Wednesday

I need to thank everyone for their good thoughts.
As it turned out, we experienced one of our greatest fears, and something I never expected to go through.
Our daughter had some pretty serious complications after general anesthesia, and it was touch and go for a while in the recovery room. These were the longest hours of our lives, and I'm pretty sure I've never been so scared. Fortunately, the team at the hospital did a good job of stabilizing her and pulling her through.
The surgery itself went perfectly - the plastic surgeon was thrilled with the result, and QQ is doing much better after a long day and night in the hospital.

Usually, I only share this kind of thing on our adoption blog, since the minutia of the adoption journey, attachment issues and the like are generally only of interest to a small subset of people who have adopted or are in the process. But this is an issue that's close to my heart. People have asked me in the past why I decided to share these things - the surgeries, the difficult parts. And I do in fact have a very specific reason:

To the uninitiated, it often seems like an insurmountable thing, to adopt a child with medical needs. Naturally, it's frightening to contemplate the ramifications. Researching medical conditions, potential complications and possible syndromes is intimidating. It was for us when we first decided to go the Medical Needs route, though we never thought of changing our mind. I know that to some the risks are too overwhelming, the surgeries, the therapies, the insurance red tape. But to my mind, the bulk of the intimidation factor lies in the fact that we just don't hear much about children born with medical conditions here in the US. It isn't that children aren't born with them, it's that we have been a wealthy nation with a good medical system, and conditions like cleft palate, heart defects etc are correct, at least partially, as soon as possible after birth. There is still a cult of silence about these things, and we assume that they are much more rare than in truth they are.

This is not to diminish the difficulty of the decision to adopt a child with serious medical needs. No one wants to voluntarily undergo moments of terror like we did during this surgery, the fear of losing a child. But the fact is, these are not risks specific to children with congenital conditions. Children break bones, they get pneumonia, they choke on things, the risks are there for every one of us. This is just life.

I choose to describe the process of life with our daughter in detail, as we experience it, in the hopes of demystifying it. What I write on our adoption blog, and occasionally touch on here is our life - the actual balance and heft of it. There is nothing I'm hiding, no dark secrets, no hidden dismay. I make an effort neither to gloss over the rough spots nor to selectively edit. The reason I describe both the good and the bad is because I want people to see that we live a very normal life. Our life doesn't center around Q's medical condition, nor does her condition define her. If anything it makes her a bit tougher, a bit more resilient in spirit. Children who go through things like this learn to take it in stride, and to focus on the best parts of life. They bounce back.

There are tasks that come with a medical condition, of course there are - extra checkups, a larger team of doctors, that sort of thing - but those quickly become routine. Like anything else in life, you adjust, you make room and time, you make it work. It's really a very ordinary process.

The biggest thing about our life with Q is the joy she brings, and that is the part we see every day. That is the thing that stands out. The rest of it just comes around every now and then, a chore, like doing your taxes or getting annual checkups.
Q and daddy prepping for her second major cleft surgery.
The surgery lasted about an hour and a half, including new ear tubes, inspection of the healed palate, and the full closure of the lip. When the plastic surgeon came out after the surgery was complete, she was radiant and delighted. The surgery, she told us, had gone perfectly. She was thrilled with the results. She also told us that the palate appeared to have healed beautifully and that no further work was necessary at this time either on the hard or soft palate. This was what we had hoped to hear - the best case scenario. I know of many children who have had to go through multiple revisions because the first palate surgery didn't heal quite right, so we felt extremely fortunate in this, especially given how wide Q's cleft was initially.

After that, however, the anesthesiologist came out to talk with us, and I could tell as soon as she started talking that something had gone wrong.

My husband and I caught a pretty nasty upper-respiratory flu of some sort while we were in San Francisco, and it was a tough one to kick. It was so hard on us that I was pretty certain they'd have to reschedule Q's surgery. It seemed hard to imagine that she had spent days in a small hotel room with two people as sick as we were, and not catch anything.
Time passed, however, and she appeared healthy. I was somewhat apprehensive because I knew that a respiratory tract infection poses danger during general anesthesia. We were careful to tell the surgeon at our pre-op appointment about our illness. But Q had no signs of cough and her lungs sounded clear, she had no fever and no ear infections, and all seemed well. Both the ENT and the plastic surgeon gave us the go-ahead to proceed with the scheduled surgery.

