Wednesday, October 29, 2014
If you see us on Halloween, you might be surprised or maybe you won’t be. In the internet world, or at least my online circle, boys wearing dresses and liking pink aren’t unheard of anymore. Viral stories championing transgender kids make their way through my newsfeed, and friends regularly share posts highlighting gender nonconformity with me. In my home, we don’t think anything of my son in his pink sequined shoes and sparkly rainbow t-shirt practicing his dance steps in his newly painted purple room. Sometimes I forget that much of the real world isn’t accustomed to this.
If you see us on Halloween, my son will be dressed as a Fairy Princess. He will be wearing a flowing, flowery dress, turquoise leggings, rainbow wings, a flower headpiece, and pink sparkly shoes. He will be flitting about with his butterfly fairy wand pretending to turn his friends into woodland animals or some other enchanted creature. He will be spinning around in circles every few steps because he likes the way the dress twirls when he does. He will be so excited to wear the costume he carefully assembled with my assistance, the costume he has put on regularly in the weeks leading up to Halloween, the costume he wears as he joyfully twirls.
If you see us on Halloween, my son will also be nervous. His stomach will be flip-flopping involuntarily as he assesses each new encounter. His anxiety will be fighting to squelch his joy. He will be bracing himself for the first comment someone makes. He will be terrified someone is going to ask, “why are you wearing a girl costume?” He will be prepared though. He will be ready to answer, “it’s just what I like.” And if someone says something more clearly disapproving, he will be prepared to say “Please don’t say that to me. It’s just what I like.”
You see, we’ve had to rehearse this, because on a daily basis my son walks a fine line between being entirely confident in saying “screw you” to everyone out there who doesn’t approve of his preferences and living in fear of comments. He chooses what he shares and with whom he shares it. We support him in deciding what risks he wants to take, because he knows that by wearing what he likes and being who he is, there is a big risk people won’t understand. He knows that not everyone understands that girls can like boy things and boys can like girl things. He knows that not everyone believes that maybe there should be a whole lot less of boy things versus girl things. He knows that some kids aren’t taught by their parents that colors are just colors for all the world to enjoy and that toys are just toys for all kids regardless of gender. He doesn’t understand why other parents don’t teach that but he knows that some don’t. He also knows that the media and companies selling things don’t teach the world this either.
He has been blessed so far by not knowing how bad bullying can be, but he has been hurt by the comments of friends, teachers, and other sometimes well-meaning adults who have said with teasing disgust, “but that’s for girls!” He knows that when people don’t understand, they can be unsupportive and sometimes mean. He also knows that he has a community of family and friends who love him, no matter what. He knows that it’s okay to like the things he likes, and he knows what he likes. He likes all things pink, purple, and sparkly. He likes to play dress-up whether as a queen riding a pink unicorn or a spooky vampire with a satiny black cape. He likes learning about nature and playing board games. He likes Taylor Swift and dance class. He likes adventuring out into the woods and helping out on the farm down the road. And he really likes his Halloween costume this year.
So if you see us on Halloween, I hope you will consider that my son is just a kid wearing a costume like any other. I hope you will tell your kids that he is just a kid wearing a costume like any other. I hope you will model what it looks like to accept a child’s creativity and interests in a positive way without snark or judgment. After all, as he will tell you, it’s just what he likes.
Tuesday, July 15, 2014
Oliver is 11 weeks old, and I am finally getting around to finishing his birth story. I’ve been writing it in 5 minute increments since the day he was born. Our hands and hearts have been completely full with this beautiful, messy, chaotic growing family of ours. This will be long, and well, about birth… so if that’s not your thing, no big deal, you can click elsewhere. But this is our story… Oliver’s birth.
This is the last picture I took, 38 weeks on a Wednesday. Benjamin was born a day shy of 40 weeks, and Elijah was born at 41 weeks. I figured we had time.
That Friday was an exhausting and cranky day for pretty much the whole family. We got the kids to bed and headed to bed ourselves just completely wiped out. I had washed the sheets for our bed that day so we had to make it before going to sleep. When Chris asked if he should put the waterproof pad on just in case as we were nearing my due date, I told him to just go ahead and make up the bed with the layers of birth sheets, waterproof pad, and clean sheets underneath. We got in bed and maybe 20 minutes later at 10:40pm, I felt fluid leaking. Yep. Just 20 minutes after getting the bed all ready for birth.
