Tuesday, March 31, 2015

A thankful heart, Part II

Continued from Part I, which you can find here.

The PICU room was huge! Joci was in a regular bed in the center of the room. In the PICU, there is one nurse per patient. So we had Nurse Patty all to ourselves. When she wasn't in the room with us, she was sitting at a desk outside the door watching Joci's monitor. There was a couch that converts to [what is called] a bed. And then we had two chairs. They keep the lights on all day and all night. There's one toilet and shower down the hall for everyone to share. And you're not allowed to have any food or drink in the rooms. It wasn't ideal, but at least we could be with our girl.

We sat with Joci for a few hours, holding her hand, giving her kisses, and talking to her whenever she opened her eyes. Eventually, she started keeping her eyes open for longer periods of time, but was still sleeping a lot in between. I decided I should take a break to eat sooner rather than later, when she was more awake. So I left her with Jon while I at lunch/dinner down the hall in the kitchen. Of course, not long after I left Joci woke up and said "mama." I felt so sorry that I'd missed it!

That evening, Uncle Jared and Aunt Kylee stopped by to visit. Joci was awake, but not very responsive. But Jon and I welcomed the distraction! She did manage to raise her eyebrows when she saw the humongous princess balloon and "'Rella" stickers they brought though!

Originally, Jon and I were going to both sleep there that first night. But one look at the "bed" and the two chairs in the room and we decided it would be better if Jon went home to actually get a decent night's rest. I did notice that the other rooms had recliners in them. So I asked the nurse and a few minutes later she was pushing one into the room for me. We rolled it right up to the side of the bed so I could hold Joci's hand through the night... except I couldn't keep the back of the chair in a "reclined" position.

By 1:00am, I gave up and moved to the "bed-like object" in the back of the room. I hated being out of her sight, but I was still getting up every one or two hours to click the PCA for an extra boost of morphine. They started her off at the lowest recommended dose of morphine and then Jon or I or the nurse would use the "clicker" if we noticed her getting uncomfortable. At first, I was little unsure. Just how do you know when a 20-month-old is in pain? But it quickly became obvious, during that first day at least, that whenever she started to move or cry it meant she was uncomfortable. And she'd usually fall back to sleep within a minute of getting an extra "shot."

Some of the "treats" we received while staying in the hospital.
The worst part of the night was when Joci was upset and wanted me to hold her. She'd try to reach her arms up to me but couldn't get very far with all the tubes and wires, which only made her more frustrated. So it was almost more of a relief to have her sleeping. She also got thirsty in the middle of the night, something to be expected, especially after having a tube down her throat for several hours! We offered her some watered down juice which she guzzled in a hot second and then asked for "mooore!" We didn't want to overdue it so soon, so we let her fall back asleep and then gave her another cup when she woke up an hour later. This one didn't fare so well. And when she threw-up her third serving an hour later, they decided to put her on some Zantac.

And this is my frustration with pharmaceutical drugs. Obviously, I'm not going to argue with my daughter's need for some pain control those first few days after heart surgery, but unfortunately, there are side effects to morphine. Itchiness is one. The poor thing kept scratching at her face--no small feat when both your hands are bound up with gauze to keep the IV lines in. She was already started on a pump of Naloxone (a morphine reversal medicine that they give to those who overdose on heroin to reduce side effects.) It can also cause constipation, so they gave her two different medications to deal with that. And now we had to add a fourth ingredient to her cocktail. You can see the potential for a slippery slope, and it just made me appreciate even more that our daughter is otherwise healthy.

I ended up moving back to the recliner sometime after 4:30am. Up until that point, Joci had only been mumbling "mama" and "ow" a few times (and "more" whenever she finished her drink!). But later that morning, she woke up, looked me right in the eyes and said, "Hi!!" It was so cute and encouraging!

Now that she was a little more alert, I didn't feel comfortable leaving the room. I was hungry, tired, dirty (still wearing the clothes from the day before that I'd "slept" in) and patiently waiting for Jon to arrive with some hot coffee! They delivered breakfast--chicken broth, cherry italian ice, jello, and juice. It was Joci's first taste of jello and she loved it! Later they let us bring out the goldfish that Nonnie had sent in a care package and she went to town on those as well ... and even remembered to share with Mommy and Daddy!

Joci was already looking much better, and when the PICU team made their rounds (when a large group of doctors and nurses comes to each room to discuss that patient's case) they were hopeful that we could move off the PICU later that day. The cardio team and pain management team (see what I mean? Sooo many people working with us!) also agreed things were looking good! We just needed to wait for a room to open up on the 9th floor (the wing of the children's hospital for babies and toddlers).

