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Millie Wants a Sister

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When I was two years old, I would yell out the window asking the neighborhood children who were walking home from school to come play with me. My parents decided to try for another baby when they saw how lonely I was. Millie has two brothers, two amazing brothers, and she’s definitely not lonely.

Unknown to us at the time of Crosby’s conception, both boys were born with a genetic syndrome called IFAP that they will endure their entire lives. I have a 50/50 chance to drop an egg with the compromised X-chromosome so it would be considerably irresponsible for us to have another baby naturally, due to this genetic condition (You don’t know what you don’t know but once you know, there’s no more unknowing).

Let’s talk about a 4th child, because we have been for over a year. Chris was not on board because we couldn’t guarantee that the baby would be a girl (Millie wants a sister) or most importantly, that the baby wouldn’t have IFAP. When we were at Crosby’s annual genetics appointment, I asked the doctor what our options were for growing our family without this syndrome. To Chris and my surprise, the genetic doctor was extremely optimistic about our chances of having a baby without IFAP through a form of IVF, genetic implantation. The guarantee of uncompromised chromosomes made us both considerably more interested in growing our family.

I’ve been told, “You’re crazy!” “You won’t fit in a regular sized car.” “Four children is too many!” And maybe I am, and maybe it is, but I can’t shake the feeling that we are missing someone in our family. Chris tried convincing me that the longing I felt was me missing my sister (who passed away in 2019) and while that is true, there are more reasons why having a fourth would complete our family.

Reason No. 1: We are Christian and we believe wholeheartedly that growing God’s Kingdom is of great importance. We are in a loving marriage and have been blessed with a beautiful home and finances that can support another member. We also have great family support; my mom moved up to Ohio from Virginia to be close to our family.

Reason No. 2 : I would do anything for Millie and she is adamant that she wants a sister. I understand why; I had a sister. I had the experience of sharing and stealing clothes, sticking up for her when others weren’t so nice, late night conversations about boys and our parents, and rules and breaking those rules. I had experiences as an adult with my sister; asking her to be my maid of honor, going out to bars and nightclubs, decorating our first apartments, and of course lots of shopping. If I am able to give Millie a sister, I want to.

Reason No. 3 : A kind of different reason (and maybe it’s not so different if you’re in a family afflicted with a genetic syndrome), but another reason why I would like to have another child (and specifically this way) is the knowledge that is possible to have a baby without this compromised chromosome. Absolutely nothing against my beautiful children with IFAP (we love you exactly the way you are). Chris and I have had many conversations about the possibility that our current children will resent the fact that this sibling would not have the syndrome; that we made a “healthy” child. Would they think that this is our “favorite” child? I think if it were a boy, there could be issues. Like, in some way our boys weren’t good enough and that is not at all the case. I want to experience this IVF process myself so that one day I could speak to my children about how to responsibly grow their own families, first hand.

So Chris called and set up a consultation with one of the clinics of reproduction and gynecology, and we had a virtual consultation about what we wanted and needed to grow our family. Our first meeting went really well. The doctor listened to our needs and was very affirming that we would be great candidates for this PGM choice. He explained how RGI would harvest my eggs and collect Chris’ sperm and after six days they would send the specimen off to the lab to be biopsied to tell us if any embryo was growing without the compromised chromosome. We would then implant an embryo without the compromised chromosome in hopes for a healthy baby. I questioned, “What happens to the embryos that have compromised chromosomes that we chose not to implant?” The answer was, “That’s your choice” and that is the moral dilemma that we are dealt. Those embryos, if implanted, would become people; babies; real life humans. Notice I’m saying if implanted. The reproductive doctor said he would not recommend these embryos for donation or implantation due to the genetic complication however, I’m thinking about my boys, Wells and Crosby, and how even though they have this syndrome, how perfect they are, and how grateful a family would be to have a child regardless of their syndrome. So, when does a life become a life? Are we OK discarding the compromised embryos? Are we okay discarding the healthy embryos we wouldn’t be using?

The next step in this process was going to RGI for an ultrasound screening to make sure that my ovaries and uterus looked okay for this procedure. I was a little taken back by the fact that I had to get a vaginal ultrasound while on my period! Normally, the OB does not want to see you while you’re on your period so I asked “What are you seeing while I’m on my period versus when I’m not?” and the doctor explained to me that this was the start of my cycle and the best way to know what’s going on is to have the most information possible and this gave him information about my follicles and lining that he might not otherwise have. Gross.

