I have just three very special stories of the journey into motherhood left for you. This one is important to my heart as it details the extra joys and challenges of growing into motherhood when one’s child is born prematurely (and any of you who have been reading this blog for some time know the heart I have for families who have premature babies and why!). Without further ado, here is the story of Sarah S for your inspiration in parenting and life:
I have always been a planner. When my husband and I wanted to start a family I hoped that we would be able to coincide our little one’s arrival with my summer vacation (as I worked with the Head Start program which follows our school district schedule). This would enable me to spend the summer plus an additional 3 months) at home. I felt good about being able to spend hopefully 5-6 months with our child before returning to work. I hoped that at some point I would be able to stay home (perhaps after the birth of another child in the future).
Getting pregnant was the easy part. The rest of the pregnancy could be described as eventful, nerve wracking and lastly, horrible. It pains me in a way to describe it as such, but it is the honest, if brutal truth. At first there were a few common issues that often do not interfere with a healthy pregnancy. But as the pregnancy progressed so did the problems – growth scans were ordered, frequent ultrasounds. We began to dread ultrasounds, which had once been such a cause for excitement and wonder were now a source of fear and anxiety, “What would they find next…”
At one point we met with one of the perinatologists (who was not our usual provider) and left that appointment with paperwork in hand about suspected skeletal dysplasia. When asked for more time to meet with the doctor (after meeting with the geneticist) we were hastily told by her that she had a schedule to keep and could not fall behind. This was a small breaking point for us. The next day after that dreadful appointment with the guest perinatologist my fluid started leaking or so I thought. Back to the doctors, then Labor and Delivery – four visits in 3 days overall. All said that the baby was low resting on my bladder; there was no rupture of membranes. I called my usual perinatologist and he disputed the “skeletal dysplasia” suspicion, he felt the baby was just small (basing this on my stature, I am 5’1”). He was calm and reassuring, but scheduled me for a two week follow-up. In the interim I continued working, had a wonderful visit from my mom and trusted my doctors. This is my one regret – I should have walked everyday into the doctor’s office and asked to be examined, I truly felt that this all couldn’t be normal.
At this next appointment I was 24.5 weeks pregnant. The ultrasound lasted for about one minute before the technician left the room to speak with the doctor. At this point our panic has skyrocketed. The doctor (our perinatologist) entered the room and told us that I had little fluid due to PROM (premature rupture of membrane). He told us he was sending us to the University Hospital in the nearest city (about 30 minutes away) to be admitted. WHAT? We teetered between anger, betrayal, frustration and despair. This whole appointment felt surreal. I remember the next minutes thinking about Monopoly and that card where you cannot pass go, cannot collect $200 – you have to go straight to jail. I know a weird analogy, but I could not go back to work to closeout any current projects, I could not go home to collect my things. It was not that the hospital was jail, but what was shocking was the absolute loss of control and any sense of normalcy. Thankfully I do remember the kindness and gentleness of my doctor as this new plan unfolded and he promised to meet us at the hospital at the end of the day.
Within an hour we were being admitted to the University Hospital on indefinite bedrest. What would follow was two weeks of lying in bed with ridiculous “moonboots” as I called them to help prevent blood clots. I had frequent monitoring sometimes in my hospital room and sometimes on the Labor and Delivery Floor. The irony of it all is that this “antepartum” group that I was a member of (although I never met any of these other ladies) shared the same floor as the “postpartum” group. The hospital did their best to keep “us” from being to near the newly expanded celebrating families but we often heard the jubilant gatherings of new moms, dads, aunts, uncles and grandparents. The nurses were kind and wonderful and we started a calendar countdown with the hope of getting to at least 32 weeks.
