Daniel’s Story

This is the story of Daniel Hamish Deitchman. I so wish I weren’t writing this story, or that it was a totally different kind of story. Daniel deserved a long and happy life, not the abbreviated one fraught with worry and grief that I’m about to share.

To quote T.S. Eliot, “What we call the beginning is often the end. And to make an end is to make a beginning. The end is where we start from.”. This story starts where another ended. After living in California for just over 12 years, and having been an ultra cyclist for about 10 of those years, I knew I was finally ready to move on to the next stage of my life. I was ready to leave behind the days of riding my bike hundreds upon thousands of miles towards a racing goal, and instead work towards the goal of starting a family. Cycling had defined me for many years though, so I knew that the transition would not be easy. That partly lead to the decision to make another big change – the decision to move to Colorado. If we were going to start a family, we wanted to live somewhere that was less crowded, closer to the great outdoors, more affordable, and had a more family friendly atmosphere. Additionally, I felt that moving out of state would help me break free of the routines that were so ingrained within me – if I was in new surroundings, it might be easier to leave cycling behind. It was to be a “reset” on life and priorities. On August 29th, 2015, two months after finishing my 3rd solo Race Across America (RAAM), we packed up and headed east to Colorado. It was an end, but also a beginning.

We settled into Colorado life very quickly, and within only a few weeks I felt more at home in Boulder than I’d felt anywhere else in my life. Everything seemed to be working out according to plan, especially when on November 13th, 2015 I took a pregnancy test and saw those 2 life changing lines. I was immediately terrified but over the moon at the same time. All those years of ultra cycling and putting off starting a family had lead to some nagging doubts in my head. Had I waited too long? What if I couldn’t get pregnant or it took a long time and the clock ran out? I was already 35, so certainly while I wasn’t “too old” yet, I felt as if I was uncomfortably close to an important deadline. Those 2 lines on the pregnancy test were such a welcome relief – I hadn’t waited too long, and things were going to work out just fine!

On December 1st, 2015, we had our first ultrasound and got to see “Gizmo”. We’d started calling it Gizmo after I’d mentioned to Mike that we were going to get to see the little Gremlin at the ultrasound. During the ultrasound everything looked good, and we heard the heartbeat, clocking in at 133bpm. Based on size, the estimated due date was a week later than we’d originally calculated based on the start of my last menstral cycle, but I’d also had a longer than usual cycle the previous cycle, so we didn’t really think anything of it. In hindsight, this was perhaps a clue that maybe everything wasn’t ok.

Gizmo

We left the appointment feeling so happy, and already thinking ahead to July 21st when we’d get to meet Gizmo. We also started thinking about when and how we were going to announce Gizmo to the world, deciding that we’d wait until early in the new year after the cell-free fetal DNA tests had been completed, just to make sure that everything was still ok. Plus we’d know the gender by then too. I set about Googling creative ways to announce a pregnancy, and started shopping for Dad themed Christmas gifts for Mike. We also started talking about getting a dog – I knew that Mike kind of wanted a dog, and I figured if we were going to get one we needed to get one now so that we had time to get it trained and settled in before Gizmo’s arrival. Two days before Christmas we brought home a 6 month old black lab mix puppy that we got at the Boulder Humane Society who we named Kona. Everything was falling into place – we couldn’t be happier. Little did we know that amidst all of this happiness, the cards were already in play to cause our world to crumble around us.

Picking up Kona at the Boulder Humane Society

On December 28th I rushed home from work early so that we could go to our 10 week checkup. We were looking forward to seeing Gizmo again, and getting the blood work done to find out gender. We excitedly told the doctor that we’d just got a puppy, and that everything was going great. Had I had any spotting or bleeding? No. Was I feeling ok? Yes. Anything out of the ordinary? Not that I’d noticed. She first attempted to do an external ultrasound, warning us first that it might be too early to detect the heartbeat from outside, but that we’d start there. She couldn’t detect the heartbeat with the external ultrasound, so then she did the vaginal ultrasound. I was a bit nervous, but then I heard her say something to the effect of “there it is!”. My worry hadn’t even finished draining from my body though when she corrected herself and said “wait….I’m so sorry, there’s no heartbeat”. She proceeded to double and triple check as I lay there in shock. How could this be? What was happening? I’d not even realized that you could have a miscarriage and not know about it. I was supposed to be 10 weeks along, but the fetus was only measuring about 8.5 weeks, so I’d been carrying around a dead fetus for over a week. When we’d happily chosen Kona to come home with us, Gizmo was already dead. When Mike opened the Christmas present from Gizmo which was a book about becoming a Dad, Gizmo was already dead. When I’d shared the news of my pregnancy with a friend a week and a half earlier, Gizmo was possibly already dead. Our baby was dead just as his or her life was beginning.

I was booked in to have a D&C procedure 2 days later to remove Gizmo since my body had not detected that the pregnancy had ended and so hadn’t expelled it. Those 2 days of waiting were awful – walking around knowing that I had a dead fetus inside of me. I began questioning everything I’d done while pregnant and trying to understand why this had happened. The doctor said that there wasn’t anything that I’d done that would have caused this, and that it just sometimes happens. She assured me that most women go on to have a successful pregnancy after a miscarriage. Going in for the D&C was incredibly difficult. We had to go to the labor and delivery area of the hospital for the surgery, and everything about it just felt so wrong. This was where life was supposed to begin, not be removed because it had ended. The nurse, Jackie, was very supportive and empathetic, and when I was finally released and she was wheeling me downstairs for Mike to pick me up, she said that she had no doubt that a year from now I’d be back here giving birth to a healthy baby. I clung to that idea as if my life depended on it.

The next several weeks were really difficult. We went to a New Year’s Eve party the next night at some friends’ house, and there were some infants there – each time I looked at them I saw what had been taken away from us. I went back to work the next week, kind of in a haze, worrying that people would notice and ask what was wrong (only my boss knew what had happened). At first it felt so lonely – like I was the only one whom this had happened to. I remembered a friend who I’d not actually ever met in person who’d been open about sharing about her experiences with miscarriage on Facebook, so I reached out to her. Slowly I told a few more people, and was surprised to find out how many others had experienced the same thing. If this was so common, why had I never heard about it? Sure, I knew that my mom had had several miscarriages, but I’d not heard others talk about it. Therein lies the great irony regarding not announcing a pregnancy early – you don’t announce a pregnancy early because there’s a chance that this may happen and you perhaps fear being judged or pitied, but by not telling anyone and not talking about it, you isolate yourself and thus the pain is so much harder to cope with. If there’s only one thing that people take away from my story, it is that we need to be more open about talking about pregnancy and infant loss.

We decided to start trying to get pregnant again as soon as we were allowed to (after my first cycle following the D&C). I felt like we’d lost a bunch of time, and so in a way there was now a sense of urgency to it. I started Googling more about miscarriage to find out as much as I could about it, as well as to find out how I could try to improve my odds of getting pregnant again quickly (the first time around there’d been no real planning to it). I found a plan that seemed to be promising, and so set about following it. I also vowed to cut out caffeine from my diet even though my doctor had said that it was ok in moderate amounts. I figured if I had been able to give up caffeine for a year and a half while training for RAAM, then I could do it again for this – why take the risk.

When my first cycle completed and I didn’t get pregnant, it was very disappointing. I’d convinced myself that I had some of the same symptoms as I’d had the previous time, so my hopes were dashed when I took a pregnancy test and there was only one line. The next month I tried not to get my hopes up, and in fact hadn’t really noticed anything different about how I was feeling, so figured that I wasn’t pregnant. On March 25th, 5 days after our 6th wedding anniversary, I took another pregnancy test. I tried to not have any expectations so that I wouldn’t be disappointed – but then I got a positive test! Just as there’d been relief with the 1st positive test, I once again felt relief – relief that we were back on track, and making progress towards our goal of having a family. I calculated the due date and it came out to be December 3rd. Just like nurse Jackie had predicted, it looked like in December I’d hopefully be back in the hospital to give birth to a healthy baby rather than to have a D&C.

While I was happy and relieved to be pregnant again, I’d lost the innocence that I’d had the first time. Especially since I’d had a missed miscarriage the first time and hadn’t even known that it had happened, I was constantly wondering if everything was ok. I put off making my first doctor appointment because I was almost too scared to – like that if I made the appointment I would jinx it. After a week and a half or so though I made the call. My doctor was on vacation, and was booking appointments 4 weeks out, so I panicked a bit not wanting to have to wait that long since that would be past the gestational time that we lost Gizmo. I explained my history, and they said they’d talk to the doctor covering for my doctor. She had me go in for blood tests right away to confirm that my hormone levels were increasing at a normal rate, which they were. As soon as my doctor was back from vacation I got a call from her office saying that she was able to see me that day – what a relief since I was thinking I would have to wait several more weeks. So on April 11th I found myself back in her office for my 2nd COP (confirmation of pregnancy) appointment in a little over 5 months. This appointment was only 6 weeks into the pregnancy, but for the 2nd time we heard a little heartbeat. This time it was only 118 (it had been 133 with the first pregnancy), so I was a bit worried, but the doctor said that anything over 90 was normal. She knew that I was going to be very anxious during these early weeks, so she offered to see me weekly so that we could check that everything was still ok. I knew how busy her schedule was, so was extremely grateful that she was willing to do this for us.

First Ultrasound, April 11th, 2016

Each subsequent appointment was a time of anxiety followed by relief as we heard that heartbeat. We didn’t even dare give it a nickname this time – again, fearful of jinxing things. I was struggling with even acknowledging the pregnancy for fear of getting attached only to have it taken away from me again. I wouldn’t even allow myself to think beyond the next appointment. I felt that this wasn’t the way a pregnancy was supposed to be, and that I was missing out on the “joy” of it, but I hoped that after we got past the stage that we got with Gizmo, and then got past 12 weeks, that a lot of the worry would be gone and then I could focus on the joy of being pregnant. Little did I know that there would only be more worry to come, and very little joy.