It didn't take long for us to figure out that "waiting" is just part of the hospital game. And "soon" could mean several hours. In the meantime, Joci was more and more awake and wanting to be held! I sat on the bed next to her and snuggled her as close as I could without messing with her wires. The nurse came in and asked if everything was alright. Well yeah, but she just really wants her mama. She asked if I wanted to hold her. Yes!!! A thousand times YES!!

But before we could do that we had to start removing some of the tubes. Little did I know it would be over an hour between "would you like to hold her?" and me actually getting her in my arms! First to go was the catheter. She didn't seem to notice it's absence but I felt relief on her behalf! Next up was the neck line. Remember when I said Jon and I didn't realize how far into her little body it went? Well we were both watching when the nurse pulled it out and we both about keeled over in the process. *shudder* This is the one that was stitched in, and removing the stitches was a bit more traumatic to Joci than removing the actual line. The regular IV would stay until it was time to leave the hospital. And the temperature sensors came off easy-peasy. They waited until right before we moved to take out the arterial line in case more blood draws were required in the meantime.

That left just that lovely drainage tube/bulb and then the electrical sensors. She was down to 1/3 of the tubes and wires she had started with but it was still difficult to maneuver her out of bed. Of course, we made it happen. And approximately 31 hours after we had kissed her goodbye in the OR, I had her back in my arms. Best.moment.ever.

She fell asleep within seconds. And, while this is purely my unmedical opinion, I'm quite certain her need for pain medication significantly decreased once she was in her mama's arms. I don't think we need science to prove that mommy's touch is an analgesia all on its own!

I held her and held her and held her until I really had to go to the restroom. And they finally notified us that they were ready to move her to the 9th floor. That meant removing just that final arterial line (which was a doozy and required a massive bandage!), and then we were sailing down the hall. Okay, not exactly. There were two nurses pushing a full-size hospital bed down the hall, and then Jon and I with all our bags--to get stuffed into an elevator. But when the doors opened onto the wing you could already sense the freedom! So bright! So airy! Not to mention a shower and toilet right in our very own room!

This room was a bit smaller but oh, look at those views! Jon and I celebrated our 9th anniversary during our stay there and if you stood at the window, and turned your back to the nurses and machines and hospital bed, you could almost pretend you were staying at a luxurious hotel in downtown Baltimore. Almost.

Things were so much more relaxed in the new space. I could hold her whenever I wanted. We could eat and drink in the room. She was gaining an appetite for more than just goldfish and jello. And when I pulled out my secret stash of Middlewarth BBQ chips, Girlfriend wanted in on the action! Unfortunately, the gauze wrapped around her hand smelled like BBQ chips for the rest of our hospital stay!

The nurses on the 9th floor were so sweet ... and young. Jon would ask them where they went to school ... and then we'd find out they graduated in 2013. It definitely made me feel old! Margaret, the night shift nurse, was my favorite. Jon went home again our first night out of the PICU. I tried to sleep on the "bed-like object" in the corner of the room, but Joci was up every hour, on the hour, until early in the morning. I finally crashed sometime after 3:00am and didn't wake up again until I heard voices in the room at 7:30 the next morning!

That shiner above her right eye isn't from the surgery, that would be from falling out of bed earlier in the week ...
I was so excited that Joci had slept a solid 4 hours on her own that night! It wasn't until the following evening, when Margaret came back in, that I found out that she had sat up with her for awhile, around 4:30 in the morning, because "I get to sleep during the day and you don't." So they were super nice to me, and extra-super nice to Joci! By Wednesday (second day post-op), we were told that she could get the chest tube out. They brought our original nurse practitioner in for this (the one we met with the week before who walked us through the entire procedure.)

This is "serious Joci"--how she was our first day on the 9th floor.

Not only did the tube enter in under her incision but it wound up and around in her chest cavity for several inches. When they originally placed it, they made a special stitch that allowed the incision to be quickly "cinched" closed after they removed the tube. These are Joci's only visible stitches and they'll come out at the pediatrician's tomorrow! It wasn't an easy task to remove the tube and Joci got a little upset. But by the end she was free of yet one more tube AND they gave her some plastic Care Bear bracelets for being brave.

The fleece bunny blanket with crocheted trim was a donated to the PICU. We brought it home and she still sleeps with it at night!

