Home, Sweet Home

I apologize for the delay...

Thanks to a life-saver of a nurse, Keira and I were home by noon on Saturday. This was after quite a few firm talks with various physicians. For whatever reason, K had a different doctor each of her last 3 days in the hospital. Each seemed to have his or her own treatment plan and the last two thought "just a few more days." They were worried, in part, that she wasn't eating enough. However, Jeff and I noted that they could never just let K rest for longer than an hour or two at a time. Plus, they would do things haphazardly such as giving her her Ativan, then not getting around to warming a a bottle for her until 30 minutes later. You wouldn't eat your bottle either if you were basking in that glow. So, in the end, I promised to keep the NG in Keira's nose "just in case" and to bring home a few doses of the meds to finish up her detox. 

Fun fact: Neither Medicaid nor Blue Cross covers Methadone, but the 7 doses cost my dad all of 53 cents. 

I was elated to bring Keira home. I felt like I was getting away with something when I drove her away from the hospital. I felt like I could breathe for the first time in two and a half weeks. 

Keira gave us the most wonderful gift that day. When I sat down with her in her nursery, she smiled and then started to laugh.  Really, really laugh. She was squealing with glee and was simply delighted. Her eyes sparkled and I understood the meaning of a person "lighting up the room." Keira was startled and overwhelmed, of course, by her own volume and soon became unsettled and cranky. But, she has laughed like that two times since. The best part is that I cannot capture a picture of it for you. Her laughter is so connected to us that she won't keep it up for a camera (Read: Not autism, not autism, not autism). 

What is fascinating to me is that somehow through all of this mess, Keira matured. Something in her oral-motor processing something-or-other clicked and now she can cough, she can really laugh, and she can cry (no more discontented meowing). She also discovered her hands and stares at them in fascination or brings them to her mouth. 

I SLEPT this weekend. That's about it. When I was awake I generally felt like I wasn't any good to anybody and should just go back to bed. 

I returned to work today. It was not so bad as I had expected. It felt good to be doing something I could sort-of control. Of course, it was wonderful to come home and squeeze the bejeebers out of my little girl and share a chocolate rose with my sweaty little boy. 

Good As New, Almost

Isn't. She. Cute? Saturday is the day. Really, this time. The NG tube is the only cord left and she didn't even use it today. We're just waiting. They taper her meds down a little every day and Saturday it will be 0. She is tolerating the withdrawal really well now. She doesn't do the grunting/back- arching/flushed/irritated-smile thing anymore. In fact, she is just sweet and happy. She seems to have come through all of this craziness better than I. She not only has maintained all of her skills (I expected a setback similar to or worse than Christmastime), she is already moving ahead. Mom says that Keira loves her PT. She smiles and looks at her. When the PT moves her around, it's like K is thinking, "Oh, thank you! I've been trying to figure out how to do that!" She seems to be so determined. She'll spend 40 minutes playing under her mobile, trying to figure out how to be more proficient in the use of her arms.

I've been on the proverbial roller coaster. I feel disoriented and uncentered. I feel like I haven't been anywhere over the past few days. I haven't really been at home or at work or at the hospital or with the boys or sleeping. I've started an unhealthy Bejeweled habit. However, I am getting by and our friends and family are definitely picking up the slack.

The boys like the hospital. The last few evenings I've been alternating taking Ronin and Liam to see Keira, watch Scooby Doo in her room, collude with my Bejeweled addiction, and eat dinner with me in the cafeteria (Ronin likes anything that comes with a bag of chips. Liam opts for sushi.). When I bring them one at a time they don't argue about who gets to push the elevator buttons.

Funny story: Yesterday, Ronin got stuck in the revolving door. He wanted me to wait while he went around "just one more time." So, I did, but apparently he isn't tall enough to trigger the automatic turnaround, because the door stopped when he was half-way through and he was trapped like a caged animal. I thought it was pretty hilarious. He wasn't sure why I was laughing.

My day made a sharp turn for the better today when Jeff offered to stay another night at the hospital. Then I did some retail therapy (Keira must need the cutest new clothes to make up for 2 whole weeks of nudity, right?) and got a cup of coffee. Visited Keira who is Just. A. Doll. Liam and I are are the only ones home tonight. We read Summer of the Monkeys. I let him sleep in my bed. It felt like a slumber party. But then I couldn't sleep. So here I am.

