the entire way through. Just to warn you, she does swear sometimes, but just overlook that part.

I read this post this morning and thought, "Oh my gosh, that's sooooo going to be my Maddie in a couple more years!" Or, you know, next week. Have I told you that when we call her a Drama Princess she says, "No, Mom, I'm the Drama QUEEN!" :-) God help me when she's a teenager.

From Leta and I enter her room after eating breakfast, and because I haven't slept in several days I forget the structure that we've implemented in order to get her to focus her attention on tasks that need to be completed before school. Recently we've been making a game out of getting dressed, timing her with our iPhones to see how fast she can switch out of her pajamas and into her clothes. I KNOW. The fun here NEVER ENDS. If I send you an invitation to our tooth-brushing game, you better RSVP the s*** out of it.

So I've forgotten about the game and just say, "Leta, let's get dressed." And because she gets so distracted in the mornings I might as well have said, "Je m'appelle le croissant."

She dives head first into bed, throws the covers over her head and plays dead. I've got little-to-no-patience at this point (insert reference to major project launch, ill-timed vasectomy, and baby who wakes up at 4:30AM since the time change) but I summon what I can and say, "Leta, I need your cooperation this morning. Get up and get dressed or I'm going to take away your Nintendo DS." You know, A THREAT. That's Quality Parenting 101.

And hoo, I don't know if it's just my five-year-old girl who is going through this phase, but she uncovers her head, slowly limps her way out of bed and mumbles, "No you're not because I'm going to hide it and you won't find it and then I'll play it without you knowing." Like Dennis the Menace, except it's Dennis the EVIL.

Now, If I had said this to my father when I was growing up, I wouldn't be alive today.

So I get right up into her face and say NO YOU DID NOT. You are not allowed to talk to me this way DON'T EVEN THINK ABOUT IT. Not to instill fear, necessarily, except, yes. To instill fear. A little bit of fear is good. Oh dear god, the mail I'm going to get about this one.

And that's when it starts, what we call her Academy Award Winning Performance, and she starts saying things like, "Now I'm sad and I'm going to be sad forever. For the rest of my life, MOM."

And I'm like, dude, you can be sad. You can choose to feel this way, but we're getting dressed. Here put on this shirt.

"But you hurt my feelings and I'm never going to be happy again. Ever. For the rest of my life."

And I'm all, I know what it feels like to have my feelings hurt, that must be hard what you're going through, but now we're putting on these pants.

"But now I'm going to have a bad day because I'm sad, and then I'm going to have many bad days forever."

And there is that irresistible, generation-spanning urge to go, you know what you need? A trip to Humble Camp, a place called AFRICA. But I nip it, I shut off that valve, and I say, "I'm sorry you're feeling sad, that must be hard, now put on these socks." SOCKS THAT KIDS IN AFRICA DON'T HAVE.

And I'm not even kidding, she looks up at me and says, "You made me sad, and I don't know how to go on with the rest of my life."

A half hour later as she's gathering up her backpack and lunchbox and headed toward the car, her head hanging down in a pout, I pull Jon aside and give him a heads up that Leta is going to start her period ANY DAY NOW.

Tuesday, November 3, 2009

Happy Birthday, Madeline!

Today we celebrated having Maddie in our lives for the past 3 years! She is one of the cutest, sweetest, funniest, most clever and definitely most chatty little girls we have ever met. She's always integrating new words and phrases into her vocabulary. Today she was helping Keith put together a play kitchen, which was a birthday/Christmas gift from Grandma & Grandpa Frank (thank you, it's awesome!). (As a side note, I love the design of this play kitchen because it looks like stainless steel, it's sturdy, and it's gender-neutral, so James could also play with it as he grows up.)

As Maddie was watching the kitchen being built, she kept saying over and over, "Wow, Dad! How fun is THAT?!" We couldn't help but crack up. Tonight she got to go to Toys 'R Us and pick out something with her birthday money, so she settled on a big tub of toy food and a kitchen the stage is set for hours of fun!

