Traveling Home: Part Three

[You can find Part One HERE, and Part Two HERE.]

Our plane landed, and we exited, finding Bogomila's chair waiting for us in the jet way as was intended, but not Tsvetomira's chair. We were assigned a volunteer to help us navigate the immigration and customs lines, and after waiting before the lines for a few minutes for Mira's chair to catch up with us, we were taken right through to the front of the line, got our bags, and were down at the doors to wait for Matt to drive up in Big Blue.

Bogomila was so excited. "Where is my Daddy?" she kept asking (in Bulgarian).

And then there he was, and Gloria with him - oh what a delight to see my baby! I've NEVER been away for so long from one of mine when they were still so young. We packed everything and everyone up, and drove the five miles or so home.

Mira got to go inside for a few minutes. Look how happy her Daddy is to see her!

After a short stop through home with LOTS of hugs, and enough time for Gloria to nurse (oh, happy baby! Happy mommy!) AND enough time for Bogomila to find the Christmas presents from family that were waiting for her and start opening - that girl didn't waste any time settling into the idea of her own things in her own room!! - we decided it was quickly time to get Mira to somewhere that she could get medical care.

The swelling that we had been noticing in her left hand had not diminished. By the end of the flight we were also seeing it in her right hand, and now in her face and legs as well. As careful as we had been with Mira's eating routine, as well as assuming that her nutrition in the orphanage was likely better than it was for some of the first children to come home a few years ago, we were still being watchful for signs of possible re-feeding syndrome. Her blood work from the week we'd been in Bulgaria had shown low phosphorus levels, which is one of the indicators Adam was watching for. Since the most dangerous part of re-feeding syndrome is a chain reaction of imbalances that causes a migration of fluid (sorry, Adam, I'm probably not getting this all correct!), one of our biggest concerns, especially seeing the progressing of the swelling, was the potential risk of congestive heart failure if her tiny heart simply couldn't keep up with the changes.

On the 10 mile drive to the hospital (proximity to international airport and state of the art medical care is a definite perk of living in a first-ring suburb of the capital city of your state!) Mira was not looking great, but also no signs of anything desperate. Dad dropped us off, me with my carry-on bag and personal item from the plane (carefully packed the night before to have not only what I needed in flight, but also for a longer hospital stay), and Adam quickly grabbed my phone from where Matt had left it for me in the dash of the van. We walked in, and Mira was taken directly to a preliminary triage area where we waited for just a few minutes.

I could tell my blood sugar was dropping, and I was starting to get dizzy and light headed. I asked Adam to help me watch for a vending machine where I could get myself something. This does not happen to me often - the last time I remember was actually in the airport in Chicago when we were bringing Krassimir home! So apparently this is my adoption pick up trip response. Just too much adrenaline for too long to sustain. ☺ Even easier, he had something in his bag he was able to share, and I quickly felt better. (If I'd been thinking, I would have remembered I had a variety of airplane snacks in my carry on! But I was not thinking of that at the moment.)

The triage nurse decided she didn't need to do a full work up, and just found us a room - it was obvious this girl was going to be needing some time here. I was beginning to relax, feeling that they had a good understanding of the fact that they had a complex case on their hands - there was going to be no 2 hour wait in the lobby on this ER visit!

What a joy it was to lean over my little Mira and tell her that we were HOME and that there were going to be so many people who were going to work to help her feel better, and that every single one was going to be kind and gentle with her.

As I lead up to what became a very intense period of time, in which I did NOT have a good experience with the emergency room, I want to be very very clear that although the system, the protocol, did not serve us well, every single individual person who interfaced with Tsvetomira showed her the utmost gentleness, care, and respect as a human being. Coming from where we had been just earlier that day where there is no place for someone as disabled as Mira, where she was systemically thrown away at birth when it became evident that she was going to have challenges, I can not overstate the obvious difference here. I've said this before - there are any variety of criticisms I and others can rightfully make about the United States. But if there is one thing that makes me proud to be an American, it is this: we still have the ability to look at someone like Mira and decide automatically that she is worth protecting and investing in.

