Many chose to document their infants’ birth stories in a blog, journal or baby book. This never really appealed to me. I can understand the reasons one might chose to do this, but if you asked me 2 years ago if I planned to detail the experience in writing, my answer would have been no. And honestly, after the fact, I didn’t give the actual birthing process a single thought until months later, and this was only because someone asked about it. All of the energy and attention required of me by the “after-birth” experience made the 24 hours leading up to her birth a distant, practically insignificant, foggy memory. Then, after some time passed, I wondered if it might be worthwhile, but I was still too close. I needed time. You see, and I know this will sound awful, but that was to date the worst time in my life.
Of course many of the best things in my life, as well as some good old perspective, came from that time. For one, Maryn, who is the strongest most delightfully spirited girl I’ve ever known. I am truly humbled and honored to be her parent. Second, I came to realize the depth and strength of my relationship with her father. Thirdly, I learned what an amazing support system we have around us. And finally, I learned that Christmas time is not a good time to have a baby in a hospital, especially if said child ends up in the NICU.
So, this “birth story” will be a bit of a departure from others in that it’s mostly about what happened after the big event. Disclaimer: I’m not a medical professional; I am writing about our experience- what we heard, lived, and felt. Even when it was happening it was difficult to remember the precise timeline of events, but I think this is pretty darn close. Also, you have fair warning; it’s a long story so it will likely be several posts.
inhale .... exhale .... okay, here we go ...
The first clue came around my 32nd week of pregnancy. My obstetrician, Dr. M, performed the ultrasound that week and noted that the baby’s head was large. At that time it wasn’t significant and this ultrasound was just to check for size and position. My pregnancy was uneventful and both Mike and I were large babies (both 9 pounds plus) with large heads, so, we figured little spud was going to be big. Due to the baby’s size, my Dr told me that she wouldn’t let me go beyond my due date.
By my appointment on Friday, December 19th, I was still only about a centimeter dilated. If nothing happened over the weekend I would come in early that next week. We walked into the hospital Monday night and I distinctly remember we almost got lost. Fortunately I had been paying closer attention than Mike during the tour given as part of the birthing class a month before. At that time I had no idea we’d soon know the ins and outs of this hospital better than most.
It turned out that I had been having Braxton Hicks contractions but didn’t realize this until they hooked me up to the monitor. They started the petocin a few hours later and I did a fairly good job of sleeping through the night. Dr. M. broke my water about 10 hours later and I quickly began to have much more painful contractions. I labored for 5-6 more hours before I decided on the epidural. I had hoped to delay this decision until I made it to 5 or 6 centimeters, and if I hadn’t been confined to my bed (I hadn’t expected to be) I know I could have fared better. I’ve since learned that one intervention typically opens the floodgates for more and this was definitely true in my case. The epidural went great. I hardly felt the needle and I was much more comfortable.
I was checked regularly throughout the day but the baby wasn’t progressing and neither was the dilation process. Dr. M and I had a talk, weighed the pros and cons and decided to proceed with a C-section. I hadn’t been married to the idea of natural birth and knowing what I know now, this really was the best course of action at the time. Preparations began within 20 minutes and I was in the operating room in no time.
There must have been 10 people in that room. It was surreal. Before the procedure began a flurry of small talk was exchanged about holiday plans and the weather. Everyone was excited about the upcoming festivities … I had forgotten that Christmas Eve was the next day.
Time stood still. I felt nervous, excited, and worried all at once and recognized the presence of the same on Mike’s face. Later, after lots of tugging I remember hearing Dr. M say, “Look at his head! It’s huge!” Various others chimed in with similar sentiments. “There is no way this baby would have made its way out any other way!” “Is it a boy?” I asked. No one heard me. “Is it a boy?” I said a little louder in Mike’s direction. He wasn’t sure. Then, about a minute later “It’s a girl!” A bit confused by the use of the male pronoun earlier, I asked “Are there two?“ “No, it’s a girl!”
December 23rd , 6:40pm SHE was here! I couldn’t believe it. I saw a quick peak of a little crying face over the sheet and then didn’t see her again for probably 30 minutes or so. Mike disappeared to the other side of the room, watching them take prints, clean her up, documenting it all with pictures. Apgars of 9 and 10 were reported --she was doing great! A single tear fell down the side of my face and then there was something in my eye… an eyelash perhaps, but I couldn’t wipe it as my arms were strapped down and no one was there to help.
