Putting Together The Pieces

Owen had already been in the NICU for 5 months, to the day, to be exact.  He had just become the second oldest baby in the NICU and we had recently been warned that he may not be home before Thanksgiving, or even Christmas.  During this time, I typically ate my lunch as quickly as I could and then went back to Owen, he was hitting an age that he knew if I was gone and he would only settle for me.

On this particular day, the family room was quiet.  It was just me and one other couple who was quietly being debriefed by one of the surgeons. Their discussion wasn’t any of my business, so I choose the seat furthest away from them and focused on my food.  The surgeon left the room and then I heard the mother in the calmest, most matter of fact voice bravely explaining into the phone that their daughter was very sick.  Her intestines had perforated and she was just out of surgery.  She hung up the phone and the room was silent.

Typical Tatum fashion would have been to finish my lunch as quickly as possible and give them their privacy.  However, something overcame me and I heard myself say, “that’s the calmest I’ve ever heard anyone describe NEC”.  I let them know my son’s intestines had also perforated.  I showed pictures of how he swelled after the surgery and told them how he was doing now.  They explained to me that their 23 week 5 day twins were only one week old.  My heart sank.  I imagined how fragile she must be, never even having the time to stabilize after birth before getting so sick.

Even after our conversation ended, I couldn’t stop thinking about this family I had briefly talked with in the family room.  Two days later I ran into the parents in the hallway.  I cautiously asked how things were going.  The mother took a deep breath and told me that Angene had passed the day before.  We were nearly strangers, I didn’t even remember her name, but we looked at each other, both with tear filled eyes and I asked her if I could give her a hug.  I told her I would continue to pray for her son and we went our separate ways to our baby boys.

Over the next month, this mother and I rarely saw each other but I did figure out her name was Betsy and we bonded on a much lighter note; we are both Packer Fans and both of our boys donned lucky gear on game days.   A month after we first met, Owen was discharged from the NICU.  I thought about Betsy from time to time and we eventually connected on Facebook and through ANRC, we exchanged Christmas cards, but only casually kept in touch.

Fast forward to my bucket list and my admission that I was afraid to start quilting on my own.  Betsy sent me a private message and told me she would teach me.  Over the last three weeks we’ve gotten together three times to work on my quilt.  You would think, not really knowing each other and not seeing one another for almost a year and a half that there might be some awkwardness.  Nope.  Not with us.  By lunch time we were reminiscing about that first meeting and we were both wiping our eyes.  We also laughed and made fun of one another and discovered that she went to high school with my last serious boyfriend before Kyle and that I had lived in her husband’s hometown after college.

In many ways, it felt like we had known each other forever, but in reality, we only met when we needed to meet each other.  Betsy needed that hug that day and I needed to focus on someone else at that point.  Later, when I needed help, in a very different way, she came to return the hug.  And together, we put the pieces together and made a beautiful (even with its flaws) quilt.  Kellen thinks it’s his quilt and wants to take it to school, but I told him it’s too special.  I didn’t elaborate to him, but I will to you.

It’s my preemie mom quilt and a small example of the impact that Angene made in her short time here.

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What If…

I often feel as if I hang in the balance of the “what ifs”.

There are the “what ifs” that didn’t work out in Owen’s favor.

  • What if he hadn’t gotten CMV?  Maybe if I had chosen the unthinkable – to not breastfeed?  Would his course have been different? (You can read this story here)
  • What if I had been seeing a Maternal Fetal Medicine doctor from the start, maybe P17 and/or a cerclage would have helped me stay pregnant longer.
  • What if I had gone in one week earlier when it felt like Owen was kicking my tail bone?  Is that when my cervix started to thin?  Could I have still gotten a cerclage and stayed pregnant longer?
  • What if we had kept Kellen out of school Owen’s first winter home, would that have kept Owen healthier?  Could he be off oxygen today?
  • Kyle often thinks, what if he had helped me paint the boys room and rearrange the furniture – did I do something then?
  • My dad has wondered, what if I hadn’t been chasing Kellen and carrying him as he had a temper tantrum the day before I went into the hospital – did that start the labor?

There are also the “what ifs” that, thankfully did not happen.   Most notably:  what if he had died?

Is it logical for me to think about all these “what ifs”?  No, I know I can’t change what happened and I truly believe I did nothing that caused Owen’s early arrival.

Is it human nature to think about all these “what ifs”?  Yes.

