Wow, so I thought when I started this blog that I would have so much to write about.  Well that is true, but graduate school, full time work, 3 children and a decidedly undomesticated husband have left little time to write about it! I've finished two of the three years of my program in child development and the next two semesters will be for my internship only! Can't wait.  I am really blessed to have been granted approval to spend the next year working on the validation and piloting of a behaviorally based feeding assessment for preterm infants that I developed several years back but had not, until now, any time to properly research.  I'd promise to write a whole post about it soon but, well, you know how unlikely that is from my history!  But I will try to take time soon.  It is a great project and definitely would fill a gap that exists in practice and the literature.  NICU's don't know how to support an infant's emerging feeding abilities, they want to measure things like how many milliliters the baby took, regardless of what it cost the baby behaviorally to do so.  So I'm giving them a way to measure what matters, the infant's own capacity and threshold for challenges. 5ml taken well with regulated body movements, breathing, etc... is way better in the short and long term than forcing a baby to take an entire bottle after which he is exhausted and limp, or worse, telling a mother that the nurse will supplement her breastfeeding effort "just in case". My feeding assessment also provides a meaningful measure of how regulating breast feeding in tiny babies is (not hard work at all!) and provides support for the notion that the infant is an active participant in his own nurturance - when a NICU forgets this, babies and parents suffer.  Wish me luck!!!

I'm not just singing to the choir OR our best ain't good enough

I met 28-week Jasmine first, observed her powerful efforts to keep her tiny, one and a half pound body tucked, arms and legs folded in close for security as if trying to recreate her experience in the womb where she’d been just hours earlier. The sounds of the bright and busy intensive care nursery, the breathing apparatus, the lines and unwieldy diaper she wore, all weighed on her attempts to find a comfortable moment for rest. Her nurse that day generously responded to my suggestion to encourage Jasmine to quiet her movements by adjusting her blankets, rearranging her equipment, and quieting the room so that Jasmine could rest while being softly supported in a tucked posture. Jasmine grasped my finger tightly as her nurse gently adjusted her blankets, and then fell into a quiet, relaxed sleep. I headed down the hall to the post-partum unit to meet her parents. Tina and Jason greeted me hesitantly; their anxiety that I might bring unwelcome news of their newly born baby girl somewhat relieved as I introduced myself and congratulated them on the arrival of their amazingly strong and engaging baby. Tina, recovering from emergency surgery due to placental abruption, pre-eclampsia, and having not yet seen her baby, smiled weakly to my account of Jasmine’s behavior. As the days turned into weeks, Jasmine and her parents spent many hours together, somehow managing a bright attitude despite the lasting effects of pre-eclampsia damage to Tina’s body, the unexpected infection that put Jasmine on a breathing machine for a short time, and the difficulty of spending hours with little privacy or comfort. Along the way, I spent time with Jasmine and her family, guiding and encouraging them in their developing roles. I experienced satisfaction that Tina and Jason felt safe to share their worries, frustrations and hope during our times together. I managed effectively to advocate for a quieter room and a number of nurses invested in this family regularly cared for them. Despite these good efforts, I am left with the challenge of “was it good enough”? far too often. As typically occurs in so many instances, the earlier appreciation of the baby’s need for a supportive environment in which her abilities emerge, gives way to the hope that pushing the baby to “take a bottle” will result in an earlier transition to home. Despite what I felt had been a particularly successful process in providing this family the foundation to navigate past the typical obstacles, the forces of habit and NICU culture prevailed. Ultimately, Tina and Jason took Jasmine home healthy yet, breast-feeding abandoned. Furthermore, I know they experienced undo pain and plenty of conflicting messages as to their competency as parents along the way. The story of one family continues on long past "discharge"; the chapter of time when I get the privilege to walk along with them carries a great deal of joy yet also, the burden of always wanting and needing to do more with the little time that is given. Families who must endure the NICU deserve better. Evidence and logic demand it. While there are many who sing the same song, there is much work to be done.

*names and details have been changed to protect privacy*

A mother of a birth story - love and pain

As I begin to write, I am honestly not sure if I can remember all of the details. Sad as it is to say, the memory of my daughter's birth brings a rush of emotion: grief, shame, regret...yet also love for her and gratitude that from this life-changing event, many good things have flowered from the bad.

After our son's first birthday, I cautiously considered the hope of having another child. Back during the time of our infertility, I had often stated that I really thought that if I could only get pregnant once, my body would figure out how to do it again. Was it okay to greedily wish for another child? I pondered this and whether I had the guts to get back on the fertility roller coaster. I remember making a very conscious decision one day that, yes! my desire for another child was too great to be denied. I made an appointment to get a referral for the reproductive endocrinologist immediately. I believe I was actually one day pregnant the day of that visit. Lesson #1: My intuitions should be respected and that positive decisive thought is powerful .