I can't wait to have all my birds in the nest again.

P.S. The quilt in the background of the picture is courtesy of Project Linus. http://www.linusidaho.org
Such a cool charity. Because of them, Keira has had a pretty quilt on her bed in her otherwise sterile-looking room every day since she's been at St. Luke's.

Along those lines, Keira also received a "Joy Jar" while in the PICU from this charity: http://joyjars.negu.org

I decided today that if I ever am a politician (which I won't be) or start a charity of my own (which I don't plan to), I'm going to target hospital waste. It is UNBELIEVABLE what is deemed "disposable" and thrown away in the hospital after a single use. Or no uses, as the case may be, if your glove or mask or instrument of any kind gets dropped on the floor by accident.

Walk With Us

For all of you out there who have been asking how you can help, here is an opportunity for you.

Join us for the March of Dimes' March for Babies on Team "Keira Elise." During Keira's 4 weeks in the NICU, the March of Dimes worked hard to ensure that Keira (and her family) were provided with excellent care and support. Help us celebrate Keira's life and raise money for this wonderful cause.

WHO: Friends, family, acquaintances, coworkers, blog readers, etc.

WHAT: The March of Dimes March for Babies (Team "Keira Elise"), a 3 mile walk

WHEN: Saturday, April 27th, 2012 9:00 am registration and 10:00 am start time

WHERE: Julia Davis Park, Boise

WHY: Because you love Keira, or the Halls, or the Ponsfords, or babies in general

HOW: Join us for the walk. Sign up so that we know you are coming and can get you a t-shirt.

AND/OR

            Donate any amount you choose to the March of Dimes

"Funds raised in March for Babies support research and programs that help moms have full-term pregnancies and babies begin healthy lives. And they will be used to bring comfort and information to families with a baby in newborn intensive care."

It's easy. Just follow the link below. 

http://www.marchforbabies.org/personal_page.asp?pp=4772724&ct=4&w=6040025&u=bekahelise

Steppin' Down

Yesterday, Keira moved to the pediatric unit. I sort of feel like we got left by the side of the road. So, Peds is a "step down" in care, but it's been a little jolting. The nurses are all kind, but they are much more hands off and there is less consistency and frankly, less knowledge of the patients. Each nurse has 4 patients here instead of 1. So, someone needs to be with her all of the time. Jeff noted that this week will be less scary but more fatiguing.

We had hoped K might come home tomorrow but its probably going to be more like Friday. She is doing really well, even starting to cough a little on her own. She has gone from 20-something attachments to just one or two.

Primarily, we're still here for detoxing. It's obvious when she's due for another "hit" because she starts acting weird. That's my best description. She smiles even though she's not really happy. She gets clammy and flushed and gets really stiff. She arches her back really hard...she's got a beautiful cambre (google: cambre ballet images). A couple of times we've had to slow down the weaning process because these episodes have been too long and pronounced. Aunt Steph just talked her down from one of these and now she's resting peacefully with her "hookah" (blow by oxygen).

The Wall

I stayed with Keira at the hospital last night. I felt pretty helpless. Her cry was silent, so it wasn't enough to wake me or alert the nurses. Therefore, I was up much of the night. She was upset and crying most of the time and was difficult to soothe. The "spaghetti" (her many many medical cords and wires) make her difficult to hold and cuddle. The withdrawal from medications makes her cranky. The nurses were avoiding giving her medication to make her more comfortable because that would lengthen the weaning process. I felt pretty useless. When they came to do her respiratory therapy, I had to leave the unit. I felt exhausted and sick and almost came home in the middle of the night.

This morning I didn't want to get out of bed. I thought about staying home alone, all day. I didn't want to make any decisions. However, I quickly recognized that this is an old pattern that I've been trying to avoid, so I promised myself I would blog about this impulse before the end of the day. I realize, too, that I'm entitled to feel like shutting down and that it makes a lot of sense, actually, that I'd start falling apart as soon as K was starting to feel better. I let myself sleep until 1 pm.

When I called my mom, she told me that K had had such a happy morning! She'd been awake and playful, smiling at Lovey, and eating from the bottle. She was even trying to reach for the stuffed animal with her hand. This is amazing to me. She seems to be developmentally picking up right where she left off. I didn't dare to hope for that.