I went to this appointment on my lunch break (hindsight probably not the best idea) but I’m so low on sick days. Before I was taken back to the examination room, I took a video for Mill’s “maybe baby sister”. The lady at the reception desk started to tear up and said, “Oh my gosh, those videos will be so beautiful to share with your baby.” I got emotional thinking about what was to come.

I was taken into a room where two nurses were prepping to draw my blood. I was skeptical about having them do a blood draw when I wasn’t scheduled for one or gotten any sort of preauthorization from my insurance. They handed me a pamphlet that said this genetic blood test would be $300 out of pocket. I told the nurses that I did not feel comfortable doing the lab draw today and they audibly scoffed as they walked me back into the lobby. I felt like I had the wind knocked out of me.

I was asked to follow a nurse to the OB room and as soon as I was alone, I called Chris. I was bawling when I told him that I felt unprepared for this appointment. He assured me that we would just get the information and nothing had to be decided that day. He was able to calm me down before the doctor came in. I laid on the table with my feet up, bleeding while I was waited. The doctor told me that I had 11 follicles on my left ovary and 15 follicles on my right, which made him incredibly optimistic that I would have lots of eggs to harvest. I was stunned when he said, “This is excellent. All of these follicles will produce eggs and you can have as many healthy babies as you want.” I’m sure he meant for that news to bring me joy and that many women would be ecstatic hearing that however, I just started to cry. If I have all those eggs and I can have as many healthy babies as I want, why did two of them have this terrible syndrome and my daughter may be a carrier?

My heart hurt. I know the boys will have so many questions for me as they get older especially once they start realizing how different they are from their peers. I will say this again, I wish I could’ve known about being a carrier for IFAP before we started family planning but I don’t regret having my children or the people that they are because this is a part of them. I just wish we would’ve known that I had this syndrome so that we could have safely brought our sons into this world without having the daily struggles that they will have for the rest of their lives.

Next in the process were lots of blood draws – some I don’t even know what for; my genome mapping, infectious disease, etc. My 500+ panel (a carrier screening of mutations in DNA) came back completely perfect- ironic because I am a carrier of a chromosomal abnormality, because of it’s rarity, it’s not a mutation that’s checked on the panel. At one draw, I heard the tech sitting behind the desk say, “It was the ninety’s; everyone had crabs!” Ew.

Many hours were spent on the phone talking to our insurance company and the reproductive facility to find out what was covered financially and what would be out of pocket expenses. Ultimately, we found that once we hit our deductible of a couple thousand, everything else would be covered. I continued to check, double check, and triple check our coverage so there would be no hidden fees. We are so blessed to be in a position to be able to afford this process.

Chris scheduled his appointment to get his sperm analyzed and frozen for the week we got back from Disney. I was excited to go on a family vacation and also excited that when we got back, serious strides were being made in hopes of baby number four. While packing for Disney, I made sure to include a new package of pads in my suitcase because I hadn’t started my monthly cycle and I knew for sure I’d start while we were on our trip. Ugh, the worst; no one wants to be on their period on vacation. Throughout the whole trip, I never bled. I didn’t even spot. I chalked it up to the stress of the holidays and planning a family trip. The weirdest thing happened while we were at Disney, I heard my grandma say, “The best thing about being pregnant in December…” I told her right then, “Maw, I’m definitely not pregnant.” I don’t know what prompted her to say that but I reiterated to her many times that we were not expecting.

Once we got home from Disney, I was a week late starting my period. A couple more days went by and still, zero cramping. I was starting to get concerned so I brought it up to Chris and he calmed me down by reminding me of another time I had been late to start my period and how everything turned out fine (it was only a few months after Crosby was born and I was breastfeeding round the clock). Two days after our conversation, as I was getting ready for work, I realized that I hadn’t yet taken my morning pee and I had an unopened pregnancy test in the bathroom cabinet. I decided to test, what could it hurt? I knew I wasn’t pregnant and thought that the negative test would put me at ease. Of course when you’re thinking about using the restroom, you have to go even more so I ripped the test open and without hesitation peed on the stick.