I continued my prenatal care with my previous OB and once again enjoyed a delightful pregnancy. Co-workers lovingly informed me that I was "soo beautiful last time, this time, no". Apparently this was their kind way of suggesting this baby would be a girl. ???? It didn't matter, I felt beautiful. I also assumed that I would try again for a natural vaginal birth. Of course. At one of my later prenatal visits my doc asked me when I wanted to schedule the c-section. Literally my jaw dropped. That was completely out of left field in my reality. I had NO IDEA that vaginal birth after cesarean (VBAC) was even an official "thing" or that some hospitals or doctors were unsupportive. How the f did that escape my radar? After all, I do work in the maternal-child healthcare industry. I had already forced my husband to go to a refresher Bradley class and now I decided to look into a doula. I interviewed a newly practicing doula who was affordable. She was nice enough. I didn't know what I should be looking for but I knew I'd gone to the hospital much too soon last time and I wanted to avoid doing that again. I knew that I was a "wimp" about pain and that for sure the hard and fast labor from before wouldn't happen again. All labors are different. This time would go according to plan. Ugh. I didn't do ANY emotional work. Also late in our relationship my doula "disclosed" that she'd had a traumatic medical experience at the hospital I was going to deliver in (the same place as #1). This turned out to be a rather important factor. Lesson #2: Pay attention to that voice inside no matter how muffled she may sound and DO the emotional work, be ready for everything.

Two years to the day of my son's birth, I went into labor, 4 days before my due date. The labor came fast and hard. I called the doula. She arrived. I didn't know what to do, neither did she. We went to the hospital right away. The sun was blinding me as sharply as the labor pains on the way there. I arrived to the same Triage space, the nurse yelled at me to stop moaning, to get out of the bathroom, to wait on that damn cot and put the monitor on. I couldn't take it. It was the same day, it was the same. The same! I begged for the epidural. The doula looked frightened. I went to a labor room. Everyone left. A young doctor stabbed my back 20 times. A nurse yelled at me to "be still". I was in transition. "Stop trying to put the needle in my back, I want to push". "Be still!!!". Epidural finally in. Doctor on call checks me. 10 cm. Yeah. I'm numb. "PUSH". I can't feel anything. The doula is silent. We have to put in an internal monitor. Baby's heart rate is dropping a bit with contractions. "You can't do it". Consent to c-section. No rush to OR. Baby is born, apgars 9 and 9. Swaddled baby flashed in my face. "she's pretty". It's a girl? tsk, tsk, so much scar tissue.

The next few hours after that are lost to me. I just remember being in the maternity ward with my baby and trying to nurse her. She couldn't latch quite right, just like her brother. At one point a nurse came to give her a bath and despite my request to do so in the room with me, she took her out for the bath. An hour later I called to find out where my baby was. "Oh she was a bit cold so we put her under the warmer". ???? Please bring me my baby, I pleaded. Another hour later I threw a temper tantrum to get my daughter back. She still couldn't nurse, who knows, but I'm sure she got a bottle while she was gone. Suddenly, I was in excruciating pain. I called for the nurse who gave me serious pain meds. The on-call doctor who did the section came by and whispered to my husband, "I hope you don't plan on having any more children...lots of scar tissue". The pain continued to worsen so around midnight I was taken to radiology and a probe was placed in my back into my right kidney and snaked through to where my ureter was supposed to be. The ureter connects the kidney to the bladder. I was watching the probe on the x-ray monitor and could see the probe and barium progress through my kidney, through the upper part of my ureter to....nothing. Empty space. The doctors had told me that they suspected there was a "stitch" in my ureter. I could clearly see there was no stitch - it had been severed. But I played along with their "stitch" game. Went down for a horrible procedure to try and "unplug" the ureter by going through my urethra and bladder. No luck. duh. So a drain was placed in my back to keep my kidney from shutting down by allowing my urine to drain and collect into a plastic bag strapped to my thigh. I was also unable to nurse my daughter for 10 hours because of the barium.

I went home with the kidney drain, a constantly leaking urine bag on my leg, the c-section wound, a dislocated tailbone (somehow I popped my tailbone out during one of the really strong contractions), a small, barely nursing baby, a two-year old and the promise of another major abdominal surgery in 6 weeks to repair my ureter.

I was determined to nurse my baby and we worked diligently at it for 4 weeks before she was able to do it very well. At six weeks, I went to a different hospital for the repair. I insisted on taking and keeping my baby with me. I had to check and double check many times to make sure that all medications given would be compatible with breast feeding. Nurses admonished me for bringing "that" baby into a dirty hospital, pain and discomfort was the norm but I was determined in a way I had never been before. For the first time in my life I didn't' give a DAMN what anyone else thought or wanted. After that surgery I had to have a catheter in my bladder (much worse than a drain in my back) for another 4 weeks. I was enormously depressed and in constant pain from my tailbone long after the other wounds healed. Through it all my daughter was the most lovely and quiet baby. It makes me cry in fear that she was like that because she couldn't afford to be all fussy and demanding. A sacrificial offering to her mommy. I told her one day a few months after I felt better, "honey you can cry and wail now if you want. Mommy feels better now". She just smiled and cooed gently. Unbelievably, I went back to work after 12 weeks of leave. I was nowhere near ready to do so physically or emotionally. Lesson #3: Be selfish, be determined, be good and kind to yourself - it's not selfish after all. You and your baby deserve a whole and healthy mommy.