Another Surgery

Norah had yet another trip to the OR on Monday. Many (if not most) special-needs moms could tell you exactly how many times their child has gone to surgery. I lost count long ago. This time she went in for her trach scar revision, and it'll be great to see how everything heals. I hope she grows to be proud of her scar and what she's overcome. Our ENT also noted that her mid-airway still has quite a bit of tracheomalacia (her airway doesn't stay rigid & open - think of a straw that is pinched half-way closed). He knows that I love pictures so brought some out to me. Hopefully she grows out of that floppy airway. This particular trip to the OR was particularly stressful because it was her first since having her trach out. But everything went smoothly without any issue. We walked away feeling relieved that Norah wouldn't need surgery for a LONG time.

We were wrong.

We went to Shriner's to follow-up with her Orthopedic doctor. We've known that Norah's neck isn't totally stable (she has excessive movement between C1 & C2) but we've hoped that over time, things would ossify and strengthen & she'd be fine. Turns out, it's gotten worse. We have a bunch of appointments next week, but I'm under the assumption that they're going to want to fuse Norah's neck within the next couple weeks.

I know that fusion will help her be stable, safe, and prevent spinal cord injury. But I am scared. I am scared of pain and her own fear. I am scared she won't want to come off the ventilator post-op. I am scared of permanent injury. I am scared of death. Of course, not getting this surgery could lead to those same things. So I know it is necessary. But that doesn't make it easier.

The thing is: I know Norah can do this. She has been through so much and has shown us that she isn't going to give up. I mostly worry about my own ability to hold it together. I hate seeing her hurt. I hate that I can do so little to protect her from the inevitable pain associated with her medical woes. I hate that our family will again have to taste what it is like to be apart. I hate that Harper has to see his mom cry this way. I hate that he has such worry about Norah in the hospital. He said to me recently, "But mom, I thought we got to keep her. I don't want her to go to the hospital."

So again we go through another challenge together. Part of me has forgotten that life in the hospital. I don't know how we endured those 23 consecutive months. But then the other part of me remembers that time with such distinct clarity that it adds to the anxiety and fear of going through that again.

I'll try to keep you all updated on her upcoming schedule. Here's to strength, bravery, and love getting us through.

It's Happening

'Tis the season for goobers and viruses, which means it's also hermit season.  We don't mind though, because the kids are both doing amazing. Harper is in love with school, and has already learned so much. Norah is taking huge leaps, too. 

For awhile now, she would get around the house by scooting on her bum. This was tricky while tethered to her ventilator. She had some successful trials off of the vent with a little attachment that moistens and warms the air and bleeds in a little extra oxygen. So we decided to take a big leap. On Sunday, we let her wear this attachment (referred to as an artificial nose) all day. She did amazing. She also did amazing all day Monday. And she'll do it again today. I put her back on the vent for "naps" and overnight, since she definitely still needs it while "sleeping". So this is a huge step. HUGE. 

We have also dropped her "dinner" tube feeding, as she has been loving meals by mouth at dinner. We've even been able to graduate from her eating on the floor (a familiar place), to the high chair. It's been a lot of work to get her to eat by mouth, but it's happening. It's all happening. 

Easy As Breathing

You have likely heard of the phrase "as easy as breathing", or "as natural as breathing". For some people, breathing doesn't come so easy. When Norah was a newborn, she was constantly telling us that she needed help breathing. Even today, it is loud and clear when something is wrong. She sometimes grabs our hands to put them on her suction ballard when she needs suctioning.

Norah breathing without the
ventilator!

But today, Norah accomplished something that had multiple people (especially me) crying years of joy. For twelve minutes, Norah was breathing without the ventilator. 

We connected what is called a trach mask to her, instead of the ventilator. The trach mask simply expells moist oxygen into the airspace just outside of her trach. So with each independent breath, she was getting an extra puff of oxygen. Think of an oxygen mask that covers the mouth and nose, but designed for the trach instead.