Almost immediately it read positive. When I was pregnant with Mill the lines were so faint, barely there. This result was bold and very much positive. I genuinely didn’t know how to feel because I was in complete shock. I continued to get ready for work like a walking zombie; I can’t even remember what I chose to wear. All I could keep repeating in my mind was, “We are going through the genetic implantation process, we are going through the genetic implantation process, we are going through the..” and SURPRISE we get pregnant again the old fashioned way. My OCD and anxiety were not allowing me to be anything other than devastated because this was not the “plan”.

Chris was downstairs filling up my water bottle for work and when I came down, he could tell something was the matter. He pulled me aside and I showed him the positive test. I couldn’t even look at him; I kept thinking about how much he didn’t want another child this way. My doubts were clouding my brain. To my surprise, he pulled my chin up and smiled. He chuckled and said, “I expected this. It’s going to be okay.” I fell into his chest and he said, “It’s going to be fine.”

I called my best friend Lindsey because I knew she would understand my dilemma. She’s a mom of a son with a genetic birth defect, she has an autoimmune disease, and she knows my heart so intimately because of our thirty year friendship. She was so supportive of anything I said and felt. She reminded me of the autonomy I had over myself and that I wasn’t alone. It wasn’t that I didn’t want to be pregnant, it just wasn’t the responsible plan I had created for growing my family.

I waited until 8am, frantically called my OB, and they instructed me to go to the outpatient lab to get my HCG levels tested. I told them that this was not how I wanted or planned to get pregnant and I wanted all my options as soon as possible. My HCG results came back over 600 which was perfect for a five week pregnancy. I explained to my nurse that I wanted genetic testing done as soon as humanly possible because of our history with IFAP syndrome. She explained that to get into the MFM geneticist, we would first have to have an ultrasound in the books and one was scheduled for two weeks later.

Once the ultrasound was scheduled, I reached out to our IVF liaison to let them know I was pregnant “the old fashioned way”. I was disappointed telling them because it’s not what we planned and I hate letting people down. I was so surprised when they were incredibly supportive and congratulatory. They said, “Just let us know if we can help in any way.” Their kindness brought me to tears.

I started to feel excited for this new addition. I bought a Coach diaper bag (boujee, I know), the sweetest crocheted stork to use for the pregnancy announcement picture, and a mail-in blood test kit that I could take at 8 weeks because that would be quicker than the OB’s tests. Gender would tell us some of what we needed to know ie. a girl would at most be a carrier.

Chris and I told our out-of-state friends who happened to be in town that we were expecting. I told my friend Anna because we were going to be celebrating her wedding in Vegas and I didn’t want her buying any drink vouchers for me. I told my friend Madison from work because she asked me if I could do a leadership committee after school the next year and I had to tell her why I couldn’t make that commitment. Everyone we told was so excited for us which helped my mental state because internally, I was terrified that I was giving yet another perfect baby this horrible, genetic syndrome.

The day of the ultrasound, I was anxious to hear the baby’s heartbeat. I took a video for Millie’s “maybe baby sister” and walked in the office with butterflies in my stomach. To my surprise, this ultrasound looked different than any of the others I’ve had. The ultrasound tech asked me, “How sure are you about your schedule?” My response, “Pretty damn.” She said that the embryo sack was there but not a fetal pole yet. She said that I would need to have another ultrasound done before I could be seen by MFM and I was shattered.

I called Chris and said, “A six weeks fetus looks like nothing! Literally nothing! Why is anyone arguing about abortion before six weeks when it was just a little, black speck?!” The doctor called me the next morning and explained that there was one of two things happening; I was either off on my dates and this pregnancy was not as far along as I thought or this was an unviable pregnancy. My OB explained that I would either start bleeding or I wouldn’t and she set an appointment for another ultrasound two weeks later. I was shocked with how nonchalant she was and I honestly, how I was. I’m such a control freak but I knew I had no control over this.

A week went by and there was no bleeding. I was still pregnant and I was starting to feel more confident that I was wrong with my dates. While I was teaching the following Monday, I felt a familiar gushy feeling in between my legs. My mind immediately started panicking but I had a class to teach so we kept singing about the lunar new year. Between classes I ran to the bathroom and sure enough I had a quarter sized drop of blood in my underwear. The part of me that knew something was wrong was internally fighting the part of me that thought this was normal; incubation blood – it wasn’t that much.

