The background – Our story, our loss

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Otherwise known as: Why I’m a neurotic mess and feel the need to journal this pregnancy to keep my sanity.

To understand, you must know our entire story – so buckle in, it’s not pretty, but it’s real…

Back up to February 2010 – I got an unexpected positive pregnancy test. We were not planning to have more children, and were actively avoiding .. yet it happened. It was a bit of a crisis at first, my husband Jeremy did not want more children and had what I can honestly describe as an adult tantrum. Not pretty, but we worked through it.

As my pregnancy progressed, Jeremy became more and more excited. So did I – we loved this little baby and could not wait for a new member of our family. Our only child, who was 7 at the time was beyond excited for a sibling and from the very beginning would speak to my belly and talk to his growing brother or sister. I was thrilled to be pregnant again and made sure to take excellent care of myself – I special ordered high quality, real food vitamins, practiced yoga 3-4x a week and ate a very healthy, organic diet of mostly local foods.

Our 19 week anatomy scan came .. we were so excited that we had our son, Alex, and both of my parents there with us. As soon as the tech put the wand on my little belly she asked “Do you want to know the sex?” .. and she didn’t have to tell me, there was an obvious little penis in the center of the screen. We both cried .. another boy!! He was moving around like crazy, so much so the ultrasound tech asked me if I’d had caffeine that morning … we all laughed about how much trouble we were in for with this little boy. The ultrasound went beautifully, he was healthy and growing just as he was supposed to.

The rest of my pregnancy was pretty uneventful – I stayed healthy and started planning a natural birth. I had a c-section with Alex and was planning a natural VBAC (vaginal birth after cesarean) for this baby. I hired a Doula, took Hypnobabies childbirth classes and felt very prepared. We decided on a name … Gavin Connor, and we were just awaiting his arrival.

At 32 weeks my OBGYN wanted to do a quick ultrasound to check growth – we agreed, we knew Gavin was a good size, but honestly just wanted another peek at our baby! At that ultrasound, the tech spent a very long time looking at his head. When we met with the Dr., he said one of Gavin’s brain ventricles looked a bit “odd” and he thought we needed to see a specialist. He said not to worry, everything was probably fine, this was just to be safe.

Trying not to worry when you get news like that is impossible. We spent 2 weeks waiting for our Perinatologist appointment, and looking up everything we could about enlarged ventricles.  Jeremy even called into a local radio station that has a Dr on air some days, and talked with him about it … everyone agreed, worst case was probably hydrocephalus and might require a shunt a birth to drain extra fluid.

At 34 weeks our Perinatologist appointment finally came — they did a detailed ultrasound of Gavin’s head and determined he was perfectly fine. Large head, big baby, no problems. We held each other and cried tears of pure relief .. Gavin was ok.

I went into labor at exactly 37 weeks .. after a dinner at California Pizza Kitchen my contractions got stronger and stronger. They continued into the night and around 3am we called my Mom to drive over to watch Alex so we could head into the hospital.  I wont go into the long, long, intense experience that was my labor .. I will sum it up by saying Gavin’s head was much larger than anyone expected and he was positioned very poorly. That made for horrible back labor … thank goodness for my wonderful Doula and husband who both supported me so well.  Everyone in that hospital supported my plan for a natural birth and honestly did everything in their power to help that happen – but it was not in the cards. Gavin’s head was much too large, and after being stuck in transition at 9cm for hours, a c-section was necessary.  Looking back, we now know Gavin probably would not have survived the stress of  a vaginal birth, and a section was necessary for both of us.

When Gavin was born, he did not cry. After working on him for a few minutes he did start to cry and breathe, only to quit again a few mins later. They placed him in the NICU and put him on cpap. I was dying to see him, so just a few hours after my section, I got up, showered and had Jeremy wheel me down to the NICU. The nurses were shocked and kept saying, “Didn’t you JUST have a c-section?!” .. yes, I did and I want to be with my child!!!

Gavin looked so pitiful – IVs and wires everywhere, even a line coming out of his umbilical cord stump. But when I spoke to him, he turned his head and obviously recognized my voice. He looked just like Jeremy, even down to his long, thin feet.

One of the doctors came in, and asked to speak with us where we could have more privacy … I will never, ever forget the feel of that cold, empty hospital waiting room where we went to talk. Where that doctor told us something was wrong with Gavin’s brain, and he needed to be transferred to a more advanced hospital where they would figure it all out … he said a transport ambulance was on the way. Jeremy and I didn’t just cry, we sobbed.  We clung to each other – scared and so very upset.

