Support Groups vs. Support Hose

Honestly folks I swear that I never thought I was the kind of person who would need a support group. I really figured I would need support hose long before a support group. But then the fates decided to mess with my grand plan and not only did I need xanax and crocheting, but darn if I didn't find myself looking up ever preemei support group in the tri-state area and on the internet. Much like Goldilocks, the first few support groups I tried just didn't fit me. People were either too pie-in-the-sky or too doom-and-gloom or just downright dopey.

How did I decide which support groups to stick with? Well I found that following the criteria below really helped me decide which groups were right for me:

1. No one in the group cringed or looked away when they saw a picture of Eliza just after she was born. (Unlike quite a few family members and friends...you know who you are and no I haven't quite forgetten yet).

2. Each new member of the group is congratulated on the birth of their babies no matter how serious their condition or how early their birth. (I had people ignore the fact that Eliza had been born and one person actually sent me a sympathy card).

3. I never have to decipher things like ROP, AOP, RDS, BPD, NEC, IVH, CP, PVL, CPAP, BiPAP, etc. to the group.

4. No one in the group will ever tell me that Eliza should "catch up by 2."

5. We can have an intelligent discussion on the pharmaceutical mechanisms and side effects of most respiratory and gastro-intestinal medications, a discussion that is probably as informed as any discussion between pharmaceutical reps.

6. Everyone in the group knows what Early Intervention is and no one will ever ask if it is a 12 step program for preemies.

7. For those of us who tried and failed to breast feed we are never made to feel like pariahs for giving our babies formula.

8. No one in the group will ever tell me that Eliza is just a picky eater or suggest that giving her Cheerios will cure her feeding problems.

9. We can communally celebrate our children's victories, which would otherwise go unnoticed in the rest of the world, like rolling over for the first time well after their first birthday or learning to hold a crayon or eating one lonely french fry or not vomiting for 10 whole days.

10. Being able to sometimes laugh along with the only people who understand at the otherwise dire situations we often find ourselves in.

So for those of you who think support groups are only for overly needy members of society, just remember that a bottle of xanax and pair of support hose can only get you so far.

Surviving the NCCU

During Eliza's first month in the NCCU the only people I really spoke in depth to were her nurses and doctors. The other parents in the ICU room at the time had all gone through their own special versions of hell. Two had lost a twin, one lost her surviving twin, another barely spoke English and was just trying to understand her son's condition. They all shared concerned looks and quiet hellos, but had too much to deal with to worry about making me feel welcome in this strange place.

After Eliza's first month though a new couple arrived with their son, a full term baby who was a bit of a medical mystery at the time. We exchanged a few glances at first, I shared what little NCCU knowledge had I gathered (critical things like which bathroom to use!). After they settled in and we all realized that we were there for the long haul, we formed a friendship and a bond that truly helped me stay sane during those long 100 days. When people ask me how best to survive the NCCU I tell them to look around the room, find the person or people who are in the same "boat" as you and try to form a friendship since those people will offer you a unique kind of support that no friend or family member can provide, since they really do know what you are going through. Friends and family can provide shoulders to lean on but they can only guess what it is like to not know if your child will survive the night or what it is like to leave your child in the care of others when that baby should be home with you.Having formed a friendship in the NCCU allowed the three of to almost normalize our existence. We visited our children at the same time, gossiped about the same things (usually the annoying parents whose children were in the NCCU 48 hours but whined incessantly about everything), complained about the same things and most importantly shared out victories, like being weaned off a ventilator. Strange as it may sound, there were even things to laugh about now and again in the NCCU and it was so very, very good to have someone to share a bit of black humor with.

Eliza's "good days and bad days" continued but eventually the good days outnumbered the bad days. When her discharge date came in late June 2006, I was ecstatic to be bringing her home, but oddly saddened to leave what had become our little NCCU family. My friends and I had agreed we would try our best to arrange our babies' discharge dates as close as possible, and luckily they were able to leave a week after Eliza was discharged.