When Jeff and I finally got over to the hospital, Keira's smiles had run out. She'd had several visitors, gotten really overwhelmed, and become very upset. What was I thinking telling all of you to come visit whenever?? Even though she's feeling better, this is still the baby that gets so overwhelmed by stimulation that it sets her back. So, from here on out, let me know when you want to come to the hospital and I'll make sure it doesn't get to busy in Keira's room.

Keira eventually calmed down and I got to see her lovely smile. She was completely off the oxygen today. The doctor and nurses can't believe how well she's doing. They anticipate that she will move to the pediatric unit tomorrow and may go home in just a few days. She has to be taking all of her food on her own, stay off the oxygen, and be completely detoxed from her meds. We'll also have to be sure that there isn't too much residual gunk in her chest (although, she's starting to get an idea of how to cough, too!).

Jeff and I went to dinner with good friends. So, at the end of the day, yes, I hit a wall. But it was one of those walls that's pretty easy to climb over because some of the bricks are artfully sticking out enough so that you can get a foothold.

Here are the smiles you've been waiting for.

Cuddles

Sitting here with K asleep in my arms. She's breathing hard but generally doing well. She even took a bottle from Grandma earlier!! That is worth celebrating because it was questionable whether Keira would remember and/or use that skill after all this.

Fewer tubes today...she still has an NG tube and a nasal cannula ("there's only so much real estate in the nose," the doc says.) We were told to expect to be here another week to ten days. In large part it's because she is now detoxing from narcotics...alternating methadone (Yes, methadone!) and Ativan every 2 hrs.

Things are generally more cheerful around here. The sun is shining. Aunt Shelly is here. The PICU is no longer overflowing with RSV. The staff are all wearing super hero capes (a mom from the peds unit made a bunch of capes for the kids to wear to cover their behinds when they get out of bed.)

It'll likely be much easier to visit from now on, if you're interested. We'll be moving to the regular peds unit in the next couple days. When I told Liam that K would be here another week, he cheered! The boys feel like they're on vacation at the Halls and I know it'd best that I miss them more than they miss me.

I'm staying the night with Miss K. They may let me nurse. Hope so. I resent my attachment to the pump.

She's "Flying!"

Step 1. Stop the sedation and wait for her to wake up. She was "snowed" so this took a bit. I was so excited for her to wake up. It felt like I was anticipating her being born.
Step 2. Wean ventilation. She picked up her own breathing and smiled at us.
Step 3. Remove breathing tube and apparatus.
Step 4. Wait. This was tough. I think they were thisclose to re-intubating. K was breathing really hard and grunting and arching her back. I was sure she wouldn't settle down. The nurses looked nervous. The doc kept coming in and advising that we wait it out. I was not confident. But then the head nurse changed Keira's dirty diaper and she settled to a much more tolerable level. Who knows how much that really had to do with it, but it was kinda funny.

Now she's resting. She has to be monitored very closely as she'll be withdrawing from narcotics. She'll likely be pretty cranky. I hope to get to hold her (finally- after over a week!) later today.

No Go

We got all set up to extubate this morning. However, when they weaned Keira from the ventilator she was still having to work way too hard to breath. So now she's back on the vent and sedatives. I'm ok with this. Everything is still trending toward getting better. She just needs a little more time. We're going to try again on Friday.

Yesterday, K got a visit from each of her brothers. Ronin brought her a stuffed monkey (fitting) that he named Lovey. Later, Liam came and the sound of his voice made her smile for the first time in a week.

Today's plan:

Everything is looking up. Today they are going to start working on weaning the respirator (while monitoring sedation), with the goal of removing the breathing tube tomorrow. Pray for us as we go through this process because as her sedation decreases she is likely to be very uncomfortable. A crying baby is a breathing baby. Sigh.

Changing of the Guard

The doctors here are on for a full 7 days at a time. So, Monday is the day that the "new" doc comes on. We were told to expect a slight change in treatment plan, just because each doctor is an individual. I was very happy with our new doc. He goes by his first name and has hair like my husband. I liked his approach. He more or less told us that it's just a waiting game now, that we need to not rush her, and once kids are on the respirator it's at least a solid week. Then he fiddled with the respirator settings to make Keira work harder. Nice.