They began with blood work and a run down of vital signs. Adam stepped systematically through all of the medical information he had to offer - from her medical history which he had become an expert in, our labs and experiences during the week in Sofia, and the events on the airplane. Because he works in an emergency room himself, he speaks the language, and knows just what information they want and need, and how to give it in the most direct and effective way. I am free to just be with my Mira and love on my Mira.

Seeing her lying there, both Adam and I are aware of how very swollen she looks, and yet also realize that because she is so severely malnourished, she does not *look* particularly swollen to someone who has not seen her before. Her heart rate is running a little higher than the 80-120 range that we'd been seeing over the past week, and she just doesn't look great, but there are no obvious signs of immediate distress. We keep waiting, curious what the results of the labs will show, and waiting for something to happen for our little girl who, for the last week has looked better and better with each passing day, but does not look better anymore. I miss seeing the little girl we started the day with almost 24 hours ago.

We had skipped her last feeding on the plane, which was supposed to happen soon before landing. We did not want to disturb her so soon after the seizure, and in case something began again, we wanted her to be ready for interventions with an emptier stomach. Her next feeding time was approaching, and passing, but we were given the vague sense to continue to wait...in case.

At this point Adam decided it was the right time for him to leave. We both knew it had to happen at some point, and although Mira was not in great condition, we were also in a steady holding pattern. Now was as good a time as any to leave, and I, too, as much as I would have loved to have kept Adam with us, was completely peaceful about him making his exit. He gave Mira a big kiss (a privilege we guard jealously, but one that he absolutely earned), me a big hug, and walked out the door to return to the airport.

That was a little bit before 4pm.

When Adam and I had first begun talking with each other on the phone prior to our trip, and he was beginning to arrange his plans to be able to come along, we discussed candidly the possibility that it might not end up working for him to come, and even if it did, it was very possible that Mira could still die in transit. In his mind, with Matt and I in full agreement, neither one of those possibilities was a reason to consider the mission anything less than a success. When your primary goal in life is to spread the evidence of God's glory, it shifts the criteria of what makes any endeavor a failure or a success. His involvement itself would broaden the purpose of Tsvetomira's life, as its touching his provides him with any number of opportunities for HER story to be used to declare GOD'S story.

Reading through the gospels, one can not help but marvel at the incredible miracles Jesus performed: healing a wide range of ailments, and even raising people from the dead. However, not a single one of those miracles was meant to be permanent. Not a single one of the people that Jesus brought back to life received that as a permanent state - they all eventually died again at some point, and stayed that way (as far as their physical bodies are concerned, at least!) There are a few things that I gather from those accounts. One, life is precious, and health and wholeness are things that when we work toward, we are in alignment with the heart of God. But two, there is a difference between treasuring life, and avoiding death at all costs.

Death is not the enemy. Apathy, fear, disobedience, yes, but death is no longer the enemy we fear.

"Death is swallowed up in victory."

"O death, where is your victory?

O death, where is your sting?"

The sting of death is sin, and the power of sin is the law. But thanks be to God, who gives us the victory through our Lord Jesus Christ. Therefore, my beloved brothers, be steadfast, immovable, always abounding in the work of the Lord, knowing that in the Lord your labor is not in vain. - 1 Corinthians 15:54-58

Not in vain. In the Lord, our labor is not in vain. Regardless of the outcomes that we can see within the frame of reference of this physical world, the work that we do in Him and for Him, is always going to be work that ends with the mission accomplished.

Mira and I continued to wait. Wait. Waiting for...something to happen, someone to do something to move us out of this limbo and into the action that we've been waiting for so many months to come for this girl.

Waiting.

And then, something happened. I watched it wash up her face, pushing her chin even higher than her already abnormal posture, and her face flushed. I don't know what made me look up at the monitor, but when I did I saw that her little heart was racing - in the 180s. I pushed the nurse's button, not knowing what was happening with my little girl. I may not be an expert in her, but I'd never seen her do this before. I'm not an expert in seizures, but this was not like any other seizure I'd seen. It was something different, and it did not look healthy.

It took quite a while before the nurse came in. She was not able to give me much information, but as we watched Mira, she slowly settled down into the 160s, and then the 130s, and some of the flush went out of her cheeks, and her posture settled a bit. She was looking at me again.