I promptly got sick after being wheeled into the recovery room. I tried to warn the nurse but she was conversing with some other folk (Christmas plans AGAIN) and didn’t hear me until…well, you know. The anesthesiologist injected some medicine and my nausea quickly subsided. Eventually, after 20 minutes or so, most people left and the recovery room quieted down.
Maryn had her blood tested and her sugar levels were a bit off so she would need formula fairly soon. I held my sweet girl for the first time, we tried breastfeeding (no luck) and then I noticed a strange sound. While Mike was making phone calls letting everyone know we were doing well, I asked the nurse about her breathing. She thought it might be a little residual fluid and tried suctioning her a bit more. Afterwards she made a call and they decided to take her to the NICU to watch her overnight. “It’s probably nothing; we just want to make sure.” It was late so Mike and I retired to my room after the required 3 hours and fell asleep.
I woke up early like a kid at Christmas. My sweet little girl was across the hall and I couldn’t wait to see her. Maryn's first diagnosis came that morning after a consult with an ear, nose & throat doctor ... Laryngomalacia. Essentially the muscle tone around her voice box is weaker than normal which causes some noise, stridor, when she inhales. This condition could lead to complications if she were to acquire RSV or something similar, but generally is not a huge issue. While most cases of laryngomalacia clear up by 18 months of age or earlier as muscle tone improves, others require surgery, we’d just have to wait and see. She was immediately put on Reglan and Prevacid as a preventative measure for reflux (which typically occurs with this diagnosis). We later learned she did indeed have severe silent reflux which would also complicate the feeding process.
Due to the tone issue a Physical Therapist conducted a complete evaluation in the NICU and found that, yes, Maryn had low tone (hypotonia). Months later Maryn’s EI PT explained that everyone is born with muscle tone that falls somewhere on a spectrum. Mike is towards the higher tone side of average and I fall towards the lower tone side of average, but Maryn’s muscle tone is below this normal range. And while growth and physical activity can help, this only goes so far. These two conditions, however, would not by themselves have kept her in the NICU, but of course we found the rumors to be true… easy to get in, tough to get out.
Things quickly became foggy and frustrating. During the non-holiday season a Neonatologist (the Dr that ultimately decides when your child is ready to leave the NICU) would typically be in there for a week at a time, but now, with the holiday schedule, they rotated in and out every day or two. It quickly began to seem as though no one would give us definite discharge criteria, because they didn’t want to step on the toes of the Dr that would be there the next day.
Once it became obvious that she wasn’t eating like a champ right away, they wanted to keep her around. They needed to be sure she would be able to eat so that she would gain weight. I met with the lactation consultant and continued pumping every three hours. Even with the added formula and an initial weight of 9 pounds 4 ounces, she started to lose and her trouble negotiating the suck/swallow/breathe rhythm also had them concerned. It was thought this may be related to the low tone and that she should be seen by a speech language pathologist who specializes in feeding. The SLP thought her tone was likely impacting her feeding and that she might just need some time to get it together. She and/or her partner would continue to monitor her progress.
Due to her tone, large head and a small dimple under her nose (and one near the base of her spine) the neonatologist on duty that day pushed for an MRI. “You both have large heads so it’s not unusual that your baby has a large head, but head size in combination with the midline features could indicate other complications. It’s probably nothing.” There was that phrase again. Okay, no reason to get too alarmed, right? The MRI was scheduled for the day after Christmas. I was planning to accompany her, but they ended up leaving early so I missed them. Although I was still in the hospital, right across the hall from the NICU, but no one bothered to get me. GRR! Apparently they didn’t need to sedate her; she slept though the whole thing.
The next morning I knew we were in trouble when the hospital support person showed up at my door with the neonatologist of the day. They wanted to take us down to the radiologist’s office (on another floor of the hospital) because we could see a better picture of the MRI on his computer. Since I had just had major abdominal surgery a few days before they asked, “Would you like us to get you a wheel chair?” “Um, no, I’m fine (really, what was I thinking?).”
He didn’t have his own office; it was a cubicle. The 6 of us were crammed into a 6x6 space within a larger room made up of many cubicles each with their own large monitors but no people in front of them. The lone radiologist that day, he was seated at his monitors (yes, multiple) and we all stood behind him. He then proceeded to show us an MRI image of what he called a “typically formed infant brain” pointing out some of the structures.