I didn’t bleed anymore that morning. Not until 4pm when our staff meeting ended and I sat on the toilet and a clump of blood the size of a grape was sitting at the bottom of the bowl. I took a picture of it and sent it to my OB, am I losing this pregnancy? Thankfully, the nurse wrote back quickly and said that this wasn’t as much blood as I was thinking it was and to reach back out if there was more bleeding or I developed a fever.

I drove to pick up Crosby from my grandmas house and almost had to pull over, I was sobbing so hard my vision was blurred. I had crying welts all over my face when I saw my Maw rocking a sleeping Crosby. She immediately asked, “What’s wrong, honey?” And I squeaked out, “I think I’m losing this baby.” She cried with me. I had never told her I was pregnant but yet she knew.

Prayerfully, no more bleeding happened that night and there was no blood the next morning either. I was beginning to think that the nurse was right; maybe it wasn’t as much blood as I thought. I taught my classes all day without bleeding, I picked up my kids after school; Crosby first, then the bigs, and I was still good. Once I got home, I started making dinner – Taco Tuesday, when I felt the familiar rush of blood.

I went to the restroom and it was the same amount of blood as before, not too much but enough to make me worried. I finished making dinner but I could barely eat; I had no appetite. Chris cleaned up and I gave the kids a bath; they always get so messy on taco night. It was an early bedtime for the kids because I had 125 buckeyes to make for school (I promised my students, 480 total, that I’d make each of them a homemade buckeye if Ohio State won the National Championship – I’ll never do that again.) As I was coating the peanut butter balls with the melted chocolate, I started to feel intense cramping. I had to stop what I was doing in the kitchen and I laid down on the couch. The cramping continued and I put in for a sick day; I was feeling really miserable and I knew I wouldn’t be able to get the buckeyes done, let alone teach. Chris turned on, Suits and I laid on my side, praying that the pain would go away.

I remember saying to Chris, “These feel like contractions.” The hope of a new life in our family was slipping away and I could physically feel it. Fearfully, I got up to use the restroom, sat down on the toilet, and felt something really strange. I looked through my legs and was stunned by the sight of a horrific, coagulated blood clot the size of a cucumber, hanging out of me. It was so much. I stood up. I can’t accurately describe how it felt other than I felt all of it, like an after birth. I remember screaming, flushing the toilet, and crying into Chris’ chest. Our baby was gone.

The cramping immediately subsided. That euphoric feeling after you give birth and all the pain goes away? This was the same in that the pain went away but I felt empty and miserable. I called my OB and they instructed me to get my HCG levels checked again. I did. It was still rising. But not as much as it should have. No one tells you that after you miscarry, you continue to bleed for weeks. The smell of the blood was different than period blood and it made my stomach churn. I had to go back to work (I have zero sick time after three maternity leaves) while bleeding out the pregnancy. I got a UTI, which I have after every delivery, and the doctor chalked that up to the miscarriage. The next Taco Tuesday, I had a panic attack and sat on the floor in the kitchen and cried. I can’t remember a whole lot from the weeks after because I think my brain was protecting me from the mental pain.

I went back to the lab four more times during the month of February. My HCG had to decrease from over 4,000 to under 5. If my body wouldn’t do this naturally, I would have another ultrasound and possibly a DNC. Thankfully, my body understood the assignment and almost month later, my HCG returned to normal. Finally, the nurse at the OB’s office called me and said, “Well, I guess this saga is over. A miscarriage doesn’t mean you’ll miscarry again. It happens in nearly 1 in 5 pregnancies. Something must have been off in the chromosomes. You should have a period next month. Reach out with any questions.” This saga. Yeah.

After the kids go to bed at night, Chris and I can talk about grownup things. I remember him saying, “I can’t understand why all these bad things keep happening to you.” All I said was, “I keep waking up everyday, just like you.” I was struggling with guilt – women who get further along, those are the ones that should be grieving. Me? I was only 8 weeks and 4 days. I have three beautiful children. Why was I struggling to get out of bed? I didn’t feel like myself. I lost twenty pounds in less than two months. I saw two pregnancy announcements on Instagram who were as far along as I was and I wanted to shake them; don’t they know at eight weeks you could lose it?! Someone at work said, “When are you going to have a fourth child? You need a SATB choir!” My heart instantly broke yet I wore a smile like a mask. I reached back out to my OB and asked if they had any recommendations for therapists specializing in miscarriage.

