Sadie had an ultrasound and urology appointment today. For the first time ever, she had a normal ultrasound! Her hydronephrosis is completely resolved and her bladder was empty!
We met with Dr. R who was very, very happy with her ultrasound results, and also was very pleased that Sadie has started to initiate some interest in using the potty. He feels that she is advanced beyond what many girls with persistent cloaca are capable of, and that her chances of successful potty-training are good. We are going to need to follow up with the general surgeon, but we don't have to go back to nephrology or urology until next March!
"Please don't deny our despair, just be there with us. If you can't give me back my dream, help me through this nightmare." Janice Fialka, on her experience in the NICU
I didn't originally intend for there to be a "part 2" when I last wrote. However, I just completed a webinar for work on recognizing mood disorders in parents of NICU babies.
This is a subject I really, really don't like talking about. It's simply too close.
As the webinar opened, the speaker recognized the diversity of "attendees." And he stated that at least one person currently had a baby in a NICU in Chicago. The baby's name is Emily, and he dedicated the webinar to her.
I cried for twenty minutes. As the list of symptoms of postraumatic stress disorder came barreling at me through my computer screen, I could see myself as I was 2 1/2 years ago. I thought about Emily and her parents, and how I just wish I could hug them.
The day before Sadie was delivered via cesearean, Chris and I were taken to Riley for a tour of the NICU. We walked down a sterile-smelling corridor with brightly-painted walls, before coming to a desk with an attendant who had to open the doors to the NICU modules. The doors flung open. The bright walls were replaced with gray ones. The faint sound of muffled cardiac monitor alarms poured out of every door. We entered a module with ten isolettes. It felt like I was walking into a picture of a polio ward from the 1940's, with rows of iron lungs. I hated it, and proclaimed that I didn't want my baby to be there. As if I had any say in the matter. Back in my room, my father-in-law tried to reassure me that this was exactly where Sadie needed to be, that they were the best in the business. But, as a mother, I knew that it was no place for a mother and her child. Unnatural, impersonal, clinical. Dreams of delivering with a doula were gone. Visions of kangaroo care hopped right out the door. My unborn child, whom I had carried and protected for seven months, would be surgically removed from my body and placed in a plastic shoe box for the next 3 weeks.
For six days, I did not get to hold my baby. She did not feel like my child, nor I like her mother. But once she was placed in my arms, I was surprised by how much of the NICU world around me disappeared. The beeps and alarms, even the staff and other parents, faded into the background. We were given a screen, and Chris and I were able to block an area between two isolettes and truly be alone as a family. Everything changed after that. I became a member of her team. I gave her her first bath. We took her temperature, changed her diapers, rotated the placement of her pulse oximeter; we even got to dress her in preemie clothes that my best friend bought for her.
Joy started to trickle into our dark world. And when Sadie moved out of the NICU and into the infant unit, I fell in love with her. Chris had gone back to work, and I would hold her all day, stopping only to pump milk (usually I didn't even eat). I still had my dark moments, and to this day I still struggle with flashbacks. But I was finally liberated by the freedom to parent my baby girl, to hold her and touch her at will, to feed her and dress her and care for her.
How can you help someone with a baby in the NICU?
Just be there. Don't abandon them. It's okay to be there in silence, but just be there.
Don't minimize. Having a baby on a ventilator is not the same thing as the time you took your four-year-old to the ER for a sore throat. Don't pretend to understand, unless you actually do understand.
Recognize that the parents are grieving the loss of the childbirth experience they thought they would have. Their dream is lost, it's painful, and it matters.
Congratulate them. Ask to see pictures.
And if you are a parent with a baby in the NICU, I've been there in the trenches. Virtual hugs to you. You are stronger than you think.
Elena took this picture two summers ago. She even won her division in 4H and took it to the state fair. What's so striking is the incredible quality of this picture--the vibrancy of the colors, the shine reflected on the leaves.
What also struck me is that the butterfly was imperfect. Broken, but still beautiful.
That's kinda what it's like raising a child with special health needs. Maybe it isn't the experience you had envisioned, but still a lovely and worthwhile thing. (Read "Welcome to Holland.")
Thirteen years as a nurse and 2 1/2 years as a special needs mom, and I've seen all kinds of parents. I've met moms who are so overbearing and in-your-face about their child's disability that their kiddo has no hope of normalcy. I've chatted with moms with whom I can't get past the snark to truly appreciate the value of their parenting expertise. I've met parents who presume to know everything and honestly don't have a clue, and I've met parents for whom ignorance truly is bliss.
But the worst are those who truly cut you with their words. One of the most offensive things I've read repeatedly on various blogs is this: "It makes me mad to hear expectant parents say, 'I just want the baby to be healthy.'" Those making this comment (at least two of whom aren't even raising a special needs child) must've forgotten what it was like to be pregnant. They attest that to make such a wish devalues the life of a child who is not born healthy. Not true, and not helpful. What mother wishes to have a sick baby? Seriously? Of course, we all wish our kids could be born and grow up without daily meds, frequent surgeries, etc. But that doesn't mean you don't value the life of your sick child. These comments do nothing to support other parents who may be hurting. It is unkind to invalidate another parent in such a way.
Here's another one: "Death is not the worst thing that could happen to your child." Now, who's devaluing the life of the special needs child? I've walked the last road with many, many families and lost patients of all ages. Let me tell you, death may not be the worst thing for the person who dies, but it is often the worst thing that happened to those who remain. What a cruel thing to say.