As most pregnant women do, I wondered did I really just pee myself? I got up to go to the bathroom and saw clear fluid. I came back to bed and told Chris, "well I'm not exactly sure but I think my water just broke". I laid back down skeptical, but soon felt more leaking when I had no need to go to the bathroom. I was pretty sure my water just broke. At that point, I thought and said, "are you effing kidding me? after today? I do NOT need this." I called my midwife, Jessica, to let her know. She could tell how not thrilled at this I was, but for now it was time get some sleep and see what happened. I texted a few other people to give them a heads up, covered my side of the bed in waterproof pad, and then tried to sleep.
I was very anxious. I learned that I tested positive for Group B strep (GBS) 3 days earlier, and we were hoping to treat without antibiotics assuming I had no other risk factors present themselves. I didn’t want to expose the baby to the antibiotics if we could avoid it, and I am allergic to a number of antibiotics. Unfortunately, one of the major risk factors for baby developing a GBS infection is your water being broken for more than 12-18 hours before birth. Here I was with my water broken and labor hadn't started at all. This was not supposed to be happening this way. I wanted the contractions to start as soon as possible, but I also didn't want them to start because I just wasn't in a good headspace to begin labor. I was a mess. Sleep just wasn't happening. I was doing my best to ward off a full on panic attack.
I focused on calming myself. I knew labor wouldn’t start while I was this anxious. I laid in bed repeating to myself "I'm ready for you little one, I'm ready for whatever birth you need." I needed to let go of whatever I had in mind for the birth and fully commit to whatever birth this baby needed. I had a few hour long bouts of light contractions interspersed with a few hour long naps.
At 5:30am, I gave up and got up for the day. Nothing else was going on. My midwife texted me, and we agreed she’d come over to see how things were going and make a plan. A plan, we needed a plan. I didn’t want to need a plan. I took a quick shower, and Jessica arrived at 7:20am. We did a hibiclens wash because of the GBS and discussed the status of things. Jessica was wondering if perhaps my water hadn't really broken. She said that it's happened a few times where even she witnessed what seemed to be a complete rupture of membranes, but upon testing, it wasn’t and the mom was pregnant two more weeks. Since I wasn't having contractions, I was 10 days before my due date (and my other babies hadn't been ever on the early side), and we had the added pressure of me being GBS+, she suggested we confirm that my water had indeed broke.
On any other day of the week, this would just mean a trip to her back-up obstetrician’s office, but it was Saturday so we'd have to go see him at the hospital. We also agreed in consult with the back-up obstetrician that if my water had broke, we would do a dose of the antibiotics in the hospital. We were already approaching 12 hours since I started leaking fluid and labor hadn’t started. Plus, with my allergy history, Jessica was more comfortable having the first dose of antibiotics be in the hospital in case of any reaction. (The OB had said "you've got an epi-pen? Then don't worry, just do it at home!" Ha! Since I was going to the hospital anyway, this made the most sense).
Chris went to go feed the animals at the kids' school (goats and chickens we take care of on the weekends in partial tuition trade), I straightened up our room making sure things were ready for labor and baby (diapers, baby carriers, and birth affirmations.. the essentials), and we left for the hour drive to the hospital around 9:30am. We got there, dealt with paperwork, and waited for a triage room. I got to put on that ever so stylish hospital gown, get hooked up to continuous fetal monitoring, and then we waited some more.
When you’re planning a homebirth, the hospital is not somewhere you want to be. The wires, the beeping, and all the hospital-ness was overwhelming. We’d avoided most ultrasound (except for one to check for suspected breech position at 37 weeks) and use of the doppler to hear the heartbeat. Here I was hooked up to continuous fetal monitoring and getting an ultrasound without even being asked permission. People were just doing things TO me. I didn’t like it. It triggered all sorts of feelings of disempowerment and disrespect from my first birth experience, the experience that led us to homebirth with our second and now third births. They checked me for progress, and I was 1-2cm. There was some confusion with the resident, as I kept trying to explain we’d already spoken to Dr. G. We only needed to confirm my water was broke and receive a dose of antibiotics. I have a ton of allergies and that was a big deal. There was an argument over what antibiotics we could use while I tried to explain my midwife, Jessica, had already spoken with Dr. G, and we had a plan. They did determine my membranes were ruptured, at which point I got lectured on labor needing to get going because it’d been 12 hours already. The nurses were pretty good, and even at one point I heard them at the nurses desk saying “she’s been here over an hour, everything is fine, and she’s only had two contractions, can’t we just get her out of here?”