Photo: Eliza Grace 75 Days Old

How To Crochet Your Way Through Your NCCU Stay

I happen to live within walking distance of Eliza's NCCU. This was a blessing and a curse. A blessing because I could spend 20 hours a day in the NCCU and a curse because I could spend 20 hours a day in the NCCU. After about a week of spending 20 hours a day in the unit, showing up at 3 am, etc., one of the neonatologists took me aside and mentioned that I may want to consider going home to sleep, eat and bathe. I asked him what made him think I needed to sleep/eat/bathe. He very nicely informed that I was starting to look like a homeless heroine addict, red eyes and all. It was some of the best advice I had in that first week, and I managed to sleep a good ten hours without even moving. After that first week of no sleep I tried to always get a few hours sleep at night so I could better focus on Eliza.

During those first few weeks of not knowing from day to day how Eliza was going to fare, getting the middle of night calls that all was not well, being asked to sign consent forms for medications and procedures that were a blur, I began to have anxiety attacks. My OB prescribed xanax which helped immensely. My mother of course had her own ideas of how to deal with anxiety. My mother's answer to stress was to crochet. To her, crocheting was far superior to any drug for relieving anxiety. It didn't matter what you crocheted, because it was the calming repetition of crocheting that was the important thing. And so I began to crochet the blue blanket (yes Eliza is a girl and should have had a pink blanket, but blue wool was the wool on hand at the moment).

For the first few weeks I sat by Eliza's isolette crocheting like a mad woman. Unfortunately I could only crochet one thing, a plain, simple blanket. Although the nurses and I now laugh about how big the blanket got, the blue blanket actually served as a catalyst to making friends with the nurses and some of the other parents. With the ever-growing blue blanket there was always going to be something to talk about, other than Eliza or the other babies and their problems. Of course, after Eliza's discharge some of the nurse's confessed to thinking I was a bit batty for my 8 hour crocheting marathons at Eliza's isolette.

I finished the blue blanket shortly before Eliza's discharge. The blanket grew as Eliza grew. Eliza still has her blue blanket and one day I'll tell her the story of why a little girl has her very own blue blanket.

Photo: Eliza Grace 8 Days Old

And So Began My Extended Stay on the Labor and Delivery Floor

I am a single woman who only wanted one thing in life, a baby. After many years of trying to have a baby, with ups and downs, steps forward and steps backwards, Eliza Grace was conceived via IVF in September of 2005. It was to be a wonderful pregnancy, or so I thought, despite being on a small pharmacy of drugs to maintain the pregnancy. All was going well until a routine visit to the OB in January 2006 revealed that I had slightly elevated blood pressure. With medication my blood pressure remained reasonably normal for a few more weeks. Then in February 2006, my blood pressure slowly crept upwards. Bedrest at home and medication were no longer controlling it and after a visit to my OB I was sent off to the hospital. The original plan seemed to be to get my blood pressure under control and discharge me to home on bedrest for the remainder of my pregnancy. Within a few hours it was very apparent that this was not going to happen, ever.

Looking back, initially I was not too alarmed about my admission. However as the hours dragged on and as my blood pressure kept going up to a high 215/125, I realized this was not normal and that things were never going to be "normal." Thankfully I was surrounded by good friends and my cousin, who is also a NICU nurse. I do not know what I would have done without these women by my side, especially my cousin. As the evening progressed I began to vomit and shake uncontrollably and had a crushing headache worse than any migraine I can recall. I think it finally dawned on me that all was not well when I saw the resident outside if my room holding his head in his hands. This is never a good sign.

The OB explained that at 23 weeks with IUGR (intra-uterine growth restriction) that the baby's viability was questionable. I was given steroids to help develop Eliza's lungs but needed to hang on at 24 more hours for the second round of steroids. Eliza was not even a pound according the ultrasound. I was given Demerol via IV for the headache pain and Magnesium Sulfate to prevent seizures and hopefully to help lower my BP. I was moved to Labor and Delivery and began to wait. I was surrounded by caring nurses and doctors who all tried to reassure me that all would be well. I am not sure I really believed them but somehow by morning my BP was down to a reasonable level and I and Eliza were given a brief reprieve from an early delivery. And so began my stay on the Labor and Delivery floor.