It was only after they removed the breathing tube post-surgery that they discovered some congestion had in fact been present deep in the lungs. It was very slight - her illness was mild, but even that was enough, in a child this small, to cause her airways to close up following general anesthesia.

The anesthesiologist reassured us that they'd stabilized her, and that she was in the recovery room doing fine.
The first minutes in the recovery room were similar to what they had been after her first surgery, and at first she seemed to be progressing as usual - accepting juice from a syringe and looking around at us.
As it turned out, however, her post-surgery issues were not so easily resolved. The narcotics in her system exacerbated her breathing issues. She was taking juice from me just moments after surgery, but after several swallows she suddenly gave a kind of hoarse ghasping cough and her eyes glazed over. Then I could see her chest and belly heaving at odd intervals, and within moments her lips started turning blue.

We were immediately shooed out of the room while the medical team converged on her.
There is no possible way to describe the bottomless fear of a moment like this, so I won't try. I can only say that it was the worst moment of my life.
My mother-in-law took this is the shot she of the lonely hallway down which we stared, frozen with horror, for what felt like hours as they worked on stabilizing her again. I understand now that it only took them 7 or 8 minutes each time to stabilize her, but to us it felt like a lifetime.
Back in the recovery room, the medical team had given her drugs that would reverse the narcotics in her system so that her natural functions could take over again. But the narcotics can't be reversed too quickly in a small child, and while we were back in the room, she stopped breathing a third time. As we waited in the outer foyer for the anesthesiologist to come out again, I have to admit I really thought we were losing her. I had a few minutes in which I had not flashbacks but flash-forwards to a future without her that I could not fathom.
But they fetched us back again for a third time. This time no seizing of the airways, thankfully...but by this round I was far too gun-shy to hold her again. I can't tell you the horror of feeling your only child seize up and go bloodless in your arms. I had to step away and let M do it this time. Fortunately, her airways did not seize again.
Neither, however, did she wake up. After a length of time, I could see M getting worried that maybe she had gone into some sort of coma. The doctor came in and pulled up her lids to look at her pupils, which did not reassure me. But then I saw the nurse do a quick reflex test on the bottom of Q's foot - just a nail dragged along the skin. Instantly, her tiny foot gave a good, healthy, annoyed kick. That was when I knew she was OK.

It did take her a while to regain consciousness, but the doctor explained that the narcotics were still in her system, and that since the surgery itself was not a terribly painful one, the narcotics, without any serious pain to fight, just knocked her out. Her little body had some recovering to do as well, after all that trauma.

It took some time for her breathing to return to normal and it was terribly difficult to watch her little torso heaving so unnaturally - little rolls starting at the bottom of the belly instead of in the diaphragm where they should begin. But you could see when it ended, and it ended quite abruptly.
Her body relaxed, her eyes popped open, and she looked around at us alertly. You could see her craning to see people walking down the hall, looking around the room for things she might want to touch. She even gave a chuckle and a little dance-jiggle when she saw the Pooh Bear decals on the glass wall. You can see the difference in her face in this photo - alert, less congested, more in the normal color range.
Once she recovered from the narcotics, you could see how much easier the actual surgery was on her system than the first one. With no cartilage involved, she was in very little pain, alert, chipper and active.
It was still a long and mostly sleepless night - the trauma had left her whole system oversensitive and she was having allergic reactions to the adhesive used to stick on her monitors, and particularly to the tape which had covered her eyes during surgery. This left her patchy, red, and extremely itchy. She also hates to have her hands and feet confined, so the IV in her hand and the oxygen monitor on her foot were a source of unending exacerbation for her.

