Miracle, Part 6: Thursday

On March 12, 2013, our then-13-month-old daughter, who is called Rosebud on the blog, was injured in an accident in our home. This is Part 5 of the series in which I relate the story of the injury, our subsequent 4-week hospital stay, and the ongoing recovery process. This story is very difficult to write and relive. If you choose to comment, please be kind. I promise you that there is no judgment or condemnation or blame that you can place on me that I haven't already placed on myself. The index to the whole series can be found by clicking this link.

Due to the emotional difficulty, I never did get everything written down in journal format at the time. I carried a journal with me through our entire hospital stay, but somehow I just couldn't bring myself to open it. I do regret that, in some ways. Parts 1-4 of this series, which were (mostly) written shortly after the events, are presented in a present-tense format. The rest of the series will be composed of (1) my facebook status updates and comments from the time of the events, and (2) my current commentary for filling in details, emotions, etc. 

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March 14, 2013

2:50 am (yes I was awake, still):
"Her heart is the big worry now. Her lungs are still weak and she's still on the ventilator (she could breathe on her own but was getting distressed and fighting, so they sedated and intubated her to allow her body to heal without fighting itself), and they said her lungs might get worse before they get better. But her heart was really bad earlier. There has been some improvement so we are counting our blessings! We have a room at a nearby home for families of hospital patients so were able to get showers and a little sleep (except I didn't sleep). [Jeric] is with my parents and lots of family has come to visit us today (not her, necessarily, but us). We have seen just how many wonderful friends we have -- thank you all for your love, support, and prayers. We have felt every one of them! I'll try to update again soon."

The heart worry that I mentioned her was that they had noticed some irregularities in her blood labs on Wednesday, plus I think something sounded off when someone was checking her heart tones. I don't remember all the details, but her bloodwork looked similar to what it would look like for someone who had suffered a heart attack. The pediatric cardiologist (Dr. MG) was called in. He ordered an echocardiogram and read that before coming to see Rosebud in person. When he saw her, he couldn't believe that she was the same child whose heart he had just been looking at on the echo. He thought she should have been much more sick than she appeared to be, based on the echo. Dr. MG said that this was an encouraging sign, and put her on a medication to help her heart get back to normal function. He said she would have regular echocardiograms over the next several days, probably starting with a second one later that some day, to see if she was responding to the medication.

Apparently, the damage to Rosebud's heart was consistent with a heart attack, but with no blockage to cause one. Dr. MG asked lots of questions about the accident, did it hit her in the chest, etc. I couldn't remember well enough. It all happened too quickly. I thought that it had hit her in the back as she fell, not on her chest. He told us the next day that he had consulted with other pediatric cardiologists across the country, and that no one he talked to had ever seen such an injury related to a traumatic accident. He couldn't find any instances of a similar case in the literature for his discipline, either. He was able to find a cardiologist for adults who had seen one or two cases of this in adults. Dr. MG said several times that Rosebud was "worthy of a case study." I hope that some other doctor is able to learn about her case and help another child, somewhere else.

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8:13 am:
"More encouraging signs overnight. Looks like she's going to be on the ventilator for a while still. Heart rate continues to drop and is now in the 'high normal' range -- yay! We know she will probably still have setbacks but are grateful for what improvement she has had."

10:48 am:
"Heart is even better!"

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Late Wednesday evening, Joni posted on her facebook that they were in our area for a family emergency and needed someone to keep their dog for a few days (they'd lived in the area when their oldest was a baby, so knew some people who could help). One of my best friends, Ameleah, saw the post and said later that her heart dropped instantly because she just knew it was something about me, my husband, or my kids. Ameleah called me on Thursday morning and we talked for a long time. She expressed her desire to show her love and support by visiting us in the hospital, a two-hour drive. We decided that she and her newest baby (I had visited them in the hospital on the day he was born, less than a month previously) would come in the afternoon.

In the intervening hours, we met with Dr. MG (cardio) and Dr. B (neurosurgeon). Also, I spent a couple of hours with my friend the Medela (pump).

Later, Husband and I went to the Family House for showers and naps. Again, I couldn't sleep, though I did try.