At 7 weeks on April 18th the heart rate was up to 143, and everything looked good. On April 26th we were at 8w3d, right around the gestational age that we lost Gizmo – but this time the heart rate was up to 176bpm and the ultrasound picture looked like a bean according to my sister Katie. My brother Carson said that it looked like a grape, and that it must have the genes that gave him his big belly since it had a big bulge!

April 18th, 2016

April 26th, 2016

Not only were we living our dream of being pregnant, but we were also in the process of trying to buy a house since we’d decided we wanted to make Boulder our permanent home. On April 29th we went under contract to buy our first house together – everything seemed to be falling into place!

On May 2nd, Mike’s 40th birthday, we once again sat anxiously in the examination room. I was terrified that we were going to get bad news and ruin his birthday, but the image came up, and there was the little heart beating furiously at 176bpm. The image for the first time resembled a person – you could see its head and what looked like stubby arms and legs. Carson called it pirate baby because of a dark patch that kind of resembled an eye patch. On May 12th we were back in the exam room. We were now at the 10w5d mark – about the same gestational age as the fateful appointment when we’d learned of Gizmo’s demise. This was a big hurdle to get past, and everything continued to look perfect. I went in the next morning to have the bloodwork done for the cell-free fetal DNA testing – maybe, just maybe, things were going to be ok – we were so close to that magic 12w mark where I hoped I’d be able to relax.

Pirate Baby! May 2nd, 2016

May 12th, 2016

As we waited for the results of the bloodwork, I playfully asked all of my siblings to bet on what the gender would be. My sister and sister-in-law, both nurses, guessed boy. My brother Carson, my future sister in law Sarah, and future brother in law Michael all guessed girl. My brother Peter guessed pirate because he didn’t want to commit. I guessed girl, partly because I kind of wanted a boy (because I’m not “girly” at all, so wouldn’t have a clue what to do with a girly girl!) and so I figured that by guessing girl it might increase the odds of boy given my lack of luck in guessing things.

On May 19th I received a call from the nurse to say that my bloodwork was back. In the voicemail she shared that there were no genetic problems found (so the chance of a trisomy such as Downs syndrome was very low), and that they knew the sex of the baby but didn’t want to leave that information in a voicemail. I was excited by this news, and called back and left a message telling her to leave the info in a voicemail, as I wanted to be able for Mike to hear the news at the same time that I did. When I saw my phone ring I resisted the urge to answer it, and then saw a voicemail alert flash up. I couldn’t wait to see Mike that evening and find out together the sex of our baby. I went to the climbing gym to meet him that evening and we each took an earbud as I played the recording. Oh no! She didn’t leave the information because they still didn’t want to leave it on a voicemail! And now the office was closed for the day! It was agonizing knowing we had to wait another day. The next morning I called again and when she called back I answered. I explained the reason I wanted it on a voicemail, so she agreed to call back and leave the news that way. I still have that voicemail on my phone, as I haven’t wanted to delete that reminder of a time full of joy and hope. On the evening of May 20th we listened to it together as the words “congratulations, you both are having a little baby boy” floated out of the phone and into our hearts – we were both so happy!

At this point we were so close to the 12w mark, and with the cell-free fetal DNA test results all looking good, I finally allowed myself to start thinking about the future. The next day as we hiked at Chautauqua we started talking about names. I proposed Daniel, and after kicking it around for a while we both kind of settled on it as a definite possibility. We also liked Liam, and we thought Daniel Liam Deitchman had a good ring to it. That weekend was the happiest, most care-free time of my pregnancy, but on Monday, less than 3 full days after finding out we were having a baby boy, our lives were once again going to be turned upside down.

On May 23rd we had a detailed NT (nuchal translucency) ultrasound scheduled. The purpose of this type of ultrasound is to measure the clear space in the tissue at the back of the baby’s neck, as babies with more fluid at the back of the neck are at higher risk of abnormalities such as Downs syndrome. Since we’d already had the cell-free fetal DNA test, we weren’t too worried about this. I was mostly just eager to see a heartbeat since we hadn’t had an ultrasound for 11 days. The image popped up on the screen, and there it was, Daniel’s heart beating as strong as ever. The ultrasound technician proceeded to do all the detailed measurements – not just of the space behind the neck, but all kinds of other measurements as well. We saw Daniel squirm and move around more than we had in the past, he even appeared to be sucking his thumb at one point. We thought everything was fine, and basked in these images of Daniel. The technician left the room and a while later the doctor came in to talk to us. I was totally unprepared for what she was about to say.

Thumb sucking, May 23rd, 2016

She basically told us that Daniel’s bladder was severely enlarged – it should have been about 6mm, but instead was 15mm, so 2.5 times the size that it should be. She proceeded to explain that an enlarged bladder means that urine wasn’t getting expelled from his body, so it meant that there was pressure on his kidneys which could cause kidney problems, and that there was a risk of there not being enough amniotic fluid to support lung development as we moved into the 2nd trimester (most of the amniotic fluid comes from the baby’s urine once you get to the 2nd trimester). Amniotic fluid is vital for healthy lung development, so this was a severe problem that could lead to a baby who wouldn’t be able to breath. She said that the problem might be a genetic problem, or that it could be something else like a valve blocking urine from exiting the bladder. If we wanted to do genetic testing, then we had 2 options – a CVS, which carried a higher risk of miscarriage (1/100) but that could be done right away, or an amniocentesis, which carried a lower risk of miscarriage (1/500), but that couldn’t be done until 15 weeks, which would mean waiting for 3 weeks. In addition to the enlarged bladder, Daniel only had 1 artery in his umbilical cord instead of 2 like there was supposed to be. This by itself isn’t terribly uncommon, in fact I think that I had a single artery umbilical cord, but when combined with the enlarged bladder it increased the possibility that there might be more severe abnormalities. We left the hospital stunned and reeling from this bombshell that had been dropped on us. What did this mean? Why us? We’d just started to feel “safe” with this pregnancy, and now everything was in doubt again.

We decided that we definitely wanted to do the genetic testing, and finally decided that it was better to know sooner rather than later what the results were since it was unlikely that we would want to continue the pregnancy if there were severe genetic problems. I ended up getting an appointment for the CVS the next afternoon, so on May 24th we headed to the Platte River Perinatal Center in Denver. The doctor was able to get a sample successfully, and he also did a detailed vaginal ultrasound and looked at the heart and other organs. He noted that the kidneys looked bright which could indicate kidney damage, but that the heart and brain looked fine from what he could tell. He said that the way the enlarged bladder presented it looked like it was probably a valve that was causing the blockage, but that obviously he couldn’t be certain. His bedside manner was exceptional, and I found out later that he’s one of the leading experts in the country in this field, so I was in good hands (https://prperinatal.com/our-doctors/dr-john-hobbins/). He also gave us an immediate referral to Children’s Hospital, because if we were going to continue the pregnancy we would need special care to try and monitor and address this problem.

3D Ultrasound, May 24th, 2016

The next few days after the CVS I was constantly worried about a possible miscarriage. It is normal to have cramping after a CVS, but when I woke up in the middle of the night with bad cramps the night after the procedure I was scared. I had been fortunate to already be seeing a psychologist as this was all happening, and I had shared with her how I’d struggled to not become too invested in the pregnancy early knowing it might not last. Before the enlarged bladder had been detected she had suggested putting my hands on my belly and talking to Daniel and telling him how I felt – telling him that we were looking forward to meeting him but that if we didn’t get to that it wasn’t his fault or our fault, and that we loved him regardless. With all of this new worry, I continued to talk to him – now though I was telling him to be a fighter – telling him that his mother was a fighter, and that his father was a fighter, so I knew he was a fighter too, and to please keep fighting.

While waiting for the results of the CVS and the appointment at Children’s Hospital I was trying to find out as much as I could about enlarged bladders in fetuses of this gestation, and found some studies that were quite helpful. The main studies that I found that seemed to be the most relevant (http://www.fetalmedicine.com/synced/fmf/2003_19.pdf, http://onlinelibrary.wiley.com/doi/10.1046/j.1469-0705.1997.08060387.x/epdf) seemed to indicate that this happened in 1/1500 pregnancies – I felt so defeated knowing that we’d won this 1/1500 “lottery”. The studies indicated that it was only genetic in about 1 in 5 cases. The larger the bladder, the less likely it was genetic, but the bad news was that the larger the bladder the less likely it was that it would resolve on its own. Daniel fell into the larger category, so less likely to be genetic but more likely to not resolve on its own.

We got the preliminary results back from the CVS 3 days after the procedure, on May 27th. I’d never been as relieved as I was when they said that there were no trisomies. The full micro array of tests that had been done though wouldn’t be available for another 7-10 days, so more waiting….

We had our first appointment at Children’s Hospital Colorado in Aurora (a suburb of Denver) on June 1st. At this visit they did an echocardiogram of Daniel’s heart, as well as another detailed ultrasound (our 3rd detailed ultrasound in a little over a week). The good news was that the echocardiogram looked completely normal. It was still early though (only 13 weeks), so they recommended another echocardiogram later in the pregnancy since it was possible to miss things this early. The ultrasound technician, Beth, was to become a big part of our lives over the coming weeks and months. Unlike the previous technicians that we’d had, she was more forthcoming with information as she scanned, and she had a great sense of humor.