The nurse came back, and they did a quick EKG, said everything looked fine, and were off.

Around 5:20, another episode began. Again, I saw the change in Mira's face, and that was my trigger to look up at the heart monitor. Once again she was racing up into the 170s and 180s. This is not normal Mira. I pushed the nurse's button, and this time had a very timely response - it can't have been more than two minutes before the nurse walked in...except...it was Adam. He had discovered upon going through security at the airport that one of the Twenty-Seven Pockets still held my cell phone, so he had come back to the hospital, and apparently let himself in to deliver it directly to me and check on us one more time. At this point, he did not have time to stay for more than a few minutes lest he risk missing his flight back home.

Soon after he left, the resident who responded to my call finally arrived, saying that the intermittent tachycardia that was shown on the EKG (which never got anywhere near as high as it had been both before and after the EKG was taken), was in her opinion just related to Mira being nervous about the new environment.

Does she not have the most beautiful eyes?

Ten minutes later Mira had another episode, and I called for the nurse again. I was more direct this time. Something is wrong. I may not know her well, and I may not have known her for very long, but I know her better than you do, and I DO know a number of ways that she responds to stressful situations and stressful environments because we've had plenty of those this week, and this is NOT the way she responds. My little girl is not okay. Something is wrong.

She tells me, with no specifics, that all of the enzymes for re-feeding syndrome are coming back okay, and orders another EKG. A little bit after 6pm they get the EKG, and this time manage to catch some higher heart rates on it (in the 160s). As they take it off and leave the room, her heart continues up into the 170s, her little back arching, her breathing shallow and rapid, and her face incredibly flushed. She is working so hard.
 

At 6:16pm her face goes blank - it just falls - she's not engaging with me anymore! - and her heart rate plummets down into the 130s, and then soars back up into the 170s. Watching her tiny heart working at such an incredible rate, and her little chest rapidly rising and falling as she fights for each breath is frightening enough, but that moment when she checked out and was no longer with me...I knew something had changed again, and not for the better. Oh, I didn't want to lose her now, just as I was finally beginning to have her! At 6:17 it's up into the high 180s, and I've called for a nurse. The resident finally answers my call a good five minutes later, and I tell her this little girl survived for eleven years under the care of Bulgarian doctors who did not consider her life to be of any value. I finally have her here in a great hospital in the United States, and I'm sitting here thinking she could die on me right here! The resident looked at me, said, "I'm sorry," and walked out of the room. 

It was then that I realized I was on my own with this little girl. A few of you got emails from me as I now had my cell phone and a way to connect with those who were not with me, and following that a swelling of prayers for our girl were raised to the Great Physician who cares so deeply for the orphan and the oppressed.

At 6:30 she's still in the 170s. Her stretches of lower heart rates are getting fewer and farther between, and the tachycardia appears to be increasingly taking over her body. Even her "low" heart rates are still significantly higher than a normal heart rate. She is no longer connecting with me at all or responding to my voice or my touch in any way. This is so very different from the closeness we've been building for the last week. She's just not with me anymore.

At 6:40 she's slowing back down a bit (if you can consider the 130s slowing), and I'm finally given the okay to give her her seizure medication and her next feeding. She hasn't eaten anything since before 11am. She would go for long stretches over night at the orphanage, but all week we'd been keeping her steady with small regular feedings around the clock, so this was a long time for her.

She stayed steady until 6:48 when it started again. It was still running full force when Adam called to check in on me in his last minutes before having to board his plane. His passion for her precious little life came through in the emotions evident in his voice as he recounted to me what happened while he was going through security for the second time and the security guard happened to find the bottle of formula Adam had mixed up for Mira hours ago, and which had been forgotten in the other events of the afternoon. As we hung up, someone came into the room with admission papers for Gillette for me to sign. The resident reiterated that we were not dealing with re-feeding syndrome as far as the blood work was showing, but still didn't give me any idea what was happening, or for how much longer she thought this little girl could sustain heart rates in the 180s before her heart gave out for other reasons.

After a very short reprieve, Mira's heart was back up into the 150s, then the 180s again, sustaining this for twenty minutes. Daddy called. He wanted to talk to his Mira-Girl. With tears running down my face, I held the phone to her ear and listened in as her Daddy told her that he loved her and that she needed to come home.