Chris began texting our midwife, Jessica, to let her know how things were going, and the midwife ended up texting Dr. G who had just arrived in our room at that time. Once Dr. G arrived things got much better. My water was broke. He called Jessica to confirm she'd like to move forward with Clindamycin, and we all agreed. The nurse came in to start the IV. THANK YOU! Finally, simple clear care. The nurse thought I’d have to come back in 8 hours for my next dose, but I explained, to her surprise, that my midwife would administer it via IV at home. There's so much confusion about midwifery and what certified professional midwives do.
We left the hospital around 1:15pm. It’s very funny to go the hospital, find out your water is broke, and then go home! I still wasn’t having contractions. Nothing felt like it was going the way it should, but at least we were going home to start the next steps. Castor oil! I took my first delicious dose with some scrambled eggs at 2:15pm. I updated a few people of our status, my mom took the kids to the playground, and then I rested for a few hours. At 4:30pm, I started homeopathic black and blue cohosh remedies alternating every 15 minutes for two hours. Contractions were light.
My boys came home from the playground and gave me some snuggles. They were excited and anxious. It was hard for them not to know how long it would be or what was happening. It was overwhelming for me with my own anxieties and the contractions were enough that I didn’t want kids bouncing on my bed when I had them. I sent the kids back out with my mom for pizza and to rent movies in case it ended up being a late night for them. Chris was making phone calls to make sure things were figured out for Sunday morning since he's a pastor and clearly if I didn't have a baby soon, he wouldn't be making it in time for church the next morning.
Contractions seemed to pick up a little by 5:15pm. They were every 3-4 minutes and stronger but only 30 seconds long. Jessica (midwife) said this was typical of castor oil. Hopefully they'd get longer and start to do more. I was expecting to be running to the bathroom with the castor oil but that didn’t happen at all. At 6:15pm, I took another dose of castor oil. I called Jessica, and she said unless she heard from me sooner she would be over at 8:30pm to give me my next dose of antibiotics. Contractions spaced a little in that hour, they were stronger but short. A gorgeous full rainbow appeared in my backyard. My message of hope.
The boys got home, got baths, and got ready for bed. They each wanted to watch the movie they had picked so Elijah went upstairs to watch his and Ben was glued to my side wanting me to watch his movie with him. Contractions were stronger now. I was breathing through them slow and steady. I had Chris bring down my exercise ball as there was no way I could snuggle on the couch with Ben. I needed to be upright and able to move. And so I sat on my exercise ball and he sat on a stool next to me and we watched “Hop”. I switched positions and Ben switched with me. His love was so special at this time.
Jessica arrived at 8:30pm, and Maegan, my birth photographer, got there shortly after. Contractions took my full attention. I'd stop mid-conversation to focus and breathe but was able to chat and snack on some grapes in between. I remember feeling irritated when the contractions would start mid-conversation while I was trying to talk to Maegan and Jessica. I love that I enjoyed the people at my birth so much that I was annoyed that contractions were “interrupting" our time to hang out. The kids headed to bed around this time, and Jessica checked my vitals and set up my IV for antibiotics.
My energy was starting to fade. I'd been up most of the night before and hadn't actually slept at all during the day. I was tired. After trying to eat some food, they set me up in bed with lots of pillows to hopefully allow me to sleep between contractions. When contractions hit, I’d frantically want to move to a different position which didn’t help. Jessica urged me to commit to the position I was in when the contraction started. I rested a little between contractions, but they were getting more and more intense. Finally, I just collapsed over onto my belly on the bed. I was really tired. Contractions were really tough. I was getting to that point of having nothing left, of feeling like I couldn't do this. Transition, the stage of labor right before pushing where you often feel like you’re going to die and you can’t possibly do this, felt close.