For the most part, I focus on what’s happening and what is in front of me.  But, I will not apologize for the occasional “what if”.  I really can’t imagine that Owen will grow up never wondering how his life would be different had he not been born so soon.  I promise you, my 5’ 7” brother wonders if he would have been taller than his 5’ 10” sister, had he not been born too soon.

If I don’t acknowledge these thoughts exist –   If I do what so many people suggest, and “don’t think that way” (which is really just pretend they aren’t there) – how will I ever be able to help Owen work through his own, “what ifs”?

The feelings are real.  They won’t stop me from helping my son succeed and I can see in Owen that he won’t be stopped from succeeding.  But I do believe, it is okay to admit that the journey of life, is not quite the way I planned.

How to Observe Prematurity Awareness Month

According to the CDC, “each year, preterm birth affects nearly 500,000 babies—that’s 1 of every 8 infants born in the United States.  It is the most frequent cause of infant death, the leading cause of long-term neurological disabilities in children, and costs the U.S. health care system more than $26 billion each year.”

To most, that should be enough to explain why Prematurity Awareness Month is important.

To me, however, prematurity awareness month is also to help the world understand the individual stories of prematurity.  It’s to help people understand that prematurity doesn’t mean the baby just needs to stay in the hospital until he gets a little bigger and then he’ll, magically, by two, catch up to everyone else who had a birthday around his.

Last week as I was walking out of Kellen’s school with Owen, a special needs mother I had never met before mentioned that she’s been noticing Owen over time and was happy to see how big and strong he seems to getting.  We talked briefly, bonding as special needs moms who share a school that specializes in special needs and then she said, “he’s just a preemie?”  I know it was an innocent question, but what it felt like was another mom questioning my son’s special needs-ness.

Prematurity Awareness Month is helping people, like this woman, understand all of our stories.  It’s a month to help the world understand that each premature birth is different with different outcomes.  There are some 23 weekers that go on to have very few issues.  At the same time, there are some 35 weekers that go on to have significant issues.  The only assumption you can make is all premature births face risks.  Each year, 12 percent of newborns in the United States face those risks.  That is too many.

To put it into perspective, in the United States, each year 1.9 Million people are diagnosed with diabetes (American Diabetes Association); 900,000 people have a heart attack (CDC), there are 500,000 premature births (only includes live or considered viable births) and 230,000 people are diagnosed with breast cancer (CDC).  Premature births are one of the BIG health care concerns for this country.  However, too many people do not understand the risks and very real outcomes of premature birth.  Please be a trumpet for the cause and help the world understand that research to help prevent premature births is necessary.  Help them understand each of our stories.  Make everyone aware that there is no such thing as being “just a preemie”.

In honor of Prematurity Month, please participate in spreading the word.  Here are ways you can participate.

  • Keep the message up all month, but be loudest on November 17, World Prematurity Awareness Day.  I will be posting facts and statistics about prematurity on Facebook and Twitter throughout the month, feel free to share with your community.
  • Stay connected with the community on the World Prematurity Facebook page
  • In support of the month, March of Dimes is launching their new campaign “Healthy Babies are Worth the Wait” share the information with your community.  Follow the national and your regional (MN in link, there is one for each state) March of Dimes pages on Facebook and Twitter.  For those of you in MN, tag your tweets with #39WeeksMN.  If you live in another state, ask your regional office what their hashtag is.

Let’s unite as one big voice so we can help the world better understand each of our children’s journey and work to help reduce the number of premature births.

Why is Prematurity Awareness month important to you?

Managing a Babies Discomfort

There are some posts that I can’t start writing until Kyle goes to bed because I don’t want him to see me cry. It’s not that he hasn’t seen me cry, but sometimes crying is about healing and not about needing fixing and those types of cries, I like to do alone.

I’m not sure if the finished post will make readers cry, but it’s a topic that to me felt like the darkest, deepest depths of the bottom of this whole experience. I think about where we were a year ago and it still feels like I am getting punched in the gut. I won’t go into all the details in this post, but if you want to read about it in CaringBridge it’s the September 2nd post(you’ll need to scroll a little). I still can’t talk about those days without tears filling my eyes and I often get comments from others who seem haunted by that post.