The ultrasound showed that the bladder was still obstructed, but we were told by the doctor that there wasn’t anything that could be done until after 16 weeks. We were told that there was still a decent chance that the blockage might resolve on its own, but that if it didn’t, there was a possibility of doing surgery to place a shunt in Daniel’s bladder to allow urine to flow out of his body. If we had to do the shunt, then we were looking at a 50% survival rate, and if he survived there was a 50% chance that he would have severe kidney damage and require dialysis and a kidney transplant. A kidney transplant wouldn’t be possible until he was 2-3 years old, so he would require peritoneal dialysis 12hrs/day every day up until that point. Additionally, we were told that kidney transplants only last about 10-15 years on average, and that someone could receive a maximum of 3 transplants in a lifetime (antibodies build up that cause the body to reject donor organs over time). This was very humbling news to receive, as I hadn’t realized that transplants didn’t last longer – previously I had been viewing the transplant route as a long term solution, but now I was being told it was highly probable that it wouldn’t necessarily be quite the solution I thought it would be. We were also told that there was a chance that Daniel had Prune Belly Syndrome, a condition with additional complications, and that there was no way to know if this were the case until birth.

At this point we were still waiting for the full results of the CVS, so we were told that if we wanted to continue the pregnancy, to come back around 16 weeks and they’d reevaluate. We certainly wanted to give Daniel every chance possible for a good outcome, so we decided to at least wait until 16 weeks (pending the CVS results) and reevaluate then. In the meantime, we needed to start doing some serious thinking about what we wanted for Daniel’s future, and whether he’d have a high enough quality of life to lead a fulfilling life. Given all the unknowns though, this was incredibly difficult. As a friend said, we were in the throws of parenting – making life and death decisions for our son, decisions that would impact him and us forever.

Enlarged bladder, June 1st, 2016

June 1st, 2016

June 1st, 2016

Enlarged bladder, June 1st, 2016

On June 10th we finally got the results from the full micro array that had been taken with the CVS, and it showed that everything was perfectly normal. They did of course say that they can’t test for everything, but that this was a pretty broad test. It was a relief knowing that Daniel didn’t have any detectable genetic defects, so now we were back to waiting to see if the obstruction would clear on its own.

The couple of days leading up to the RAAM start were really tough on me emotionally. My Facebook feed was overflowing with posts about RAAM, the event that had been such a huge part of my life for the previous 4 years, and not only was I not involved with it this year, but I was struggling to stay afloat on the turbulent seas of Daniel’s pregnancy. RAAM was typically the time when I had a band of people congregating around me to give me support and help me – I was the center of their attention for those 2 weeks as I biked across the country – but here I was this year in desperate need of support and yet I felt so alone. On June 14th, the day that RAAM started, I couldn’t contain the emotion any longer, so I actually got on my bike and went for a ride – my first since early May when I’d stopped biking for fear of getting hurt and it impacting the pregnancy.

On June 15th we officially became homeowners as we closed on the house that we’d bought in Boulder, the one that we’d gone into contract on back in April before we’d learned of Daniel’s problems. This should have been a happy occasion, but it was hard to feel celebratory given all that we were going through. Additionally, now we had to go through another move – our 3rd move in 3 years.

At the initial 12 week scan where the enlarged bladder was detected, the doctor had said to come back around 15 weeks for a recheck. Even though we had the 16 week appointment at Children’s Hospital, I decided to keep the 15 week appointment in Boulder in hopes that it might give us some early good news. Plus Mike was going to be out of town crewing the second half of RAAM when I had the 16 week appointment at Children’s Hospital, so I wanted him to get an update before he left (and I was hoping it would be good news so that I wouldn’t feel so anxious about him going out of town at this critical juncture). So on June 16th we had another detailed ultrasound done in Boulder. As soon as I saw the images on the screen I knew it wasn’t good, and I got tears in my eyes. The technician wouldn’t say anything while she took the measurements, but I could see the numbers on the screen, and Daniel’s bladder was still severely enlarged – now reading about 55mm.

Thumbs Up! June 16th, 2016

Hands, June 16th, 2016

Feet, June 16th, 2016

Head, June 16th, 2016

The doctor came and met with us to tell us what I’d already feared was true. She said that the bladder was fully obstructed, and that there was almost certainly kidney damage, so if he survived we were going to have a very very sick baby, so we had important decisions to make. She wanted us to know all of our options, and that termination was still an option, but that obviously it was our decision. I told her that I certainly wanted to know all of our options, and that I appreciated her bringing it up since it was something I knew was an option but was afraid to ask about for fear of being judged, especially when it wasn’t something I had decided about, but rather wanted to know about so that we could make an educated decision. She gave us contact information for where we could go for a termination where we wouldn’t have to encounter picketers, as apparently the local clinic was protested a lot. Any decision we made was going to be extremely difficult, but I was so grateful for her openness and empathy in providing us with information on all of our options. I’ve been pro choice for most of my adult life, and our whole experience with Daniel has only strengthened my view that families need to be the ones making these decisions with input from their doctors. Each situation is different, and each family is different, and the government has no business making that decision. These are excruciating choices, usually where neither outcome is “good”, and no matter what choice a family makes, it is made out of love and compassion.

The week between that appointment and the one at Children’s hospital was difficult. Between Mike going out of town, the continuing emotions regarding RAAM, trying to organize the move into the new house, the worry around Daniel, and dealing with some conflict in my team at work, I was a mess. Finally on June 22nd I headed to Children’s Hospital alone to find out what the next steps would be. At this point I was assuming that since the obstruction was still present that we’d be looking at a shunting procedure since that was what had been mentioned at the previous appointment. I had an MRI first thing in the morning, then I had another detailed ultrasound with Beth as well as a consultation with a geneticist. Then I had to wait for about 5 hours for the “family meeting”. This was when I got taken to a room full of specialists to talk about the diagnosis and what our options were. I’d been holding things together relatively well up until that point, but I walked into that room and saw a table full of doctors and it all hit me like a ton of bricks – I couldn’t hold back the tears anymore, it was like a floodgate had been opened. There was a fetal surgeon, a fetal medicine doctor, a urologist, a neonatologist, the geneticist, and a few other people (fellows, nurses, etc.). First they reviewed the results from the MRI. They basically said that Daniel’s kidneys were so cystic that they were basically destroyed, and so he was in complete renal failure. This meant that a shunt was no longer an option, as you only do a shunt if there is kidney function since the point of the shunt is to allow urine to be expelled from the baby’s body. The team was very doubtful that Daniel’s kidneys were producing any urine at this point, so a shunt was pointless. What this also meant was that the amniotic fluid around Daniel was in grave danger of dropping and in fact disappearing completely. Without that fluid, his lungs would not develop.

June 22nd, 2016

The only option we had to try and save his lungs was an amnioport procedure. This was basically a procedure where they would implant a port into my abdomen just below my ribcage and then tunnel a catheter to the uterus where they connect it. I would then have to go back 2-3 times per week for the remainder of the pregnancy to have fluid infused into the amniotic sac through the port. It was also possible that I might end up on modified bed rest, and I might even be required to stay closer to the hospital or be admitted as the pregnancy went forward. This was a very new procedure though, only really being an option for the past 10 years or so, and they’d only done about a dozen of these procedures at the hospital. With the procedure there was a risk of rupturing the amniotic sac, and even if that didn’t happen there was a high risk of preterm labor, likely between 29 and 34 weeks.

This was where the neonatologist started talking to us about all of the additional complications and risks with a premature baby that had the complications that Daniel had. The fact that he’d need to be about 3lbs in order to even be able to get dialysis, the fact that being on dialysis would make it very difficult for him to feed and grow so he’d likely need a feeding tube, the risks of infection and other complications such as bleeding in the brain. Basically the point was that this would be a very difficult path with a lot of obstacles to overcome. The urologist also provided information about the urinary problems. Because the urethra showed a backup of fluid in it and was presenting as a “megalourethra”, the cause of the blockage was likely an anterior urethral valve. Due to the damage that had been done already, Daniel would likely have urinary issues his entire life – the likelihood of needing reconstructive surgeries on his bladder, the likelihood of needing a catheter, the possibility of sexual dysfunction as he got older. The stream of potential problems and complications seemed to be coming from a firehose. When you’re at one of the top 5 Children’s Hospitals in the nation and they’re talking about your only option being a procedure that they’ve only done a handful of times and they’re saying it is extremely risky and that even with the best case scenario you’ll likely face a myriad of complications for years and decades to come and that you’re in about the worst position you could be in in terms of the decision you have to make, you know it’s pretty bad.

We basically had 3 options at this point – terminate the pregnancy, continue the pregnancy and do comfort care which basically meant that we’d let nature take its course and that Daniel would almost certainly die at birth if not before because his lungs wouldn’t develop, or do the amnioport. They said that they wouldn’t let us proceed with the amnioport until we’d met with a counselor, nephrologist, and transplant surgeon, so I said to get the ball in motion to set up those appointments since I wanted to hear from them before making a final decision. Mike set about returning from the east coast several days early so that he could be home when we had these additional appointments.

When I left the hospital I was a mess – I literally felt shattered into a million pieces. I called a close friend, Sandy, as I drove home just so that I could have someone to talk to and convey the information to, as I knew I was having trouble processing it all objectively. Fortunately even though Mike was out of town, another friend, Erin, was arriving in town that night and was going to be staying with me, so I wasn’t alone. This was probably the worst day in this journey thus far. The next morning driving to work a song came on the radio that captured how I felt – Keith Urban’s “Break on Me”. I felt absolutely shattered, and longed for someone to break on.

Meanwhile I set about moving to the new house that weekend so that the move would be completed before I had the surgery if that’s the route that we went. Preparing for and executing a move is a stressful enough situation in the best of times, and this certainly wasn’t the best of times. To add insult to injury, the movers were the worst movers that I’d ever dealt with, further compounding the stress. That afternoon as I moved the remainder of our things that the movers hadn’t moved, my route was blocked by emergency vehicles. It turned out that a cyclist had been hit and killed by a drunk driver less than a mile from our old house – a stretch of road that I’d ridden on countless times as I bike commuted home from work. This just left me feeling even more vulnerable – I was a wreck.