Still, the difference was marked from October's rough recovery. She was even exceptionally affectionate this time, giving out kisses, flirting with her eyes, hugging, and trying to giggle through her tape and stitches. Late in the night, as the three of us piled into the narrow hospital bed, she got particularly affectionate and started getting M and I to give eachother kisses by turning our faces forcibly toward one another with her little hands. This made her smile and chuckle every time. As she was sinking into a blessed (if brief) latenight nap, she grabbed my hand and M's and linked them over her back before falling asleep. The way her mind works never ceases to amaze me.
This morning, as we packed our belongings to go home. A whole new QQ. She was beyond delighted to be freed from her tethers of monitor cords and IV tubes, and toddled manically around the room collecting all the toys she'd been loaned.
Trying to make off with a toy from the hospital playroom.
Cheerios in one hand, toy in the other, ready to bolt for home.
Here she even backed up against the changing table to "pose" for me. This is a new "skill" for her, and a testament to my obsessiveness with the camera. The other really exciting part was that we could already hear her making new sounds with her mouth. Her "mama" changed and became much more crisp and round-sounding overnight, and she was making little "Puh" puffs with her new lips, which is thrilling! I am excited to hear how her language progresses over the next weeks as she learns her way around her new muscles.

QQ's lip does in fact look seamless - as much of it as one can see around the bandages and surgical glue. I can't wait to see what it looks like once healed and uncovered. What you see in her nose are plastic tubes that hold the nostrils in a widened position. These will stay in for a week (we hope) or as long as we can get her to keep them in. The idea is that a bit of scar tissue will form around the tube and bolster the cartilage where her nose is naturally flatter on the cleft side.

It did our hearts good to see how happy she was to find herself back at home. She actually crowed out loud when we pulled up to the curb, and wanted to parade up and down the sidewalk in the unseasonably warm sun for a while before going inside for her long-delayed lunch.
We gave her an episode of her beloved Yo GabbaGabba, and then put her down for her nap, where she was radiant with joy to be back among her own things. So happy was she, in fact, that she didn't even complain when we put on the hated arm braces that she railed so bitterly against after the last surgery.

Again, thanks for your well-wishes, and I look forward to posting more on her progress as she recovers.

12 comments:

Tina said...

Oh, you just took my breath away. I'm so glad your little girl is ok. I was so happy to see the pictures of her up and walking. Thank you so much for sharing your story. What a scary thing to go through...I'm sending you the warmest wishes. Cant wait to see Qs beautiful smile! Much, much love!

Yoli said...

I am still amazed at what you went through. Sally, seizes when she has a high fever and that always sends me through the roof. I cannot imagine having something like this happen to her. I hope you, Mike and QQ are resting. I am here visiting your blog, as usual in my insomniac walks.

Geisslein said...

Oh my God, Maia your post made me cry a lot! I have no child and never lost one but as I read your post I felt the fear and pain you must have felt!!! And I´m SO GLAD and HAPPY for you all, that everything is well assumed and has turned for the better!!! I wish you ALL THE BEST and send you the waremst wishes! Give Q a big kiss - what a bravely and beautiful little girl she is!!!

FDChief said...

So glad that she's alive. So happy for you, for her.

You hug that girl! Life should never remind you of how precious she is this way. But it does. It does. Every day after this is a gift, a gift, and you are rich with the gifting.

You are all in my thoughts.

J,

MotherMotherOcean said...

I am glad you have her home and she is fine. She looks serene in these pictures.

rosemary said...

I cried reading this. Thank you so much for sharing! BTW - we are in line for medical needs if one arises when we come up to bat and I would love to read your adoption blog if you felt comfortable making that available to me.

3continentfamily said...

Speechless...

Your little girl is one tough cookie. Blessings.

sølvi said...

I hope you all are doing well. It tore my heart out to read what you had to go through at the hospital. Love Sølvi

Red Sand said...

No-one should have to go through that. So very glad it is behind you.

flyinamber said...

I'm so glad that everything is ok..I'm thinking of you and sweet little Q!

Mouse said...

Oh my goodness you had my heart racing and my mouth dry as I read this. It took me back to the night, over 17 years ago, when my son almost died before he could be dragged from my body...
I am SO sorry that you all had to experience such terror, and so very relieved to see your lovely little daughter standing holding a box of cheerios!
Blessings to you all

Merisi said...

I am so sorry you all had to go through so much, however I feel also very happy for you that everything came out well at the end.
As a mother of four children, I can feel the terror you must have felt.