And lemme tell ya, Joci LOVED those plastic bracelets. She asked me to take them off and put them on a gazillion times that day. She slept with them on. Somehow they got separated from her person for a few minutes one day while the cardiology team was making their rounds. One of the few male doctors we saw while there was absentmindedly playing with Joci's precious plastic bracelets during the whole briefing bit. Joci noticed and immediately started pointing and yelling at the poor guy, disrupting the entire presentation, and forcing him to not only return the bracelets to her but put them around her wrist as well. Meanwhile, the rest of the team had a good laugh!

One of our goals for Wednesday was to get her up and walking around. We got sidetracked by hospital bingo--a game played throughout the hospital by watching a live feed on the TV. This was a special day with parents' bingo first. Jon and I won a Barnes and Noble gift card! Afterwards it was the kids' round. There were so many prizes available! Since Joci had already received lots of toys, books, and stuffed animals while staying at the hospital, we decided to pick out some Star Wars Legos as her prize. She didn't know any different, and her brothers certainly appreciated her generosity!

Big Brother Jack is slightly jealous of Baby Sister Joci's new stuffed animal collection she brought home with her!

As soon as bingo wrapped up, we got her on her feet in some of those fancy hospital socks. She was a bit wobbly at first, but soon enough she was cruising down the hall faster than we could push her IV pole behind her! We discovered the Child Life area, which is basically a big playroom, with yet even more amazing views of the city. She had the time of her life making me dinner in the play kitchen and stealing toys from a boy twice her size. She didn't even seem to remember that she was still hooked up to an IV.

By the time we got back to the room they let us know it was time to take her off the IV meds. Soon afterwards, Marmie, Poppa and the big siblings stopped by for a visit. Jack, Jude, and Julia were thoroughly impressed with Joci's digs and especially the playroom at the end of the hall. The boys even said they hoped they could stay in a hospital one day. Finally free from all her tubes and wires, Joci was climbing, pulling herself up on furniture, and chasing her brothers and sister just like old times.

It was a long day and a busy evening, and soon after our guests left, she fell asleep in my arms. She was due for some oral pain meds before bedtime, but since she was sleeping so soundly we decided we'd just give them to her as needed that night. It turned out that she didn't need any! Although Nurse Margaret had told me to come get her when Joci was awake, every time she woke up she ended up falling back to sleep in my arms before I had a chance to find the nurse. It was her third night after surgery and she was already making it through the night within any pain meds!

Small things we brought to keep Joci busy.

And my collection to keep me busy ... I think I read approximately 2 chapters of my book, watched 1 hour of "Wives and Daughters," forgot my laptop the first two days, and never turned it on the other two. Don't ask me what I did there all day, I have no idea either!
By Thursday morning she was definitely back to herself! Jon was coming in later that morning, but I didn't trust her wild little self alone long enough to take a shower or grab a coffee. At 6:00am she was asking for jelly beans ... and then threw a screaming fit when I said no. (I caved a few minutes later. I mean, open-heart surgery patient. I just can't say no.) Finally free from any tethers she was constantly climbing in and out of the bed, chairs and couch... and asking for my help whenever she got stuck. She discovered one low light switch and flicked it on and off a dozen times ... laughing with each and every blink! She grabbed the box of tissues and pulled them all out one at a time. And then, when I was on the phone, she decided to push all the buttons on the remote controller, including the one that calls the front desk, three times.

This is not-serious-Joci--she's baaaaacccckk!!!
I think Jon could tell I was at my wit's end, because after he arrived he offered to take her on a walk. It became her new favorite activity. And so between the two of us we walked laps and laps and laps around the pediatric wing, with a little girl who would growl every time we suggested a rest.

We took a bunch of selfies that morning, it was the only time she stood still!
Between the med-free night and the energetic morning, the cardiology team agreed that Joci was recovered enough to be sent home. The nurse asked Joci if she was ready to leave and Joci started to cry. I, on the other hand, was more than ready to finally feel the fresh air again! Of course, there was more waiting and paperwork. But we made it out to the car in time for Joci to catch her afternoon nap on the way home. We stopped to pick up "anything-that's-not-a-sandwich" for lunch and also to get Joci's prescriptions--a laxative (that we stopped using after the first day when it proved itself to be a "smashing" success one too many times), Tylenol (which she's only taken a few times since coming home), Aspirin (she gets a half pill once a day for the next two months to prevent blood clots), and iron (she was anemic in the hospital but they told us to hold off on this until talking to her pediatrician this week.)