We had specific, sacred experiences at this time that confirmed to us that several deceased relatives were watching over our Rosebud, offering unseen-but-felt support and comfort to us, and making sure that she was NEVER alone (there was always a family member with her, but sometimes we were asleep and maybe missed things). The details feel too private and sacred to share in this forum, but I feel a need to testify that these experiences did occur, and these spirits were there. As surely as I know that I was there in that room with my daughter, I know that they were there, too. Sometimes they took turns checking on Jeric, too. :)

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While we were at the family house, Kevin and Joni traveled the hour+ to our home to get a few things for us and help it look "normal" for when we would return home. I told them to get rid of the Item, after the people came to weigh it (it was heavier than I expected...57 pounds, and the stand was 38). I didn't care what they did with it, but I never wanted to see it again, thankyouverymuch. Before they got rid of it, though, they set it back up and took a video of throwing it down. Husband wanted to see what had happened. I have still not seen this video, and don't know if I ever will. But they described it to me. It helped us understand where we made our Big Mistake. Please, someone, learn from our mistake. It never occurred to us to think of this, but I hope that our story can warn another family in time.

When Rosebud used the open drawer as leverage to return to a standing position, it caused the front-heavy Item to slide forward on the stand. Once it started to slide, there was no stopping it. It fell much more quickly than the stand, the front bottom edge slamming into the ground at almost unbelievable speeds, then the top flipped forward and hit the ground, before falling back again the other way and settling with the screen on the ground. I don't know if that makes sense without the visual, but I can't bring myself to post the video that I haven't even seen. I'm sorry for that.

They said there was no way that I should have been able to get Rosebud out from under it before the full weight settled on top of her, even as close as I was.

But I did.

That is the one thing about the whole Incident that I am absolutely sure I am remembering correctly. It knocked her down and flipped over her, but I had her out before the weight settled.

They helped me. The spirits of our loved ones. When I remember The Incident, I can almost feel them throw me across the room. I am absolutely sure they were there.

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After our unsuccessful nap at the Family House, Husband and I headed back to the hospital. As we pulled into the parking lot, we saw Ameleah, car seat in hand, heading toward the front door. She saw us and waited by the entrance, where Husband dropped me off before going to find a parking space. When she hugged me, I felt the tears try to come, but I blinked them away for a few minutes.

We walked up to the waiting room and sat in the chairs, talking, while Ameleah fed baby C. While he was eating, Kevin and Joni arrived back at the hospital from our house. When baby C was full, he stayed with Joni while Ameleah and I went into the PICU. My MIL had been with Rosebud while I was gone, but she left to get something to eat.

I'm not going to lie. It was HARD to take my friend into that room where my baby -- my baby -- was lying, hooked up to machines, tubes down her throat, IVs all over the place (she actually got a pressure sore on the top of her foot from one of them), sedated. We cried together, tried to comfort each other.

Sometimes it is hard to feel comforted. But it helped, having her visit. It was a tangible reminder of the many people praying for us, for our baby girl.

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11:42 pm:
"She has had a good day. Still on ventilator, but oxygen level and pressure levels are lower, which means she is able to stay stable with less help. Her heart function is nearly normal and the cardiologist was all smiles about her latest test. Neurosurgeon is not seeing anything that would point to a lasting brain injury. IF (still a big if) everything tomorrow goes as well as today, she may be able to wean off her heart medication tomorrow and *possibly hopefully* off the ventilator over the weekend. She is also now on a feeding tube of my pumped breastmilk. I've managed to pump over 50 ounces in the last two days (awesome for a mom of a baby this old...nobody can believe how much I've got)."

This day was the first time we saw the neurosurgeon. It wasn't the most pleasant encounter. He sent us out of the room when he came to examine her. I'm still not sure why. I wish I'd been more vocal. I wish I'd asked why he didn't want us to say, and if there wasn't a good reason, informed him that I would, in fact, be staying, because I was (am) her mother. But I was too tired to advocate for our family. I let him push me out of the room. I regret this. If there were some good reason for us to not be there, of course we would have left. But I get the impression that it was probably more for his own comfort. :/ And that kind of makes me really mad, even now, to think about.

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Another sleepless night spent at Rosebud's side, hoping for a better day tomorrow.

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A few pictures from Thursday.

 With all the wires and tubes.

My poor little swollen sweetheart. It was so hard to see her this way. See her eyelids? 

I kissed her often. I couldn't do much more to help her, so I just had to love her a lot. 