Norah has tracheomalacia, also referred to as an overly floppy airway. The trach tube stents her airway open while the vent opens up her airway and lungs. Because of this, they considered that she may fail the trach mask trial. I knew she wouldn't. I knew she could do it. She is strong, brave, and amazing. Most of the people in that room had seen Norah at her worst as a baby. We're all amazed at how far she's come. But what's more, is that we are so excited about the future. Norah will someday come off the ventilator. Then she will someday be able to be trach-free. She may have hardships ahead with her multiple medical needs, but there is hope. We have never given up hope on Norah. Breathing may not be easy, but Norah perseveres. We all do. 

PS: She will be home with us in less than one week!

Growing Up

I've had several friends mention my lack of blogging lately. I know. I'm not going to say it's because I've been busy. I'm not going to say it's because I don't have anything to say. The truth is, it is hard to write when I grow weary of my own thoughts and emotions. I don't want to complain. I don't want to live in sadness, nor do I want to constantly feel like I have to force myself to stay positive. Well, I suppose I do the latter is just part of how I handle our situation. And in truth, it isn't always forceful. There are so many beautiful things and people in our life. It is just hard. And I feel like such a whiny baby when I complain about how crappy things are for us. Yes they are hard. Yes others have it more difficult throughout the world. Much, much, more difficult. It is both challenging and easy to maintain perspective. We see so much sadness in the lives of others, and while we sometimes feel like we have a bum deal too, we are energized and comforted by our perfect family and all the love around us. So I often feel conflicted about my feelings. How's that for a mouthful?

We have been off and on sick for the past month. Fortunately, Norah hasn't had to make a trip back to the PICU. We, along with the staff at South Davis are pretty aggressive at doing what we need to keep her from going downhill. That has meant steroids, albuterol when she's wheezing, extra suctioning, extra vitals, and extra measures towards preventing the spread of illness. Jeff has had to make some solo visits, and Norah is (sort of) getting used to seeing me with a mask. She hates the mask. I think she is a bit afraid of it, being that masks and gowns at SDCH typically mean that a trach change is coming. She tries to pull it off my face, and sometimes she cries, but I do what I can to remind her that I'm not going to do anything mean, and that I am just going to play and cuddle. The other good news is that she is still doing 11-hour sessions every day on the home ventilator. She needs to tolerate it 24/7, then also grow big enough so the FDA will "let" us take her home for good. She is up to 7.3 kg (16 lbs), and she needs to be 10 kg (22 lbs)... which is proving to be slow-going. The unfortunate thing is that the respiratory director still considers her to be the most fragile (respiratory-wise) in the entire hospital... and that is with a handful of newer babies that use the ICU ventilator, too. Hopefully he only says that because he is so attached to Norah, and has seen how scary things have been with her. After all, he was one of the key people that helped bring her back to us on quite possibly the worst day of our lives.

Norah is so funny lately. She loves to hang upside down off of her Boppy pillow or my lap. She laughs, she plays, and she is so very smart. She rolls everywhere in her crib, as well as sits up in it. I'm sure it's just a matter of time before we have to start putting the rails all the way up to the top. I hate that - it's sort of like a cage. She is still the cuddliest girl in town, she still loves to play with Harper's cars, and give him a smack when he tries to hug or kiss her. She always has mischief all over her face. She is social, but she demands that all new people earn her respect and attention. She is 20-months going on 20-years. I love her.

We are preparing Harper for kindergarten. I made a chart for him to put up stickers when he completes a kindergarten-type activity. So far it has been working out great. Just yesterday, we got crafty by each drawing pictures of our family of five (I am not pregnant - Norah's ventilator is our fifth family member). Next - and this is the big one - will be social activities. I've been on the hunt for local community activities that we can go to... hopefully I can find some that will work with our crazy schedule. We recently did the "Kindergarten Round-Up" at his school. He was super shy at first, but by the end of it, he was ready to run around with the other kids.

Both of our kids are really growing up so fast. I just can't wait to get them both under the same roof for more than a few hours. 

Back on Track

Norah's record for tolerating the home ventilator came before she had two trips to the OR, and before she came down with ventilator associated pneumonia in December. It was 13.5 hours continuous hours. She still hasn't beat that, but she is finally back on track. For the last couple of months, she has only been on it for 4-5 hours at a time. However, she is now tolerating 10 hours every day.