She heard her Daddy.

My concerns at this point had escalated because not only was her heart racing with no sign of stopping and by this point had been doing so for over 3 hours, but for the last hour and a half I had not been certain that she was with me anymore. But she heard her Daddy's voice, and there were a few short moments of clarity and focus on her face as she listened to him, and then it was gone, but for that brief moment I knew she was still fighting in there.

A little before 8pm a poor, clueless EMT walked in to find us there. She's still cranking away in the 180s, slows briefly to the 140s/150s, and goes right back up again. He responds attentively to my distress by going out to check something, and comes quickly back in with the message that we are to move up to Gillette.

He sets my carry-on at the bottom of her bed so I can stay right by her side while we transport, and as we go, the storm fades away, and does not return.

My notes that I began taking after Adam's first departure end at this point. As soon as she was wheeled into her room in Gillette I knew they were going to take the complexity of her case seriously. I've covered some of the other details of what happened since this point in other posts, so won't go into it here. [Start reading about half way through THIS POST for what happened when we reached Gillette.]

Tiny girl spent most of almost four hours weathering a disautonomic storm alone. According to the paperwork we received on disautonomia, most disautonomic episodes can be managed by measures to improve comfort of the symptoms, but some more severe cases ought to have medical intervention, including storms that are causing unsafe changes in vital signs, such as heart rate. For nearly four hours she phased in and out of that storm, until God answered our prayers and intervened - absolutely the best sort of medical intervention anyone could ask for.

We are so grateful to still have this precious girl with us! As I told her, Daddy says she has to go home, and one thing she's going to learn now that she's part of a family is that she has to do what her Daddy says!

Daddy and Gloria visiting with Mira on one of their visits to the hospital.

 With all of the variables still ahead of us as we move Mira from the hospital where she's been for the last week and a half, and to her home tomorrow morning, there is freedom in knowing that her care is still in the hands of her Maker, and that as long as we are working for him and through him, her life, and our chance to be intimately involved in her life, is not going to be in vain! We look forward with joy to what this little daughter of ours will continue to add to our family.

Traveling home: Part Two

[Please read HERE for Part One.]

The flight was going well. There was plenty of back and forth across the aisle with the iPad as I tried to connect with Bogomila. She spent much of the beginning of the flight with it sitting on her lap, set to the world clock app with Sofia staring up at her. Oh boy. She's homesick already, and I'm limited in what I can do to help her. Thankfully the regular routine of hot towel, snack, juice, lunch, etc keeps everyone from going stir-crazy, and eventually she and Leah find a good variety of cartoons (funny in any language if you get the right ones), and games on their seat back screens.

Mira is laying peacefully in Adam's lap, and is having such a great time awake that we decide I should take one quick trip to the bathroom and then we'd resettle her with her head on my lap so I can capitalize on her alertness to continue building our bond.

I think the photo Adam's taking is a better shot - it looks like he's got a better angle at Mira's face  - I'll have to see if he'll email me a copy! But this photo of a photo being taken is kind of humorous.

Here's Adam's shot. ;)

 After moving her, Mira is not very settled, she's moaning slightly, and just doesn't seem comfortable. We try moving cushions under her, and rotating her slightly, but it's just not doing it. We notice that her left hand looks swollen, so we try rolling her onto her other side, so she's facing away from me. Sweet baby thinks that's much more comfortable, closes her eyes, and sleeps peacefully. The flight moves slowly, yet steadily, and I am thinking over the various options ahead of us once we land.

As Adam, Dad and I, and Matt, have talked over the course of the week, there are three versions of the end of the story in our minds. One involves landing and everybody going home. Our contact person at Gillette has moved up our first out-patient appointment from two weeks after we get home to three days after we get home by overbooking with a different doctor. If we can make it at home until Tuesday with Mira, we could then take her to a normal appointment, and he could admit her as an inpatient at that time if he felt it was necessary.

None of us really thought that was going to be a good option. For starters, I was concerned that if I brought her home it would be easier for them to say I could just keep doing what I was doing at home for a while. Knowing how much more relaxed Dad and I were about caring for her after Adam arrived in Sofia I was definitely not looking forward to doing it alone for a few days, much less a few weeks before hitting a crisis to allow her to access the help she really needs.