Surprisingly, the girl who was parading around the house in *only* snowboots the night before her surgery is a little modest about her scars.
It was a beautiful day to come home! Joci was thrilled to spend some time outside, and Marmie gave her a special tubby to wash off all that hospital funk. Our first night home was a little rough--she was up crying a few times in the night, my guess was that it was more of a constipation issue than a heart one, and our morning started very early. But no complaints here as she is already back to her smiley, feisty self! 

Life is slowly getting back to normal. I spent a few days utterly exhausted. But little by little we're getting caught up on laundry and cleaning and, if we're lucky, I may just get out to buy some groceries tomorrow! Thankfully, between my MOPS friends and Jon's work friends, we've been well fed this weekend. We even made it to church on Sunday! Joci's not supposed to be in any "childcare" settings for a little while, so I spent a good portion of the service walking up and down the lobby with her. But for the most part, she rarely complains--just the occasional "ouch." We do have to be very careful that we "scoop" her up (rather than lift her under the armpits) for the next few weeks since her sternum is still healing. It's actually much harder than I expected. Lifting a baby under the armpits is so instinctual, we've definitely forgotten more than once!

Thankfully, we made that random decision to move her to a "big girl bed" the other week, because I can't imagine getting her in and out of her crib (that was under a bunkbed) without bumping her chest in the process. But other than all that, we're just amazed at how resilient she is!

And finally, a massively huge thanks to all of you who called/emailed/texted/messaged/posted/prayed/whatever it is we do these days to let us know you're thinking of us! I didn't have a chance to write back much (heck, I didn't have a chance to do much of anything last week!) but I want you to know I read each and every comment and everyone's love and support was so very much appreciated! I've kept all the cards, I'm saving all the messages, I took pictures, and now I'm finishing up this story because, while I'm thankful that Joci will forget much of this ordeal, I want her to know how special she is to our family, to so many people that she's never even met, and especially to God, who's held her little life in His hand from the very beginning and has continued His hold throughout this difficult week.

I've said it before, but this little girl is such a gift! And we are so happy and thankful to have her healed and whole today!

Sunday, March 29, 2015

A thankful heart

We are home! We are happy and healthy and resting ... or trying to rest. Jocelyn's open-heart surgery was Monday morning and on one hand, I feel like I've lived a thousand lifetimes since then. And then other times, it feels as if this week never even happened. I am physically exhausted from [not] sleeping at the hospital. But I'm surprisingly mentally exhausted as well. So I'm going to do my best to remember all those hazy details over the next few days (because it will inevitably take me that long to finish this up) and recount it all for you in layman speak.

I'm not a medical person, I avoid the doctor at all costs, and up until this week, I wasn't really interested in anything remotely medical. So I'll be using my own words to hash this all out ... with apologies to all my nurse and doctor friends who may be scrunching up there noses at my interpretations. Carry on!

Whenever anyone at the hospital asked how we (the parents) were doing, they always followed up with "the night before is the worst part, right?" Well, I have to disagree (I'll share my thoughts on the "worst part" in a minute.) The night before wasn't great, but it wasn't too bad either. I didn't have the best sleep, but it may have helped to have it cut short by a few hours so we could make it to the hospital by 6:00am. Jon made scrambled eggs for breakfast and despite having no appetite whatsoever, I forced myself to eat knowing that another meal opportunity could be a very long ways off. We slipped Joci out of bed a little after 5:00am and moved her right to the car, hoping she'd fall back to sleep on the way there. She hadn't had anything to eat since a little snack the night before. And she wasn't allowed to eat anything before surgery. So I was crossing my fingers that she'd sleep most of the morning and that our pre-op stuff would move fairly quickly.

It was nice to have "smiley" pictures to look back on during the hardest days at the hospital.
She didn't sleep. But she never complained about being hungry either. I think she was just too enthralled with having mommy and daddy all to herself and exploring the big, shiny building that is Johns Hopkins.

A word about that complex (and I use that term intentionally, the place is a massive maze)--it was a huge blessing for Joci to have her surgery there. Being a military family, we're used to being told what to do. We were told to go to Hopkins. We were told the surgeon we'd been assigned to. And so that's what we did. So I still find it amazing that people will travel from all over not just the country, but the world, to get treated here, in our backyard. When I found out that some families will research and actually choose Joci's surgeon to treat their child's heart defect because he's so well-known in his field, I began to feel a little guilty that the only reason I had Googled him was after her surgery was scheduled and just because I wanted to prepare myself before we shook hands.