Raising a child with special needs of any kind is not for the faint-of-heart. You'll be faced with comments such as those above, and much worse. You'll hear moms talk incessantly about their trophy children, as if there were such a thing, in comparison to your child. (That's why I so enjoy reading this blog.) You'll have to grow some thick skin. In the meantime, here are some things you can do to cope.
Knowledge is power, so research. Always be learning. Become an expert on your child.
Don't assume that the medical professionals have thought of everything. If you know your child is a hard IV access, don't wait until the day of surgery. Talk to the surgeon ahead of time about a central line. If your child normally gets an EKG before their appointment and one is not scheduled, call ahead and ask. And on and on. Don't worry about annoying the office staff with your double-checking. Chances are, they'll appreciate it.
Don't place blame. It's easy (and tempting) at times to get angry, frustrated, and defensive with the caregivers, but it doesn't help. Remember, they are human beings too. Don't sweat the small stuff, and don't get bent out of shape unless it's really warranted.
Develop a record-keeping system. Type "care notebook" into a search engine and look over some sample pages, then create your own. Or, store records on a flash drive. When you see multiple specialists, the docs will thank you for being so organized.
Surround yourself with sane, supportive special needs parents.
Keep in mind that no child is "perfect" or "normal." How many kids do you honestly know who have absolutely no physical or emotional issues? It could be something as simple as seasonal allergies or complicated as persistent cloaca. But few kids grow up completely healthy.
Take your parenting responsibility seriously, but don't take yourself too seriously. Otherwise, you'll miss a lot of joy that only your child can bring.
Hmmmm, what's been going on since January? Well, let's start with Elena. Elena has just under a month of school remaining before she becomes a freshman. Let that sink in for a minute...She turned 14 in March. Sadie was sure that Elena's friends were all there to see her rather than the birthday girl. She kept saying, "want the friends?" repeatedly, much to Elena's dismay. Ha ha. Elena is doing well in track this season, regularly placing in the 400 meter dash and 1600 meter relay. And, drumroll please, she made the color guard for the defending state band champs. Practices start this week. Other than watching competitions, we figure we'll see her again in October or so!
Sadie saw the nephrologist in March. Everything looks perfect, and we are now down to annual visits with Dr. W! We'll see the urologist again in June.
Sadie still hasn't gotten the hang of hunting Easter eggs. She thinks that the adults find the eggs and stand beside them for her, then she picks them up and puts them in her basket. But of course, our Easter was wonderful!
In other news, we expected that Sadie would be in her SMO's for a couple of years. However, her physical therapist feels she is ready to come out of them now! Woot! We celebrated by painting her toenails for the first time.
Sadie picked the color. Daddy is the "hand model" in this pic.
I have lots of catching up to do, starting with early December. Sadie had a cystoscopy (scope of her bladder) under general anesthesia with her urologist, Dr. R. Her former surgeon, Dr. S, retired recently so we got to meet our new surgeon that day as well. He seems very knowledgable about cloaca, and we liked him very much. Everything looked good on the scope, and her ultrasound from the same day was unchanged from six months ago. Dr. R also decided to repeat the urodynamics study that day as well, which takes a variety of measurements and images to determine structural function, basically. He said he was, "very pleased." I asked if we could attempt to start potty-training, as Sadie has been showing a little interest even though she's very young. Dr. R said sure, not to push it, but that it would be, "interesting to see what she's capable of." We were sort of "discharged" by the surgeon, meaning we only have to follow up if there's a problem. Sadie will continue to follow up with pediatric urology for life.
We also celebrated Sadie's second birthday in December! We had a Dr. Seuss-themed birthday party with just a few friends and family.
The following week was Christmas. I was sure Sadie would be much more interested in presents this year, but she really wasn't. It seemed to stress her out. Elena, however, was ecstatic--her favorite gifts were a Kindle and a Kindle case from Gussy Sews.
A few days after Christmas, Sadie started showing some unusual compulsive symptoms. We were told in her infancy that behavioral and/or attention problems are not uncommon with preemies. So, today we went to developmental pediatrics. While her symptoms seemed to have lessened over the past week, we need to reimplement some calming strategies and watch her closely. If she has further symptoms, we'll be referred to a specialist. Otherwise, we are discharged from developmental peds as well! It's so weird, because so much of our life since Sadie's birth has revolved around trips to Indy. At one point, she had 6 specialists at Riley, not counting her pediatrician. We are down to routinely following with only two (urology and nephrology), and barring any unforseen circumstances, we'll only have to go to Riley every 3-6 months from here on out.
How far our little girl has come, and how far she's brought our entire family! Today I was reminded that doctors treat, but only God can heal. He has healed her, and all of us, in so many ways through this experience. But there are so many others who are hurting around us right now, and we ask for your prayers for the following:
My dad, who continues his battle with multiple myeloma.
Chris' grandmother, who had a clot removed from her brain a couple of weeks before Christmas. She came home yesterday, and we ask for her safety and continued healing.
Amanda Kirby. She is our occupational therapist's 10-year-old daughter. She was diagnosed with a brain tumor in October, and she finished chemo and radiation (round one) within the past week. You can visit her Caring Bridge site here.
I've got some big plans for 2012, so stay tuned...