At 11:30pm, I tentatively asked if it would be stupid for Jessica to check me for dilation. I really wanted to be told that I could get in the tub. (If you get in the water too soon, it can slow your progress.) I needed a change, a new place of relief. I really didn't want to be told I wasn't very far along. I knew I was exhausted and working really really hard. I didn't know how much longer I could keep it up. I held my breath. I was 3cm. I was crushed. Absolutely crushed. I couldn't keep doing this long enough to get to 10. How could I only be 3? I'd been working way too hard through really strong contractions. I couldn't only be 3. I'd never survive to 10. Jessica later told me that I was barely a 3 and not super thin either and that she was concerned that it was the castor oil bringing on really strong contractions that weren't doing much progress wise because my body wasn't ready.
Jessica rallied. She had me lay as much on my stomach as I could to hopefully encourage the baby to move down some, and she and her assistant massaged my legs and feet intensely. I was so terrified that my body was NOT doing what it was supposed to be doing. I felt like I was in transition, but I was 3cm. I couldn't even breathe or vocalize all the way through contractions, half way through my sounds just turned into cries and whimpers. I felt so isolated, like only I knew that I really truly couldn’t do this, that my body was completely failing. It's one thing to be in transition. It's another to feel like you're in transition but know you're only 3cm and have a long road ahead. I begged to go to the hospital. This wasn't working. Everything had been wrong at this point - my water breaking, the antibiotics, our trip to the hospital that morning, the castor oil. Nothing was going right. My body was failing me.
Jessica suggested they fill the tub to let me get in to rest. If it slowed contractions, I could at least get some rest between them. Chris filled the tub and worked to get the temperature right. I just lay there wanting to die, moaning like I was dying, willing them to finish sooner.
Finally, the tub was ready. I went to the bathroom first and felt some pressure, but I knew I couldn’t be pushy at 3cm. I got into the tub, and it was so hot. The whole room was hot from the tub. I begged for cold towels which they brought. The water and positioning change was welcome, but the heat was awful. On my second or third contraction in the tub, my body pushed. I couldn't help it. It pushed. My midwife heard that pushing vocalization and said with what I am told was a great look on her face, "what was that?" I said I pushed, my body is pushing. She went ahead and checked me. I was on my hands and knees leaning over the tub. She said I did make a lot of progress, that I was maybe 6cm, but it was hard to tell because that position can be deceiving making it seem like you’re farther along.
They realized that regardless of exactly where I was, I was moving along quicker than they thought. They turned the lights on and began to get some of the actual birth supplies ready. On my next contraction I pushed again... I couldn't help it. I was scared because with my last birth I had pushed before I was completely dilated and it had caused some swelling that made it difficult for me to fully dilate. But I couldn't stop. The next contraction my body pushed hard. I felt the head come out and in my next breath of the same contraction the rest of the baby slid out. I reached down to see my baby on the floor of the pool. Chris noticed about the same time I went to reach down, and we reached down and picked the baby out of the water. Everyone else who was getting birth supplies ready looked over and wondered where the baby came from. It was 12:50pm, just 1 hour and 20 minutes after I had been barely 3cm.
(I love this picture of Jessica snapping on her gloves and running over… cracks me up!)
I was so out of it. I was so glad it was done and was looking at this baby in my arms. I looked between the legs and saw that it was a boy. In my exhaustion, I so clearly thought to myself, "really a boy? after all that, you couldn't have been a girl?" It makes me laugh now! I said all along I only make boys. He was perfectly pink and let out a cry but then just kind of hung out. His cord was super short so I could barely pick him up above the water, and I couldn't bring him to my chest. We just stood there kind of frozen in time with this baby. I looked up and saw my sister at the door of my room (who unbeknownst to me had just gotten to my house from her home a few hours, came upstairs, heard me push and then a baby cry a second later, talk about timing) and I said "the kids!" She ran down the hall to get my mom who had missed it all and woke up the boys to bring them in. They were so so sleepy so they kind of looked and then wanted to go back to bed. Elijah didn't even remember being woken up in the morning.
Jessica and Leslie helped me out of the pool since his cord was so short and they laid him at my waist as I lay on the bed. his cord wouldn't go any further. I felt really nauseous and out of it. They offered to cut his cord to bring him up to my chest but it was still pulsing and I was too spaced out to be able to hold him anyway so I said to wait. After a little while, his cord stopped pulsing, and Chris cut it. They wrapped him up and I had Chris take him as I felt like I was going to puke. Eventually I snapped out of it after some food, electrolytes and time. I nursed him before his newborn exam. He was 7lbs 11oz and 20.5 inches long. I got a few stitches and took a shower. Everything else got cleaned up and somewhere around 4:30am, we were all snuggled up with our at that time still unnamed baby boy to get a little sleep before morning.