The plan is to re-evaluate her every two weeks, and increase her time on the home ventilator by one hour if she can tolerate it. With as well as she's been doing, I'm hopeful that we won't have a problem bumping her up when it's time. That is... so long as we don't have any sort of setback like we seem to keep having.

So she's that much closer to being able to come home. The unfortunate thing that we just found out, is that the FDA's rule for using the Trilogy (her home vent) at home is that she be 10 kg (about 22 lbs). Right now she weighs in the neighborhood of 7 kg (15.4 lbs), so we still have another 3 kg to go (6.6 lbs). That is a LOT for her. So we may not make our goal of getting her home by the time she's two. But we can still hope.

We have quite a few resources to help keep her weight gain on track. It's a little tricky, not only because of her skeletal dysplasia, but also because her work of breathing burns quite a few more calories than the average child her age or her size. Her growth goals are half that of a child her age. She still gets pretty much all of her calories from her g-tube, and we'll probably have it for quite sometime. I'm not so worried about it though. To be honest, it is really convenient. Of course we are still working on her oral feeds, but I'm quite the advocate of g-tubes when the application is right. We're taking the gentle approach with Norah. We encourage her (she LOVES Cheerios), but don't push too hard when it comes to anything oral. It isn't easy for her, and we don't want to push so hard that we end up going backwards.

I'll keep you all updated on her progress with the ventilator. Hopefully we'll continue to move forward!

Living on Life Support

Most people think of the term "life support" as the means to an end. Perhaps that is true in most cases, but not ours. To us, "life support" is the means to a beginning. Norah recently had her half-birthday, turning 18 months old. She is definitely a toddler. She throws fits. She gets frustrated. She gets annoyed with her family. She wants to do everything her way and on her own terms. But yes, she is still on life support. She has a trach, a ventilator, a long-term feeding tube, and enough gear to start her own medical supply store. She lives in the hospital still, and our hope is to get her home by the time she turns two years old (but who knows if that will actually happen). While we try to live life fully and happily now, we sure look forward to breaking free of life support.

Jeff and I often daydream about our future. There are so many unknowns, as with all lives. We wonder if Norah will still be dependent on these medical devices when she goes to school. We wonder if she will choose American Sign Language or spoken word. We wonder when we will hear her sweet voice for the first time. We wonder what it sounds like. We wonder if she'll grow to be proud of her challenges, or embarrassed by them. We daydream about the day she is decannulated - the day she gets her trach out. It will be an overnight stay in the PICU, and it will be coming full circle. We wonder how old she'll be. At first we pictured her toddling around, all of her favorite nurses chasing her around the unit. But now maybe she'll be coloring in her favorite coloring book. Maybe she'll be reading a Harry Potter book. Maybe she'll be painting her toenails and texting her friends about how bored she is.

We daydream about Norah and Harper taking care of one another. He will protect her, and she will protect him. They will fight, they will laugh, and I can only hope that they will be close.

There is certainly another sort of life support aside from the medical type. There is the life support that requires the love of those around you to lift you up and help you get through tough times. There is the type that creates wonderful memories to draw upon when life gets difficult. Right now we live on both sorts of life support- the medical and the emotional. It is difficult, frightening, and completely beautiful.

A very wire-and-tube-filled photo of Norah during her recent
PICU stay last week. Her hair is amazing.

Someone I Love

I recently read a lovely poem on a friend's blog that I felt compelled to share.


Poem by Lori Hickman

Someone I love relies on me in ways you will never understand.

Someone I love endures pain and challenges that break my heart and renew my spirit at the same time.

Someone I love is unable to advocate for themselves for things that most of us take for granted.

Someone I love will never have the opportunities that every child should have.

Someone I love will need unconditional love and support after I am gone - this frightens me to the core.

Someone I love encounters pity, stereotyping responses, and prejudice at every turn, because they look, act, and/or learn differently than others.