Can you imagine the bottomless pit of terror I felt brewing deep in my gut at that moment? The anticipation of the horror that was sure to come after he finished detailing this “normal” image. Typing now, just shy of 2 years later, even after all that we’ve been through, and learned, even now, as a very different person, the echo of that pain can still be felt in my stomach.
“Now, this (he toggles to another window), is your daughter’s brain. She has complete Agenesis of the Corpus Collosum. It’s the main structure that allows the right and left hemispheres of the brain to talk to each other. It’s absent. It didn’t develop. She doesn’t have one and it won’t develop later.”
Now I know I’m going to faint, why did I not accept the wheelchair? But somehow I’m still standing.
In retrospect it makes me sad to think about the way we were told this news. Not that how it’s told can make it okay or less scary, but perhaps it could have felt less impersonal, distant and cold. No eye contact, just the back of his head and the back of the Dr and support person’s heads. They chose to bring us down to this cubicle ghost town under the auspice of a better monitor or a clearer scan, but I wonder now, was that really for our benefit?
Space becomes hazy and shaky as the neonatologist and the radiologist exchange dialog about the images. I’m hearing their words but very little registers. “Here you see the enlarged ventricles …blah blah blah... these can become larger in the absence of the CC.” Then Mike’s mom (who happened to be there when they came to get us so we invited her along) asked, “Does she have hydrocephalus?” “No” again more words floating in the room like obnoxious background noise. I don’t care about the medical terms, or the technical jargon. I’m wondering why they are talking so nonchalantly as if they’re discussing the strange weather we’re having. Are you serious? Don’t you feel it? Just now …the entire world is closing in. No one says anything about a prognosis. I immediately wonder what will this mean for our child? It must be bad if they aren’t even addressing it. Am I strong enough to hear it? I don’t ask. I’m thinking about this sweet little person upstairs that I just met, that I love, and I’m offended by the clarifying questions the Dr. has for the radiologist. She finds this interesting and I’m angry because this is not a seminar on brain structures and conditions, this is Maryn’s brain that they’re examining and her life that’s in the balance and they don’t have any business being a part of it.
The Dr and support person walk us back to my room. They give us hugs, say they are so sorry, this is such a rare condition and that it didn’t happen because of anything that I did or didn’t do. They say they can tell we’re good parents already, and they are so sorry. They tell us we can find information about her condition on the Internet. They will forward information about a listserv at the University of Maine that will be helpful. And then they leave. Trish decides to go see Maryn in the NICU to give us some time. Mike jumps online and what he finds isn’t encouraging. We went to see Maryn, but no more than two people were permitted to visit at once so we switched off. I remember holding her, choking back tears, trying to focus on the love I felt instead of the fear and grief.
My OB came to see me a little later. She sat and talked with Mike and me in my hospital room. She was calming, sweet, and thoughtful with her words. She said that all parents are saddled with fear and worry at some point in the parenting journey, but that it usually comes much later and that it’s unfair that it’s our introduction to the role.
I don’t really remember much about the rest of the day. I know we largely stopped making phone calls. Having to continually relay scary information that we didn’t yet fully understand and that seemed to be constantly compounding was exhausting. My sister and Mike’s mother took on those roles while we continued to plug through.
Feeding issues continued to be a problem. Mike and I did our best to be there for each and every feeding (although we missed a couple of the overnight sessions). We would read to her and hold her and rock her. Honestly it was more difficult to get her to breastfeed (vs bottle feeding) at the beginning. She would fatigue quickly and because we knew she must gain weight to leave, we opted for the bottle of breast milk. Again, it’s sad to think we felt pushed into that decision, but our priority was getting her home. We planned to continue trying breastfeeding once we were in a more comfortable less stressful environment.
After that it was like a revolving door of specialists. We didn’t know who was coming to see her and when, they would just show up -Cardiologist, Gastroenterologist, Urologist, Endocrinologist, Neurologist, Neurosurgeon, Geneticist. Some we met, some we didn’t. And the therapists were still coming too. They were now checking anything and everything. ACC can happen in isolation, but often additional issues accompany it including some syndromes. Due to the way the body and organs form in utero this missing midline structure of the brain calls the health of all other midline organs of the body into question. A plethora of tests were ordered including an EKG, EEG, ultrasounds, bloodwork to check chromosomes, bloodwork to check thyroid function, X-rays, and a spinal MRI.
....to be continued
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