Honoring Her with Honesty

Today marks one month since we lost Hailey. Acknowledging those words out loud feels like I am sending a knife through my heart: there is a gaping and raw ache in the center of my chest.

Despite my conscious decision to stay positive in this blog and to celebrate my short time with Hailey, I think today I need to pay respect to her journey with some honesty...not about my suffering, but hers. It is my hope that in sharing the following, which up until now I have fiercely guarded, it may open some peoples' eyes.

These days, it feels like politics are more contentious than ever. I don't really read many of the articles people post because I'm either unsure of the credibility of the news source and/or the person has made their political agenda clear and I know what they post will only serve to further their own decided narrative. So I have wondered how we get back to being able to have honest discussions with each other...ones where we really listen with open hearts and open minds. And I think part of the answer is to just be open and honest and raw, not about our political beliefs but the personal experiences we've lived. Because as the saying goes, "walk a mile in MY shoes....". It is really easy to hold on to black and white views when the life you've led has been black and white...but there are shades of gray out there that must be considered.

And so, I am going to share the most painful details of my journey with Hailey today. I am very tempted to make a political argument, but I promise I won't. I will simply share, and let your heart guide you however it may.

The easiest way to explain Hailey's short life is to compare it to an episode of the TV show, House. When we first presented at the hospital, it was for a common virus...but Hailey quickly showed she was having a very atypical reaction to that virus. Thus began a journey through seeing doctors from every specialty at the hospital while they tried to figure out what was causing our daughter's suffering.

Hailey was stuck by needles almost every day of her life for blood work. Her veins were so small and thin, they'd often have to bring special machines up to help the nurses find them. She had IVs, central lines etc. placed multiple times...whether in her hands, feet, armpit or head. She had multiple spinal taps. Esophageal and rectal biopsies. There were nights when both my husband and I sat up all night holding our daughter because she was crying from hunger but we couldn't feed her. She had feeding tubes and drainage tubes. Her nose had to be suctioned out so often, it would bleed. She had countless Xrays, echocardiograms and EKGs. Hailey couldn't eat for weeks because whatever was going on inside of her caused her to rapidly dehydrate and poop out gushes of what looked like green water. Her diapers would be utterly soaked with it. In one night, she dropped from about 7.5 lbs to 5 lbs 13 oz. She was so emaciated, you could see every bone in her body. Her hip bones stuck out her back like a stray cat's. I've never been so terrified in my life. And at the very end of our road, she was intubated for oxygen and it was clear she was suffering.

I want you to know that I am SOBBING as I write all of this. This is a summary of the most painful part of every day and night we spent together...the parts that haunt me and break my heart and make me question WHY.

Beyond the physical suffering, I want to talk to you about the different diagnoses they considered for Hailey. When I was pregnant with her, I didn't bother with genetic testing. We'd already had a son who was born healthy and I knew that even if the baby had Downs (which is one of the major things I knew those tests looked for), we would still keep her. And not to say that genetic testing would have caught any of what happened with Hailey, because I don't' believe it would have. I say all of this to explain that there are harder roads out there than any you may have previously considered...and there are people out there, right at this very moment, walking them.

Because of Hailey's extreme reaction to a common illness, the doctors questioned her immune system. They thought it might be compromised...that she might have something akin to "the boy who lived in a bubble." If you've never heard of him, he basically lacked an immune system to the extent that if he ever got sick, he would die. Can you imagine if Hailey had been diagnosed with that? Any time my husband, son or I got sick, we would have to worry about being responsible for causing Hailey's death.

At another turn in our journey, the doctors considered whether Hailey's intestinal tract was damaged to the extent that her body could not process food, and that is why she was pooping out everything they tried to feed her in puddles of watery bile. Now, they can keep a child alive on liquid nutrition that bypasses the digestive tract and goes straight to the blood vessels, but over time it kills the liver. So if Hailey had received THAT diagnosis, I would have had to watch her like a hawk for her entire life to make sure she never put anything in her mouth. Can you imagine a life of never being able to put any food or drink in your mouth? Can you imagine your child living under those conditions until their liver began to fail...so you would have to explain to them at an age when they were old enough to understand...why they couldn't have the life other children have, and why they were going to Heaven soon? These are the thoughts and concerns that haunted my days and nights.