Someone I love has needs that require me to allow "outsiders" to have power and input in areas that should be mine alone to meet.

Someone I love will continue to look to me for everything in life long after other children are able to assume a place as part of the world.

Someone I love has needs that require more time and energy than I have to give.

Someone I love has needs that mean I am not able to meet basic needs of my own.

Someone I love has needs that have become the driving force behind major decisions my family makes.

Someone I love has changed me in ways I will never be able to describe.

Someone I love has taught me about love and about the really important things in life...

And still others don't understand what it is to be me.. they aren't living in my skin.

Waiting

Norah won't likely be leaving the PICU too soon. She isn't any worse, but she isn't much better either. She's back to her baseline ventilator settings (I always correct people who say "home" settings), but is still not tolerating her feeds, and is still on a feeding pump (she hasn't needed one in a VERY long time), taking her feeding over an hour and a half instead of the usual 10-20 minutes via gravity without a pump. She is still working quite hard to breathe, which leaves less room in her body for formula.

She's still sweaty, off and on feverish, and mostly not herself. She plays now and then, but mostly drifts off to doze intermittently throughout the day. I'm not sure how long it will take her to get over the hump, which means her estimated stay at the PICU is unknown. Yes, that means that we may or may not have our Christmas at home. I won't think about that until it gets closer. We have three weeks to get back to where we were, but I'm not sure that's feasible.

I was pretty emotional last night. I think everything just sort of caught up with me. I've been pretty cavalier about this PICU stay, just assuming it was a bump in the road and she would immediately bounce right back. It's taking longer than I thought it would, so I think my denial of the situation finally broke through. I shouldn't have been looking up medical journals online, but I read that mortality rate for ventilator associated pneumonias are widely varied, but generally in the range of 24-50%. UGH. Now I know for so many reasons, Norah does not and will not fit into that percentage. It just isn't her situation. She is doing too well... right?

Last night I wistfully sobbed about missing the time that Norah was in my belly. I carried her with me everywhere I went. She got the hiccups every day, which would send a quick little jolt in my belly. She was a gentle kicker (unlike Harper), which is just how she is now: so surprisingly gentle for her age. She was always snuggled up within me, no matter where I was. I never had to say goodbye to her at the end of the day. Jeff reminded me that I couldn't be selfish in this, and that if she was still in my belly, he couldn't snuggle her too. We wouldn't be able to enjoy her smiles, her belly laughs, or any of the wonderful things that Norah shares with us. Of course I wouldn't really want her back in there, but I sure miss never having to be separated from her.

I probably shouldn't be allowed to use the Internet anymore. In addition to reading awful things about ventilator associated pneumonia, I also briefly looked at a couple videos of kids Norah's age. I wanted to see what a kid with typical development would be like. Of course Harper fit in that category, but I just couldn't remember the look and feel of it. Oh boy, what a mistake. These kids were such busy bodies. They walked everywhere. The tumbled, toddled, and talked. Their voices were so sweet. They played on the couch, the carpet, and everything they could get their hands into. I quickly closed the videos. My emotions are torn here. Though I pine for Norah to be free of her tethers, I don't want those babies. I want mine, and that means at any cost.

So we wait for Norah to get better. We'll wait for her to get back to where she was before all this. We'll wait for her to come home. We'll wait for her to get strong enough to not need all of her medical gear. We wait, we wait, we wait.

Setting Records

As most of you likely know, we have been putting Norah on the Trilogy (home) ventilator for "trial" periods each day. At first, there were some days that she could hardly stand 5 minutes. Then she was gradually going up in time on the Trilogy: one hour, three hours, four hours... During our most recent meeting with the SDCH staff, we asked them to push her, just to see what she could do. So they've been doing exactly that. Her new record?

Thirteen and a half hours.

Yep, she is doing amazing. She used to get so tuckered out after just those few hours, but she is doing so well, that most days she is on it 10-12 hours. I'm not going to say that this is the reason for her doing so well, but I've been applying a respiratory blend of medical-grade essential oils to her feet almost every day. (Thank you Kelly!) I'd like to think that it may be part of why she's doing so well... who knows. 

