Welcome to Holland

Sometimes it feels like I've been missing out on the "normal" sort of baby development experiences with Norah. When I visit her at the hospital, I see that she's grown. She smiles at me with the sweetest grin. I'm so thankful for those sweet quiet moments with her. But what about the others? What about the endless cuddles? What about hauling her around with me snuggled in an infant carrier or wrap? I can only plant so many smooches on that sweet face during our visits, and it doesn't make up for the millions of kisses I wish I could give her all day. Okay, maybe I'm feeling a bit sorry for myself at the moment, especially with it being her 2-month birthday. But a mom without her baby sure feels unnatural.

I miss her dearly, but I remind myself of the many things we do have. I remind myself of the fulfilling life that Norah will lead, when others aren't so lucky. We would never want any other baby instead of her. She may not be typical, but she sure is perfect. With that being said, I'd like to share something that I adore. It's undoubtedly given comfort to many families, including ours.

Welcome to Holland

by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Norah's Birth Story

As Norah approaches the two-month mark, I am reminded of how true it is that every pregnancy, birth, and baby is different. That is especially true for Harper and Norah. Just see what life was like when he turned two-months old... boy were things different then. Not better, not worse... just different.

Getting back to the topic at hand: I was more uncomfortable while pregnant with Harper. He was a c-section, Norah was a VBAC (yay for me!). Harper was 3 weeks early, Norah came right on her due date. He was a huge baby, she was a tiny baby. Harper was all smiles and shenanigans, while Norah is all about peace and quiet.

Well, I suppose I'm finally ready to share a somewhat condensed version of Norah's birth story. I wasn't sure that I was going to blog about it, but what can I say... I'm in a sharing mood, and I miss her so much. Click the link to "Read more" below if you're interested. If not, I won't blame you for not caring to read it.

When all was said and done, I'd take the VBAC over the c-section any day. It was a trade off of crazy pain all at once instead of awful pain for weeks. And for those of you that have been told "once a c-section, always a c-section", know that it isn't entirely true!

Hospital Transfers

Norah had a big day on Monday. She transferred from the PICU at Primary Children's to South Davis. Life Flight came to transfer her via ambulance since she needed special respiratory support. I rode in the front of the ambulance, where they had a little Big Brother-esque camera on board so I was able to see her throughout the ride. Once she was (mostly) settled on the new ventilator, she slept soundly.

Upon arriving to South Davis, she was swiftly transferred and gushed over by the staff there. They all adore Norah, but it really is hard not to. On Friday we had a meeting to discuss Norah's care plan. Throughout her stay they found her to be a bit difficult to comfort, and she frequently seemed either uncomfortable or in pain. This is very much unlike her typical peaceful self, so it was clear something wasn't quite right. The old tricks didn't seem to help much, either: blanket swaddles, cuddles, binky, music... she just can't seem to get comfortable. On top of that, her CO2 has shot up again. When she gets upset, it sometimes rises above 100, which is no bueno at all. 

Shortly after getting home from our meeting and visit on Friday, I got a phone call from the charge nurse at South Davis. The doctor had decided to transfer Norah back to the PICU at Primary Children's. Her CO2 was just too high, and she didn't want to take any risks. Primary Children's has a pretty fancy ventilator, and it seemed that perhaps Norah just needed that extra support and more intensive care until she could stabilize again. 

So back we went. It was nice to see familiar faces in both Life Flight as well as at the PICU. As nice as that is, we'd rather her not have to take this step backwards. The plan is to transition her a bit more slowly to the different ventilator. They're putting her on something similar to what they have at South Davis, and transferring her to the regular floor of the hospital instead of the PICU. From there, we hope to transfer her back to South Davis (again via Life Flight) with a gradual transition to their ventilators. But for now, she's much more comfortable than she's been all week. She sure does love that PICU.

The first photo (above) is her first Life Flight trip to South Davis, and the second photo (below) is of her trip back to Primary Children's. They even gave her cute little t-shirts with a Life Flight helicopter on them. When all is said and done, she'll have an entire wardrobe of those shirts. 

Norah's Sweet Face

Presenting for the first time EVER: Norah's canula-, tube,- and tape-free face! You may also notice that she's sporting a new trach tube. This one is longer and more flexible so her little neck and head will be much more comfy! She was super sleepy due to the anesthesia (notice the drool in the first photo), but isn't that face so precious? Don't you just want to smooch those little lips and chubby cheeks?

I will say that even when her face was covered by all those tubes and tape, I hardly saw the obstructions. All I could see was my sweet little girl. Besides, those were the things that helped to keep her alive, so I was quite thankful for them. Sure, we've traded them for the tracheostomy and the g-tube, which are also a pain... but I'm so grateful for modern medicine. I don't even want to think of where our family would be without it.

My Little Dude

This post is long overdue, but I don't think I need to give any excuses; I'm sure you all understand. My precious little dude turned three on August 20th (hey, at least I'm not a full month late). Three years ago, we were announcing "It's a Boy!" to everyone. Harper is one of my very best friends. He warms my heart and makes me laugh. He is my precious little guy, and I love him so very much. Though he can be a total booger sometimes, I always cherish our quiet cuddles, sweet affection, and goofy giggles.

