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.
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| Mira got to go inside for a few minutes. Look how happy her Daddy is to see her! |
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.
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| Does she not have the most beautiful eyes? |
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!
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| Daddy and Gloria visiting with Mira on one of their visits to the hospital. |
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