For me, the hardest part was to watch Owen so clearly be uncomfortable. Inconsolable. Agitated. Always. He only slept in my arms. A few nights I stayed and I held him all night long in the recliner next to his bed. As I held him, he would splay out on my legs and I would bounce. My legs cramped or if I had to go to the bathroom; it didn’t matter. Except for during my lunch break, I bounced. While I bounced, I talked. Brainstorming with whoever would listen – what’s wrong, how can we help? Convinced it was reflux I hounded doctors, nurses, pharmacists, chaplains, social workers, whoever would listen to try him back on donor breast milk. I stayed later and later picking Kellen up from school at the last possible minute. I wanted to be nowhere but at the hospital. I hated leaving Owen and calling the night nurse to hear that he was agitated, restless and not sleeping…again. The Neonatolgist that knew Owen best told me at one point, “Tatum, I’ve had to tell you really difficult news before but for some reason, the hardest conversation I’ve had with you is about donor breast milk”. They could see the stress on my face and were starting to let me know they were worried about me.

Rightfully so, they worried – I was a wreck. I couldn’t articulate it at the time, but now I understand. When this same doctor had Owen on his sickest day, I was clearly upset and worried, but I was also very calm. I understood that what was going to happen was out of my hands – in that instance, there was nothing I could do to make Owen live. However, my son’s comfort and quality of life – managing his pain and fixing the causes – that felt like it should be controllable. I felt it was my job, as Owen’s mother, to make them fix it. I didn’t care how or whose idea, I just wanted it fixed. I knew I could keep him comfortable when he was in my arms and I knew there had to be something the doctors could do to make it more permanent. I was obsessed and relentless and exhausted.

In all fairness, the staff did their best to keep him comfortable and they all willingly participated in my brainstorms and were just as concerned about Owen as I was. At the end of the day, it was Owen who figured out a very dramatic way to communicate both root causes. He stopped breathing during feeds, two days in a row. The extent to which Owen wasn’t tolerating his feedings was very evident and the xrays to make sure it wasn’t more bowel issues happened to show some of the fractures.

For most people, the broken bones were the hardest part to learn and I agree – I had my first (and only) out-and-out meltdown at the NICU after learning about the bones. However, I believe it was just as much acid reflux as it was the fractures that was causing Owen discomfort. It wasn’t until after the Nissen surgery that we truly got our Owen back. After that surgery and its recovery, Owen finally slept again. We started to see his smile and his facial features returned to normal.

Look at Owen’s face in these three pictures. It was because of the significant facial changes that the doctors started suspecting horrific childhood genetic diseases. In the end, Owen’s been cleared of any of those diseases and no doctor feels he looks “syndromey” anymore. I’m not sure any doctor would go on record to agree it was pain that changed his face, but I find it very telling that we fixed the issues causing him discomfort and his facial features returned to the baby we knew.

To the people who met Owen more recently, it’s probably assumed that he’s always had his easy smile that warms the hearts of so many of us, but that’s not true. His smile is one that came hard-earned and I’m so glad that he uses it so willingly.

 

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Relentless Determination

Watching Owen work on his physical development has truly been inspirational. It somewhat reminds me of watching Kyle’s favorite movie, Miracle, when Herb Brooks, played by Kurt Russell, keeps blowing his whistle, “again…again…again” – working the team to their limits. The only difference is Owen’s not being punished by anyone and there is no coach blowing the whistle. For Owen, it comes from within and he is relentless.

I wish I had better pictures and video, but this several week old video is the best example of how Owen pushes himself until he can no longer stay up and then, he takes a short rest and gets right back up. Anytime that someone is not playing directly with Owen, this is what he’s doing.

Today, his work isn’t in trying to pull his legs under him, like in the video. Now, he is focused on crawling. He is so close and so driven that sometimes he starts crying because he gets frustrated that he’s not moving. It’s not a temper tantrum cry, it’s more of a battle cry. He’s willing himself to move. So far, he’s able do one full rotation – leg, leg, hand, hand – in forward motion. He doesn’t get it always, but I’ve seen him do it several times. My favorite part is that when he does do it, he often lies down on his side and claps his hands for himself.

As a parent, you feel like your job is to be the teacher. Owen’s got something you can’t teach, but it definitely inspires me to want to be a better person.

The Story of Kellen, Part II

Continued from The Story of Kellen, Part I

After getting me calmed down, the doctor left the room to call the hospital while I got dressed and called Kyle. As soon as I heard his voice, another sob escaped. He was standing with a group of colleagues and they said he instantly paled. I don’t think it’s the excuse that I gave him, but truth is, I was afraid to walk into the hospital by myself. We agreed to meet at the clinic and walk over together. As I waited for him to arrive, I made phone calls to work, my parents and my brothers.