Keira is more alert today, which I guess is a good thing. Alert enough to open her eyes, wiggle her feet, and look at us, but not alert enough to fight the ventilator or need to move around a lot.

I've been looking forward to getting her off of the ventilator, but I understand that it's best not to rush that part. Basically, the longer we wait, the more she'll be over the virus. That's good, since she still doesn't cough on her own and, as you know, sometimes that cough can hang on for a long time.

I'm home from work today. Not sure what I was thinking when I thought I would go. Jeff is working but is doing his first day at the cranial-facial clinic (something he'll be doing one day every other month), which is right here at the hospital, so he gets to pop in every now and then. Janie got the boys off to school, but I'm going to have them come back home tonight. I miss them.

She Pooped

 

It was an uneventful night. Thank goodness. We found that she does, in fact, have RSV, which doesn't really mean anything except that we're on the right track. She just had a poopy diaper, which means they are getting all of her digestive tract working in spite of the Fentanyl (anesthetic/seditive/narcotic). We're waiting to hear from the doctor. I'm hoping they may try to wean her from the ventilator today.

 

Some "cleaning fairies" were at my house yesterday. It had an unfamiliar clean smell and I swear they bought me a new kitchen faucet, but they swore they just cleaned it. Jeff said their visit was the opposite of vandalim. Ha ha. Not that I wish this experience on anyone, I hope I can return these, and other, favors some day.

 

The boys are having a great weekend with plenty of spoilage from Grandma Janie. Ronin is enjoying playing with the puppies and Liam likes having Ronin out of his hair.

 

They have good chinese food in the cafeteria (except for the asian slaw).

 

An old friend drew this picture for K. Is that not cute?

 

 

Progress

We are breathing a little more deeply today. The medical team seems to have largely figured out how to avoid various troublesome reactions. Her chest xray looks better today. She is resting comfortably on her belly right now. The doctor is excited about her progress and his plan for her. They hope to wean her from the respirator so that she can breath on her own. However, they will still probably keep her sedated so that they can continue to suction mucus out of her lungs when she "coughs." Things seem to be going well, but we're still probably looking at a week or so before she can come home.

My parents have been doing shifts with Jeff and I to ensure that someone is with Keira all the time. It's true what they say...even when she's in a coma it's evident that she hears (sometimes she opens her eyes and she still startles to noises) and she prefers certain things (ie. her vitals are more regular when she is on her belly, which is how she likes to sleep at home). It seems helpful to have someone here to advocate for her in these ways. I'm not ragging on the hospital staff, because they are great, but they seem most interested in the obvious and most critical problem at hand. However, we see a slightly bigger picture, knowing how, on a normal day, being overwhelmed continually causes her to be very disoriented and even to decompensate. That has to apply even now. Iny fact, the doctor even said today that maybe we should have intubated sooner, which is exactly what I had thought when I saw her eyes and body posture while she was struggling to breathe a couple of nights ago. Sigh...we live, we learn. I trust the staff and know that they are all human, all want the best for her, and all have judgement calls to make based on the information they have and that there isn't necessarily one way to do things.

Unfortunatley, the boys can't come see their sister because they, too, have colds. Jeff and I went to Liam's basketball game this morning and went to lunch with them. They're doing great. I gave them some honest, though limited information on how Keira is doing. I told Ronin that Keira pees into a bag. He thought that was pretty funny.

All Is Well (For Now)

Keira is resting comfortably. Pray for no drama tonight. The boys are with Grandma Janie. Jeff and I are going to get a good night's sleep. My dad is with K.

Things were largely stable through the day and into this evening. They've gotten a better feel for how to keep her properly sedated and comfortable, how to help the gunk out of her chest, and how to avoid her heart decelerating. Her lungs seem better overall (yea, I forgot to mention that a lung collapsed last night...it seemed minor in the scheme of things) They may still give her blood, but we won't know till tomorrow.

The biggest concern as we left this evening is that K is retaining fluid. She's all puffy and swollen. They've been giving her extra fluids, but she needs to keep eliminating them, too. So, they're keeping an eye on that.