Around 6am, the big brothers woke up one at a time to come in and see mom, dad, and baby. They were in love from the moment they saw him, and they haven't stopped loving him since! We named him that morning because Chris had to publish the church newsletter and needed his name to put in it – the pressure! The boys baked him a cake, and we brought out the birthday banner that we use for every family member. Happy Birthday Oliver James!!!
The birth wasn't anything I could have expected. My affirmation that I repeated to myself over and over the night before when my water broke of "I'm ready for whatever birth you need" was exactly what I would need. Between all the bumps before labor actually started and then the confusion of being in transition at 3cm but not realizing it, it took me weeks to process it. It was a wonderful birth and things went smoothly, but I really had to acknowledge how hard it was, how alone and devastated I felt when I thought my body was failing me, when I felt like I was a failure for not being able to do it right. In the end, I was in transition. I truly did know I couldn't do it for hours more because I couldn't have... my body only needed to do it for an hour more. My body knew way more than we did, but the emotions stuck around long after I suddenly and surprisingly had a baby in my arms.
Many thanks to Maegan Dougherty for her beautiful photography. So many people have asked if it was odd to have someone that I had talked to but never met at the birth, but she was amazing. First of all, she is a woman I’d be glad to call a friend and I was honestly frustrated during labor that I couldn’t just hang out and talk to her! Second of all, she is a beautiful presence to add to any birth environment. She disappeared into the background at times and was a supportive presence at others.
Also thank you to my beautiful midwife, Jessica. Again, another woman I’d be glad to call a friend. She is full of empathy and wisdom far beyond her years, in addition to being a skilled and professional practitioner. She was a true partner in my maternity care, empowering and supporting me from our very first meeting.
I love the rise of sharing peaceful birth stories, stunning pictures, and strong birth videos. It is often recommended that as you prepare a natural birth, you surround yourself with these as inspiration. It is powerful to see over and over again that birth is normal and women are strong. At the same time, it can be easy to set yourself up with expectations of how birth should look. There is no right or wrong way to birth. After my first natural birth, I apologized to everyone in the room repeatedly immediately following the birth. I felt like I had done it wrong. I had felt like I was failing. Transition hit, and I wanted to die. It was hard to shake that feeling. I didn’t have some beautiful ecstatic grin on my face as I met my baby. I was in shock. The same thing happened this time even with an entirely different set of circumstances. I love birth stories and birth photography as a way to chronicle our unique journeys, show the beauty of all birth in its raw power, and to own our stories and experiences, but I am also reminded of the danger of comparison and the contrast of other people’s highlight reels with our real life. I know my experience speaks to my personal gremlins of not good enough, but I also know I’m not the only one so I wanted to share all of my story, the birth in all its chaos and beauty and my honest processing of it.
Sunday, February 23, 2014
I was thrilled to share Regina and Luke’s Story in November during Diabetes Awareness Month, because our stories matter. As I wrote in the introduction to that post….
Our stories as mothers matter. It’s in knowing each other’s stories that we are moved to grace, empathy, and compassion in moments when we might otherwise be tempted to judge. When we share stories together, we open our hearts and we break down walls so that we can support one in another in this crazy thing called motherhood. Because as I’ve said before, mothering is hard, but it’s a whole lot harder if we think we’re doing this hard thing alone.
I look forward to highlighting stories from moms on a semi-regular basis. We all have a story. Maybe yours doesn’t have a diagnosis to go with it, maybe it does. But they all matter.
February 28th is World Rare Disease Day, and I am thrilled to have a good friend sharing her and her daughter’s story. I’ve known this mother since we were both pregnant with our first children who happened to be due the same month. We met on a mommy message board, but our friendship has reached far beyond a computer screen. She is a dedicated mother who loves fiercely, researches extensively, and now advocates proudly. This is her story.
As I write, I am watching Women's Figure Skating on the Olympics. Did you know that 1992 Olympic Gold Medalist, Kristi Yamaguchi, was born with clubbed feet? I didn't. Until 8 years ago, when my husband and I had our “routine” ultrasound for our first child, and we learned that she would be born with bilateral clubbed feet. After that ultrasound, we, along with our family, read as much as we could on the subject, including lists of famous people who had been born with the condition. Kristi (can I call her Kristi?) actually started ice skating as a form of physical therapy. And years later, those once-malformed feet carried her right to the top of the Olympic podium.