After this latest appointment at Children’s Hospital I also posted a message on Facebook asking if anyone had experience with dialysis and/or kidney transplants. We still hadn’t announced the pregnancy to more than a handful of friends and family, but I wanted to try and educate myself as much as possible as we made this decision. Several people stepped forward, and I had conversations with 2 kidney donors as well as a kidney recipient. I also spoke to 2 NICU nurses, a PICU nurse, a critical care nurse who spent time in the NICU, and a friend who’d had her water break at 23 weeks but had gone on bedrest and carried her twins to 28 weeks and had one die shortly after birth and one survive. Each of the nurses and my friend emphasized that their experiences in the NICU were not easy, and that almost all families underestimate the toll that it takes on them until they’ve been through it. They also helped me to identify additional questions that we should ask. I also had a friend who had contacts at Stanford’s Children’s Hospital, and through her contact I was actually able to talk to a mother who had an infant who needed dialysis, as well as a mother who had a teenager who needed dialysis and then eventually got a transplant. I felt incredibly fortunate to get to talk to so many people with so much relevant experience.

Mike flew home the evening of June 28th, and the next morning we were back at Children’s Hospital to meet with the counselor and the neonatologist. The appointment with the neonatologist was pretty bleak – it seemed like she was saying everything just short of actually coming out and saying that we were in a hopeless position. I remember we came home after that appointment completely deflated. We walked Kona up to the bluff overlooking the front range, our first walk together there since moving to the new house. We sat on the bench watching the sun set over the mountains and I just felt so hopeless and helpless. The last thing I wanted was to subject Daniel to a lot of pain and suffering with a low quality of life – I didn’t want him to suffer needlessly. That to me would be a worse outcome than losing him – to me there are things worse than death, and just because we “can” do something to save someone, doesn’t mean we “should”. But I also wanted to give him a chance if there was a decent chance for a good outcome. How do you make a life and death decision for someone you don’t even know? I felt so torn.

The next morning we were back at Children’s Hospital to meet with a nephrologist, a transplant surgeon, and to have another ultrasound done. The nephrologist gave us the first seemingly good news we’d heard in a while. He said that there really was no way to know if Daniel’s kidneys were functional. He said that even with 25% function it might be enough to support Daniel for a period of time, and that then when he outgrew the kidney function as he got bigger he’d need dialysis and then a transplant. While the other doctors had said that the MRI proved that Daniel had no kidney function, this doctor wouldn’t commit to that. The transplant doctor also had more positive news, sharing that the youngest recipients of transplants actually do better on average than older recipients because their immune systems haven’t matured yet. The transplant though was the least of our worries at this point, as a lot of things had to happen before we even got to that state, but it was at least good to hear that a longer term prognosis mightn’t be as bad as we’d perhaps thought. Then we had the ultrasound, and Beth was quite surprised that the fluid levels were still adequate. Everyone had expected that the fluid would have dropped by now, so the fact that it was holding steady was a positive sign. As long as there was fluid there, there was no need to do the amnioport surgery. Finally there seemed to be a small glimmer of hope! The doctor said to come back weekly so that we could monitor the fluid levels, but until it dropped there was nothing to do. Talk about a yo-yo of emotions – less than 24hrs earlier everything seemed like doom and gloom, and yet here we were with a small glimmer of hope.

On July 6th we went back for another ultrasound. That afternoon Lauryn, the girl I’d met in Camdenton, Missouri during RAAM in 2012 when she was 11 years old, was flying in from Missouri to stay with us for a week. I was so scared that we were going to get bad news at this appointment and that I’d end up needing surgery while she was visiting, but thankfully the fluid levels were still fine. At this point they gave us the option to have the weekly ultrasounds done in Boulder instead of having to drive to Aurora for them, and that assuming everything held steady we would come back to Children’s Hospital in 4 weeks for another echocardiogram and ultrasound to check on things. Not having to drive to Aurora every week was appealing, so we agreed to do that. Things were somewhat hopeful finally.

Hi! July 6th, 2016

Arm, July 6th, 2016

We had a great visit with Lauryn, which was such a nice break from all of the stress that we’d been under. We hiked at the Flatirons, visited Garden of the Gods, drove up Pikes Peak, went to a Shakespeare in the Park performance, and hiked in Rocky Mountain National Park.

Trail Ridge Road, Rocky Mountain National Park

Pikes Peak

Mills Lake, Rocky Mountain National Park

Mills Lake, Rocky Mountain National Park

The afternoon that Lauryn left (July 12th) we had an ultrasound in Boulder. Since the doctor hadn’t been following our case though, she overreacted to what she saw, causing us a lot of stress and panic. She thought that the bladder was larger, and that it was pushing Daniel’s heart to the right side of his body. The ultrasound picture that she showed us seemed to show that the bladder was taking up the full length of his body, so it certainly was concerning. We called Children’s Hospital and arranged to get in and see them 2 days later on July 14th.

Bladder all the way to the head, July 12th, 2016

At the ultrasound at Children’s Hospital on July 14th, sure enough, Beth said that everything was stable, and that the doctor in Boulder had just overreacted since she hadn’t been directly involved with monitoring things. It was a relief, but also a subtle reminder that what we were dealing with wasn’t “normal” – it was bad enough that another doctor thought it warranted more attention even knowing there was a problem. What wasn’t good news though was that after reviewing the ultrasound the doctor thought there was possibly some thickening of the walls of Daniel’s heart. He also seemed pretty confident that the fluid levels were not going to hold for much longer. I couldn’t understand this – presumably Daniel’s kidneys were producing some urine since the fluid levels were holding, and if the urine was able to exit the body, then why would the kidneys suddenly stop producing urine? He didn’t really have an explanation other than to say that this was what he believed. The news about Daniel’s heart was my biggest concern though, as up until this time all the damage was contained to the renal/urinary systems, so the possibility that his heart might also now be involved was concerning. We made another appointment to come back on July 22nd for another fetal echocardiogram and ultrasound. We also decided that from here on out we’d just stick to visiting Children’s Hospital for our ultrasounds since trying to have the monitoring appointments in Boulder clearly hadn’t worked.

Daniel passed the fetal echo cardiogram on July 22nd with flying colors, which was a huge relief! The cardiologist who talked to us about the results didn’t even mention any thickening of the heart walls, so I had to ask her about it, and she said everything looked fine. Daniel’s heart was healthy and strong! The ultrasound also showed that the fluid levels were still holding steady, so more good news! It was after this appointment that we decided to announce Daniel to the world. We decided that at this point we were fully committed to continuing the pregnancy – the fluid levels were holding, and with each passing week the risks with the amnioport procedure decreased a little bit (just in terms of the further along we were in the pregnancy, if the procedure caused preterm labor after a month or so we were already further along and thus hopefully in the range where he’d be big enough for dialysis). So on July 22nd we posted on Facebook and shared Daniel and his journey with the world. The support we received was overwhelming, and now I felt like he had a whole cheering section cheering him on.

July 22nd, 2016

Brain, July 22nd, 2016

Up until this point I hadn’t felt Daniel move, but during the fetal echocardiogram the technician made the comment that she’d felt him kick while she was doing the scan. I’d been told by Beth that due to the low amniotic fluid levels and his head down position he likely wouldn’t be as active, and I’d have a harder time feeling him move, but with this news from the technician that she’d felt him I started to place my hands on my belly more to see if I could in fact feel him. I’d figured before that I would feel him internally before feeling him externally like this, but I was wrong. Sure enough, when I sat resting with my hands on my belly I would every now and then feel a flutter as he kicked. On July 25th while we watched the Democratic National Convention on TV, Mike felt Daniel kick for the first time, right as Bernie Sanders took the stage. As Bernie supporters, this seemed appropriate!

On July 28th we had our next ultrasound. Everything still looked good and the fluid levels were holding steady. That weekend we had several different visitors from California. We spent Saturday morning with Carla who was in town to visit her son who attends CU Boulder. Mike and Carla tubed on Boulder Creek while Kona and I walked along the creek. Then on Sunday I hiked up the First/Second Flatiron trail in Boulder with my former boss and mentor who was visiting from California, along with another former coworker from California who’d just moved back to Colorado. Our friend Stacy also arrived that weekend and was staying with us for a week while doing Ironman Boulder. I was feeling good and starting to think that maybe, just maybe, things were going to work out. At August 5th’s appointment though, Beth was concerned that the fluid levels may have dropped a bit. It wasn’t critical yet, but she said it was concerning enough that just to be safe we should schedule an appointment with the surgeon for the following week’s appointment. If the fluid levels were fine, then no foul no harm, but if they had dropped, we’d be able to consult the surgeon and decide what action to take.

July 28th, 2016

July 28th, 2016

Boulder Creek, July 30th, 2016

Flatirons Trail with Hope and Brian, July 31st, 2016

3rd Flatiron, July 31st, 2016

Flatirons, July 31st, 2016

I hoped desperately during that next week that the fluid level drop was just a blip and that everything would be fine again, but alas on August 11th the ultrasound confirmed that there was basically no fluid left. I tried to stay positive though – we’d made it about 6 weeks further than we’d originally thought we’d get before we faced the amnioport surgery. Daniel had had fluid around him during the most critical lung development period of 20-22 weeks. Now all we could do was move forward with the surgery and hope that it was successful.

In the study that they’d given us about the surgery, there were only 8 patients. Of those 8 patients, the babies were delivered between 9 and 96 days after the procedure with the mean time between procedure and delivery being 63.7 days. We’d been told that we needed to get Daniel to about 34 weeks to give him the best shot of being big enough for dialysis to be successful, which was 10 weeks past the date of surgery, or about 70 days – a week longer than the mean result of 63.7 days from the study. Surely this was at least possible, right!? Of the 8 babies in the study, 1 died of an unrecognized laryngeal web, and 1 died after preterm premature rupture of the membranes, but none of the other 6 had pulmonary hypoplasia at birth, meaning the port had successfully allowed for their lungs to develop (which is the entire reason for the amnioport procedure to be done). Of those 6, 2 died when peritoneal dialysis could not be performed due to bowel obstruction and peritonitis, so 4 survived the neonatal period. Of those 4, 3 survived to discharge on peritoneal dialysis and each of them went on to receive a successful transplant. So overall, there was a 3/8 survival rate. Not great, but certainly not completely hopeless. Although I was still scared, I was at least somewhat hopeful that things had a chance of working out.