They brought her sedation down a tad this evening, so she's not completely looking like a CPR dummy. She'll grasp your hand, stretch her legs, and open her eyes briefly from time to time. She seems to respond somewhat to voices as well.

It looks like all of this has just been a simple chest cold. No RSV or flu or anything that we know of. Very little fever. So we're just trying to keep her supported and comfortable until she can beat the cold. We've been warned that it could still get worse before it gets better, as we all tend to feel the worst on day 3 or 4 when we get sick.

Thank you for keeping up with us and being there for us. I regret the impersonal nature of blogging but I can give you much more information than I could if I was having to call or text many different people.

Orchestrating

So the human body is this miraculously designed thing. All the systems, typically, work together flawlessly. We are seeing first hand how introducing something foreign to the body impacts EVERYTHING.

Twice this morning K's heart beat went down to a dangerous level. She might need blood given to her later today. They are trying hard to balance just the right amounts of sedation, anesthesia, pressure in her lungs, etc. all this has affected her red blood cell levels, heart rate, temperature, urination (she's on a catheter now), etc.

See these monitors? There are at least four of them. The doctor's job is to orchestrate every number on them so they work together for maximum health and benefit. It's not an easy job.

I feel like we're living hour by hour. It goes from good to bad to good to bad very quickly.

Our little dancer had a visit from the Trey McIntyre Project this morning. I have to admit that even I thought it was a little weird when I learned months ago that they perform in the hospital rooms. But...they are so good, so professional, so beautiful. I watched a very sick boy sit entranced by their dance. The music wafts through the unit like fresh air. Watching them dance made everything ok, even for just a minute, in the middle of all this.

Keep on dancing, K!

Fighter

Welp. Things went from bad to worse very quickly. As I sit in the corner of room 4065, Keira is resting peacefully due to her breathing tube and sedation. When I got here at 7:00 my mom told me about K's day, about how she was doing pretty well and seemed to gradually be getting better.
Less than an hour later I was wondering whether my mom was crazy, because if this is what "better" looked like than I just needed to bring Mom back to hold K some more.

Keira's breathing was so labored. The small reprieves during which her little abdoman was not working so hard and she was not grunting with each breath became fewer and farther between. Steph came to be with me (well, with Keira--she has cuter thighs), which was perfect timing, because she helped me keep my wits about me. I kept calling the doctor and nurse back, asking, "How bad does it have to get for you to do something more to help her?" I felt like I was watching my daughter drown. She was using her whole body to try to breathe. Her forhead was starting to turn blue. I felt like I couldn't breathe. They were holding off on intubating her because she still seemed to be getting the oxygen she needed. However, about this time, nurses, anesthesiologists, docs, and RT's started swarming like flies and the doc finally decided all of a sudden to intubate.

Intubation is scary. As Jeff said, she's basically in a medically-induced coma. The machines are breathing for her and will continue to until her chest cold has cleared up. Then they will slowly try to wean her off. I am relieved because she's peaceful now. She's not working so hard. But now we can't hold her and we just have to wait. Best case scenario: She's off the ventilator within a few days and is able to smoothly go back to breathing, eating, etc. on her own. However, you know that on an ordinary day, we struggle to keep Keira calm and regulated. We suspect that all of this trauma will be quite a setback, to say the least.

When we checked into the PICU last night, it was not lost on me that the ICU is the "last stop," of sorts, for kids who are terminally ill. Tonight, when we moved to a more "restrictive" course of action, it became real that losing Keira is a possibility. But I have to say that in this moment I'm feeling quite at peace about where we are.

After the crowd cleared out and K was resting quietly on the bed, she was naked aside from the various masks, wires and other medical accoutrements. I put a cheerful hat on her and put my favorite rainbow-striped "baby legs" (legwarmers) on her arms. I think it was an act of audaciousness in her honor. When I think back about how on earth her oxygen levels were still so good when she looked so bad, I choose to believe that that was K's little spirit. She is such a fighter and was working so so hard that she was able to keep everything working in spite of her discomfort. So proud of my little fighter.

PICU

Once again we've been surrounded by the love and support of our friends and family and many others as well. Thanks for rallying for us. Here's what's going on: 

Yesterday Keira had a pretty good morning,  complete with a doctor's appointment at which I was put at ease because the doctor heard no rattle at all in her chest, something I'd been mildly concerned about. However, Keira became sick amazingly quickly over the course of the afternoon. At 6:45, I took her to the emergency room because her breathing was becoming labored and she was continuously doing a red-faced gag/hack/wretch rather than a cough. 