That IV port in her foot gave her a pressure sore. She has a scar the size of one of my pinky fingernails. 

Swollen. It was awful.

Miracle, Part 5: Wednesday

On March 12, 2013, our then-13-month-old daughter, who is called Rosebud on the blog, was injured in an accident in our home. This is Part 5 of the series in which I relate the story of the injury, our subsequent 4-week hospital stay, and the ongoing recovery process. This story is very difficult to write and relive. If you choose to comment, please be kind. I promise you that there is no judgment or condemnation or blame that you can place on me that I haven't already placed on myself. The index to the whole series can be found by clicking this link.

Due to the emotional difficulty, I never did get everything written down in journal format at the time. I carried a journal with me through our entire hospital stay, but somehow I just couldn't bring myself to open it. I do regret that, in some ways. Parts 1-4 of this series, which were (mostly) written shortly after the events, are presented in a present-tense format. The rest of the series will be composed of (1) my facebook status updates and comments from the time of the events, and (2) my current commentary for filling in details, emotions, etc. 

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Day 2: March 13, 2013

Posted in group, 11:14 am: "[Things are] not great. She's one of the sickest in the PICU here. We are still cautiously optimistic and they are taking good care of her. Continued prayers appreciated!"


What I didn't say:

I didn't say that Stephanie, our nurse, spent the night with her portable computer pulled up in the doorway of Rosebud's PICU room. She had no other patients assigned to her that night. Rosebud needed her entire focus. I was also told that, if a room became available, Rosebud would be moved closer to the nurses' station (she was in the corner room), so more nurses would be more readily available if needed.

I didn't say that Rosebud spent the night immediately following The Incident in a crib...for the first time in her life. She seemed dazed and confused and "out of it" much of the time. They had her on oxygen assistance, but I could tell she still struggled to breathe. Occasionally she would "snap awake," for lack of a better phrase, because she wasn't really sleeping. When this happened, she thrashed around looking for me. I could tell she definitely recognized me. The nurse commented on it, too. She kept trying to move her body to get into my arms, but her movements were uncoordinated. I spent the night in a chair beside her crib, stroking her little arms, patting her tummy, kissing her fingers, trying desperately to communicate my love and sorrow...and hope. I didn't sleep.

I didn't say that I tried to hold her a few times, but she got too agitated when I did. I didn't say that we made the decision that I wouldn't hold her until she was more stable. I didn't say that this broke my heart.

I didn't say that her neurological state seemed to improve over night, but that I watched her breathing become more and more labored.

I didn't say that I had to leave the room in the morning, right around shift change (new nurse: Virginie), so that they could do a chest x-ray. I didn't say that I collapsed in the hallway just outside her room, by the nurses' station, and sobbed. The other Stephanie, the one who brought me water when we arrived, came and put her arms around me and cried with me. After a moment, while they were still working on Rosebud, I left to tell Husband what was going on, to ask him to come to her room with me.

I didn't say what went through my mind a few minutes later when I tried to go back in, and they wouldn't let me into the PICU. Instead, the chaplain was there, and he's the one that told me...

I didn't say how it felt when he told me that she had needed to be sedated and intubated (a tube down her throat to her lungs, and a ventilator breathing for her) to allow her body to rest and heal. I ran to Husband, sure that our girl was dying and we wouldn't even get to see her until after she was gone. I didn't want it to end like this! Everything was just so surreal. The chaplain was wonderful. He explained things to us and prayed with us and helped us talk through it.

I didn't say that I couldn't take it anymore and took off running down the hallway, just in my socks. I didn't say that we walked laps up and down that hallway, talking, praying, crying, until they let us back in to see her.

I didn't say that she had another CT scan that morning, and that it showed that the bleeding on her brain was resolving, slowly. I didn't say that I was scared to hope that this was a positive sign.

I didn't say what it is like to be sure that your baby isn't going to live, and to have to make peace with that potentiality.

I didn't say that I knew -- I KNEW -- that it was going to be okay, somehow, no matter what happened.

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Husband and I dealt with this crisis in two very different ways. I had to be with her at almost all times. It was agony to be away, but sometimes I had to take a moment of distance so I wouldn't scream. Husband, conversely, could only be with her for a few moments at a time. He needed to be near -- in the waiting room, usually -- but he couldn't stand to see her that way. His feelings of responsibility for her condition were so strong.