This is NOT how it is supposed to happen when you have a baby! What about the joy? The celebration? Nursing, cuddling … happy times? No, this was wrong .. so, so very wrong. And it hurt to the core, we were terrified about what might be wrong with Gavin, the baby we wanted so badly and already loved with all of our hearts.

Because I was in such good condition after my c-section (thank you, adrenaline!) … the hospital agreed to release me less than 24 hours after my section so that I could go be with Gavin. I will be forever thankful to them for that – I can’t imagine being stuck in a different hospital, so far away from him.

So Gavin was transferred to UAB’s NICU within 24 hours of his birth, and my c-section. He was breathing with the aid of c-pap and it was their job to figure out what was going on with his head, heart, and also an abnormal kidney ultrasound. We visited him that night in the NICU, met the Dr’s and came back home late to get some rest. The next day we spent up there with Gavin, and just as we went home for the night, a dr called us and asked if we would like to come in and review some of the CT scans of Gavin’s head.

No one said lissencephaly at first – in fact, I don’t think someone actually said that word to me until his second hospital admission. But this first night, they told us something was very wrong with Gavin’s brain, it was “a bit smoother” than it should be, with calcifications in the midline around one of his ventricles. They called this a neuronal migrational disorder, said they could not tell us a prognosis – but that they guessed that I had caught an infection during my pregnancy that caused this. Gavin’s retinas were also damaged, which can be a sign of infection. So Gavin was given a spinal tap to remove fluid and test for CMV, Toxo, and several other viruses that can cause this.  All were negative. His heart murmor healed on it’s own, kidney function was fine even though one was enlarged, and within a few days he was able to wean off the cpap and breathe room air.

Here are a few pictures of us holding him at UAB

I was pumping milk for him, and after a few days, I was able to bottlefeed him my milk instead of him being fed with an ng tube. He was not a good eater – in fact, he would NOT eat for the nurses, but he ate like a champ for me. One evening Gavin had what appeared to be a seizure – he was given meds and an EEG was ordered. My poor baby – he was hooked up to the EEG for well over 48 hours – it was supposed to be only 24, but his EEG was so abnormal they kept him on it much longer. The electrodes got hot and burned his sensitive little skin on his head. It broke my heart – and after all that all they could tell me was that his brain was very chaotic and he was having frequent seizure activity.

But he was able to eat well for me, so after a total of nearly 2 weeks in the NICU, they allowed us to take Gavin home with lots of follow up.  It was such a neat feeling to finally have our baby home with us, even if it was on lots of meds, and even if we were worried about his future.

The day after I brought him home – I started noticing odd activity. He would wake up and do this repetitive cry over and over and kind of bring his hands in and legs up over and over along with it.  He would also do this odd staring off to the side thing, and it was obvious he couldn’t control it. The peditrician said to watch it closely and contact neurology if it got worse .. well it didn’t take long for it to get much worse, with the episodes lasting longer and longer – he would be so tired after one that he would sleep for hours, and he was not eating as much as he was supposed to. Forget trying to nurse, just getting him to take my milk in a bottle was a challenge.

So at a followup appointment, the Dr’s suggested he be admitted back into the hospital – this time Children’s Hospital NICU to try and figure out his seizures, get him eating better, etc.  He was having near constant seizures anytime he was awake, they would make him so frustrated and he would scream and cry like he was being shocked over and over again.

I stayed with Gavin everytime the NICU was open. I was there holding him, watching over him. I would drop Alex off at school, go straight to the NICU, stay until pickup time (which was also when they closed for shift change) go back and meet my husband up there in the evening, then stay until shift change again at night.  Repeat the next day.  Gavin loved to be held and rocked by me. He loved hearing me talk to him, hold him. I loved that this sweet angel was at least comforted by his Mom .. and when I went home at night to sleep without him, I felt like a huge piece of me was missiing. All I could think about was getting back to him the next morning.

Gavin had another EEG that was hugely abnormal, an MRI that showed lissencephaly, retina damage – more tests, another spinal and still no clue what caused this. Most dr’s still said infection, some were guessing something genetic, although most tests had come back negative. Tests were sent off to speciality labs across the country – some of which we are still waiting on to come back.  Gavin’s seizures were diagnosed as Infantile Spasms which is one of the most devastating types of seizures – treatment required a 12 week process of injecting him with a NASTY drug called ACTH, a very strong steriod and that still only had about a 50% chance of stopping them, yet had horrible side effects. Plus it was EXPENSIVE – nearly $30,000 a vile and his treatment would require 3 viles … thank goodness our insurance covered the drug. Still, the seizures were so bad, it was worth the risk. They had him on 3 different seizure meds, plus the ACTH – I learned how to inject him and once he was eating well again, they sent us home.