Just killin' time!
What I'm trying to say is, coming from an extremely-limited hospital experience of two Naval hospital births (where I had to practically pursue legal action in the midst of labor just to avoid getting a needle stuck in my back) to the legend of Johns Hopkins was quite an eye-opener. I guess I'm still in shock as to how nice and accommodating all the nurses and staff were ... and I wasn't even the patient!

And we met A LOT of people during our stay. Sooo many teams. So many faces and I have no idea who they were or what their purpose was. There was the nurse that walked us back to the pre-op room and did the whole vital thing. Another nurse that came to discuss anesthesia paperwork. Some other person I don't remember. And then the surgeon came to check-in and shake our hand. Eventually, 7:30 rolled around and it was time to walk to the operating room.

They allowed Jon and I to be with Joci while she went under anesthesia, so we had to put on gowns, hats, and masks. And this is what we both agree was, by far, the most difficult part of the whole experience. And I'm still not exactly sure why. I never really feared for Joci's life while she was in surgery, but I just hated being away from her. And I hated that she was too young to understand. I hated that she trusted me to keep her safe and I was about to send her off to the worst experience of her life ... and then walk away.

So we began the walk from pre-op to the OR, the walk where my feet felt like lead, my throat closed over, and tears were swimming in my eyes. There were already people waiting in the OR. Someone directed us to lay her on a bed, one of us on each side to hold an arm and a leg, because typically kids will flail around, scream, eyes roll back in their heads ... Not Joci. She just laid there looking back and forth between Jon and I. Just looking at us--eyes wide with unanswered questions.

They said it wouldn't take long, but it's not true. It's an eternity when you're standing there waiting for your baby girl to cross the threshold of fear and pain. I tried not to cry, but I couldn't help it. And then I started to worry that the nurses would think I was one of those weak, messy mothers that would need carried out of the room. And I hated that my daughter's last memory of me was wearing a funny hat and mask with huge tears in my eyes.

Her eyelids finally closed for good and they allowed us to give her one final kiss before escorting us back to the waiting room. I don't remember walking back. I just remember one older nurse walking next to me, rubbing my arm, telling me it was going to be okay.

So Jon and I went and found seats and just sat there, staring at nothing. We had brought books and magazine, movies on the iPad, snacks and drinks--all stuff to keep us busy. Instead we just sat there, completely consumed by our little girl down the hall.

If you're going to stare, might as well have something to stare at.
The waiting room was large and full. There's a TV screen that posts your child's number and a timeline to give you an idea of where they're at in the surgery. They also take your cell phone number and write down a description of what you're wearing so they can give you periodic updates. There were a lot of surgeries going on, most of them shorter than Joci's, so we watched a number of families come and leave during our stint there.

Taking into consideration all the sick children we came across during our stay, I felt a little odd being there. Guilty isn't quite the right word. But when you're dealing with a surgeon who's resume includes baby heart transplants and artificial hearts, a little hole doesn't seem like such a big deal. For him, Joci's surgery was just like another day in the office.

And then there was a couple sitting next to us in the waiting room. I have no idea who they were or why they were there. I just know that you could feel their relief flood the room when their son's surgeon came, sat down next to them and actually said "you can go ahead and start that college fund now." There was another man I met while staying in the PICU who had brought his son up from Norfolk, Virginia for his seventh surgery. SEVEN!! When you start putting things into perspective, a routine open-heart surgery isn't so bad.

They were supposed to call us when they made the first incision, which I thought would be sometime around 9:00am. That time came and went and we hadn't heard anything. Sometime after 9:30 a lady from the front desk came to tell us that Joci was on bypass (a nice way of saying your daughter is being kept alive by a machine right now.) Which was supposed to be our second phone call. They had told us to expect her to be on bypass for 30-45 minutes. So when over an hour went by without hearing anything we both started to get really nervous.

Finally, around 11:30, we saw the surgeon step in to the room. He sought us out and first thing he did was tell us Joci was fine. The procedure was over and she did great! The hole in her heart was bigger than they had anticipated--slightly larger than the size of a nickel (her heart is about the size of her fist!) Which meant it occupied almost her entire septum wall. The good news is they were able to use her own heart tissue to repair the hole. The patch was successful and the surgeon said the dilated half of her heart (that was working extra hard to pump blood) had reduced to half its size before he had even finished with the surgery!

Picture a heart the size of this little fist.
Then he had even more good news. While they sometimes have to use electric shock to get the heart restarted after coming off bypass, Joci's heart had restarted on its own. We had known that typically they attach wires to the surface of the heart at the end of surgery. This is a temporary pacemaker that helps regulate her heartbeat while the heart is recovering from the stress of the surgery. But the surgeon told us that Joci wouldn't need the pacemaker after all, since her heart was already doing so well on its own. And finally, he said her breathing tube would be out before she left the OR. So far, it seemed like everything had been best case scenario!