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By the end of the day on Wednesday, my mom and Husband's parents had arrived to help support us, along with Husband's brother's family. My dad was still there, too. We made the decision that my parents would take Jeric home with them for a few days. My in-laws planned to both stay that night, if I remember correctly, and then my father-in-law would head off on a business trip while my mother-in-law stayed a few more days. Kevin and Joni decided they'd stay the night at a hotel, and that Joni's mom would come pick the kids up on Thursday for a few days so they could be at the hospital with us.

My father-in-law had called Kevin after lunch on Wednesday and told him what had happened. He immediately went home and they packed up and drove the 3.5 hours to the hospital. Joni had been in the middle of starting dinner prep and had onions cooking on the stove. She turned the stove off, but in her haste decided to just worry about the onions when she got back. The next week after returning home, she sent me this picture of the dried-up onions (I include it here for comic relief):

Other visitors in the first day or so included my aunt, my cousin, and two of his daughters. My cousin's family lived in a neighboring town, and my aunt had been down visiting. We also had a couple of Husband's coworkers stop by with a care package and snacks, and an envelope with a collection they had taken up at work. Words cannot express my gratitude for the goodness of others in our time of difficulty.

One of the hospital's social workers came to see us and let us know that there was a home nearby for families of hospital patients -- like a Ronald McDonald House, but locally owned and operated. Husband called right away and got us on the waiting list for that night. When they called later and let us know they had room for us, Husband and his dad headed over to get us checked in. Meanwhile, my parents took Jeric to Walmart to get him some clothes (because he was still in the same pajamas from the night before, and no shoes). They also brought a few essentials for me and Husband because we were going to be at the hospital for the long haul: a couple of t-shirts to change into, extra socks, towels, toothbrushes and toothpaste, deodorant...

In the afternoon we went to the Family House and showered and tried to nap for a little while (I couldn't), then back to her side. My in-laws slept at the Family House that night. I wasn't leaving my baby, and Husband wasn't willing to leave the hospital without me.

I thought my heart would break when Jeric left with my parents.

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At some point on Wednesday, we were visited in PICU by a trauma specialist / pediatrician, Dr. ME. She took Husband and I, separately, into another room and took our statements and exhaustive medical history. She was also a young mom, and very kind. It was helpful to talk through what had happened in order to begin to process it all. At first, I thought she was someone from CPS and that she was going to take my children away from me, that she was going to decide that I was a neglectful, unfit mother and that it was all my fault. But she shared with me that she wasn't perfect, either, and that there would doubtless things in her house that would pose a hazard to her 9-month-old son, who was just beginning to be mobile (she is not the only doctor in that hospital who worked with our Rosebud who came to me at some point and said that they had gone home and checked all their furniture and bolted everything to the walls). She told me that she was very interesting in studying things like, "Well, if we have this much force from such-an-angle/height, and the person is so tall and so heavy, what kinds of trauma does that cause? What kind of force does is take to cause X injury?" (To learn these things about Rosebud's accident, she sent some people--detectives, actually--to our house the next day to weigh/measure the tv and dresser that fell, and also filed a consumer hazard report on the tv. Kevin and Joni were at our home when they came.) Dr. ME came and checked on us several times after that, while we were in the PICU.

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Sometime in the morning they brought me a breast pump and the bottles and tubes and everything to use with it. When I first sat down to pump, it had been about twelve hours since Rosebud had last eaten. I pumped 18 ounces. After that, I spent a significant portion of every day with my pump. No one could believe that my baby was 13 months old, and I was still getting around 30 ounces a day. It went into the freezer for future use. I also sent Husband to get me some supplements to help me keep my supply up. I had high hopes of re-establishing breastfeeding once Rosebud was stable enough.

I don't remember eating much, if anything, all day.

I still didn't sleep.

Miracle, Part 4: The first night

On March 12, 2013, our then-13-month-old daughter, who is called Rosebud on the blog, was injured in an accident in our home. This is Part 4 of the series in which I relate the story of the injury, our subsequent 4-week hospital stay, and the ongoing recovery process. I apologize for the long delay between posts. In fact, I am completing this post (which was half-written) over a year following the writing of the earlier posts. This story is very difficult to write and relive. If you choose to comment, please be kind. I promise you that there is no judgment or condemnation or blame that you can place on me that I haven't already placed on myself. The index to the whole series can be found by clicking this link.