Over the next several months, we developed a plan. We met with the Chief of Orthopedic Surgery at our local Children's Hospital, and determined that he would be the doctor to care for her feet, using the method named after Dr. Ignacio Ponseti, a non-surgical method involving weekly casting, followed by use of corrective shoes connected to a brace. We would start her treatment about a week after her birth.
Childbirth went well. Aside from her feet, she was healthy, and she was beautiful. By the next day, however, the situation had changed. That afternoon, they came to us and informed us that they were having trouble keeping her temperature up, so they were going to put her in the warmer. By that night, they had taken her blood glucose levels, and she was at a 2. Anything less than 40 is considered hypoglycemic, and our sweet girl was a 2. They said they wanted to send her, by ambulance, to one of the two NICUs in the city. As it turned out, only one had room, so she was send to the NICU at the Women's Hospital. I was able to be discharged 36 hours after her birth, because the same doctor who had seen me that morning was still on-call, and could see that I was improving well enough to go with her. (I'm sure the fact that I would be at the Women's Hospital might have had something to do with this...)
Once in the NICU, she slowly started to make improvements with IV dextrose and the incubator, but she seemed to be hanging out just below the threshold that they prefer to reach for release. Five days later, on December 26th (yes, we spent Christmas in the NICU), we were finally able to take her home, but not before stopping at the Children's Hospital to get her first set of casts.
The next year passed mostly uneventfully. She had surgery at 6 weeks old to lengthen her Achilles tendons – the biggest step in correcting her feet. After that, it was 6 straight weeks of the same set of casts, then she was in her shoes/brace. And she had issues over Thanksgiving that eventually led to a diagnosis of infantile asthma, which was cold-induced. Any time she got a slight cold for the next 6-8 months or so, it developed into a full-blown asthma attack. She was hospitalized that May (just shy of 18 months old) when we couldn't get it under control at home, and we were sent home with a nebulizer. Finally, she started to turn it around, but she still had random “symptoms” that were enigmatic. She had no teeth until 15 months; her hair was very dry, brittle, and sparse; her toenails were pretty much non-existent; she was hypotonic (low muscle tone, unrelated – according to her orthopedist – to her being in casts and braces for her first 18 months...as a result, she didn't walk until she was about 2 ½); and she was falling off her growth curve. We saw a geneticist, a neurologist, an endocrinologist, and even a cardiologist, trying to figure out where the problems originated, but the results of her tests were inconclusive. We started early intervention to help with her hypotonia and gross motor skills, and she started to make improvements, but she was still far behind her peers.
For two years, we ran labs every 6 months or so for the geneticist, and each time, it was an ordeal. Many of her blood draws were lengthy and traumatic. She was a chubby baby, so her veins were very deep. We needed the IV team at the Children's Hospital every time, and they searched every vein possible – including in her head, and her feet (which she absolutely hated, because of everything she had been through with her feet). On more than one occasion, we had to leave without having completed the draw and return on another day to try again.
During that time, I became unsatisfied with her pediatrician, so I switched her to a group that was linked to the Children's Hospital. We loved these new doctors; they were so proactive! On her doctor's recommendation, we started seeing a nutritionist, because her weight was continuing to increase, while her height was now below 0% on the growth chart. Then, one day, I got a phone call from a friend who asked for prayers, as she was going in for labs the next day, due to some symptoms she was having, which she thought might indicate hypothyroidism. As she listed her symptoms for me, the wheels started turning in my head, and I got that feeling in the pit of my stomach that mothers get when they just know. I googled “hypothyroidism in toddlers”, and our daughter had probably 7-8 of the 10 or so symptoms that were listed. That night, I told my husband that we needed to have our daughter checked again for hypothyroidism. (The last time she'd been checked, she was 14 months...her T4 was low, but her TSH was high, showing that, while her thyroid was slightly underperforming, her pituitary was pushing the thyroid-stimulating hormone to keep everything functioning.) We had already agreed not to do any more testing, but my gut just told me that we needed to do this one more test. If it showed up as nothing, great. But if we didn't do it, and found out later that we could have done something to help her, I would never forgive myself.