We're having her birthday party on Wednesday night, so there will be more pictures to come!

Monday, November 2, 2009

Prayer Vigil for Lois

Hi Friends,

You may have read my posts in the last week or two about my friend Christine and her mom Lois, who was just diagnosed with breast cancer. She is having lots of tests this week and goes in Tuesday night for a lung biopsy to determine if the cancer has spread. They are holding a prayer vigil for her in the hours leading up to the procedure. If you feel led, please pray for her! Here's the post from the blog they've set up to document Lois' journey:

“Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. ” – Matthew 18.19

We want to invite you all to be part of a 12-hour prayer vigil for Lois, from 7 p.m. Monday night to 7 a.m. Tuesday morning (Pacific Standard Time). Why until 7 a.m.? At that time she goes in for her lung biopsy to see if what they see is actually cancer. It feels like God has opened a window for us and giving us more time to come before Him in unceasing prayer so that He can reveal his mercy, and his miraculous power. And so we pray in agreement with one another, and without wavering in our own belief, that the doctors find absolutely nothing on or near her lungs. That what they initially saw on the MRI will be totally absent. That God would already be showing us His miracle.

Will you commit to help cover her in prayer for those 12 hours? You can sign up for 15, 30, 60 minute slots depending on your schedule and time zone. We want to have every minute of those 12 hours covered. Please leave a comment on this post to sign up for a time you will pray. Make sure you read the other comments before choosing a time so that you don’t choose a time already covered. To leave a comment, simply click on “Leave a Comment” or on “# Comments” at the bottom of this post. (Here's the website: If you are willing to cover more than one time, write your first preference first and we’ll let you know via email if we need you to cover your second preference as well.

On the same note, let’s start the 12 hours together. When it hits 7 p.m., take a couple minutes to pray right where you’re at. We’ll have a mighty prayer circle taking place. If you feel moved to, join us in fasting for her for those 12 hours. Easy for those of us on the west coast to say since we’ll sleep for most of it. :) Invite your families, friends, and churches to join us in prayer during this time as well.

Bless you all for walking this journey with us. We know that God is listening to each of your prayers and that He who made us is already on the move."

Sunday, November 1, 2009

Trick-or-Treating & James update

Last night we did our 2nd Annual Halloween tradition: trick-or-treating at McMenamin's Kennedy School and dinner afterwards at Old Towne Pizza. This year we were able to double the fun by having my sister Dana here from London (yay--she's here all week!) and the Newell family joined us with their new baby Henry.

And just because you're a baby who lives in the NICU, that doesn't mean you can't celebrate Halloween! My mom bought James an adorable giraffe costume, complete with little horns on the hood and a tail on the back. :-) On Thursday Maddie and I made cupcakes for the doctors and nurses and then on Halloween I took Dana to visit James and hold him for the first time. She'd seen him about a month ago after his PDA heart surgery, but he couldn't be held then. Between cutie-pie Maddie and sweet baby James, we're determined to kick her biological clock into high gear (watch out Travis!). :-)

Update on James: We'll learn more next week at our Care Conference with our team of doctors, but it looks like James may be coming home by Thanksgiving!!! What a thrill that would be! They attemped a dye test last week to see if they could re-feed through the catheter in his large intestine, but they couldn't get the dye to go all the way through the large intestine, even after multiple attempts. Plus, James pulled out his catheter 3 TIMES last week, so the surgeons weren't sure if it was even placed back in the right spot or not. It looks like they may be giving up on the idea of re-feeding (which would be a big bummer for James & I'm not sure if that would pose complications for the future) and decided to do the minor surgery on Friday, Nov. 6th to place a permanent central IV line in his chest. It's a port that's very similar to the ones they place for cancer patients. He'll be getting his IV nutrition through that line and it's a big first step towards being able to take him home! I'm having my baby shower this coming week, so it will be a great time to celebrate his life and all he's overcome so far. :-)