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March 13, 2013

1:00 am

Rosebud and I arrive in the PICU. Her room is crowded: several nurses and CNAs. The doctor isn't present, but is available if needed. As they take her from me, I discover one of her IVs has been pulled out of her little hand by her erratic movements. The blood drips off her fingers. No hand so small should ever need an IV. I apologize to the room at large, believing it is my fault that the IV came out, of all things. I feel dizzy, watching them work on my baby, who is still largely unresponsive. I must sit down in the corner of the room.

One nurse approaches. Stephanie, with long hair. There is something about this nurse: she shines. She asks if there is anything I need. I don't know, I say. I don't know what I need or even if I need anything. She says she will bring me some water.

The ice is crunchy.

Someone else approaches. Paperwork. I answer questions. I sign. I can't pay attention.

Rosebud's assigned nurse for the night, Stephanie with short hair, says that she is going to park her computer by the door to keep a close eye on my baby. Someone else tells me that Husband is in the waiting room. I am so relieved that he found us.

They ask if I want them to go get him. I say no, I need to trade places with him. They say we can both be with Rosebud. No, I say. Our three-year-old is here too. I will go sit with him. They understand now.

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1:15 am

I enter the waiting room. I hug my big boy, my brave J-dawg. He must be so tired.

Husband says they went to the car. His supervisor had a cell phone car charger that fit my phone, so they took it out to plug it in.

Husband goes to see Rosebud. He hasn't seen her since we turned her over to the EMTs in the ambulance. He doesn't stay with her long; it is painful and this is how he deals with it.

I cuddle J-dawg and try to convince him to sleep. He doesn't want to. We talk a little about what happened. He understands as well as is possible. No sleeping yet.

Husband returns. He thinks we should all try to eat something, thinks it might help us rest. The hospital cafeteria is open until 2am, so we go down. I don't want to leave Rosebud, but know Husband is right. I ask the nurses to call us the moment anything changes.

Husband also says that my mom called to say that my dad is on his way and will arrive around 2am.

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1:30 am

The cafeteria food isn't bad, but I only eat a few bites. J-dawg eats about half a waffle. He is clearly so tired. I wish we could help him sleep. I worry he'll have nightmares.

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1:45 am

We can't eat anymore. Husband wants to go to the car before returning to PICU. He left it on so the phone could charge. We head to the main lobby / visitor's entrance.

Daddy. There is my dad. He's at the desk, registering as a visitor.

I sob. I can't stop.

Guilt. So much guilt. This is his only granddaughter. What if she doesn't make it? It's my fault, all my fault.

...Will he ever forgive me.

Tears. Hugs. "It's going to be okay," he says. "I don't know what's going to happen, but it's going to be okay."

I'm sorry, I'm so sorry.

Jeric is happy to see his grandpa. I am glad we aren't alone anymore.

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2:00 am

We are back at the PICU waiting room. I send Husband and my dad back to see her. No change. She is still out of it. They are going to give her a priesthood blessing. I stay with Jeric. I want to be there for the blessing, but Jeric can't be in the PICU and we are not waiting any longer for a blessing.

Jeric and I pray. He still can't sleep.

I try to help him relax. We snuggle together on the pull-out chair bed. I don't know what to tell him. I don't know what to say.

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2:30 am

Dad/Grandpa finds us in the waiting room. He takes over responsibility of helping Jeric.

I go back to my girl's side. You'll hardly see me away from her for the foreseeable future.

It is now Wednesday morning. I don't sleep until Saturday.

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2:35 am

Husband tells me that the blessing was comforting. He says he wanted to bless her to heal completely, that there would be no lasting effects of her injuries. He believes this is his desire, not the prompting of the Spirit. He makes the conscious decision to *not* say these words.

They come out anyway. He felt assurance.

I feel assurance, too. I feel encouraged. I know our journey is only just beginning, but for now, I have hope. I have faith.

I don't know, yet, just how much that peace will be challenged in the hours, days, weeks, months ahead.

Our girl is beautiful. She is strong. She has so much ahead of her, so much light to give to the world. I have known this from the beginning of her life.

Oh, how I want to hold her again!

How I wish we were never here!