Healing

Maybe it was coincidence. I never really watch television except an occasional program on public television. But while I was with Sarai in the hospital I was struggling and needed a mental distraction. I turned on the television and watched a program called Dr. Phil. He was giving advice to families who had faced trauma and grief from the sudden and unexpected death of a loved one. I didn't catch the whole episode, but enough of it to enjoy some of his insights, though I found some phrases or suggestions like you have to "move on" a little too insensitive. But I could sense he was sincerely trying to encourage healing in these people's lives.

His show ended, and then Oprah came on. I really don't watch these shows, and it was so odd what topics were being discussed. This episode featured a mom who had made the terrible mistake of leaving her baby in the car too long, resulting in the death of the child. I honestly don't remember this specific case, but don't tend to be quick to condemn. So I felt a sense of understanding in watching and listening as she described her experience with grief and how she is working on healing.

There has been so much happen in this last week. My last post was from the hospital. Today I am writing from home. I had a very sick little girl who is still sick, but healing.

I can't describe what it was really like to be there again. We've been in that hospital three times before with her and wondering what was going on and never really getting answers. It is where Bridget and Dominic were with so many tests to try to understand being performed and still we are unsure why they had their crisis events.

They were at least able to find some things this time. And yet, there are still things left open-ended. We already know how doctors want to help but aren't always able to. I held my little girl and just wanted to know -- is she okay? Is she going to get better? Is there something more than the respiratory illness that they have found?

Tests did come back confirming that she had a carnitine deficiency in addition to the respiratory illness. Some may not even have any idea what that means, but I was already somewhat familiar with this condition. It is one that was suggested to me early in my pregnancy with Sarai. It is something that specialists wondered about Dominic and Bridget having. When Sarai was in utero, they told us we'd need to test her for this when she was born. Because if she had this, it was easy to treat with a daily supplement, but left untreated the child would be susceptible to the same cardiorespiratory distress that Dominic and Bridget had had. We had indeed, tested her, but at the time the results did not look concerning. Now, however, she indeed had low carnitine levels.

I wonder about this diagnosis and how long her levels might have been low. The doctor feels comfortable with the theory that it is only a result of her being ill for so long and not eating well. But I am not so sure. The doctor feels that this is related only to the illness and not some underlying metabolic disorder. Yet he also conceded that there is just so much doctors don't know and that there is still a possibility of something else. And where you read of the deficiency causing encephalopathy, I find yet another term that I've heard discussed before.

They decided that a feeding tube was a good idea for Sarai. So they placed one. That sounds really simple, and usually it would be. But for some reason it wasn't so simple. The nurse tried to place it and was unable. Another nurse tried to place it and was unable. They called the charge nurse in, and even she was unable. The doctor said we should take her to radiology in the morning to have it placed. The next morning, the nurse came in and tried to place it. She tried and tried, just as the others had. Sarai was very upset by all of this. The nurse was perplexed and said that in the nine years she had been working, she had never been unable to get a tube down. Another charge nurse came in. She was finally able to get it in, the trick being to leave the stylet inside. Here she is after that first tube was placed, still not feeling well at all.

Later they were suctioning out the secretions from her nose and throat. She really doesn't like that at all. She was very upset, and afterward I was holding her and trying to comfort her. I realized there was milk bubbling out from her nose and mentioned this to the nurse. She came over and we wiped it away, just to have more milk appear. She left to get the charge nurse as milk continued to bubble out of her nose. As the charge nurse came in, the end of the tube suddenly popped out. This was where the milk was coming from. Of course, this meant another attempt at putting down a tube. And with all the difficulty of placing the first one I was concerned about doing it again. However, they used the stylet again and were able to place it in just a matter of minutes. Here she is with the second tube, and starting to feel a little better after having had the carnitine supplement, the continuous feeds, an IV going, and generally starting to fight off the illness that they say started this whole thing.

Unfortunately, Sarai coughed that tube up when they had to bug her again. So yet another tube was placed. And fortunately this time the stylet trick worked again. She was continuing to seem to improve as well. Everyone was so excited when they were finally able to see her awake and even a little intersted in playing. She was even somewhat interested in food, though not quite swallowing much. So she would let it fall down the front of her shirt, which you can see in the next photo of her sporting the third feeding tube.