So, I made the appointment to see the endocrinologist again. As it turned out, they had wanted to see us for a follow-up a year after her first appointment, but because we were going through the transition with the pediatricians at that point, we never “got that memo”. We got the labs done, and this time, her T4 was low, but her TSH was also low, indicating the primary problem was not with the thyroid, but with the pituitary gland. At this point, everything started to move very quickly. I can't give an exact timeline, because everything from that time kind of runs together in my memory. There were several more tests done, including multiple MRIs, x-rays to determine bone age, and a growth-hormone stimulation test – a blood test, which took about 3 hours.
The final result is that she was diagnosed at age 3 ½ with panhypopituitarism.
PAN = all
HYPO = deficient
PITUITARISM = dealing with the pituitary gland
Through an MRI, we learned that she has an ectopic (out-of-place) posterior pituitary gland, which is crowding her anterior gland. As a result, her anterior gland is shriveled, and not producing any of its hormones, including growth hormone; TSH, which helps regulate the thyroid; ACTH, which tells the adrenals to produce cortisol in times of physical stress; and, we assume, prolactin, LH, and FSH, which are considered “reproductive hormones” (she has not been tested for these hormones yet). Fortunately, there are replacement hormones for everything but prolactin. Just a few pills a day, and a shot of growth hormone at night, and her body functions (nearly) as well as yours or mine.
The most serious issue of her PHP is her secondary adrenal insufficiency. As I mentioned, our adrenal glands are responsible for producing extra cortisol in times of stress – severe vomiting; surgery; or emergencies, like seizures, loss of consciousness, or broken bones. They get that message from the pituitary gland. But our daughter's pituitary isn't sending that message, so her body can't fight these things on its own. In those cases, it is imperative that she receives a stress dose of oral hydrocortisone (she takes what's considered a “maintenance dose” daily), and in extreme emergencies, she needs either an intramuscular injection or an IV of corticosteroids. Without these measures, she could go into adrenal crisis, and could die.
A sobering thought.
When I think about the 3+ years she went undiagnosed, and all the traumas that occurred during that time - surgery at 6 weeks, several bouts with stomach viruses, MRIs requiring sedation, the hypoglycemia at birth - we could have lost her several times over. I am so thankful that God was watching out for her over those years, and that my friend – who, incidentally, does not have hypothyroidism – called me that day, and planted the seed that ultimately grew into her diagnosis.
Today, nearly 5 years later, she is a bright, happy, healthy first grader, with two younger (non-PHP) siblings. She loves to draw, names each of her stuffed animals, and plays soccer in a community league. We have only had one instance of illness when she needed her IM injection of solu-cortef. She still gets PT through the school, but she is making great strides (pun intended). To look at her, unless you noticed the MedicAlert bracelet she wears, you'd never know she is “sick”. Ultimately, I am grateful for her diagnosis, because we no longer wonder why she had those earlier symptoms. Nearly all of them are attributed to her hormone deficiencies, and nearly all of them are completely gone at this point. I am grateful that her condition is treatable, because so many parents face much poorer odds for their own children. Also, I am grateful that we are not alone in this journey. I have “met” some wonderful parents (online) through an organization called The MAGIC Foundation, which is geared towards raising awareness about growth hormone deficiency and the conditions that cause it. I am looking forward to meeting several of these parents and their children – who are also affected by PHP – this summer at MAGIC's annual Children's Convention.
There are some questions that remain, not the least of which is whether or not she'll be able to have children of her own someday. But we're shelving those questions for tomorrow, and enjoying the beautiful girl God has blessed us with today.
Friday, February 28th is World Rare Disease Day. Panhypopituitarism is considered a rare disease, because fewer than 200,000 people are affected by it in the US. Please visit the following links for more information on how you can help spread awareness of PHP and other rare diseases.
Additionally, in many states, EMS do not carry those life-saving vials of solu-cortef in the ambulance, and they are not permitted to administer patient-carried medications. There is a petition on the whitehouse.gov website to work towards a national protocol for EMS to carry these inexpensive (and crucial) vials on-board. Please consider viewing/signing this petition at:
Saturday, February 1, 2014
I know I haven’t been writing much. I’ve been in a consuming phase, spending a lot of time reading as I make my way through my third pregnancy and prepare for birth and a growing family. When I’m focused on taking information in, I don’t find a lot of energy or space for creating.