My only beef with the whole process was the thymus gland. Or lack of thymus gland, because they took Joci's out during surgery. Apparently, they do this to all heart surgery patients. I have no idea why they never told us ahead of time. In fact, we would have never known if a nurse practitioner hadn't approached us in the middle of the surgery and asked us to sign a form allowing the hospital to donate Joci's thymus gland to a company that uses the stem cells to create some sort of medicine for sick children (?? major waiting room brain set in at this point!).

They say the thymus gland is for secondary immunity support and isn't even functional beyond the age of 14. But still, it would have been nice to know. And then I made the mistake of hopping on Google in the middle of the surgery and came across all these horrible articles and Facebook groups dedicated to children with auto-immune diseases as a result of not having a thymus gland. I eventually had to shut down my phone and give myself a little pep talk. Because at the end of the day, my God is bigger than a thymus gland. And right now I just want to focus on my baby girl's new, healthy heart!

Reunited in the PICU, still very, very sleepy.
It was almost 1:00 by the time they came to take us back to the PICU. I'm not sure how long she had been back there before us, but the nurse assigned to her said she was practically bored because Joci was doing so well. She pointed to the pole that holds all the medicine pumps and said, "See? She's not even on half of these. We just have them ready in case." She never needed any medicine for her actual heart. Nor did she need anything for her blood pressure, which had completely regulated on its own. Furthermore, she only had one chest tube, not two, like we had been told. According Nurse Patty, she'd never seen a cardio surgery patient with only one chest tube. In fact, she'd never seen one doing this well before. (It has crossed my mind that she says this kind of stuff to all the parents, kinda like when the nurses would tell Joci she was the cutest kid on the floor, but I'm still gonna go for it!)

So the nurse kept saying how great she was doing, but it's a little different when you're the parent. All I saw was my tiny, pale baby sleeping on this huge, HUGE bed. And wires and tubes EVERYWHERE. Let me see if I can get this all straight. She was on oxygen (just for the first hour or so.) There was an IV stitched into her neck to deliver pain meds right to her heart (what we didn't know at the time was that although it entered into the right side of her neck, it extended several inches into her body.) I can't remember the original pain medication she was on but after a few hours they switched to morphine. There was a regular IV line in her right hand, along with a sensor on her finger to read her oxygen levels.

She looked so tiny in a big bed in a big room!
There was an arterial line in her left hand that they used to easily take blood for all the lab work she would need. There was, obviously, the huge incision on her chest, covered with a gauze patch. And below that was the chest tube (which extended up into and curled around in her chest cavity to drain blood and fluid--yeah, it made me queasy.) She had a foley catheter. There was a temperature gauge up her rectum to read her internal temperature and one on the bottom of her foot so they could read the temperature of her extremities (thus verifying her heart was indeed pumping strong enough to circulate her body.) And finally, there were EKG wires on the backs of her shoulders and sides to monitor her heart rhythm. Needless to say, I was afraid to touch her.

But the nurse assured us it would be alright, and while Joci only opened her eyes a few times those first few hours, she made certain to grip our fingers in her tiny fist. We pulled two chairs up on either side of her bed and just sat there, each holding a hand, waiting for her to wake up.

To be continued...

Sunday, March 22, 2015

In over my head

If you haven't heard yet, one of my favorite worship bands, Bethel, has a new album out, We Will Not Be Shaken and one of the songs on it is called "In Over My Head." It's become my personal anthem for life, in general. But it definitely got some extra play time this week--the week the other 5 members of my family got the stomach flu.

No time for "big camera" pictures this week, so be prepared for some low-quality shots this post!

Thankfully, it didn't happen all at once. Joci throwing-up on the way to her doctor's appointment on Thursday was the start of it. Although, at the time, I thought it was just a random bout of car sickness. That night, she woke up crying at 1am. I went to hold her and put her back to sleep and heard Jude yelling for mommy. So I carry Joci over to the boys' room, open the door, Jude starts yelling that he barfed in his bed, and at that exact moment, Joci pukes all over me and the hall floor. It was about this time that I decided reinforcements were necessary and called for Jon.

Cookie in a mug!
Jude was a trooper, even if he's still a bit skittish from the last time we all had the stomach flu. He went back to bed with a barf bucket and was able to handle things himself that night. Joci's a little too young to understand these kind of things--or alert you when they're about to happen. So she came into bed with us where I spent the majority of the night hopping out of bed with her everytime she made a noise that even slightly indicated the possibility of puke. 