Once home, it was hard. Gavin was having seizures almost anytime he was awake. His quality of life was terrible. The ACTH make him put on a ton of weight, made him feel terrible and our super sweet baby turned into a grumpy guy that fussed non-stop. If he wasn’t fussing, he was having a seizure. They started getting really bad – he would have hour long episodes that broke my heart. I would rock him, hold him and cry – no parent should have to watch their baby suffer like that.

Here is a picture of Gavin when he was home for a bit – he was home long enough to watch the Iron Bowl with family and friends…

They got so bad, after being home for about 2 weeks, I had him admitted back into Children’s to try and get the seizures under control.  But within a day or two of being there, he started having great trouble breathing, then started putting on tons of fluid and everything went out of whack. They could not figure out what exactly was wrong with him – his thyroid was abnormal, he was not making billrubin like he should and he was not getting rid of fluid in his body. He puffed up to a huge size and no amount of lassix would take the fluid off of him. He was on full oxygen and they said he might have to be put on cpap or ventalation.

This is when my husband and I had to make the hardest decision of our lives. We looked at Gavin’s quality of life – what it had been so far, and what the future held for him. And we made the difficult choice to NOT extend his life if it was his time to go. We brought in palliative care, and they helped us make Gavin comfortable with morphine and drugs to help him sleep so he would not be having constant seizures. His breathing was getting worse, and the dr’s told us that is what would take him if we chose not to ventilate.  They also said chances were if he went on a vent, he would not come back off.

Here is Gavin with Jeremy – swollen and so uncomfortable .. this picture really speaks to me. You can see the pain on Jeremy’s face. No parent should have to watch their child suffer like that.

We chose to move to a room where we could be with him 24/7 – we moved into the private room on a Friday and he died in our arms on Sunday morning – December 19, 2010. He was comfortable, and while my husband and I held him and cried, we told him it was ok to go. That he would be in heaven, whole, healthy and seizure free. We sobbed and held eachother while he watched Gavin take his last breaths. I can’t describe the pain … even though we knew we were doing the right thing for Gavin, for our own selfish reasons, it was so so hard.

Leaving the hospital is a blur – but I clearly remember the pain of leaving with one of those Children’s Hospital wagons full of his things .. but no child. He had just died in our arms hours before. Jeremy and I came home – our entire family was there in the living room. But we just went to bed, laid down, held onto each other and cried for what seemed like hours.

Gavin’s funeral was December 23, 2010 … the outpouring of love and support from family and friends was amazing. It still brings me to tears thinking of how many people dropped all of their plans, just before Christmas – to be there for us.

So that’s our story .. sad, I know. But we are here, we are still alive .. and yes, we have happy days. Gavin will forever be such a HUGE part of us. Jeremy, Alex and I are forever changed by what we have been through .. but it has not defeated us.

I will share another time an intimate blog I wrote about healing.

So if you made it through our story, thank you. Now you can understand why I’m trying to NOT be a neurotic wreck .. but sitting here staring at a very positive pregnancy test has my mind spinning.

Look forward to sharing this journey with you – our journey to a rainbow baby after loss. Thank you for joining me.

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5 responses »

  1. Love as always, Candace. We all miss Gavin, even those of us who never had the honour of meeting him, sweet little boy ❤

    Holding you in my thoughts and heart, as always, through this next chapter! 🙂

  2. Tears in my eyes….
    You two are the most wonderful parents and made such an unselfish decision for Gavin.

    Thank you for sharing.

  3. My daughter is diagnosed with lissencephaly. Your story truely touched my heart. I have had a journal since she was diagonosed when she was 4 months. She turned 5 in September, Everyday is a gift. We realize that some day God will take her home. However, we try to live one day at a time.
    God bless you and your family, and thank you for sharing.

    Brandi Reazin

  4. Dear Candace, thanks for sharing your joy and loss. I’m so sorry you could not have Gavin longer. We also have a son with microcephaly and lissencephaly. We are in the excruciating decision of whether to pursue a trach or palliative care. Our son Calvin is three, these choices are SO hard.

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