A second option was to be prepared to have an ambulance waiting for us upon landing and take us directly to the ER at the hospital that's connected to Gillette. (Gillette does not have an ER of its own, but they are physically connected to the hospital that does.) Longing to be able to at least see my other little ones, and to be with Bogomila when she was carried through the doors of her first real home made this option palatable only if it was critical.

The third option, which we all agreed made the most sense from all perspectives, was to all go together to our house (after Adam checked his bag through to Philly), spend twenty minutes or so there (enough time to nurse Gloria!!) and then have Dad take me, Adam, and Mira to the ER. Dad could then return home, pick up Mom, and go back to Wisconsin. Adam would find his own way back to the airport once Mira and I were settled.

What a smart girl, I think. There's no better way to pass a long flight than by sleeping!

And then a little over an hour away from landing at home she wakes up.


But, no, she's not really awake, is she? No. She's seizing.

We'd spent the days since her Monday pick up watching her carefully trying to figure out her patterns - what are seizures, and what are abnormal neurological movements, but not really seizures? What are simply reflexes, or natural responses at an immature neurological level to some stimuli? Over the course of the week we came to the conclusion that most of her odd movements with her mouth and eyes were likely NOT full blown seizures, but something else, but twice, once on Tuesday (with me and my Dad) and once on Thursday (with me and Adam), she had what appeared to be twenty minute long clusters of focal seizures that eventually resolved on their own.

What we were seeing now on the plane was definitely seizures. However, this time around they were different in intensity, and even in quality. Her limbs were involved, and the grip the seizure had in her face (which is where the focal ones earlier in the week had been centered) was much stronger. Suddenly, we were glad Adam was along. We were NOT in the bulkhead row we had been hoping we would be given, which would have given us much better access and ability to move around. As it was, Adam kind of turned sideways in his seat, I think up on his knees, almost, with all of his tools ready at his fingers - we were monitoring her pulse, oxygen levels, timing the cluster itself...and prepping the Diastat. (Anyone who's read this blog longer than this story knows Diastat - it's the rescue med we have for Reuben that basically knocks him out when his seizures do not stop on their own. As he's grown bigger, we had two doses that were pre-set for a dose too low to be useful for him anymore; Adam had suggested that I bring them along for Mira in case there was any occasion to want them.)

As we were suddenly on full alert, all of our senses engaged in the task at hand, I looked up at Adam at one point and told him we no longer thought there was no reason to have him along on the flight, but that he was worth his weight in gold. On second thought, though, I think that undersells him. As a man with a tall, skinny build like Matt's - we'd better go with double his weight. I didn't tell him that at the moment, though.

As I watched my peacefully sleeping daughter suddenly begin to seize and the cluster of intense focal seizures begin to take over her tiny, fragile body, my heart broke, and I wanted to lift her in my arms, stand up in that airplane, and say, "Look everybody - this tiny person is now my eleven year old daughter - this kind of thing is happening today in our world. Right here in front of you is a living, breathing (at the moment, and we hope it stays that way) example of the suffering that is happening RIGHT NOW in our world, but in so many many cases it is hidden away, out of our sight, our of our minds, out of our hearts.

"Look at her! This is real. This kind of stuff isn't the stuff of movies, or of a long past history - there are real live children just like her living their lives alone in horrific conditions right now. When they suffer, they suffer alone and that's not okay, and there's got to be at least one of you on this plane that has got to go DO something about it!"

I didn't actually stand up and say that, but every fiber of my being was screaming it on the inside. Look at her! She's not the only one. Someone has to go do something about this!

There are enough people watching this blog this week that I can stop to repeat that here.

There's got to be at least one of you reading this right now who has got to go DO something about this.

I do not want to plead with you generically, but if any one of you knows that God is directing you down this road, you need to be obedient! Trust him! If he is calling you this way, you can know that he will do everything necessary for you to complete the work he sets before you! Take an honest look at the excuses you may be tempted to make - where are they coming from? The further on I go the more I realize my decisions are either made based on trusting my God, or from fear. There is no other option. Is it hard? Yes. Does our decision to adopt put stress on our children at home? Yes. On our marriage? Yes. On our finances? Yes. On our own physical health? Yes.