I do know that our girl is one tough cookie. She definitely has to work harder on the Trilogy than she does on the Drager (the ICU-only ventilator), but it looks like there isn't really a way around that for now. But it doesn't exhaust her like it used to... in fact, she hardly seems to notice. I think she enjoys the things she can do on it that are more difficult on the Drager. She can go for walks, she can play in the hallway for a change of scenery... and... (drum roll please), she can finally sit up for a few minutes! It was so much more difficult on the Drager because it has a heavier circuit with so many more parts vs. what we have with the Trilogy. 

It's going to be an amazing Christmas with the four of us (plus some family!) at home together, for the first time since Norah was a frighteningly unstable 41 days old. And it won't just be for a few hours... it'll practically be all day! I'm not prepared to think about how difficult it will be to take her back to the hospital afterwards. The only comfort we will have is that she's so very close to coming home... I can practically taste it.

Happy and playful in the hallway outside of her room.
She's growing up, and we are beyond thrilled at her progress.

Ventilator Trials... and Tribulations

Overall, Norah is still doing quite well at South Davis. We've been there for three weeks now, and she is still healthy and thriving. We're continuing trials on the Trilogy 100 (photo left), which is the home ventilator. Some days she does pretty darn well, and others... not so much.

I'm not sure if it's the lack of humidity (we tried an HME & it was too difficult for her to breathe through), the larger circuit, AVAPS vs. SIMV, or perhaps just the fact that it's a different feeling machine, but she just isn't consistent with her tolerance of the Trilogy. (I know, so much jargon. Sorry, but some of my readers may know what all that means.) Perhaps we need to tinker with the settings a bit. I just don't know. Her record trial on the Trilogy lasted 50 minutes, but some days she can't seem to settle into it, and we have to put her back on her Drager when we see that, for whatever reason, she just isn't going to tolerate the trial. These ups and downs are to be expected, and prove that we still have a long road ahead. We do our best to remain optimistic.

In other news, her oral feedings have been going well. In fact, she officially said her first word - well - her first sign, "eat". We let her try "puffs" for the first time (they're like Cheerios, but they dissolve easier) since she's been working on the pincer grasp with her fingers. She didn't know what to think of the chunks in her mouth, but she did seem to be interested in it. When they stuck to her fingers, she shook her hands like crazy to get them off. It was pretty cute. We're going to start increasing her oral feeds a bit, moving from therapeutic to nutritive. Once she can handle some bigger bites, we'll head back to PCMC for a swallow study. And don't worry, PICU peeps, we'll always be sure to visit the unit when we're in the neighborhood!

Norah playing with the best daddy ever on Father's Day. Thanks to therapies, dedication, and Norah's hard work, she is getting stronger every day.

Really tuckered out after a difficult Trilogy trial. My sweet girl is getting so big! I love that little bum!

DDH

Well, I suppose it was time to add just a little dash of drama to our lives. We recently had an orthopedic consult as part of the preparations for Norah's transfer to South Davis. They wanted x-rays of her hips and spine. The good news is that there is no scoliosis (yet). The not-so-good news was that the films suggested her hips were not in their sockets. They ordered an ultrasound to get a better look, and sure enough found that she has developmental dysplasia of the hip (DDH).

One of two things will happen: either they'll be able to pop them in place while under anesthesia, or they'll have to go in surgically to clear some space and pop them in. This could include lengthening muscles or tendons, and/or clearing out debris from the socket before popping them in. She'll have to be casted afterward. 

They may coordinate all this with her soft palette cleft repair at 15-months. We're not sure just yet. It would be nice to have everything done under the same anesthesia, but it will have to be decided if that would be too much for her at once. We should know in a few months.

The good news here is that we caught the problem. Surgery will give Norah a fighting chance to avoid hip replacement surgery in childhood then in early adulthood like her daddy had. There's no guarantee that her hips will form perfectly, but it will hopefully help. 

Below are some fun pictures of our recent busy week or so. We're enjoying our last few days during this admit at PCMC. It's been difficult to think about how much we're going to miss everyone, so I'll save that for another post.