This what Friday looked like.

It was just 24 hours of stomach "issues", followed by 2-3 days of intestinal "issues", so things were looking pretty good for church on Sunday. Jude insisted on carrying a "barf bag" into church with him. And then he refused to go to Sunday School. Instead, he ended up falling asleep on the chairs in the "adult" service while still clutching his barf bag. 

So many children randomly falling asleep during the day.
I thought we were all in the clear at this point, but then Julia randomly fell asleep in the living room after church (which never happens). And I realized that perhaps temporary narcolepsy was yet another symptom of this particular virus. Sure enough, within a few hours, she was down for the count as well. We decided to let her sleep on the floor of our room so I could easily "hop" up and assist her whenever the need arose. 

I think the dog has narcolepsy too. He hates to nap for fear he'll miss out on something.
Despite the sickness, nobody slept in the next day. Jack started complaining that his belly felt funny at breakfast. I was debating on keeping him home just in case, but then he started picking on his brother and I figured if he was well enough to do that he was well enough to go to school. So he did.

And then the nurse called at about 1:00 to ask me if I could pick up my son who had gotten sick in school. It's time like these, when I'm dragging three kids into the elementary school office (two recovering and one still very sick) to pick up their barfing brother, that I realize how good we had it growing up just a few doors down from my grandparents for quick and easy babysitting. As if it's not awkward enough when everyone at the school is counting up your THREE kids that aren't yet old enough to be there, now they all know that I'm THAT MOM that sends a sick kid to school. I got out of there as fast as I could!

It was a gorgeous day, and Jäger desperately needed some exercise. So when Daddy came home from work, I thought we should all get some fresh air. We let Jack rest in the car with his Kindle and barf bucket while the rest of us aired out our germs. 

4 kids, a dog, and a barf bucket.
Jack was still struggling that night and had us up at 11pm changing bed sheets. I was starting to wonder if maybe this was just a "kid thing" and that Jon and I going to make it through unscathed. A few hours later I got my answer. Around 4:30am, with a still-recovering Joci cuddled up in bed next to me, Jon fell to the bug. I hardly slept the rest of the morning wondering if it was coming for me next.

We struggled through Tuesday (and loads and loads of laundry), and I was still standing by the end of the night. The next day was Jack's field trip that I was planning to chaperone. The following day was the first play date for our church's play group that my friend and I are heading up. And Friday was Joci's pre-op appointment at the hospital. So there was really no time for sickness. And everytime I started to feel queasy or nauseas, I reminded myself of that. 

Me, Jäger, and Joci escaping the house and going to the woods--the one place I can take this dog on a walk!
Thank the Lord it never amounted to anything. Jack and I had THE BEST time on his field trip to the children's museum. I was the only chaperone out of four kindergarten classes to have 3 kids in my group (everyone else was either 1 or 2 on 1.) It doesn't sound like much, but when you're trying to manage three kids through three floors of fun activities (and one three-story play place in the middle that gets on and off at all floors), it got to be a lot. I definitely lost all of them more than once. But they were really great kids and I so appreciated a chance to get to know some of Jack's classmates (and other parents) a little better. 

At Port Discovery Children's Museum

His favorite thing--the golf ball lift.

His other favorite things--Legos. Because we don't have that at home or anything! ;)
Plus, it also got me out of the house for a little bit. Poor Jon, only on Day 2 of "the bug" was left to care for three kids and a dog at home.

This dog knows right where to sit during meal time!
Since I hadn't been home all day we decided to just eat at Chick-Fil-A and do a Target run that evening. Unfortunately, Phase 2 of "the bug" hit Jack and Julia while we were out, and we spent more time running kids to and from the bathroom than eating or shopping. Meanwhile, I'm still wondering how much longer I can hold out.

Playing at church.

Some random little girl grabbed my phone and started taking pictures...
But we made it through the playdate just fine. And as stressful and busy as this week has been, I gotta say that all the barf, poop, and laundry helped keep my mind off that major event looming in our future--Joci's surgery.

In the middle of all this, we decided to move her to a "big girl bed." She rocked it!
She had her pre-op appointment on Friday--the day of the big first-day-of-spring "snow storm." It was no big deal here in Maryland. Our wonderful friend Rachel watched the middle two kids so that Jon and I could take our youngest to "the city" to discuss her procedure, get some lab work and x-rays, and meet her surgeon.