But what about the alternative? What kind of impact does it have on our children, our marriage, our own physical well-being when we decide that the preservation of any of these things takes precedence over obedience to our King??

Whoever loves father or mother more than me is not worthy of me, and whoever loves son or daughter more than me is not worthy of me. And whoever does not take his cross and follow me is not worthy of me. Whoever finds his life will lose it, and whoever loses his life for my sake will find it. - Matthew 10:27-29 

I need to repeat that last part. Whoever finds his life will lose it, and whoever loses his life for my sake will find it. Far from needing to protect ourselves, the only real way to preserve ourselves is to lose ourselves for him. Over and over he drives that home to us in his Word. It can be so tempting to believe the lie that we need to look out for ourselves, when in reality, the only way to really do that is to recklessly throw ourselves on him. The challenges and fears associated with what God calls us to are only barriers to obedience when we take our eyes off him.

...let us run with perseverance the race that is set before us, fixing our eyes on Jesus, the founder and perfecter of our faith, who for the joy set before him endured the cross... - Hebrews 12:2b-3a

 

The life of obedience is not an easy, comfortable life, but over and over I see that it's not just a call to come and die, but a call to come and die so that you might really live! There is JOY up ahead! And the way to that is not through fear and self-preservation, but through faith and obedience.

And without faith it is impossible to please him, for whoever would draw near to God must believe that he exists [as in, he's really able to do what he says he does, really is bigger and stronger than anything we might be afraid of] and that he rewards those who seek him [there it is again - he promises this is for our good, this is how we find real life, there is joy ahead, he rewards those who seek him!] - Hebrews 11:6, [with my own comments in the brackets]

So, if you are the one reading this who needs to go. Go.

There. Now back to Mira.

We hit nineteen minutes of the seizure cluster, with poor Mira alternating between seizing and moaning or crying. We were in our own little world. I was vaguely aware of my Dad helping us with timing, and just general readiness, but otherwise it was just me, Adam, and Mira alone in this little bubble of space and time. We did one more verification of our best guess at the correct dosage for Mira and went for it. The medication is meant to be pre-set by the pharmacist and administered all at once; we did not have that luxury, so had to both guess the correct dose ourselves and make sure we only gave the amount we wanted to give. (Once again in hindsight, we did well; the neurologist here at Gillette wants her to be on a 2.5mg dose, and we estimate we administered about 3mg.)

When Reuben was originally prescribed this medication as a rescue measure, we were told to call 911 the first time we administered it because there is a risk of everything slowing down so much that even breathing is impaired. Adam watched her carefully, and she handled the dose beautifully, with the seizures calming after about 2.5 minutes, and by four minutes she was asleep - just what we expect out of Reuben. All of her vital signs remained steady, and she slept peacefully for about 20 minutes, and then was awake on and off for the rest of the flight.

Looking over, I notice that Bogomila has the world clock app set to Minneapolis. 

I got up at one point to use the bathroom - just to move! - and realized I was trembling almost incontrollably by the time I returned to my seat. As all of the adrenaline, not just from the very intense last half hour, but also low grade levels from the entire week prior, dumped from my system all at once, I was beginning to wonder if the Nurse of the Twenty-Seven Pockets might have another patient on his hands! Thankfully, this one was easily calmed with a few drinks of water.

The rest of the flight was uneventful, and passed in a sort of haze. We now knew without a doubt that "wait for outpatient on Tuesday" was no longer an option, but were also thinking that "ambulance at the gate" was not going to be necessary.

[You can will soon be able to read Part Three HERE.]

Traveling home: Part One

What follows in this post is a reflection a few days after the fact on the very long Saturday of bringing Mira (and the rest of us) home.

All week long we'd been watching Mira transforming before our eyes. the changes were all small, but they were definite, and steadily moving in a beautiful direction. Her body was gradually relaxing. She was becoming familiar with all of our voices. I had been moving from very delicate, gentle, light touches in just a few areas (her hair and her back) to holding her hands, stroking her legs and her cheek, brushing kisses across her face, and allowing the weight of my hand and arm to rest on her as I sat near her. She was tolerating (and perhaps even enjoying??) all of that beautifully.