Now, let me tell you about all of Hailey's symptoms that were discovered while we worked through all of these medical hypotheses. As I've mentioned before, in the end, Hailey was diagnosed with an extremely rare and terminal, multisystem genetic disorder. She was missing the middle part of her brain: the corpus callosum. She was born with a small optic nerve and cataracts. Her immune system was able to mount a slow recovery to her initial illness, but it was clear it wasn't functioning normally. Same thing for her GI tract. She had a very high arched palate and difficulty swallowing. She never developed a social smile and many of her movements were stiff. It was expected that she would begin to lose her hearing, never be able to hold her head up on her own, talk or walk.

Our beautiful, sweet baby girl had no chance at the life we envisioned for her. Just the other day, my husband got choked up looking at her death certificate (which he had to provide to the Army) because there was a box on it to check if the deceased had been married. My husband had been lovingly dreading being a mess some day in the future when he would give our daughter's hand away in marriage. But it wasn't to be.

So last of all, I want to share the heartbreaking truth of Hailey's passing. It was a choice. Mine and my husband's. Now, if I hadn't brought Hailey to the hospital when I did back in October, she would have been taken by her illness many times over. But modern medicine is amazing for what it can do...which brings some people to a question of quantity of life versus quality.

Maybe my husband and I erred in always trying to stay positive when we provided people updates about Hailey. We were careful not to share photos of her that would scare people. So maybe it was our fault people were as surprised as they were when they came to see her and witnessed the state she was in. Maybe it was my fault that when I called one of my best friend's to let her know of our decision to let Hailey go, she railed against me. She lamented that I couldn't...that it was permanent...that I could never take it back...that I'd never forgive myself. That I could do this,  I'd gotten through tougher, and I could DO life with Hailey. As if I were letting her go simply to spare myself from life with a less-than-perfectly-healthy child. Nothing could be further from the truth. Letting Hailey go was the SINGLE most painful thing I have ever had to do in my ENTIRE life. I didn't let her go for ME. I let her go for HER.

My husband and I tried to make the best of two AWFUL choices. On the morning of December 19, the hospital called to let us know Hailey's lung had collapsed and they were intubating her. I asked if she was dying and they told me they'd have to see how she did over the next couple of hours. My husband and I raced to her bedside. She'd had some heart difficulties at birth, but we'd thought they'd resolved and up until that day, all of the hospital testing had maintained that to be true. But by that morning, her heart was massively failing and blood was backing up into her lung, causing it to collapse.

Hailey did okay on the intubation...it was clear she was uncomfortable and she continued to have fluid on her lungs...but her oxygen saturation and breathing rate stabilized. I cried when I found out the tube went down in between her vocal cords and we therefore wouldn't be able to hear her voice coo again. I cried when the sedative Hailey was on would start to wear off and her eyes would fly open and I could clear as day see the terror and panic in them. She didn't understand what was happening to her.

We maintained Hailey's life in this state for a week while we waited to see if she would improve. On December 23, the doctors met with us to inform us of our options. While my husband and I had given samples of our blood back before Thanksgiving to confirm whether or not Hailey did have the terminal genetic disorder they suspected, the testing took months to complete and we still didn't have answers. So we put all of her other symptoms aside and focused on what was killing her at that point: her failing heart. I didn't think the doctors would even be willing to try surgery on Hailey, but they were. They just weren't optimistic about the outcome. There was a chance she could die on the operating table, and even if she survived the surgery, they really didn't think she'd survive the recovery. They wouldn't even give us odds. Multiple things had gone haywire in her heart. (I refuse to EVER say anything went wrong with Hailey because she is my daughter and she will always be perfect to me). There weren't just nearly-impossible to fix structural issues...the heart muscle had weakened to the extent that they didn't believe it would be able to beat enough to sustain her life after surgery. The cardiologist told us she'd never witnessed a heart go bad as quickly as Hailey's had in a child so young. But it made sense if you look at the genetic disorder they thought she had. All of the babies that had it died of heart failure.

On Christmas Eve, my husband and I faced the hardest question of our lives: whether or not to risk the heart surgery, or to let Hailey go. The hardest part of it all, for me, was that prior to her heart failing, Hailey had been doing the best she'd ever done in the hospital since our admission in October. My husband and I had believed we might actually be able to bring her home by Christmas...her GI and immune systems had recovered, she'd been eating and was about to crack ten pounds in weight - the most she'd ever weighed. The second hardest part was having to make this life or death decision for our child without benefit of the genetic results.

My husband and I came to realize that whether or not our daughter did have the disorder they suspected, something genetic had happened with her on a catastrophic level: to not be able to see much of anything, to lose her hearing, to never be able to walk, talk, or smile, to have a compromised immune system and feeding and digestive difficulties, to be missing part of her brain...And the doctors had been very honest with us about what the surgery would entail...it would have been traumatic and painful for Hailey and if she survived the surgery but not the recovery, she would have been stuck on a painful machine that would circulate her blood for her until she likely passed in another way. Despite all of that, if it had just been her heart, we probably still would have risked the surgery. But looking at the total picture, and setting our own suffering aside, we realized we couldn't watch our daughter suffer anymore.