It was a long day and A LOT of information. Thankfully, Jon was taking notes because I was having a hard time keeping up. I was also busy trying to keep a 19-month old entertained--a 19-month-old that only wanted to read the first 2 pages of every book I brought in her backpack... The nurse practitioner we've been working with is WONDERFUL. She walked us through everything in detail, and then answered all of our questions like she's heard them all before. Because she has. In fact, we found out that this is THE pediatric heart surgeon at Johns Hopkins. He does one surgery a day, around 4 or 5 a week. ASD procedures (what Joci will have) are the second most common and therefore the second least complex (the most common/least complex surgery is for VSDs, if you're interested.) So this is all routine stuff for them.

Solved the dilemma of "What does she wear in the hospital?" Answer: two-piece button up jammies for easy access to tubes, wires, and diapers. Even found them super cheap on Amazon. And now she doesn't ever want to take them off. Or snow boots.
So there were my questions--like "How long until I can hold her?" and "What should she wear in the hospital?" and then there were Jon's questions--like "How EXACTLY do you cut open the sternum?" and "What kind of metal is used to bring it back together?" or "How will you restart her heart when it's done?" So see, we were a good team.

Next was lab work and x-rays and, you guys, this girl was a CHAMP that afternoon. In the middle of should-be nap time, to boot! They had to take 6 vials of blood! From a baby who has never had her blood taken before (I admit, I'm guilty of skipping out on the anemia and lead testing every.single.time they come up.) She sat on my lap and they stuck her with the needle and she didn't even flinch, much less make a noise. Just sat there while they filled 6 tubes.

I'm so not like that. During each of my pregnancies I would DREAD the lab work appointment. And ya'll know my stories of almost passing out, in labor, during multiple attempts to get an IV line in. I'm  just not good at that kind of thing. And apparently I'm not good at watching other people go through that kind of thing either because while Joci was cool as a cucumber I could feel myself breaking out into a sweat on her behalf. 

Anyway, she had about 4 nurses singing her praises and patting her on the back at the end. And she cruised out of the lab in her stroller with a proud grip on a can of apple juice, a pack of 6 Oreos, and a handful of princess stickers. No big deal.

They even let her keep a lab tube as a souvenir. 
Next stop was x-rays. Since she's so little they had to place her on a stabilizing board and strap her hands down above her head. And then they asked Jon and I to go into another room and watch through a window. It was so sad to see her little body under this huge machine--and watching her chest heaving while taking quick breaths. But yet again, she didn't make a peep. Here I am trying to explain to the nurse that she's "kinda clingy" and "sometimes throws a fit when she wants me to hold her" and Girlfriend doesn't even bat an eye when her mama leaves her alone in a room strapped to a bed. If nothing else, this pre-op appointment on Friday has me feeling much more confident in Jocelyn's hospital stay experience than I was a few days ago.

After a few snapshots of her chest we finished off our visit with a chat with the surgeon. He was able to explain things a little bit more (when I didn't even realize there was more to explain) about the placement of her incisions, how he'll make the decision (once he's "in there") on whether or not to use a piece of her heart for the patch or a special mesh material, why she'll need a blood transfusion, and just exactly why it's important to fix a hole in her heart (surprisingly, it's not so much because of her heart, but rather the impact such a condition has on her lungs). Like I said, my brain is so full right now. And I'm not exactly positive I'm getting all this correct.

So we're laying low this weekend. Joci just CANNOT get sick (otherwise it will delay the surgery by 2 weeks which would throw EVERYTHING off!!) Thankfully, she was the first to get, and get over, the stomach flu. And since she hadn't had a fever they said it was okay. She's had a bit of a runny nose this past week so we're amping up the vitamin C and praying it doesn't become anything else.

Personally, Monday morning can't come soon enough. For the past week I've felt like there's a band stretching between my shoulders--this constant weight and tension of what's to come. Even Jon said he's been distracted lately. There's rarely a minute that goes by that you're not thinking about IT. Which is why you start mulling over questions like "Just what kind of wire holds a sternum together?" and "What am I supposed to do in a waiting room for 7 hours while my daughter is being kept alive by a machine?" 

Which is why maybe the stomach flu wasn't so terrible after all. It gave me something to do other than worry about next week. Yes, I'm feeling in over my head. But I'm completely trusting God. He created my little girl. He loves her more than I ever could. And He's in control--control of my baby, the surgeon, even the bypass machine. I'm just following wherever He leads--tomorrow, Monday, and every day after.
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