We had a fun little get together for his birthday party. The only missing attendee was Harper's "baby sister", as he calls her. This was the first time he was really into gift-opening, as seen in the pictures below. It was a great day. Thanks to everyone for the gift, birthday wishes, and for celebrating such a special day with us.

Even though he has a million little Cars, Jeff couldn't resist. Emma clearly thinks that Harper doesn't needed any more.

"To Harper. From mostly Mom, kinda Dad"... What could it be?

A Seattle Sounders soccer ball! Can I get a woot woot?!

He loved showing off his presents for the camera.

Another show-off! Does anyone see a theme? The kid LOVES the movie Cars.

Even though Norah was at the hospital, we were all thinking of her. And yes, he is the world's greatest brother. He is so so so sweet with her. He even kisses and hugs pictures of her.

Super cool birthday cake! Jeff had to help a bit with the candles.

My little guy has the sweetest face. Although... his cousin Logan is also making a pretty fun face in the background too!

Norah Update

Norah had her second successful surgery, this time to place a g-tube (gastrostomy tube). This replaced the NG (nasogastric) tube that entered her stomach through her nose. The g-tube enters the stomach directly from the outside of her belly. I know, it sounds like it is more invasive than the NG tube, and in some ways it is. However, Norah needs her feeding tube on a temporary but somewhat long term basis due to her soft cleft palate. NG tubes can easily dislodge (sometimes into the lungs) and can increase susceptibility to nasal infection. It's also likely to become awfully annoying as the child gets older. I mean really - who wants a tube going down their nose, through their throat, and into their belly?

The surgery was successful, and she's now the bearer of a button style g-tube. The button style is great because the design allows the actual external tube to come off when not in use, then the stoma to the stomach is capped off. There was a small complication during surgery though. As the tube went in, her stomach tore a little bit, so the surgeon had to place a couple stitches. She has to go an extra day without eating to give her stomach a chance to heal. Then they'll do a barium test, where they'll push formula with dye in it so they can check the performance of the tube and stomach (via xray) to make sure the stitches did their job.  Jeff and I are going to a class for at-home care for the g-tube. Yes, it includes being able to change out the tube in an emergency or if problems arise.

We're also going to tour South Davis Community Hospital, where Norah will go until she's big enough for the home ventilator. I met some of the care team there, and they seem great so far. They said we'll be able to decorate her room, dress her in her own clothes, and even bring items from home like her swing. They try to make it as much like home as possible, and we're looking forward to that. Of course we'd rather she be home with us, but we'll do whatever it takes to make sure that it's safe for her to do so. She's up to 3.2 kilos... so only has 1.8 to go!

In other news, Norah had her third hearing test, this one more comprehensive. This test gauged brain response to sound while she slept. She does have some hearing loss, and is going to need to be fitted for hearing aids in 2-3 weeks. The hearing loss is related to spondylometaphyseal dysplasia, though Jeff doesn't have it. Of course, Jeff didn't have most of the problems she's had already, so it goes to show that these skeletal dysplasias can be tricky. No matter what, we love our sweet girl, and we'll do anything to make sure that she gets all of the care she needs... no matter the financial or emotional challenges.

PS... pictures to come of Norah and her tube- and tape-free face!

Luck in the Rain

Jeff and I have found rainy weather on quite a few special days in our life together. The rain seems to bring good luck when it comes our way including our wedding day and the days both Harper and Norah were born. Perhaps that is part of the love we have for Seattle. We sure do miss it there. But... I digress.

Norah had her tracheostomy surgery on Friday. Before things began, Jeff and I took turns holding her. We knew it would be our last chance in awhile since cuddle time would be restricted while the trach site healed. She had quite a few procedures beforehand: scopes, intubation, and an MRI. We received good news from all of these things. There were no airway obstructions, she was easy to intubate, and the base of her neck was stable without worries of spinal cord compression. We were able to stay with her during some of the procedures, but not all of them. One of the most surprising instances was when we returned after her intubation. For the first time in her entire little life, her face was canula free. And my goodness, it is such a beautiful face. She was sedated, but clearly comfortable.

We escorted her to the MRI and waited for an hour while she was in there. We then walked with her to the surgery area, but ultimately were shooed to the waiting room for about an hour and a half while they did some more scopes and performed the tracheotomy. The wait was agonizing, but all of our worries were relieved when we saw her ENT doctor's smiling face as he walked through the hallway and into the waiting room to chat with us. It went well without any unwelcome surprises. Though we returned to a still heavily-sedated baby girl, it was such a relief to kiss her sweet face and gently stroke her hair, forehead, and almost-bare cheeks. We were there when she began to wake up with wide eyes before we had to leave during the nurse's shift change. She faded in and out of sleep, but we could tell that she knew her mommy and daddy were there with her. I like to think that it was as much of a comfort to her as it was to us. Being there with her at that moment was priceless.

What did we see when we looked out the window after her surgery? It had been raining outside. We love the rain and the good fortune it seems to bring. Jeff stayed the night with her to comfort her when she woke in pain. The nurses were great at staying on top of her pain management, but I'm sure Daddy's presence was just as much of a help as the morphine.