The emotions of this experience were such a range of both positive and negative. There were the constant shadows of impending infection, fetal distress, and prematurity statistics. Yet there was also the sweetest man sleeping across the room in what must have been the most uncomfortable cot-like bench/bed. We joked that we were now living in an amazing downtown penthouse (we were on the top floor – the 14th of the hospital overlooking downtown Portland). We listened to music at night while I would read or play Sudoku and he would catch up with work. During the day he would call frequently to check in with me. Family and many friends rallied around us to support us and hold us close to their hearts giving us strength and hope.
Two weeks and one day after being admitted our son made his entry into the world after ongoing fetal distress necessitated an emergency c-section. Our son was born at 5:52am weighing 1 pound 15 ounces and 12.5” long. This was not the birth story that I imagined for our son, but it is his and I cherish it.
Over the next 4 months our son remained hospitalized in the NICU battling often for his life and eventually overcoming each challenge. He faced typical issues of prematurity and then some more complex issues due to underdeveloped lungs (due to the PROM – premature rupture of membranes). We were holding onto hope, to what the doctors described as “cautiously optimistic.” At 45 days old I held him for the first time, and at 50 days it was my husband’s turn. The delay was due to a serious infection (pneumonia) that left our son riding the ventilator hooked up to a blend of oxygen and nitric oxide for four weeks.
One day weeks later we arrived to find him bathed and in his first outfit (they were about 6 months too large). Our look of astonishment with a hint of sadness signaled to the nurse that unknowing to her we had missed these first firsts. But we persevered and with the gentle encouragement and support of our primary nurses we soon began our own memories of firsts with our son. His first adventure from the NICU was to be wheeled to the adjoining Children’s Hospital for double hernia surgery. Another jittery day ensued but he pulled through with his typical resiliency.
Our son was discharged at 115 days old with supplemental oxygen and a feeding tube. The following weeks and months were filled with doctor’s appointments, food diaries, feeding therapy & evaluations, and early intervention assessments and therapy sessions. But there were also the experiences of any first time parents – sleepless nights, tender moments and plenty of cuddling. Fortunately our son no longer needed a feeding tube after about 7 weeks but his need for supplemental oxygen persisted past his first birthday. But that too eventually went away and now at almost 3 and a half years old there is only more subtle evidence of his prematurity. He is small for his age and has some texture issues specifically with some foods; he still drinks a high calorie formula from a bottle.
Around his first birthday I was able to really come to terms with the events of his prematurity, moving from the mentality of “Why us?” to “Why not us?” I don’t believe it was a test or that the challenge was given to us because we could handle it. Rather prematurity happens to a lot of children and families (12%) and we are so thankful that we live in a place where a combination of faith and science provided our son with the opportunity to not only survive but thrive. This way of thinking has also enabled me to come to terms with the guilt that is often associated with prematurity. Even though in our hearts we knew we did nothing to cause this, the guilt of our son’s experience haunted us. Letting this go and operating from a framework of gratitude has been pivotal, as well as understanding that it is sometimes our own expectations that can hold us captive and unable to move in a different (not less than but perhaps unexpected) direction.
Our son has in some ways had such a tumultuous and busy start to his life but in other ways there are unforeseen blessings that his prematurity has brought us. The isolation that we needed to maintain for 2 plus years necessitated that I be a stay at home mom. It also afforded me the opportunity to be the mom that my son needed (the primary caregiver who helped him with physical and occupational therapy, able to pump breast milk for 27 months, introduce solids in a much different and slower manner than typical). This has been a most welcome change to the original plan because I cannot imagine having to have been apart from our son these past few years.
We truly believe that the attachment that has developed supported by my being home has and will continue to blunt the consequences of his prematurity and low birth weight. His prematurity has truly altered our family’s vision of what is most important. We have removed ourselves from a lot of what is trendy, popular or competitive in parenting and have instead sought refuge and advice in more time tested, family and earth friendly, natural parenting and play. We are simply home so much more than I would have ever planned and it provides such a comfortable environment for everyone in our family to grow.
Sarah, so many, many blessings to you, your son, your family. Thank you so much for sharing your story and providing hope and inspiration to all of us.
Many blessings to you dear reader as well.