Remember, this is the child who we were told ought not to be touched because touching her causes her to have seizures.

This both turns my stomach and breaks by heart at the same time. Humans are designed, created, to need the touch of others. It make me sick to think that for years, Mira's doctor has provided a medical excuse to her caregivers to deprive her of this most basic human need. We know that she was not the only one deprived of human touch during those long years of laying alone, for days, weeks, years of nothing. It makes me sick to think that although her caregivers had no issue depriving all of the children in their care of the kindness and affection that they needed, but that they likely felt medically justified in doing so to Mira.

My mind simply can not fathom the loneliness that these little ones have endured! My heart is broken knowing that although, yes, touch may have been a seizure trigger for Tsvetomira, and, oh, as I type this, the anger in me at the injustice of this forces tears from my eyes - it is more likely that it was not touch itself that was triggering seizures, but the stress caused by a sort of touch that was always rough, never kind, touch that was not intended to nurture, but to complete a task in the most efficient way possible, and with no consideration of the tender human life that was on the receiving end of that touch.

This is a scan of the photograph of Krassimir on his official referral paperwork. Everything about this photo is painful for me - the way he is being handled like an object, the look of terror not only in his face, but his posture...

There is no way you can convince me, or anyone else who was with me that week, that she can not tell the difference. She absolutely does not have a seizure response to touch. Far from it, she is calmed by the combination of her mommy's gentle touch and kind words. And who is surprised by that?

She was also beginning to move on her own by Friday. How surprised I was when, sitting next to her, I noticed her moving her arm!! I'd thought I'd seen a few leg movements, but since we'd had her snuggled under her blanket to keep her warm, it was harder to tell. There was no doubt about that movement of her arm, though. Incredible. In only a matter of days the healing power of gentle words and loving touch was manifesting itself in her.

So, we started our day of travel early Saturday morning with high hopes. Not only were there many visible cues that she was doing well, but all of Adam's work watching her, both internally and externally, and adjusting her routines over the week had done exactly what we had hoped for - given us the best possible Mira we could have to be ready for a very long, hopefully very boring day of travel.

After Mira's midnight feeding, I slept fitfully, dreaming that I'd gotten to the airport before realizing I'd forgotten to pay for the hotel! After waking fully at 3am (Sofia time) to give her the last feeding in the hotel room, it wasn't really worth trying to go back to sleep. I showered, packed up the last few things that we'd been using overnight, and then it was time to wake the big girls. I was greeted with plenty of resistance, but we managed to get up and going and dressed before our men came over to check on us and help load up the luggage cart so we could begin the three elevator trips it would take to get us all down to the hotel lobby.

After remember to pay for the hotel (phew!) we asked if we could purchase some washcloths to bring home with us - we were so well prepared for Mira's needs in so many ways, but did NOT have something nice to put under Mira's cheek to catch her drool. At 5 leva each we splurged - I had enough cash on me for two, and Adam pitched in to get us three more. I plan to send him one as a souvenir. ;)

Our taxi driver on the way to the airport was marvelous, very attentive to taking it easy for Mira's sake, and one of the first taxi drivers I'd met in Bulgaria who spoke quite good English.

Leah snapped a photo of the terminal, sparkling beautifully in its holiday decorations in the early morning darkness.

Adam's done this a few times before, and knows to bypass the lines, and go right to special services to ask for someone to help us navigate through security checkpoints.

There's my big girls, half asleep, trying to pound a few muffins before we go through security.

Mira's looking good! Alert and calm. Dad and I tease Adam that maybe we don't need him along after all. We're all well aware that this is purely teasing, and we have a lot of day ahead of us, with plenty of unknowns, but we're feeling pretty good about the start we've had.

We have made Adam's bag a part of Mira's chair on purpose - there's no doubt that there are medical supplies for a very sick little "baby." Everything we have brought in that bag, sharp things, liquids, opened and unopened, in sizes much greater than three ounces, all get through security (including our home made saline!)