So what's next? Well, caring for a tracheostomy is quite a bit of work and requires training. I'm not sure when that will be, since she won't be able to come home until she almost doubles her weight. The home ventilator equipment is only approved for infants that are 11 lbs or more. Until then, they'll be monitoring what exactly her ventilation needs will be. I wish I could say that her blood gas tests have been coming back great, but her CO2 still isn't quite as low as they'd like. Right now we're playing the waiting game as Miss Norah shows us what she is going to need.

She will also have her NG (nasogastric) tube changed to a G (gastric) tube that goes straight into her stomach from the outside of her belly. This will make her feeding tube easier to care for, be less irritating for her, and overall more convenient. It will require another trip to the operating room, but I'm a little less worried now that we know she can handle general anesthesia. I'm thinking it will happen sometime this week but I'm not sure.

After the jump below (where it says "Read more"), I'll share a couple of pictures of our sweet girl on the day after surgery. However, please do not post or share these photos elsewhere. I'm not going to post a wide shot of all of the equipment, because they can be really really really difficult for most people to look at. These photos aren't gory or anything, but may be a tad tough to view, so use your own judgement before clicking below. In the photos after the jump you can see the tracheostomy and a bit of the tubing... but of course mommy and daddy can only seem to see her sweet face.

Thank you all for your continued support and kindness.

A Tough Decision

Norah was discharged from the PICU on Friday 9/2, only to be readmitted on Tuesday 9/6 (the ambulance ride wasn't as thrilling as I thought it might be). This is her third stay at the PICU, and fourth hospital stay including those first two weeks after she was born. She continues to struggle with blowing off her CO2 due to her restrictive lung disease. Not only can this cause internal damage, but her body can simply decide to give up on breathing all together.

Today we had a care conference with most of her doctors including the PICU attending physician, pulmonologist, ENT specialist, tracheostomy specialist, geneticist, and a few others. Let me tell you - they're all pretty amazing. They make us feel like part of the team in her decisions and overall care. They're sure we're well informed and comfortable with all decisions that are made as a consensus. We all agreed that something needed to be done to stop the constant in and out of the PICU. Unfortunately, the high-flow oxygen just isn't doing enough for her, and our only option left seems to be a tracheostomy. This was a huge decision for us and for the doctors, as they admittedly don't like doing them unless all other options have been exhausted. Trachs are quite invasive, there are multiple surgical and anesthesia risks (especially for little Norah), and often require a tremendous amount of care at home. Most trachs are put in for neuromuscular problems, though that is not what her issue is. Rather, she needs a stable airway to connect to a vent so she can breathe more effectively at home. Which by the way, is where the first picture was taken... at home, about two weeks ago, where she belongs. It's one of my favorite pictures of her... she's just so beautiful. The second was taken yesterday while she was napping comfortably at the hospital.

So the surgery is quite risky, and it's difficult for me to mentally and emotionally process those risks, let alone type them all out. Her skeletal dysplasia really poses all sorts of unique challenges and special considerations that they'll be assessing as they go. The ball starts rolling tomorrow (Friday) at about 2:30 p.m. mountain time, or possibly a bit earlier. Any extra love you have to give tomorrow would be welcome with open arms, even if it's just a little thoughtful well-wish that everything goes well. Best case scenario will be that there are zero complications & the treatment is effective. Once it's all done, the challenges won't be over. Trachs require around the clock care, so the doctors say we'll need about 10 days of training. The problem though is that Norah is so small, and only weighs around half of the minimum for the home equipment. This will likely mean that she'll spend some time in a special facility until she grows. Who knows how long that will be. Though I have total confidence that we'll be able to learn to care for her, I'd be lying if I said that I wasn't worried about the life changes on the horizon.

It's been a tough six weeks since our precious little girl was born. To top it all off, I just had surgery last week. My gallbladder was causing me some serious problems so it had to come out. Great timing, huh? I'm just glad that's all out of the way so my focus (and Jeff's since he wasn't able to stop worrying about me) can be entirely on Norah. I will say that despite all of the challenges and subsequent tears, I am reminded of how much we really do have, and how thankful I am for it all. I'm also reminded of the courage and strength that has spread amongst our little family of four, and how it grows and makes us stronger in numerous ways. Tonight my mom helped me realize that courage isn't about how brave you feel... rather it's about moving forward despite the urge to run in the opposite direction.

A special thanks (in no particular order) to Grandma Carol, Cranma (that's how Harper says it) Claudia, Greg, Emily & Ryan, and Shelly. On multiple occasions, we've been downright saved by these family members that have been able to help with childcare for Harper, and in some cases even come forward with unsolicited cash to help with these frightening hospital bills compounded with Jeff's unpaid time off work. All of this has been more help than I can begin to describe. And of course a huge thank you to all of the rest of you that have sent so much love and offers of assistance our way - it's priceless. Oh and two more thanks: to Harper for wiping mommy's tears away when she was sad tonight & to Jeff for taking such sweet care of his wife. This would be so much more difficult if our marriage and love weren't as amazing as they are.

Wish us all luck tomorrow.