But this week, I feel I need to write. I need to share how worried I am for so many of us. In the past week, I’ve had heartbreaking conversations with no less than six different women who are suffering deeply from depression right now. In one week. Women from all over the country, from all different parts of my life. These women are hurting. They are struggling. They are crying out for help.
“I’m mad at the world. I feel so worthless.”
“I don’t know what to do. I don’t want to do anything. Just cooking dinner is too hard.”
“My husband doesn’t get it. He just wants me to get happy but I don’t know how.”
“I’m terrified of how this is affecting my kids. I know this is affecting my kids.”
“How am I supposed to be a good mom when I can’t even function?”
“I get so angry. I’m irritable all the time. No matter how hard I try, the littlest things send me spinning.”
“I need help, but I don’t even know where to start… or where to find the time, money, or energy.”
I knew some of these women struggled with depression, but others I had no idea. These women are all different. Their stories are unique. They are mothers of young children and older children, single moms and married moms, step mothers, women who work outside of the home and those who do not. Some have children with unique needs. Some have high-stress jobs. For some their marriage is holding them together, and for others their marriage is another victim of their illness.
Their stories are all so different, and yet they find themselves in this black hole I know all too well. I’ve shared parts of my journey with depression before, though it has been quite some time since I’ve written about it. I haven’t meant to avoid the subject. The silence is most definitely not because I’m cured. It’s not because I don’t suffer anymore. It’s probably more because I felt like I might be writing the same things over and over. I thought people would tire of hearing my depressing depression story. I haven’t been writing about depression because I am not an inspiring success story, an “I kicked depression’s ass” story. I am the story of a woman who lives with depression daily. Some days it controls me. Other days I control it. But it never goes away. I see how it affects my husband and my marriage. I see how it affects my parenting and my children. I watch in horror as my son struggles with similar feelings, and I actively worry about the effects of my depression on my unborn baby (which, by the way, only brings more depression and anxiety).
This week, I’ve been reminded that I am not alone. Clearly, I am very much not alone. Sometimes that’s a relief, but honestly, after a week like this, after listening to the raw and painful struggles of six fabulous women, I wish I was alone. I wish it was just me, because listening to their stories and being able to say “me too” isn’t enough. Listening to their hopelessness and fear and being unable to fix it is heartbreaking and infuriating. Of course, there are things we can do to fight depression, help depression, and maybe decrease depression, but they are not easy fixes. Medication, counseling, diet, exercise, meditation, yoga, herbs, essential oils, and lifestyle changes all can help in varying ways for varied people. But there are no easy answers. It’s not a one step fix. It’s a frustrating process of trial and error. When depression has knocked the wind out of you so that just cooking dinner is an impossible task, trying to fix yourself is an even more daunting one.
So this is me saying, dear mom who is depressed, you are not alone and I am not alone, but dammit I wish this wasn’t such a common experience. I’m so worried for those of us living like this. But, please do not be ashamed. Please don’t hide the hurt. What you’re feeling is real. The pain, the hurt, the sadness, the
fatigue exhaustion, the anger, the irritability, the hopelessness. Whatever your depression feels like (because it is different for all of us and it can be so different day to day) is real. It’s not real in that it defines you, because you are not these feelings, you are so much more. But the physical, emotional, mental, and spiritual effects of this illness are not all in your head. They are real. The way they feel like they are sucking the life out of you little by little, or sometimes in one giant woosh… it’s not just you, it’s not in your head.
I don’t have any dazzling advice or steps to recovery. I just have my sympathy and compassion. I’m still here. I still have depression. I’ll keep writing, and I’ll keep listening.
Here are some things (recent and older) around the internet that have touched my heart:
Strange and Beautiful from the Bloggess
Nest Comic This image has circulated all over social media, but I didn’t get permission and don’t want to share it here without that permission. But this is one I want everyone who loves someone with depression to see. When there’s nothing else you can do, this means so much.
Here is the face of a mom with depression from Honest Mom
To Write Love on Her Arms In their words they are “a non-profit movement dedicated to presenting hope and finding help for people struggling with depression, addiction, self-injury, and suicide”. I love their blog, instagram, and their store. I especially love some of their shirts, like this one I got for a friend recently.