That week was the Perseid Meteor Shower, so on the night of August 11th, the day that we’d found out I would need the surgery, we walked up to the bluff near our house around midnight to lay on the ground and watch the meteors. I figured I could use all the shooting stars I could get to make wishes for Daniel’s health and survival. Although the skies were partly cloudy, we did get to see several meteors, and I made wish upon wish that Daniel would be ok.

The surgery was scheduled for Tuesday August 16th, with an initial amnioinfusion via needle scheduled for Monday August 15th in order to have some fluid present so that the port could be placed safely during the surgery. I knew that after the surgery I wouldn’t be able to do any kind of physical activity, so I asked Beth if that weekend we could go and hike a 14er. I figured it was my last few days of “freedom”, so I wanted to do something meaningful with it before settling into being a couch potato for the duration of the pregnancy. She said that while she wouldn’t advise it for most patients, she knew that I was a bit different, and that she didn’t see it being a problem as long as I followed some basic rules – hydrate really well, make sure we started early enough so that we were off the mountain before any afternoon storms moved in, take it really easy and rest frequently, and make Mike carry most of the weight. She approved of my choice of Grays and Torreys, although she said to just do Grays Peak so that we could take our time and still get off the mountain before the storms without having to rush.

On August 13th we got up at 2:30am and drove to the Grays Peak trailhead. We got to the trailhead around 4:30am, and already the parking lot was full and there was a steady stream of hikers heading up the mountain. We headed off in the dark around 4:40am. The trailhead starts at about an elevation of 11,000 feet, so the air was already pretty thin. Everything that Beth had told me kept playing over and over in my head – hydrate well, take lots of breaks, hydrate well, take lots of breaks. We made slow but steady progress. I most certainly was doing an adequate job of hydrating given that I had to stop and pee about 8 times during the hike! This posed its own challenges though given how exposed most of the trail is! We watched the sunrise behind us which was beautiful. It took us about 3:45-4hrs to hike the 4 miles to the summit of Grays Peak at 14,278 feet elevation. It was spectacular at the top – a full 360deg view of mountain peaks. The weather was absolutely perfect, with not a cloud in the sky. This was our first Colorado 14er on foot (we’d biked up Mt Evans the previous fall after we’d moved, and we’d driven up Pikes Peak with Lauryn the previous month), and we got to do it with Daniel.

Grays Peak, August 13th, 2016

Descending Grays Peak

Torrey’s peak (14,275 feet) is right next to Grays, and it only adds about a half mile and 500 feet of elevation gain to climb it as well. Mike wanted to do Torreys as well, so at first I said I’d hang out and wait for him at the saddle between the 2 peaks, Beth’s instructions running through my head. But the reason Beth had said not to do Torreys was in order to get down before the storms, and given that there were no clouds in sight and it was still early enough in the morning we should have no trouble getting down before any storm did build up. Also, if I just sat there waiting for Mike to do Torreys that wasn’t getting me down below the treeline anyway, so I might as well attempt Torreys too. I sent Mike and Kona ahead and told them to come on down if I didn’t make it, as I didn’t want to commit to getting to the top in case I didn’t feel up for it. The additional climb up Torreys was steep but short, and I made it to the top not too long after Mike and Kona got there. So Daniel and I had conquered our 2nd 14er on foot – woohoo! By the time we got back down off the mountain it had taken us about 8 hours to travel the 8.5 miles round trip with about 3600 feet of elevation gain – definitely the hardest hike that Daniel and I had done together! Everything about this hike had been perfect, and I was so thankful that Beth had given me the go ahead to do it. It is a special memory that I now cling to, and Grays Peak will forever be a special place – it is Daniel’s mountain.

Torreys Peak, August 13th, 2016

Descending Torreys Peak, August 13th, 2016

On Monday August 15th I was back at Children’s Hospital for the amnioinfusion in preparation for surgery the next day. This appointment was different than my previous appointments in that there were a lot more people present. It was a bit overwhelming in fact with the doctors, fellows, medical students, and nurses all milling about. The procedure was successful though, and everything looked good. The next morning we were up at 4am since we had to be at the hospital by 5:30am to check in for surgery which was scheduled for 7:30am. They did a spinal tap as well as placed an epidural in case the surgery went long and the spinal tap wouldn’t last long enough. Even though I was awake during the surgery they gave me drugs that made me not as aware of what was going on. I do recall a lot of tugging and pulling sensations though. Apparently they did have a little bit of trouble getting the catheter placed, but when I came out of surgery they said that it had been a success. I had 2 incisions – one just under my rib cage where they’d placed the port (which was a bump that I could feel under the skin), and the second down by my belly button where they’d gone in to attach the catheter to my uterus after tunneling it under the skin from the port. The lower incision, which was bigger than I’d expected, made any kind of abdominal movement rather painful, more so than I was expecting. I was still catheterized, so I didn’t need to get up or move about at all, so I just rested in my bed and watched the Olympic coverage on TV. Unfortunately I had some kind of reaction to either the surgical drape or the chloroprep that they’d used to clean my skin though, as my entire belly started getting really itchy and red. They prescribed a topical medicated cream though which helped tremendously. Mike headed home mid day to uncrate Kona and to do work that he needed to do. I was admitted for at least the one night to be monitored, so he made plans to come back in the morning.

The rest of the day was uneventful, but in the middle of the night I was woken up by a sudden sharp pain in my belly, and that set off a stressful, painful, and worry filled night. While I hadn’t been taking much in the way of pain killers during the day, now I was in a lot of pain, and I was counting the minutes until I could have another dose of pain killers. It turned out that I was having contractions, and the nurse said that they were considering giving me some kind of medication to stop them, and that they wanted me to hydrate well also. They’d disconnected my IV during the day, and when they tried to hook me up to fluids again the fluid just backed up and leaked out because the IV placement had clotted shut. I set about trying to drink as much as I could, desperately wanting the contractions to stop. They also upped my pain meds saying that not only would it help with my pain, but that hopefully it would settle Daniel down so that he wouldn’t move as much so that my uterus could calm down and not be irritated. I texted Mike just after 2am to let him know that I was having contractions and that they were considering giving me a drug to try and stop them. I texted him again 2 hours later to say that they’d decided not to give me the drug and were monitoring closely instead. At that point I was having contractions every 2-4 minutes, but they were mild, and had dropped off a bit. I was still in a lot of discomfort though, and was now worried about going into labor.

Then in the morning I noticed that I was leaking fluid vaginally, even though I was laying down. This scared me even more – had the membrane ruptured? The nurses and doctors monitored it though and didn’t think that it was necessarily severe enough to have been a rupture, and the surgeon said that it was common to get some leakage from around where the catheter was attached following the surgery. That being said though, I was still having contractions, so they were definitely concerned about preterm labor. They did a vaginal ultrasound and found that my cervix had shortened significantly and was only just over 2cm now compared to more than double that prior to the surgery. The ultrasound did still show fluid around Daniel though, so that was good news, although the leaking had only just started about an hour earlier. When the doctor came to see me he said that it was definitely a possibility that I might go into labor, and that we needed to be prepared for that if it happened. He said that if that happened, the goal was for me to have a vaginal delivery and do comfort care for Daniel – i.e. a do not resuscitate order (DNR) since he was too small for dialysis being only 24.5 weeks. This was so difficult to hear – we’d been doing everything that we could to avoid this, and yet here we were, feeling like death was on the doorstep. They put me on indomethacin to try and stop the contractions, and they started a new IV line so that they could give me fluids.

To add to the chaos, when Mike drove to the hospital that morning he hit a shredded tire on the freeway and it caused a bunch of damage to the van. He was able to drive to the hospital since he was only a couple of miles away when it happened, but then he had to get towed back to Boulder later that day and the van was in the shop for a couple of weeks to get fixed. It never rains but it pours….

The rest of Wednesday and through the night into Thursday I continued to have contractions, pain, and fluid leakage, but eventually the contractions subsided. I hadn’t been eating much, and this eventually caught up to me in that the pain medication upset my stomach, so Thursday morning I threw up shortly after Mike arrived. Throwing up, as well as sneezes, are very painful when you’ve just had abdominal surgery! I didn’t feel at all like I wanted to go home yet on Thursday morning, and the doctors agreed, so I spent a 3rd night in the hospital. Finally by Thursday afternoon I was starting to feel somewhat better though, and they finally removed the catheter and allowed me to get out of bed. Friday morning they did another ultrasound. My cervix was still only about 2cm, and now all the fluid around Daniel was gone again, but other than that, things looked ok. I was discharged on Friday with the plan being that I would come back on Monday for the first attempt at an amnioinfusion through the port. They didn’t want to attempt one too soon given that I’d just about gone into labor, so they wanted my uterus to have a chance to calm down.

Post Surgery, August 19th, 2016

Meanwhile, with having to have the surgery, and the scare that had ensued when I thought I was facing possibly going into labor and knowing nothing about it, I looked into changing the childbirth classes that we had originally been scheduled to take in September. I explained the situation to the coordinator in Boulder, how I was likely to have preterm labor, and so wanted to get into classes sooner rather than later, and she found a series of classes that allowed us to get the same curriculum much sooner. The first class was a full day class on Sunday, 2 days after I was discharged from the hospital from the surgery. It was weird sitting in a room with other expectant parents, knowing that they were all having “normal” pregnancies, and that they were due in the next couple of months, whereas here we were 4 months out from our due date and I’d already had over 24hrs of contractions. The class was helpful though, and at least I felt like I knew a little bit of what to expect, unlike that complete panic I’d felt when I’d faced labor not knowing anything about it the week before.