We're glad that since they've made her hearing aids so yummy, that they're also fairly waterproof.

Snoozing in mommy's lap.

PEEKABOO! Harper as a reputation for being shy at the hospital. He closed the door, curtain, and hid from everyone that was still in Norah's room.

Make-shift "fort" on daddy's lap.

She used to loathe oral suctioning. Now she thinks it's fun. Norah's speech therapist has really helped her with her oral aversion.

A Big Little Step

We, along with Norah's doctors, have have had multiple discussions about Norah's long-term plan. As I've probably mentioned before, Norah has another year (give or take) before she will be big enough to give the home ventilator a try. Her pulmonologist agrees that the thought of an 18-month(ish) Norah in the ICU is a sad thought indeed. All along, I've truly believed that she'll be weaned before she's big enough for the home vent.

Well, we took a big little step today. I spoke with this week's attending physician (who knows Norah well), and we decided she was ready for her first trial off of the ventilator today. We went into this with few to no expectations. We would see how she did, and put her back on the moment she seemed like she had enough. How long did she last? Three minutes. 


Perhaps we need a little perspective here. Aside from very brief disconnections from the ventilator (both intentional and accidental), Norah hasn't been off the ventilator since she was trach'd at six weeks old. She'll be nine months old on Friday. These three minutes were hard work for her. She cried, looked a little scared, and got sweaty (as she always does when she's upset). But the big story here is that her lungs continued to move air well, and she didn't desat (lose oxygenation in her body). Once we put her back on, she was still working hard to breathe, but recovered quickly and went back to playing and smiling (photo above) even before the care team left the room.

So what does this mean? Well, I can tell you what it doesn't mean. It doesn't mean she's coming home tomorrow. It doesn't mean that we suddenly have a concrete plan laid out for her. We'll continue to work on building her tolerance for her time off the vent. This will likely be a long process, and will be the foundation for determining our next steps. Her safety is our number one concern. We also need to make sure we dont work her too hard, depleting all those calories that she needs to grow.

We will continue to be easy on the expectations. As always, Norah will tell us what she needs. It isn't always loud and clear, but we're doing our best. I'm so proud of Norah. I've said it before, and I'll say it again: she is the sweetest, strongest, most amazing person I know.

Family Fun

Old-Man-Gunnell (aka Jeff) had his birthday on Sunday. We had a great mini-weekend filled with indian food, video games, geekery, and family time at the hospital. 

Sweet siblings

Harper sure loves Norah

Norah is really working on her two bottom front teeth. Her drool is out of control, and so is the cuteness!

 They decked out Norah's wagon like a parade float... complete with crown and scepter. She waved her scepter to her subjects, demanding smiles for all!

Norah's Progress Update

Norah is still doing great. She now loves her hearing aids! Not only has she gotten used to them, but she's really perked up and is even more socially interactive with them. They're really helping her continue to develop more than just her auditory senses.

Physical, occupational, and speech (for her oral aversion) therapies have been going well too. She tolerates a whole lot more than she used to. PT and OT are trying out some new techniques that work with her diaphragm and breathing troubles. The techniques are very hands-on and similar to those that an osteopath might use. It's very interesting and very exciting too.

I'd say her growth is like watching grass grow, but I'm pretty sure grass doesn't have downs to go with the ups. She lost a bit of weight this last week, so we've sort of started to chase her numbers. It's not fun. Along with carefully monitoring her caloric needs, we also started growth hormone therapy. We did some blood tests and had a consult with an endocrinologist. While growth hormones have never been found to enhance growth for those with skeletal dysplasias, Norah's own natural level of growth hormone is on the low end of average. I'm pretty sure that is from her mama's portion of her DNA working against her. So really, her growth issues aren't just from her condition. I truly believe that a good portion of her challenges are from inheriting my own shortness. So the growth hormone therapy will be a slow process, and we won't know for another 3-6 months if it's even doing anything. But hey, if it can get her home even a month early, these daily injections would be worth it. On the topic of growth, I realized something yesterday. At just under 19 inches, her length is still that of a newborn. Other babies look gigantic to me! I will say this though: Norah is perfect.