I was first referred to an outpatient clinic that met virtually 6 hours a day, for nine weeks; one hour for individual therapy, one hour for couples therapy, one hour was group therapy, and then three hours of grief curriculum – every day. I told intake, “Thank you but I can’t do all of that. I have a full time job and three children.” They responded that this treatment is for women who can’t function because of their loss, many of them take FMLA to complete this program, and after an intensive 9 weeks, they are rehabilitated. I politely told them that if I found myself debilitated by grief, I would give them a call back and I thanked them for the work that they do for the women who need it. I felt guilty for wasting their time.

I reached back out to my OB’s office and asked them to refer me to a less intensive therapy. Like, a once a week for an hour type of deal. I was informed about POEM (perinatal outreach and encouragement for moms). They first matched me with a therapist who was Christian and had grief counseling on her “about me” page. During our first session, she told that everything happens for a reason. I miscarried because God wanted me to push into him and I wasn’t reading scripture enough. She recommend a devotional I had already read. I ended up canceling my next session with her – not because I don’t value scripture! But because I don’t believe the Lord had anything to do with my miscarriage. I believe that loss is of the world and not of Him at all. I believe Jesus wept with me and He was not condemning me for not reading more of the Bible. Still, I felt guilty for my lack of study.

I felt guilty for the moments that I wished we would’ve gotten pregnant through genetic implantation instead of naturally. I felt guilty that I had ever considered terminating the pregnancy because it wasn’t what we “planned”. I felt guilty that I lost a sibling for my children. I felt guilty because my husband didn’t want a baby naturally, but then I got pregnant and his feelings changed—only for us to lose the pregnancy and put him through an emotional rollercoaster. I felt guilty for doing a crap job teaching because my head was all over the place. I felt guilty for getting my nails done, dying my hair, and getting laser hair removal during the first weeks of the pregnancy when I didn’t know I was pregnant. I felt guilty that I wasn’t taking any prenatal vitamins before I got pregnant. I felt so much guilt because in my mind, I failed.

I contacted POEM again and they matched me with a different therapist; one who was familiar with miscarriage. Her “about me” said she was a mother, that she worked with NICU parents, had PTSD expertise, and specialized in grief counseling. Our very first session, she listened to me and validated my feelings. She helped me through navigating reaching back out to RGI in hopes that we could get back to where we were in planning for our future family. She told me that we would get my mind healthy for another pregnancy. I am so grateful to her and our continued work.

While I deeply grieve the loss this pregnancy, I don’t feel comfortable referring to a future baby as a ‘rainbow baby.’ No shade to anyone who uses that term because everyone heals differently and I can appreciate that. I want to honor my next experience (God willing) in its own space, but I also want the next pregnancy to be its own journey; without it being defined by the one before it. Heck, I don’t even wear the used hospitals gowns when I deliver because what if someone died in them? A new life deserves to be welcomed without the shadow of loss tied to it.

Since starting to open up about this loss, I have realized many women who I love and look up to have also had similar experiences. Before I experienced a miscarriage, I used to think, “Why wouldn’t mothers want the support of their friends and family and talk about it?” Well, now I know. It hurts. And it’s personal. And I’m moved to tears of the vulnerability of the women who have spoken about their losses with me because it’s made me feel so much less alone.

I haven’t been able to blog about anything else until this one was finished because the blueberry inside of me deserved a post on this feed. It’s only been a few months but I am starting to heal – heal in the fact that I can read this without sobbing and throwing my phone across the room. I am forever grateful for my faith, my husband, and my children.

To my children, someday you will read this and instead of it giving you a real life experience of life through genetic implantation, this teaches a different kind of life experience; loss. Incredible loss.

parenting

The Daddy Daughter Dance

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Written by The Daddy

Most of the dances I’ve attended, I’ve gone with the same date, and I didn’t think that I would enjoy going to an event like that with anyone but her. Whenever Aly and I get dressed up to go out together I always have this warm, comfortable feeling of being in the right place with the right woman, and a feeling of pride that someone so beautiful and fun would want to be there with me. The old nerves about dancing or fumbling over flirting have faded and been replaced by familiar dance patterns we learned together, and the comfort of more than a decade and a half of having her hand in mine.

So with that being said, it was surprising to me how excited I was to prepare for Mia’s first dance. The father daughter dance sponsored by her school was, in my mind, just something this Christian school would give a token effort to. I figured that it would be more stiff and less fun than the types of dances I had attended when I was growing up (especially since it was just for K-8 at a Christian school…). Regardless, I was excited for Mia to have the opportunity to do something fun through her school, and excited that I got to be part of it.

