This year I will walk in the March for Babies for the 9th time, 10 years after I lost my first daughter Josie. One stupid extra copy of her 18th chromosome was the difference between life and death, one stupid extra copy of something you can only see with a microscope, changed my life and who I am, forever. Losing Josie was my inspiration to do something for others, to make her life mean something. To make it "okay" to talk about my baby girl who would never take a step, never eat birthday cake, never go to pre- school or ride a bike. In this journey of grief, this unforgiving and desolate journey without a destination, I have met so many amazing parents, mostly moms who have overcome the worst possible outcomes of prematurity, birth defects and infant loss. I have cried while reading their stories, I have sent virtual love and hugs, and I have had the pleasure of meeting them, giving them real hugs and crying with them at my side. I found my safe place, I found my people, and I carry their stories in my heart every year when I walk, with my Angel baby in my heart and my Rainbow by my side.
This year, it will be different. This year, I experienced a story as it unfolded, as one of my very best friends, who is more like family, had to deliver her first baby at 27 weeks, because of pre-eclampsia and HELLP syndrome. She and her husband were in Seattle for their "baby moon" visiting family and exploring the sights. It was to be their last trip just the two of them before they welcomed their much anticipated and very much wanted baby whose gender was to be a surprise. (Much to the chagrin of friends like me who were just beside themselves wanting to know!) Unfortunately, they wouldn't have to wait until June for the gender reveal, as their vacation took an unanticipated and scary detour.
It started early in the morning on Thursday March 9th- she had some lower back pain making it hard for her to stay asleep. So, she got a heating pad, tried to stretch out, did all the things anyone would do. She reported her symptoms to her Aunt-in-law, who is a nurse, who made some calls and suggested she get checked out. The hospital she visited began checking vitals and her BP was too high to be safe. They kept her overnight for observation and her 24 hr urine test revealed protein and her blood work was abnormal- pre-eclampsia. When I first heard there was a chance they wouldn't be home in time (of all things they were worried about us keeping their dog for some extra days!) I was only told that her BP was high- my first questions to my fiance- "is there protein in her urine? How high is the BP? Did they do blood work yet? How are the platelets?" I'm not going to lie- I didn't exactly know what platelets were I just knew they were important. My fiance looked at me like I was crazy- "why on earth would I ask my friend about his wife's urine?" Oh how blissful ignorance can truly be......
We were content to keep her doggy safe, (we have 4 whats one more?) and prepare for the worst and hope for the best. I kept thinking, maybe its just the elevation, she was out running around too much, she was just too busy and over tired. I should have known better as she is a very active and healthy person. When she began her quest to become a mother it was suggested she reduce her sugar/carbs and exercise a little more. She willingly did so, and her husband joined her in solidarity. They joined a gym, went to classes, changed their eating habits etc. *snap* She was pregnant and ecstatic. She continued to maintain her healthy diet, lifestyle and exercise program with modifications when necessary. She looked and felt amazing after the morning sickness was gone and was enjoying herself. Her OB cleared her for travel, she did everything she was suppose to, by the book, like so many of us do, who want healthy full term babies.
Later, my fiance and male friends asked, "what does pre-eclampsia do? how do they fix it?" I almost chuckled, not out of real amusement but just how unknown of an issue that it is if you haven't gone through it. To quote a wise woman "it sucks is what it does." "well how do they fix it?" This time, I choked up- " the baby has to be delivered." "Really, there's nothing else? How is that possible." I returned their serious faces and said, "its why I do what I do. Its why I fund raise, its why I walk, to stop this, so that people don't have to go through this."
~Meanwhile back in Seattle~
Patti was given steroids for the baby's lungs "just in case." They immediately began magnesium before they transferred her to a hospital with a level 4 NICU and high risk ob department. Once there she received her second dose of steroids and was told that their goal for baby was 28 weeks. On Sunday, she felt amazing, she was telling her husband that she was completely healed, they were going to let her go home. As it turns out, that was the steroids talking, masking her real and serious pain. On Monday morning everything was different, her BP was high, she was back on magnesium, getting small quick bursts of fentanyl to ease her pain. Initially, they scheduled her C-Section for 3:00pm that day, but was moved up to 11am due to her pain, her terrible bloodwork and platelets; her liver was beginning to fail. On Monday morning at 11:35am, baby Jeffrey Scott was delivered at 27w1d, weighing 1lb, 15 oz, 12 inches. His dad was over the moon!! He had been sure that his baby boy was actually a girl, so when he saw that he had a son he absolutely lost it! He yelled and cried and was elated with their surprise. Baby Jeffrey was stable enough for pictures and for mom to see him before being taken to the NICU for CPAP. She would later find out that he actually scored an 8 on the APGAR scale- an amazing little guy!!