We walked into labor and delivery together and the nurse was standing at the station waiting for me to arrive. She tilted her head a little and said, “Are you Tatum? I guess I thought you’d be in a wheelchair, or something”. Being my first labor, I didn’t realize that most women at 8 cm dilated weren’t walking around and having casual conversations. The nurse speculated that I must not be having contractions but learned differently when she hooked up the contraction monitor. She’d watch the ink printing on the paper and look at me and say, “You didn’t feel that?”
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The story of Kellen – Part One

I write a lot about Owen’s preeminess, but not nearly as much about Kellen being a preemie. The fact is, their stories are nearly impossible to relate. Kellen was star pupil 34 weeker that spent ten days in the hospital. His hospital stay felt like the world’s longest ten days, but as I compare them to any given ten days of Owen’s stay, they were pretty uneventful; bilirubin lights, NG (feeding tube through nose) as he learned to absorb food and waiting for my breast milk to come in enough that he could get all his nutrition from me. Once we left the hospital, we had a couple of nurse visits for the RSV protector, Synagis, and that was it from a medical stand point. Developmentally, Kellen tended to be more in line with his corrected age than his actual age, but he never needed therapies and by the time he started his current school at 16 months, a few of the teachers were surprised to learn that he was a preemie.

Kellen’s story is the ideal preemie story and not really the typical preemie story, even for a late-term preemie. I’m not sure we really appreciated how well he did until we started to meet other late-term preemie families in the NICU with Owen. 6lbs 2 oz is a very large 34 week baby and only ten days in the NICU is about as short as we’ve heard.

However, just like Owen’s relatively uneventful delivery did not predict an easy hospital stay, Kellen’s uneventful hospital stay was not preceded by an easy delivery. I’ve talked before about having “techno color memories” of some of the harder moments with Owen, but I also have those deeply engrained, fear filled memories with Kellen. I still think back to the hours leading up to his delivery and shake my head…how could it be?

I went to my regularly scheduled OB appointment on a Tuesday, exactly 34 weeks. It was found that I had some elevated protein in my urine, but my blood pressures looked great and I didn’t have excessive swelling so she assumed it was probably an UTI but also told me that I should be followed more closely since that could also be a sign of preeclampsia. I went home thinking I didn’t feel like I had a bladder infection, but took the antibiotics. The next morning, however, I did feel like I had a bladder infection and overall did not feel very well. Knowing I was on a preeclampsia watch, I called into work that day and stayed in bed. Thursday, I got up early and went to work at 6AM. Just before I left, I woke up Kyle and said, “keep your phone on you today, I’m going to call the doctor. Something just doesn’t feel right. Don’t worry, I’m not in labor, but I have a feeling I’m going to end up on bed rest” Once the doctor’s office opened, I called them and said, “this doesn’t feel like a bladder infection, I’m not having contractions, it’s a steady ache, but it hurts more than a bladder infection”. The nurse noted that my full lab results should be complete and so she checked them and said, “Your test came back negative, you don’t have an UTI. I think we should see you today”. I scheduled for the latest appointment they could give me, I had a lot going on at work and really feared the idea of bed rest.

My OB doesn’t work on Thursday so I saw another OB in the office. She listened to my story and told me I should have my cervix checked, “maybe you are starting to thin or dilate”. I laid on the table and will never ever forget the look of surprise on her face when she said, “you’re 8 cm” I stared at her and she stared down at me, with almost a confused look on her face. Clearly, that’s not what she expected to find. A woman in front of her that was showing no signs of laboring but she was nearly complete. She said, “let me check that again”. More confidently this time, she said, “yes, you are 8 cm dilated. You need to get next door to the hospital; your baby is coming today”. I stared at her filled with shock and fear and then I did what I have never spontaneously done before, or since – I felt the sob catch in my throat and instantly started to cry.

The worst case scenario was supposed to be bed rest; she wasn’t supposed to tell me that my baby was coming too soon. “Please, God, let him be okay.”

To Be Continued…

PS – sorry for the TBC, but this post got too long for anyone’s attention span to read in one day. I will post the rest of the story tomorrow.

90 Days of Blogging

I can’t believe it’s already been 90 days (as of Sunday) since I’ve made the shift from CaringBridge to this ANRC blog.  From what I can find, 90 days is the point in the blog world when you’re expected to stick it out and keep up with regular posting.  I’ve got to tell you, this 90 days has flown by and I’m having so much fun.

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