On Monday August 22nd I went back to Children’s Hospital for the first attempt to do an amnioinfusion through the amnioport. Similar to a week earlier, it was a bit overwhelming in that there were a lot of people there. Because the port was completely under my skin, they had to try and find the rubber drum on the port by feel, and then inject into that. The first three attempts when they thought they had it showed no fluid going into the amniotic sac around Daniel. I was terrified that this meant that the port had been a failure, or that it had dislodged or something. Finally on the fourth attempt we saw fluid entering the amniotic sac, and I breathed a huge sigh of relief. They only put a small amount of fluid in since they wanted to gradually add fluid so that they didn’t add too much too quickly and cause a rupture.

I got up to get dressed, and as I walked to the bathroom some fluid leaked out vaginally. It wasn’t much though, so I proceeded out to the front desk to make the next appointment. When I got to the front desk though, I felt a much larger gush of fluid come out, and could feel it trickling down my legs. My heart immediately sank. They sent me back to the exam room and proceeded to look again with an ultrasound. It did in fact show that a large amount of the newly added fluid was now gone. At this point the doctor believed it meant that the membrane was ruptured. This put me at high risk of infection, and there was very little that could be done. He said that he would talk to the surgeon later that morning after he got out of surgery, but that for now there was nothing to do but go home. I was devastated. I’d been so focused on the goal of going 10 weeks after the surgery that I’d not really given much consideration to the possibility that the port might never work. I also couldn’t help but wonder if I’d done something to cause it. On the weekend Kona had jumped up on me when I hadn’t been paying attention and had put her paws/legs on my left side where the port was, causing Daniel to kick back pretty strongly. I’d been terrified at the time that maybe this had dislodged the port or something, or that worse yet, it might have caused a rupture. I had to keep reminding myself now though that I’d had fluid leakage while I was still in the hospital, long before Kona jumped on me, so it is unlikely that Kona caused the rupture. The rupture likely happened that night after the surgery – it might have even been Daniel kicking that had caused it. Regardless of how it happened, trying to assign blame would accomplish nothing.

I went home that day feeling completely dejected, yet again. Then shortly after getting home I got a call from the doctor – he said he’d spoken to the surgeon and he believed that it still might just be a small tear around where the catheter was inserted, and so they might be able to do something called an amniopatch where they inject platelets into the amniotic sac to try and help close the tear. He said to hang in there and that we’d meet with the surgeon on Wednesday. This gave me a little bit of hope. I went into work for part of the afternoon, but I noticed that I started to feel a bit weird. I also noticed more vaginal leakage, and that evening I was pretty sure that I was having contractions again. I’d had a bit of diarrhea, so was worried that maybe I was dehydrated, so I immediately started trying to drink as much water as I could, knowing that if you were dehydrated it could cause contractions. Newly armed with the knowledge from our birthing class the day before, I started timing the contractions. They were lasting 30-40s, and while they started out fairly consistently spread out (every 5-8min), as I got more hydrated they seemed more sporadic – coming anywhere from 2 to 15 minutes apart. I called Children’s Hospital and they had me speak to the on-call doctor. It turned out it was the same doctor who had been on call when I’d had contractions after the surgery – Dr. Chow. He asked if the contractions were as bad as that night, and I said that I didn’t think that they were, so he said to see how things went overnight and call back if things got significantly worse. All night I kept waking up from the contractions, so I called again in the morning and he said to come in and they’d check me.

After I arrived they hooked me up to the contraction monitoring device, and initially just based on that, the doctor didn’t seem too concerned. He said he’d examine me though, and that’s when we got the bad news – my cervix was already dilated a couple of centimeters, and Daniel had dropped down into the birth canal. I was in labor, and Daniel was going to be born that day. I was heartbroken and in shock. Later the doctor would say that he believed that I went into labor due to a subclinical infection. My white blood cell count had nearly tripled from a week earlier, and my temperature came very close to a fever. My infection likely occurred as a result of the ruptured membranes, and my body was doing what it needed to do to try and protect itself – it was getting rid of the cause of the infection.

The contractions were getting stronger and longer, and were quite painful, so given the important decisions that we were about to make, they ordered an epidural for me so that I could try to think clearly. At this point I was still assuming that it would be a DNR since only a week had passed since the previous time they thought I might go into labor, and that had been the recommendation then. Apparently a week makes a big difference though, and after consulting with the head neonatologist in the NICU, they were giving us the option to attempt resuscitation. The neonatologist came to speak with us, and told us that at 25 weeks in a normal pregnancy there was an 88% survival rate. There was however a 50% risk of developmental disorders of some kind, and a 25% chance of severe developmental issues such as cerebral palsy. Additionally, we knew that Daniel would be too small for dialysis, so that meant that unless he had some kidney function of his own, he wouldn’t survive more than a couple of days. She told us that death due to renal failure would be painless though, and that they could help to manage it. I was torn – even though I knew there was very little chance that he had kidney function, I didn’t know for sure, and I was afraid of not trying to at least find out. On the other hand, I also didn’t want to subject him to the pain and suffering of a severe developmental condition. The doctors left us for a while so that we could discuss and decide. I called my close friend Sandy so that we had a rational, objective person to help us talk it through. The doctors ended up coming back while we were still talking to her, but just having someone to talk it through with, someone who knew us, and who knew all the details of Daniel’s story, was very comforting and helpful. The doctor checked me again and I was now over 7cm dilated, so we had to make a decision fast so that they could get a NICU team in place if we were going to attempt resuscitation. We decided to do a basic resuscitation attempt to see if he could breathe on his own with minimal or “normal” assistance given his gestational age, but we didn’t want him having to be hooked up to a ventilator or have extreme action taken. If he survived, then within a day or so we’d find out whether he had any kidney function, and thus would know his fate.

Then there was the question of whether we’d monitor him during the birth – i.e. if he was in distress, would I have an emergency C-section. Given how the odds were stacked against him, and knowing that an emergency C-section put my future reproductive health at risk, I found this to be a fairly easy decision. If he wasn’t strong enough to survive a vaginal birth, then it didn’t bode well for his survival beyond that point. I wanted to give him a chance if he was strong and a fighter, but I didn’t want to put my future reproductive health on the line when the odds of his survival were so small to begin with. So I decided that I didn’t want an emergency C-section if he went into distress. I kind of wanted them to do the fetal monitoring during labor though if the information from the monitoring would allow the neonatologists to get a better sense of whether he might be at higher risk of severe problems – i.e. if he was in distress during labor, maybe we’d do less on the resuscitation front, but if he did well during labor maybe it was a sign that he was strong and he might have a chance. The doctor really didn’t want to have the monitors on though in a case where they weren’t going to take emergency action to save the baby – he said that it would be too hard on the staff and everyone involved to see the baby potentially dying and to not do anything, so in the end we agreed that there would be no fetal monitoring. If Daniel was alive when he was born, then we would have them do a basic resuscitation attempt, and if he responded well given his gestational age we would continue, but if he didn’t respond well compared to the norm for that gestation, then we would make the call to discontinue resuscitation. I felt that this gave him a chance, and in some way put the ultimate decision in his hands – would he pull through or wouldn’t he. Ultimately we didn’t want him to endure unnecessary suffering for no reason.

While the epidural had helped significantly with the pain, during some of these later discussions I was getting quite severe pain in my right hip and low back. At first I didn’t do anything about it, but finally I gave in and started pressing the button to get more pain medicine via the epidural. Later during the birth it was discovered that Daniel was face up rather than face down, so this was likely the cause of that pain – his head pushing against my hips and spine as he continued to drop through the birth canal.

I don’t remember what time they started having me push, but it did seem like the labor went on longer than what the doctor expected. What was weird was that while I’d had that severe pain in my hip/back earlier, and had been feeling the contractions as pressure before that, I got to the point where during active labor even though I hadn’t been pressing the epidural button for more pain medication I actually couldn’t even tell when I was having a contraction. I had one nurse on each side of me, and they were monitoring the contractions on the machine and would tell me when and how to push (we’d never gotten to the 2nd childbirth class that was supposed to deal with the breathing and coping aspects of giving birth, so while I knew more than I’d known the week before, this part was unfamiliar to me).

At 8:11pm on Tuesday, August 23rd, Daniel was born. The plan had been to put him on my stomach and delay the cord cutting by a couple of minutes to try and give him the benefit of the placental connection for a while longer. But the instant he was born I could tell that something was wrong. He came out completely limp like a rag doll, and looked so dark – and as they lay him on my stomach briefly I thought that he must be dead. I’ll never forget, in that instant when I first laid eyes upon him and he looked so helpless and limp and lifeless, I silently willed him not to fight – it was as if in that moment I saw a flash of his future suffering, and begged him to die peacefully and painlessly. The doctor had trouble finding a heartbeat at first, but then he found it, and they immediately cut the chord because they needed to work on him right away. He was whisked off to the side of the room where the team from the NICU began to work on him. I’d told Mike that when this happened that he was to go and watch. I remember laying there, seeing in the distance the fetal heart rate monitor that they had on him, and seeing numbers that seemed far too low. I saw a number in the 70s, and it was as if the doctor had read my mind when he turned to me and said it wasn’t looking good, that his heart rate should be over 100. I continued to watch as the NICU team huddled around him, and I saw the readout on the monitor continue to drop – into the 60s, then the 50s, then 40s. At that moment Mike came over and said that we needed to make a decision – Daniel wasn’t responding to their attempts to help him breathe, and they would need to do chest compressions if we wanted to continue trying to save him. I just shook my head and said “no more”. In that moment it was as if a wave of peace and relief swept over me – the agonizing decision making and worry and dread were over. Daniel had spoken, and his time on earth was complete. They wrapped him up and brought him over to me and lay him on my chest, where he silently slipped from this world to the next.