The ER admitted us to At. Al's Nampa and they, in turn, transferred K via ambulance to the pediatric ICU at St. Luke's downtown. It was a looong night. They tried, for hours, to do an IV or a PIC line (she was stuck unsuccessfully in her hands, arms, neck, and groin) and finally did this crazy last resort battle ground type move in which they stuck the needle perpendicularly right into her leg bone. That lasted just long enough to give her some fluids because at that point she hadn't eaten in 12 hours and was getting dehydrated. 

Poor thing was so worn out that she wasn't even crying anymore. Just kind of laying there like she's in shock or something. I was finally able to hold her in the early morning and that made us both feel better, I think.

So they have run tests for RSV and done xrays for pneumonia. Doesn't look like she has either at this point. She probably just has the croupy crud that the boys have both had, but it's severely confounded by her size and her inability to cough the stuff up. So, she's in the hospital for observation. She isn't on any meds. She's getting oxygen and feeding through a tube. My mom is sitting with her right now. Her oxygen saturation is good but her heart rate is nuts (like 200) and her breathing is very shallow and labored. Hopefully we'll just be waiting this thing out for a few days. If it gets worse, they will have to sedate her, give her a feeding tube, and/or suction her lungs.

Jeff and I are back in that familiar mode where we are only planning for the next few hours. We've got all the kids (and ourselves) taken care of through tomorrow morning. We will keep you posted here and  call you if you can help us out. 

Thank you for loving my daughter. And the rest of us too. 

You do know, don't you, that I love Liam and Ronin, too?

anxiety speaking.

The things we take for granted

I got the emotional wind knocked out of me today. First, I accidentally startled K when I was giving her her vitamins. She aspirated them and turned bright red. She gulped air, sputtered, gagged, choked, and vomited, but didn't cough. She can't cough!!

She's okay now, aside from a residual rattle in her chest.

Then, I took her to Liam's basketball game. I usually avoid this venue as it is pretty loud and overwhelming for Keira, but decided to wade into this territory in order to a) help her acclimate and b) avoid getting another sitter (Side note: It's become pretty sad to me lately when Jeff, me, and the boys go out together without Keira. We usually have K with a family member while the rest of us can go do something rambunctious. I feel kind of empty in these situations. We even have one friend that jokes with me that we never really had a baby because as many times as we have seen him since she's been born, Keira has never been with us).

The game would have gone fine, really, except that towards the end I looked across the court and noticed a beautiful baby sitting in his daddy's lap, looking around and enjoying the surroundings. I thought that I thought he was just cute and that was that. However, I did figure that his age was probably around the same as Keira's and then found that I couldn't stop thinking about that kid....Wow, he really is so much more developed that K.

Right now Keira can easily pass for just a cute baby. Unless you hang out with infants regularly, you wouldn't really know there was anything amiss. What's it going to be like in a year or two if/when it becomes obvious that she is very different? How will I handle that? Today I learned another reason why parents of kids with severe delays don't take their kids out much. Again, it's not about the kid. It's about you, the parent, risking running into other children in the same age bracket as your child and tripping into a black hole of grief or what-ifs or what have you. I need to get beyond that. How will I get beyond that?

I need my sense of well-being not to correlate exclusively with my perceptions of how Keira is doing. I need that to be true for me, for her, for the boys, for my marriage. I can't be that wife/friend that can't talk about anything else, who has no identity of her own. Yet, I see glimpses of that already. They say that your love for your child and your grief over the loss of the child you thought you were going to have are not mutually exclusive. Thank God. Somewhere in there I need acceptance of the condition that she has, whatever it is. I fear what that process entails and dread that it's probably lifelong. I wish this didn't have to be such a long process. Something tells me it's only just beginning. Largely the fact that I've shed very few, if any, tears since that first 48 hours.

So, we had friends over tonight, which was a welcome distraction and positive movement, I would guess, in the right direction. However when they left, I felt really anxious, a flood of emotion. So I cleaned the office. Something I can control. Sort of.

Check out my knees!