As I said before, if modern medicine weren't as amazing as it is, God would have already taken Hailey to Heaven many times over. And I wondered if, in Hailey's heart failing as dramatically as it did, both He and she weren't trying to teach us to listen. To put aside the screaming voice of our own agony and listen to and trust them. Now let me tell you something miraculous.

In the course of Hailey's stay in the hospital, there were two hymns I would play that almost always seemed to bring her comfort: How Great Thou Art and His Eye is On the Sparrow, which I've never heard sung in church, but learned as a kid from the movie Sister Act 2. On the evening of December 26, my husband and I sat in the empty and silent hospital cafeteria, which is styled like a 1950s diner. We were picking at our dinner while still discussing what was best for Hailey. And as I began to voice to my husband the sentiment I expressed above about listening to what God and Hailey might be trying to tell us...I started hearing musical notes that sounded vaguely familiar. I finished speaking and shut my mouth to better listen. And then I stared, agape, at my husband to see if he heard it too. From somewhere - I have no idea where it could have been as there was no logical explanation - His Eye Is On the Sparrow was playing. The Sister Act version. The very same one I always played with Hailey. My husband heard it too, and then we just knew.

We waited a few days to make sure we were ready. We invited all of our family and friends - anyone who wanted to - to come be with Hailey, and with us. On December 30, we baptized her in the hospital chapel and shortly thereafter, we set her free. The hospital staff told us it was the most painless and beautiful passing they'd ever seen.

We removed Hailey's breathing tube and all of our prayers were answered. My son got to hold her one last time.

I was able to cradle Hailey in my arms, with my husband's arms around us, both of us giving her all the comfort we had to offer. She let us hear her voice one last time as she sighed ever so softly and her soul was released. We were there. We FELT it. She suffered no more.

I didn't mourn the first week Hailey was gone. I held up surprisingly well. Because even though we chose to let our daughter go, and despite what some people may think, I held true to the mother's creed. I was willing to give my life for hers. My thoughts were always for her above anything else. And so as we buried her, all I could feel was relief that God had taken her home. That He was giving her something I couldn't give her on Earth: peace.

And, the day after we laid Hailey to rest, we received the results of the genetic testing. Hailey did, in fact, have the incredibly rare genetic disorder they had suspected. The official prognosis was 6 months to 3 years. We'd heard of one child who'd lived to eight. But if not for medical intervention, Hailey could have died at any time between 6 weeks and when we let her go, one week shy of her four month birthday. She inherited defective genes from both Jordan and I. Any pregnancy we have, the baby stands a 25% chance of also having this genetic syndrome. Our healthy son falls into the 75% chance of being completely fine.

If we get pregnant again, we may lose the baby one way or another. Whether we choose to do the genetic testing at ten weeks and decide to spare another baby what we watched Hailey go through...or whether we give birth to the baby and support him or her through their short life. It is a conversation for a different day. I just pray every night God doesn't ever ask me to have to make that decision. The decision we made for Hailey was hard enough.

So, I know everyone's story is different. This is ours. I just want you to know it and consider it. And to understand that it is hard to know what you would truly do until you are faced with such an awful situation. I pray, pray, pray that you never are. I pray that you don't have to be in order to exhibit understanding or at least compassion.

And I know my pain is still fresh and raw, but please know that sometimes when you post blanket statements or articles about "murdered babies" and abortions, you are causing someone who is already in an immense amount of pain, even more pain.

This blog --- outside of today's post --- is a positive blog because I WANT it to be. I FIGHT for it to be. Because that is how I want to cherish my time with her.

But today, I needed to stick up for both of us. As much as Hailey taught me, she had to suffer to do so. I don't understand it, but I'm not meant to. I trust.

If you think for one moment that I am not suffering the depths of a mother's grief, you are wrong, wrong, WRONG.

But please know this. My grief is my own because of what I have lost, but I do NOT for ONE SECOND, regret the decision I made for Hailey and what she has gained. We both know God's eye is on the sparrow, and she will always be MY little sparrow.

From "His Eye Is On the Sparrow"

Why should I feel discouraged

Why should the shadows come

Why should my heart feel lonely

And long for heaven and home

When Jesus is my portion

A constant friend is he

His eye is on the sparrow

And I know he watches over me

His eye is on the sparrow

And I know he watches me