Cutting Daniel's cord August 23rd, 2016, 8:11pm

NICU staff trying to save Daniel, 8:12pm

Daniel's final moments, 8:22pm

Daniel's gone, 8:35pm

Meanwhile we were still waiting for the placenta to be delivered. After about 15 or 20 minutes the doctor became concerned and so he attempted to manually deliver it. He got most of it using his hands, but there was still a chunk that was “stuck”. He then had to go in with instruments to scrape it off. Although I was still on the epidural, I could tell that there was major stuff going on, but eventually he got it all. Next up was that I had to go back to surgery to have the amnioport removed. They wanted to do the surgery using the epidural I already had, so they proceeded to numb me up even more. Because the port was placed just below my ribcage, it meant that they had to numb me up to my chest. Mike took Daniel, and they wheeled me away to surgery.

The surgery seemed to take forever, and I was fully awake during it. I’d just lost my son, and I was in a weird, altered state. The anesthesiologist was talking to me, and telling me what they were doing. I mentioned that I hadn’t even seen what the port looked like, so he took a picture of it and showed me. I asked if he could text it to me so that I had the picture for posterity. After much tugging and pulling, they informed me that since my uterus had now shrunk down, they were having trouble getting to where the catheter was attached to the uterus through the original incision near my belly button, so they were going to have to make a 3rd lower incision to get to it. I then smelled something that I hadn’t smelled in probably close to 20 years. It was the smell that was present when we branded the calves on the farm that I grew up on – it was the smell of burning flesh, only this time it was my own flesh. It was a surreal experience, especially given all that I’d just been through. As I continued to feel them tug and yank on my insides, the anesthesiologist had to have me take some concerted deep breaths. With the epidural having to come up so high to cover the area where the port had been placed, my breathing was impacted and my blood oxygen level would drop if I didn’t focus on breathing. As they were finishing up, I started to feel the sensation of temperature again, so they finished up just in the nick of time as the epidural began to wear off. By the time they finished and were ready to move me back to my room, the epidural had worn off enough that I could already lift my legs again. The surgery had taken about an hour and a half, about twice as long as they’d expected.

Amnioport being removed during surgery

I was wheeled back to my room where Mike and Daniel were waiting. I’m glad that Mike got this time alone with his son. The details are a blur, but we were told about various options that were available to us – there was an organization that could send out a photographer to take pictures, we could take hand and foot prints, they could take a mold of his hands and feet, we could bathe him and weigh him, the chaplain would come and visit us, as would the social worker, I’d get a consult from the lactation specialist to talk to me about my milk coming in. All of this was overwhelming, but we figured we should take advantage of everything that was offered.

It was the middle of the night as we set about capturing what would be our only mementos and proof that Daniel had in fact graced this earth. They started with the handprints and footprints, and then did plaster casts of his hands and feet. Then we bathed him. It was a strange experience to bathe our dead son – the one who just hours prior was alive inside of me. They weighed and measured him – he was 1lb 10oz, and 14” long. Because he was so premature he had no baby fat, so he really did look like a little adult as opposed to a baby. You could see the definition of his muscles on his legs. He had big thighs and well defined calves, just like Mike. He had big “hobbit” feet just like Mike. His fingers were long and slender though, like mine. And he definitely had Mike’s nose. Seeing so much of Mike in him and being able to recognize it, even at this prematurity, really made it hit home that this was our son.

Reunited after surgery

Preparing to take a mold of Daniel's hands

Bathing Daniel

Bathing Daniel

Eventually we tried to get some sleep, but as would be the case for that night and the next, I was afraid of sleep. I knew that I only had a limited amount of time left with Daniel, and I didn’t want to waste it sleeping. I was holding him on my chest tucked under my hospital gown, and I found that if I drifted off to sleep I would awake again very quickly. In the morning we found out that the photographers from Now I Lay Me Down To Sleep (NILMDTS) weren’t available that day, but that the hospital staff had been trained on how to take photographs, and so they could take the photos and then NILMDTS could do the retouching and editing of the photos. I’m so grateful that this organization exists and that they’re educating hospitals and medical professionals on the importance of capturing these precious memories of a lost baby. We also received a care package from NILMDTS that included several items – a swaddle, some tiny cloth diapers, knitted booties, hat, and blanket, some small teddy bears, matching bracelets for baby and mom, and some books related to grief and losing a baby, including Three Minus One, a collection of short stories and poems written by other mothers who have lost babies to miscarriage, stillbirth, and neonatal death which I found to be very helpful. Several of the items in the care package were made and donated by other families who had lost a baby, which was very touching. Here are the retouched photos that we got from Now I Lay Me Down To Sleep.

Throughout the day we met with other staff too – the social worker came and gave us information on funeral homes and alike, and told us what the process would be. We were told that Newcomer Funeral Home offered their services free of charge for parents in our situation – I thought that this was very compassionate of them. We met with Krysta, the Chaplain. Since I’m not religious and in fact consider myself to be an atheist, I was rather doubtful about what this meeting would yield, but it turned out to be very helpful. Krysta respected our own level of spirituality, and we talked about nature and the spirituality that we find there. After talking to us for a while she offered to say a blessing over Daniel the next day before we left, and we agreed.

The rest of the day was really about spending as much time with Daniel as possible. While I’d originally thought that seeing him or spending time with him would make things harder, I saw then and now how crucial this was to the grieving process. This was the only time we’d get with him, and I didn’t want to waste a minute of it. If I had to go to the bathroom or something, I wanted Mike to be holding him – I didn’t want him to be alone even for a minute. As the day faded and we entered our second night with him, I started to feel panicked and distraught about how I was going to leave him the next morning. I just didn’t know how that was going to be possible – it was like I wanted this time I had with him to never end. We’d been one for over 25 weeks, but the next day I was going to have to walk out of the hospital without him, and I didn’t know how I was going to be able to do that. That night the nurse who’d been in charge during Daniel’s birth, Jamie, was back on shift. She spent quite a long time sitting and talking with us, trying to console me. I’m so appreciative of her empathy and compassion. Once again I was awake for most of the night, afraid of losing to sleep the limited time I had left with Daniel. I knew Jamie would go off shift at 6am, so I made sure to use my call button to call her in before she went off shift to thank her for everything that she’d done for us. As horrible as the whole experience of losing Daniel was, we were surrounded by some incredibly warm and caring professionals, and for that I’m eternally grateful.

On Thursday morning we set about our final morning with Daniel. The nurse responsible for me was the same nurse I’d had the day I had surgery – Lakeisha, or Keisha as she liked to be called. I asked her if when it came time for us to leave, whether she would hold Daniel, as I wanted someone to hold him, I didn’t want him to be alone when we left. She agreed to do that for us.

I filled in the paperwork necessary to register Daniel for a birth certificate. Months ago we’d talked about Liam as a middle name, but after he died we were thinking of not giving him a middle name. Then it was Mike who suggested we give him my Dad’s name as a middle name. My Dad died in January of 2014, and so I like to think that Daniel is with him and that they’re together and my Dad is reading stories to him and giving him whisker rubs. I was really touched by this suggestion, and it just seemed right, so we filled out the paperwork and officially named him Daniel Hamish Deitchman.

Mid morning Krysta, the Chaplain, returned to say a blessing. The blessing that she chose couldn’t have been more perfect I don’t think – it was a poem by John O’Donohue:

Though we need to weep your loss,
You dwell in that safe place in our hearts,
Where no storm or night or pain can reach you.
Your life was like the dawn
Brightening over our lives
Awakening beneath the dark
A further adventure of color.
Though your moments here were brief,
Your spirit was live, awake, complete.
Now you dwell inside the rhythm of breath,
As close to us as we are to ourselves.
May you continue to inspire us:
To enter each day with generous heart.
To serve the call of courage and love
Until the day we see your beautiful face again
In that land where there is no more separation,
Where all tears will be wiped from our mind,
And where we will never lose you again.

It in fact was so perfect that we asked her if she would return later in the day right before we left the hospital so that she could repeat the blessing. We ended up playing a couple of songs at that time as part of the blessing ceremony – Danny Boy by Johnny Cash, and Amazing Grace on the bagpipes. I asked Keisha if she would record the ceremony for us, and she did. I’ve gone back and listened to and watched the ceremony dozens of times since then, and I’m so thankful that we have it.

Daniel's Blessing from Joan Deitchman on Vimeo.

After the ceremony and after I’d completed the final paperwork I handed Daniel to Keisha and Krysta walked us out of the hospital. That was perhaps one of the hardest things that I’ve had to do in my life – walk away from my son forever.

In the days that followed, life was a surreal experience. I was consumed by grief, but the kindness of friends and family and coworkers helped to keep me afloat. Mike was my rock – taking care of things and just holding me. One of mother nature’s cruelest acts is causing a mother’s milk to come in after she has lost a baby. Not only was it painful physically, but it was as if mother nature was taunting me and pointing out my failure as a mother. Another cruelty was receiving in the mail some of the maternity clothes that I’d ordered just the week before, and all the targeted ads on Facebook for baby products and alike. There were a couple of birth announcement emails sent out at work in the weeks after Daniel’s birth, including one from the same day as Daniel – this just broke my heart, and to this day, seeing birth or pregnancy announcements breaks my heart, and I have great difficulty seeing pregnant coworkers.

On the other hand, many of my coworkers were very supportive. In particular, Mark was a constant source of support throughout my pregnancy as he’d ended up finding out very early on before the troubles began when we’d had lunch with a mutual friend who I told. His messages and attempts to brighten my days were so appreciated. I still have a yellow sticky note on one of my work monitors with a hand drawn smiling sun on it that he put there one day when he knew I’d received bad news. My boss was also extremely supportive throughout the ordeal. Other coworkers banded together to organize a meal train for us so we had meals delivered each night between when I left the hospital and when we left town. One of those coworkers, Kait, even included a hand drawn depiction of a scene from the blessing ceremony which we’ve framed and hung in our living room. There was an outpouring of support from our online friends as well, and we received many cards, flowers, and gifts from friends and family. Perhaps one of the most touching gifts was from an online friend who I’d only actually met once before. She sent us her son’s dog tag from the Marines – his name is Daniel. My sister in law also gave us a piece of artwork that she’d drawn – it was a drawing of Daniel’s footprints. It now hangs in an alcove in our bedroom along with a set of his handprints, a picture of the Northern Lights, some blocks that spell his name, and a teddy bear.