I've been avoiding posting about her current estimated length of stay in the hospital. With her current growth goals, she probably won't be big enough for a home vent until she's about 18 months old or so. Yes, that is a full year away. I'm hoping that before that time comes, she won't need the trach or vent... but we can only wait for Norah to "tell" us what she needs.

The PICU sure loves Norah. They helped make her half-birthday special!

Her absolute FAVORITE book

What can I say... my kids love the color orange. Jeff blames me. :)

Kisses for Piglet

The happiest kiddo to ever have graced the PICU!

Cuddle time with mama. It's so difficult to leave this face.

First pedicure courtesy of mama! Her toenails proved to be quite the moving target.

Out of the ICU!

Three is my lucky number, and they say that "the third time is the charm", right? Let's certainly hope so. Norah transferred back to South Davis for her third stay. Let's hope this one sticks until it's time for her to come home. South Davis rented and trained their respiratory therapists on the only ventilator that will work for Norah. She has expensive taste, that's for sure.

Though Life Flight came to transport her via ambulance, she moved a step up from the isolette to a gurney due to her growth. Speaking of growth, she's up to 4.4 kg, which is 9.68 lbs. I recently realized that Norah isn't a newborn anymore. It makes me sad to think that I missed so much of that wonderful but fleeting phase. She's developed so much in the last few months, and almost all of that development has happened in the hospital. I sure miss my baby girl.

Our family has been divided for almost four months now. This division has become our new "normal", but it certainly hasn't gotten any easier. Sure, I don't cry every day anymore. Harper no longer seems to feel abandoned every time we leave him with a family member for the day. But that doesn't mean it is any easier. We've only learned to cope with it better. I still feel reluctant to leave the hospital at the end of each visit. I still think of her constantly, and ache to be together. I don't think it will ever get easier. But we make the best of it. We smile and laugh with each other as well as the hospital staff. We cuddle and play, and do our best to make the most of the time that we do have together. 

So precious in the hair accessories made by one of Jeff's co-workers just for Norah!

I just can't get over her sweet face. And those eyelashes kill me!

So precious!

Finally settled in at South Davis

Doing the Math

You may have noticed that I'm keeping track of Norah's weight progress on the sidebar to the right. When Norah was trach'd, we were told that she would only get to come home when she could be transitioned to a ventilator that was approved by the FDA for home use. These vents only go as low as breaths that give volumes of 50cc (think of the amount of air filling a balloon). That is far too much for Norah, so we were told that she would have to be around 5 kilos (11 lbs) to be taking in those kind of volumes.

Well, now the doctors are rethinking Norah's lung volumes. Due to her restrictive lung disease (caused by her small chest space), she isn't going to be able to take in volumes that are typical of most babies. The normal lowest ratio is 10cc's of volume per kilogram. But right now she's at about 6-7 cc's per kilo. Any higher could do permanent damage to her lungs. What does this mean? Well she probably won't be able to transition to the home ventilator until she's about 7 kilos or so. 7 kilos = 15.4 lbs for those of us living in a non-metric land. Yes, that means more patience, many more months of being divided as a family, and of course... more hospital bills.

We had a rough day yesterday. I received a phone call at about 1pm from one of the ENT doctors asking for permission to do a scope down her trach to see if there was something that might be blocking her airway and causing her distress. What distress, you might ask? Well the blue baby blues are back in full force. On Thursday night she had three episodes of desatting to the point of turning blue and needing to be bagged. When I got there on Friday, she was clearly having another rough day (her second bad day this week). She was just so uncomfortable and upset. She had a major desat while I was there alone with her, but fortunately recovered when I bumped up the oxygen on her ventilator and did my best to comfort her.

When they did the scope (they placed a camera with a light down her trach tube), they gave her a sedative that didn't seem to have much of an effect on her. She tolerated it well anyway. They said everything was good there, so we at least can rule that out as being a cause for her troubles. For now we're just going to wait and see how she is over the weekend. South Davis finally got the ventilator and is working to train their respiratory therapists on it. However, so long as Norah continues with these bad days, she won't likely be going there any time soon. Only time will tell though.