So far so good - we wait for a bit inside the gate checkpoint in a quiet, semi-private area. Our seats are all six of the second row of the plane - not quite as nice as the first row, but sufficient for this shorter flight to Amsterdam. We are given permission to board, and roll Bogomila and Tsvetomira down the jet-way to the small Bulgaria Air plane. Bogomila gets the window seat by Leah and Grandpa, and Mira gets the window seat with me and Adam.

Carefully studying the safety information! Bogomila, of course, can read it. I remember my own uncertainty on my first plane ride when Matt and I were in graduate school, and can see that in her, and have no easy way to comfort her. But she is brave!

Mira lays across her seat and my lap supported by her memory foam cushion with an extra liquid positioner also placed within the pillowcase. Adam's stepped it up a notch, wearing not only his scrubs, but also his badge and his Amazing Vest with Twenty-Seven Pockets.

We start feeding Tsvetomira before takeoff, taking it even slower than we usually do, because, really, what else is there to do? We're just sitting on the plane for the next few hours! And we know that avoiding reflux is in her best interests for many reasons. Everyone handles the flight beautifully, and we land in Amsterdam. There's no way we're getting off that plane before everyone else is off, though, no matter how close we are to the door! When we finally get off the plane and climb down the stairs to the tarmac and onto the waiting handicap bus...which is surprised to see us. They were expecting to only be assisting the older man waiting behind us. We are so grateful that man was on the plane. They were somehow not anticipating our complicated crew (despite previous paperwork we'd filled out), and if he had not been there, the shuttle would not have been, either, and we would have had to wait (in the cold) or take the bus! Neither girl's chair has been brought around for us; we are very grateful for the shuttle. Adam has carried Bogomila down the stairs to get off the plane, and after the shuttle drops us off, he carries her into the terminal. I am carrying Tsvetomira. Bogomila, who has been accustomed to being able to talk to anyone except for us, asks a question of the airport personnel,,,and realizes she's truly not in Bulgaria anymore! It's either Dutch or English from here on out. By this time, we have only a short amount of time to get to our connecting flight. We are given the assistance we need and brought to our gate where there is a question regarding our seat assignments. We knew Adam's was not next to ours originally because we purchased his tickets at a later date, but we were NOT expecting to be told that the most seats we could get together were two. That's not enough. At a bare minimum, we told them, we need three - Mom, the sick child, and the nurse need to be seated together. The mom in me is deeply hoping that at least the two sisters will get to sit next to each other as well, even if they're not with us, and if Grandpa has to go by himself somewhere, we could make that work. We were even talking of having Grandpa fly standby on the next plane!

After a bit of finagling, we get onto the plane, as some of the last people to board. We make our way down to the center row of four where Adam, Mira, and I are supposed to sit...and there are only two seats open. A little shuffling, and one person who had moved himself up there moves back to his spot, so at least the three of us are together. Six rows in front of us on the window side of the right aisle are Bogomila and Leah's seats. As I am shuffling between settling Mira on the seat with Adam and trying to help my girls get into their seats, the kind people sitting directly across the aisle from me pick up on the situation and offer to switch with the girls so they are close to me. There is still no seat for Dad until he is offered one in first class - the speed with which the lady sitting in the fourth seat of my, Mira, and Adam's row decides to switch with Dad is incredible. ;) So, shortly before takeoff, we were finally all seated in six seats all in a row. We settle in for the long ride, Adam lining up all of his supplies for feeding in the seat backs in front of us (and some of his Twenty-Seven Pockets), Mira's head on his lap, and me trying to engage a bit with Bogomila across the aisle with an iPad app that doesn't do voice intake on the plane. Typing everything is much slower, and the concepts we're trying to get across are getting more complex. But she loves the in-flight screen on the back of the seat in front of her (though is disappointed that "Bulgarian" is NOT one of the language options!) and is thrilled by the juice, peanuts, and pretzels.

We settle in for a long boring flight, and once again joke with Adam about how he did such a good job all week that we're now feeling a little over-prepared for the trip. He diligently measures Grandpa's hand-crafted saline with four scoops of baby formula, shakes it up, and puts the prepared bottle into one of his pockets to wait for the time for her next feeding.

[You can read Part Two HERE.]