I cried tears of joy, heartache and utter shock when I got his pictures. He was just like the tiny, NICU, micro-preemie pics I have seen over the years, just like all of my SYS freinds' babies, but it was different this time. Different because I wasn't standing there talking to the parent of the now "ok" pre-schooler, school age, or high school age child. I was helplessly watching this story unfold from 2000 miles away, knowing too much about all of this and desperately wanting to hug my friends and tell them it would be okay. I fielded all the questions from my fiance and other friends about Baby Jeffrey's odds, about how well he is doing, how he is a rockstar because he is not on a ventilator and he was able to see his mom and get his picture taken. He has maintained his rockstar status in the NICU, and is gaining weight, taking in breast milk, able to breathe normal air, on lowest level of CPAP on his two week birthday.
When I finally got to talk to my friend, as I was rifling through her home to find the clothes she needed to ship out to her, she told me the story, her story, this time. I was strong for some of it, and I found myself saying out loud everything that I type in response to the NICU moms who blog and post here on Share. Then she said what has always broken my heart the most, "my body failed me." It kills me a little that moms of preemies feel this way. I do understand the sentiment. I spent a good portion of my initial grieving for Josie scouring the internet for medical journals and studies, trying to confirm what I felt true in my heart, that it was my fault my baby was gone, my body, my ovum, my something that was responsible for the stupid extra chromosome that destroyed my life. I hope that someday she forgives her body and realizes she isn't to blame. I hope one day that all of our effort can find some sort of answer so that no more moms blame themselves for losing their babies or having them early.
This is why I walk in the March for Babies, to end prematurity, to end infant loss. This year, I walk for Jeffrey Scott, because its killing me to watch his parents go through this, in separate homes 2000 miles away from each other. As with most micro-preemies, he is not projected to come home until his due date,at the earliest, which is June 11th. Currently, he has joined the 2lb club, was off CPAP for a bit but was put back on, has had two blood transfusions but no other "events," he is stable (or a rockstar as his adoring public calls him!) His Dad has returned home for work, and will continue traveling back and forth as much as he can, until Jeffrey is strong enough to travel home, (and get snuggles from me!) In the meantime, we will continue to send care packages, emails, calls and texts full of love and well wishes. I am dedicating my walk to Jeffrey so that our friends and family can have an example of why the March of Dimes is so important and instrumental in saving the lives of babies born too soon, while researching the ways to get them to 40 weeks. Jeffrey Scott, at 1lb 15 oz and only 12 inches long, at 27 weeks gestation; he is why I walk in the March for Babies.
Abbey and I at March for Babies
Patti, Russ and baby Jeffrey, their first family photo. Cherished, yet not how they imagined it would be.
It has been amazing to watch their story unfold just as ours had. I really hope the best possible outcome for your friends and baby Jeffrey. I'm sure she feels so lucky to have you on her side
I hope baby Jeffrey continues to do well in the NICU. I'm sure your friend really appreciates having your support and understanding right now. Please keep us posted on how he is doing. I will keep your friend in my thoughts.
Wow. Tears. Amazing. Not only your sweet story but now your friends and how you have been personally touched once again. You have such a sweet voice with words and can tell something so perfectly. When I delivered Lincoln I was 5 hours from home. I can't imagine 2000 miles. I will continue to pray for baby Jeffrey to grow and thrive and to head home soon. Hugs my friend.
I love you and your heart! Thank you for all you do!
Wow... what a story about your friends and their baby. I hope he continues to be a rockstar.
You are a true friend to Patti, and a rockstar yourself for babies. As hard as it is to be an angel mom, you have found a way to make a difference in others' lives.
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