Kait's Drawing

Alcove in our bedroom dedicated to Daniel

A week after Daniel was born I had cupcakes sent to the Fetal Care Center at Children’s Hospital to thank the staff for their kindness and compassion throughout our ordeal. I couldn’t have asked for a better experience in terms of the care that we received throughout Daniel’s journey. The message I had included with the cupcakes was this: “To all of the staff at the Colorado Fetal Care Center – doctors, nurses, NICU staff, social worker, chaplain, administrative staff, and anyone else we’re missing – thank you so much for everything that you did for our Daniel. We’ll never forget your kindness, compassion, and tireless efforts to save his life. Thank you from the bottom of our hearts.”. The voicemail that I received back from Beth really touched me, and I’ve not deleted it from my phone. At the end of that week we returned to Aurora to pick up Daniel’s ashes, and on the way home we stopped by the hospital to pick up the mold of Daniel’s hands. We went inside and saw Keisha, Beth, and Krysta again, and it was very healing to see them and thank them again for everything that they’d done, and to give each of them a hug.

Mold of Daniel's hands

Mold of Daniel's hands

I was approved for 8 weeks of short term disability and medical leave, and I didn’t want to sit around home doing nothing for all that time. I decided that I wanted to do something to honor and remember Daniel. How often do you get 8 weeks off and the ability to do almost anything with it – in a way I viewed this time as a gift from Daniel. We had originally been going to go to Alberta in mid September to visit my siblings for a week, but with the complications of the pregnancy had thought we wouldn’t be able to go. I came up with the idea that we could actually drive up so that we could take Kona with us, and extend the trip and go to Alaska, a state that neither of us had been to before. Being in nature is very healing and soothing to me, so driving through the wilds of the northern part of Canada and Alaska sounded appealing. We ended up taking 4.5 weeks to do this road trip, and drove over 10,000 miles in the process passing through 11 US states, 4 Canadian provinces, and 1 Canadian territory. We visited a few friends along the way, and spent time with my family in Alberta and Mike’s brother and his family in North Dakota.

Perhaps the 2 most memorable parts of our trip though were getting to spread my Dad’s ashes along with some of Daniel’s ashes, and getting to see the northern lights. My Dad died in January of 2014, but our family had not been together since then to have a chance to spread his ashes. On September 24th my siblings and I spread our Dad’s ashes on Corkscrew Mountain overlooking Seven Mile Flats in the foothills of the Rocky Mountains in Alberta, Canada. He had worked in the area as a young man cutting down trees, and had requested that his ashes be spread here. It was a beautiful fall day, and we bushwhacked up the side of the mountain to find a small outcropping of rocks that provided a view over the flats, just as our Dad had requested. My brother read one of my Dad’s favorite poems – Robert Frost’s “Stopping By Woods on a Snowy Evening”:

Whose woods these are I think I know.
His house is in the village though;
He will not see me stopping here
To watch his woods fill up with snow.

My little horse must think it queer
To stop without a farmhouse near
Between the woods and frozen lake
The darkest evening of the year.

He gives his harness bells a shake
To ask if there is some mistake.
The only other sound’s the sweep
Of easy wind and downy flake.

The woods are lovely, dark and deep,
But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep.

After spreading my Dad’s ashes we then spread some of Daniel’s ashes with his, and played Daniel’s blessing ceremony. It was very emotional yet soothing to leave a small piece of Daniel with my Dad. These are the exact coordinates where we left them: https://maps.google.com/?q=51.989088,-115.322782&hl=en-US&gl=us

Corkscrew Mountain overlooking Seven Mile Flats

Corkscrew Mountain

After spreading my Dad’s and Daniel’s ashes, we spent 4 nights camping in Banff National Park. It was here that we got to see the Northern Lights. While I had seen the Northern Lights growing up in Alberta, Mike had never seen them before. The day after we saw them we found out that the Greenland indigenous people believe that the Northern Lights are the spirits of babies who died at birth. When I heard this it just seemed so perfect and beautiful – the notion that Daniel had danced in the skies above Banff for us, as if to tell us that he was ok. Another concept that makes me feel better when I look up into the night sky even here in Colorado is this Inuit proverb:

“Perhaps they are not stars,
But rather openings in Heaven,
Where the love of our lost ones pours through and shines down upon us to let us know they are happy.”

We’d only spread a small amount of Daniel’s ashes with my Dad, as we wanted to also spread some on Grays Peak, as well as keep some. On October 8th, the week we got back home from our road trip, we returned to Grays Peak, the Colorado 14er that we’d hiked just a week and a half before Daniel’s birth and death. Just as we’d done back in August, we got up at 2:30am so that we could be on the mountain early in the morning. There were far fewer people on the mountain this time though – in fact we were the 2nd car to arrive in the parking lot. It was peaceful and serene getting to hike up the mountain mostly in solitude. There was snow on the trail, and we once again got to watch the sunrise as we hiked. It was very emotional revisiting the mountain without Daniel – as we hiked I kept thinking back to that day in August when we’d hiked up the mountain together. As we finally crested the summit and I caught a glimpse of the 360deg view of mountain peaks all around us, I was overcome by emotion. We stayed on the summit for about an hour. Most of that time was by ourselves, but when someone reached the summit after we’d been there for a while I told him our story and asked him if he wouldn’t mind staying a bit longer and filming us as we spread Daniel’s ashes. It was very generous of this total stranger to share this moment with us and to capture it for us. His name was David Walker, and it turned out that he too was from Boulder. I read a poem that I had written, we spread some of Daniel’s ashes, and then we played the blessing ceremony from the hospital again. It was another perfect spot to remember and honor Daniel, and I’m sure that we will be returning here many times in the future, as it will always be Daniel’s mountain. Here’s the poem that I wrote for the occasion:

I Will Carry You Always
==================
A few short months ago I carried you up this mountain
It was a bright summer day, full of potential and life
I carried my hopes and dreams and aspirations for you
I carried my fears and worry and dread for you
I carried my undying love for you
I had carried you for 24 weeks – we were one
Little did I know then that we had only a week and a half left together
That day was to be our last big adventure out in the world
Me, carrying you in my womb as we ascended towards the heavens
Sharing the thin air with you
Watching the stars fade as the sun rose, feeling its warmth upon my face
Soaking in the natural beauty all around us
Thoughts of returning as a family in years to come flitting through my mind
Imagining you scrambling up these rocks on your own, vibrant and alive, laughing, smiling
Thoughts of other mountains, other adventures that we would share
Today I carry you up this mountain once more
You feel so much heavier though you are now just a small handful of ash
I feel heavier – my heart is heavy, my spirit is heavy
I feel weary – the energy and innocence of the past has drained from my body
My tears fall softly to the cold frozen ground
The season has turned
The life and warmth of summer have gone, as have you
The mountain is darker and colder, a reflection of my life without you
I yearn to feel your physical presence, to have you here with me
To hold you, to feel your soft skin upon my own
To gaze into your eyes – the ones that never opened but in a dream
To hear your heart beat – that sweet, strong rhythm that pounded in harmony with my own heart for so many weeks before it fell silent as you lay upon my chest
To see those perfect fingers and toes wriggle and squirm
To hear you cry, giggle, and laugh
But you are here no more, you are gone
All that remains is my broken heart, full of the shadows of memories never made
I ache for what could have, should have been
But within my heart there is a silent echo of yours – our hearts now beat together
So I carry you again, this day and every day to come, in my heart
We are one again, bound together for eternity
When the seasons turn once again, and warmth returns to this mountain, we will come back and bask in it together
For your spirit lives on here on this mountain, as it does within me
You will never be forgotten Daniel
My love for you will never die
I will carry you in my heart forever
I will carry you always

Sunrise on Grays Peak

Summit of Grays Peak

Summit of Grays Peak

Grays Peak in the background while descending the trail

Looking up the trail towards Grays Peak

Not a day goes by that I don’t think of Daniel. The grief ebbs and flows, and I’m sure that it will always be a part of me, just as he will always be a part of me. I truly believe that Daniel has made me a better person, and although I wish every day that we’d been given more time together, I’m grateful for the time that we did get. To quote Louise Erdrich:

“Life will break you. Nobody can protect you from that, and living alone won’t either, for solitude will also break you with its yearning. You have to love. You have to feel. It is the reason you are here on earth. You are here to risk your heart. You are here to be swallowed up. And when it happens that you are broken, or betrayed, or left, or hurt, or death brushes near, let yourself sit by an apple tree and listen to the apples falling all around you in heaps, wasting their sweetness. Tell yourself you tasted as many as you could.”

I will always love Daniel and I will never forget him – he is my son and I am his mother, today and for every day to come. Daniel’s life may have ended, but his impact on my life has just begun.

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One Response to Daniel’s Story

  1. Yvonne Linton says:

    What a story! I hope that someday you will share this with Daniel’s brother(s) or sister(s). You have really carried us through that painful journey. It brings back so many memories…I’m glad you didn’t stuff it like I did and shared his life with all of us.
    It makes him real…his life really mattered. While it was sad my ultrasound picture was thoughtlessly tossed in the trash can, I can now picture what it might have looked like.
    It’s odd how doctors used to try to protect us from pain like pretending something never happened. By the time I realized I was pregnant I was 3 months and never got to hear a heartbeat, so the loss was trivialized. But I think we have to walk through it to process it, just as you are. Continued best wishes in your healing journey. Daniel’s life had meaning and a purpose. And he mattered to many people and to God. May you feel His comfort.

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