Sure, the doctors and we are all glad that Sarai has made good improvements. It was so upsetting to see her so sick and not seeming to get better those first couple of days. And while I am so glad to be home and so hopeful that she is healing, I still feel quite nervous. There are still thinks that have the doctor perplexed, just like the last three times she had been there. Like the strange breathing episodes she would suddenly have that looked bizarre and yet her vitals would stay in a good range through:



So many unknowns, and yet I hope she really is healing. It is so scary, though. I felt like I was working on healing after Dominic died, and then suddenly the wounds of grief were ripped apart with Bridget's death. To say it hurt so much is an understatement. Last night as the alarm kept going off with low heart rate, I tried to imagine it was just the feeding tube pump alarming. It is hard to think she is okay when there is still so much healing left for both her, and healing left for my mind to do.

It was nice to spend the day at home together again yesterday. I try to stay focused to enjoy the sunshine in spite of the shadows. We are so grateful for each moment. I think she is just absolutely beautiful, even with the tube.

Troubled

The troubles of my heart are enlarged: O bring thou me out of my distresses.
Ps. 25: 17

I wrote of being sick and having my husband and little ones sick. All of May we dealt with illnesses. And now June has also been filled so far. I had been grateful that the baby hadn't become ill. And then at the beginning of the month she started having a yucky nose and really red eyes. She was acting miserable and tired. We took her to her pediatrician and he thought it was merely allergies. By the end of the week she was still not doing better and was tugging at her ears. It was the weekend so I took her into urgent care. They examined her and decided it must just be teething with maybe a little eye infection which was beginning to clear up with drops. That night she started having fevers. Three days later when she was still not better, I took her into the family practice. He said both of her ears were red and started her on an antibiotic. Every time I gave it to her, she would throw up. She started getting so much more sick. I called the doctor again and explained that the antibiotic seemed to be causing more trouble. He had us wait until morning to make sure and when I called back to confirm that she was still doing poorly, they switched to a new antibiotic with only a three day course.

Her fevers continued. She did not seem better at all. Her heart monitor kept alarming more and more with high heart rate. Finally, we spent the night with the monitor pretty much constantly alarming. Her temperature was only getting higher. She was not eating anymore. Could hardly breathe as her nose was so congested. We decided to take her to the emergency room, as urgent care wouldn't open for three more hours and couldn't do IV fluids if she needed them.

We got to the hospital where she was born and were quickly brought back to a room. Her heart was still racing. The doctor came in and did an exam, then told us she looked very ill and he wanted to transfer her to the Children's hospital. We reluctantly agreed. I really didn't want to go there. Where we were last fall and they couldn't find answers. Where we were with Bridget and Dominic when they died.

But here we are, going on three days later. And she still has fevers and is not eating and is just so miserable. They were able to identify that she has a viral respiratory infection, which led to the ear infections which is all causing the fevers. But she had a complete course of oral antibiotics before we got here and then has had three days of IV antibiotcs. And the viral infection usually runs its course in 7-10 days, with 2-3 days of a fever. She is going on three weeks of this and 10 days of fever.

Because of the suspected metabolic disorder in the family, they ran extra tests. One came back showing a possible deficiency that was thought to be one Dominic and Bridget may have had. We had already talked with the specialists about this while I was pregnant with her and how we would need to test her after she was born. They had tested her before, but had not thought it was a problem then. So now they are working with the specialists to sort things out. I was told they'll have all the information in the morning.

They've decided to put her on a feeding tube, but after several attempts couldn't get it down - her passages just too tight. They will do it in the morning using radiology to guide it down. They also have more tests to do in the morning. And in the meantime it's IV fluids and tylenol combined with motrin to keep her fever down.

All of it has my heart and mind so troubled. The news reports of a child life flighted here yesterday but who has now died. A code blue was just called. I know too well what it is like to be in that crisis. And in some ways, it makes my mind feel it is also a part of this crisis. But I tell myself I am holding my little one, who is gratefully healthy enough to be sick. Which is a positive way of saying she isn't dead. Or even dying. But then that last sentence was what they thought with Dominic and Bridget before things changed so quickly. And when you see how sick Sarai is, you know you are already closer to there than Dominic and Bridget had seemed to be.

I struggle and try to cope through all of this. I just feel so troubled. I'm worried and so I am glad for the medical help, but I'd so much like to be home in my own bed with all of my children well. And I mean all of my children. But I know it cannot be. And now there are even more of those unanswered questions to trouble my mind.

Let not your heart be troubled: ye believe in God, believe also in me.

Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid.
John 14: 1, 27

Celebrate

One year ago today. Here's Sarai's first picture outside the womb.