I definitely did not give the school and the event planners enough credit! From the moment we were let in the doors, she got to pick out a custom made flower crown, and there was a full professional photographers booth (that Aly had pre-paid and prepared us for ahead of time), with a space for the dads to stand in line, and tables full of different crafting station for the girls to do something fun while waiting. We decided to do that before we got too sweaty dancing. Mia drew a picture with some of her friends, and crafted a custom made bookmark with pressed flowers. After the picture, it was into the ballroom.

The gym had been fully converted to the extent that I did not even recognize the room. 3 of the walls had curtains put up to create the illusion of a dedicated dance floor, there were strings of lights stretched overhead all the way across the gym, there were full disco lights and the DJ was playing fantastic (age appropriate!) dance music! There were tables set up with cookies and snacks and different drinks, and benches for resting. The setting was incredible, and I could tell that Mia was amazed at the conversion of the room. She could not stand still for a second, zipping all over the room every time she saw a familiar face, I could barely keep up with her!

The DJ mixed in fun activities with the normal music, which encouraged people to stay out on the dance floor for more than just dancing. There were Congo lines, line dancing, limbo circles, even a soul train (where people dance down the center of two lines of people while being cheered). These activities did a great job of keeping the dance lively and as many people out on the floor as possible.

The majority of the first portion of the dance I was just trying to keep up with Mia as she found all her friends and spent a few minutes dancing, and then zipped off again to see someone else. It was wonderful to see how friendly everyone was with her, and it made me happy that she had so many friends. At first I was nervous that these people would not be welcoming to her, but my worries eased a little bit as each new interaction showed that they were all familiar with her and her tendencies to be a social butterfly, jumping to and from different friend groups all over the floor.

Once she had greeted all her friends and gone through the limbo line with a few different groups of girls, she then gravitated back towards spending time with me, and I experienced that same sense of comfort and contentment that I always feel being around her mother. If anything, my heart was even more full because there was also pride for the beautiful, wonderful person she is becoming. I showed her all the line dances I knew, and I picked her up and spun her around every chance I got, much the same way that I had done for her mother when we were 18 at her homecoming. It was an amazing time, and I can’t wait for the next dance.

Baby

Kindergarten Year

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Every May starts the count down to summer break (obviously the best part of the job) but not this year. This year, summer break meant Millie would be done with kindergarten and I just could not fathom my baby graduating kindergarten – no way.

Chris would drop Millie off at school before starting work everyday. Kindergarteners had a special drop off location, closer to their classrooms. Mill would always have her backpack with her daily folder (Ariel with her “shell phone”) a book to read, and her granola bar snack. We packed her lunch everyday; pasta salad was her favorite. We weren’t allowed to send her to school with a water bottle because too many kids were spilling them however, she wasn’t drinking the schools water because she said, “The school water tastes yucky”. We got permission for her to bring a tightly lidded water bottle to school; her water intake increased dramatically.

Chris worked from home on Mondays and Fridays and would pick up Millie from school (This was helpful because of my staff meetings after school on Mondays). We were fortunate that her administration agreed to let us pick her up with the 1st-4th grade car-rider line from 3:20-3:40pm. Mill was always the smallest amongst the other students. I was always surprised to see who she was talking to, waiting for the car to pull up. She loved being able to talk to her kindergarten friends’ older siblings. She’d get in the car and say, “Hi, Mommy!” She was always ready to tell me about her day; what color she was on, who did what at recess, and what they did during specials.

At Mills first parent-teacher conference, I noticed how clean and organized her desk was compared to others. The teacher informed me that she sat Mill next to a boy who’d been having a lot of difficulty. She said she did this because Mill was kinda bossy and the boy could use another boss. (That child ended up getting the “boot” before Christmas break.) I was surprised to learn that her class had been praying for my boys and for God to rid them of IFAP syndrome (she even told them her brothers had no eyebrows). Her teacher let me know that Mill had asked for prayer for them and I just started to cry; she has a heart of gold.