Baby Talk

Norah's trach makes audible talking near impossible right now. But I swear - if she could talk, her first word would already be "hi". When I tell her "hi", she gives me a big smile and I'm not exaggerating when I say that she mouths the word "hi" right back. She may have moderate hearing loss, but she sure responds to voices (and faces) when they are up close and personal.

As for Harper, I can't believe some of the things that comes out of that kid's mouth. Here's the deal: many of you know that I have a bit of a potty mouth, and often let one slip at the wrong time. I'm helpless to it during times of acute stress: when the dogs would escape and head for the hills, when I get close to video-game-death, or when some jerk driver does something to cause a near-miss. Where am I going with this? Well, I've been trying to be better about my language. I'll be honest: there are some words or phrases that I just don't consider to be curse words, though others might. And for that, I apologize to those that I offend. But really, proof of my efforts is with Harper. He's been repeating everything I say - and the worst I've heard so far was when he dropped a toy and exclaimed, "Oh my goodness!" It was pretty dang cute. Speaking of cute... Here he is with his cousins Logan and Emma. They made a Harper-Hug-Sandwich!

Harper & Norah

Norah is doing great at South Davis. She's now up to 8 lbs, so only has a few more to go before she can be transitioned to a ventilator that can be taken home. She's been trialed on a similar ventilator before but didn't do so well. However, every little bit of growth makes all the difference in ventilating those tiny lungs of hers. It will take time to get meaningful growth (not just chub), but we're willing to be patient. As her chest and lungs grow, it will be easier for her to tolerate different ventilators.

She won't get to come home the moment she hits the magic mark of 11 lbs. Rather, it serves as the milestone to start the home ventilator transition. She'll have to be stable on it before she comes home... but like I said - we're willing to be patient when it comes to making sure she's comfortable and ready to come home. I just love knowing that a homecoming is in sight.

One of the great things about Norah being at South Davis is that she's only a 20-minute drive away from home. Today Harper decided that he wanted to "visit baby sister at the hospital", so off we went.

Harper is such a great big brother. His face lit up when we saw her, and she seemed happy to see him too. She was watching her brother's every move. He kept wanting to kiss and "hug" her. He wanted to hold her too, but we had to improvise for now.

Musical Beds

As the most stable patient in the PICU, Norah has been playing musical chairs beds throughout the unit during her current stay. When she changes beds, she changes equipment too. A few days ago they were moving her to a different room, so were unplugging her from everything. This means a respiratory therapist (RT) has to take her off the ventilator and manually bag her with oxygen (a squeezable bag is connected between her trach and an oxygen tank... you've probably seen something similar on TV). Well during this move, for whatever reason, the RT didn't bag her sufficiently & she turned very very blue. By the time we got to the new room (a short trip: just two rooms away from the old one) & connected her back up to everything, her oxygen saturation was below 50 & her pulse was about 70. Her eyes rolled back and Norah just stopped trying. The nurse urgently told the RT to bag faster, but instead another RT took over & they brought Norah back to us. Her color returned, and her eyes opened in shock as if to say "Whoa, what happened?" These events never get easy to handle. The nurse later apologized to me, but I told her it wasn't her fault & it was unfortunately nothing I hadn't seen before. This was true, but she knew that it had been upsetting. One would have to be heartless to not be affected by it.

On a lighter note, Norah was finally cleared to go back to the transitional hospital! She's grown to a whopping 3.53 kilos (7 lbs, 12.5 oz) & when trialed on the ventilator she was previously on (and didn't tolerate) at the transitional hospital, she did great! The little bit of growth has probably made all the difference. We'll let you all know how the transfer goes. They're thinking she may not need Life Flight this time, which would be much better on our pocketbooks, but we'll be sure that she gets everything that she needs to have a safe transfer. The plan is to send her back on Monday. We're excited to be taking this step forward (again). So this time our bed changing will be all the way back to South Davis! Woohoo

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!