She wasn't due until the last week of July, but she came early weighing 4lb. 2oz. She could have come a week earlier when I had placental abruption and pre-term labor. We were lucky to get the two doses of steroid shots and hold things off until she was a little more ready.

I was actually able to hold her shortly after her arrival. She breathed room air from the beginning and mostly stayed at the hospital for feeding and growing.


I had a little trouble with bleeding after delivery, so her daddy followed her down to the NICU where they could watch her closely. We got things under control and I was able to join them not too long after. With Dominic and Bridget's cause(s) of death still unknown, and the concern that there is a potential underlying genetic issue, combined with her prematurity we were very cautious.
It had been less than nine months since I had held my baby Bridget in my arms. Just over nine months since the last time I had nursed her. And that last time is when everything went bad. Since Dominic also had his crisis event with nursing, I was very overwhelmed with finding a way to be true to my philosophical conviction that breastfeeding is best, and my psychological association of the two crisis events.

There was so much about it all, about another premature baby girl so soon after Bridget was born premature. So soon after Bridget's death. Being in the hospital again for a week before Sarai's arrival with all the uncertainty and the risks, and not being naive enough to think those risks only happen to other people. There has just been so many things mixed into it all, and yet here we are. A year later. And we have so much to celebrate!

Sarai has been so sweet. She's been through a lot. Scared us a lot. We've been able to share so much together in this year. There are just things that people take for granted. First birthdays aren't one of those here.

Nursing isn't either. Today I am celebrating that I was able to breastfeed the entire year. Sometimes I had to pump and use bottles-- I pumped on every single day for the first eleven months, and in the early months was pumping every three hours or more around the clock-- but I feel it a real achievement that we made it a full year. It isn't an easy accomplishment even without the psychological trauma I endured. It isn't an easy accomplishment even if you don't consider her prematurity, or her episodes that made her unable to nurse effectively on some days or during some feedings. But we did it!

I feel it was a gift for Sarai to do that for her. To those who don't share my philosophical convictions, I'm not sharing this to discount your preferences. It is just a real gift for us. The even greater gift, though was given to us by Sarai and by the powers of the Universe. That gave us the chance to share this whole year together. We hope for decades more. It is, afterall, her middle name: Hope.

Face

I recently learned about a little girl who is struggling with her health. There are so many children out there right now with health complications. What makes this little girl stand out to me is that they don't know why. They don't have a name for what is causing her difficulties. They don't have a diagnosis. And her family desperately wants answers. That is a feeling I face every day.

So underneath the pictures of Dominic and Bridget, I've added the face of Maggie Agnew. I don't know that it can make any difference for them. But if you have some way of reaching out to them, some way of giving them the hope that I can't have for Dominic and Bridget, please give them your encouragement.

This life is so full of challenges. Each of us suffer and struggle in such unique ways. Sometimes we can connect in ways because our experiences are familiar, but none are ever the same. We face such different trials and we each have to find our own way through. Find a way to cope.

Recently, I thought I would sign up on Facebook. I thought perhaps it would be a tool to connect to people who had been in my life before, but after Bridget's death seemed so distant. I thought maybe it was something about me not keeping up with the times or not being accessible that made people disappear. Maybe this would be a way to reconnect.

I've been so disappointed. I scrolled down through the past on the walls of people who claimed to have cared. Who said they loved me. I see things posted while we were at the hospital with Bridget, watching her die. And the things they wrote then and how difficult my life was, and yet how carelessly their life went on. They put on one face of sadness for me, but then another face to the rest of the world. I see family members who told me that they didn't have a facebook account, who have actually been on for a couple of years. I see people taking my story for their drama, and at the same time abandoning our family completely.

No one can understand what we have faced in our lives. No one knows what we are facing now. I look into the faces of my children every single day and I wonder if it will be the last day I have to spend with them. I watch my baby in her episodes and wonder if it is still okay, like it has been through these months, or if there is death waiting to show his face again.

It is so difficult to face these things without answers. Without a name. Without knowing why Bridget and Dominic died, we are left to imagine all kinds of causes, and others have room to speculate. Grief itself is enough to weigh the heart. Twice I have had to look one last time at the face of my little one before closing the casket, and must wait to see them again in the eternities. Yet the weight of the grief is only part of what we face in these experiences. And no one understands these complexities. Not even I can understand it.

So much to take in. To process. And we carry on to face another day. Each day a gift.