Mill had friends in her class and friends in other kindergarten classes, too. One of her school friends was actually a classmate of hers from BalletMet and she knew another girl from Sunday School. Millie was invited to a number of birthday parties throughout the year. When it was her birthday, we brought in cupcakes for everyone. (I loved being able to do this for her because when I was in grade school, I never was able to because of my summer birthday.) When other classmates had birthdays, we had given her teacher a bag full of vegan goodies Mill could enjoy while others were eating treats with dairy. When she had an Easter jelly bean sorting activity, her teacher reached out to me asking which brands of jelly beans were gelatin-free. They were great with her food allergies.

I did go into “crazy mom” mode after receiving Millie’s first grade card. She was getting threes and fours in each subject except music. In my area of expertise, she was getting a two. A two?! (two is considered “developing”) I emailed the music teacher who explained to me that all the kindergarten students get a two before they put on their Christmas pageant. I did not think this was fair. It was blanket grading for a school we pay a lot of money for. I was upset that the teacher could not provide grades for the standards that I knew darn well she should be teaching. I also knew that Millie had mastered all of the Ohio music standards through second grade. Developing – no way. Not to mention she was bringing home the “Star Singer” award every week. The rest of the year she got 3s and 4s in music. I’m still pretty irritated about it.

I never had to fight Mill to do her homework. She always enjoyed completing her math pages. A couple times, Chris and I actually struggled on questions regarding a birds direction on a branch and which order they were in (already struggling to help with homework lol). Every month she completed her reading assignment called, Reado. It was like a bingo card with different book suggestions. When she tuned them in, she received little prizes and at the end of the year she got a special t-shirt that she could wear on Wednesdays during the last month of school (keeping track of this shirt was easier said than done).

Millie participated in everyday of spirit week. On “80’s Day” the students could dress in 1980’s fashion or like they were 80 years old; Mill was the only one in her class that dressed like an old woman! I loved it. She had her hair in a bun, wore a pair of glasses from her dress-up bin, and a tucked in, chunky sweater. She dressed up as Cindy Lou for “Dress like a Christmas Character Day”. Chris was impressed with how I did her hair; up on the top of her head with an empty water bottle. Mawmaw crafted a snowman outfit for Mill with big black buttons for “Dress Like a Snowman Day”. For “Dress Like Your Favorite Book Character Day”, Mill wanted to be Amelia Bedelia. She dressed just like her with a red cardigan and a flower headband. I photoshopped Millie into a page of the book – her librarian loved it so much she printed out the picture and hung it on the library bulletin board.

Her class did not go on any field trips but they did have fun “on-campus” activities throughout the year. The pumpkin patch came to their school in the fall and Mill got to pick out her own pumpkin – this turned out devastating for Millie because another student took home her pumpkin and she had to take home a pumpkin that she didn’t choose. Millie was given twenty dollars to spend at the book fair and she bought a book for herself and to my surprise, a book for her brother (a book about the movie Elemental). She made paper flowers with her prayer buddy and took them over to the senior living facility. Millie said her craft was falling apart because she didn’t use enough glue but it did have rainbow petals so that made it all better. They also had a, “Teddy Bear Picnic” where they brought a blanket and teddy stuffy to school and got to eat their lunch outside. They learned the song, “Teddy Bear Picnic” and got to take a picture of all their bears. Millie took in an extra bear stuffy for a student who didn’t have one (completely her doing). His mom reached out to me later and thanked me for her kindness.

Millie’s senior prayer buddy is a dream. She was so fortunate to be paired with such a kind senior. Kennedy took pictures with Millie at the senior night football game (Mill did an afterschool, cheer leading camp for a week and then got to cheer at the high school football game.) She came to Mill’s 6 year-old Barbie birthday party and brought a gift, she crafted Mill’s Valentine’s Day card box with her even though she was absent the day the class made them (Millie had perfect attendance all year until she dropped the tablet on her toe and needed x-rays and a boot. She told her teachers, “It was disappointing and expensive!”). Kennedy would help her on the monkey bars at recess. She would also send me pictures of them together when they’d meet during school. Kennedy even went to the Kindergarten Graduation and gave Mill a Barbie and bouquet of flowers! I have a feeling we’ll keep in contact with this sweet, young lady.

The school was so great about inviting the families into the building and hosting events. This is such a great way to build community. The grandparents were invited to a special vocal performance for Grandparents Day. I took a half-day off of work and attended her Christmas Chapel – Millie sat next to her senior buddy, Kennedy and I sat in the wing so I could see her. She was wearing her plaid, Christmas dress and Maryjanes. The pastor gave a sermon on making memories at Christmas time and how his family drank chocolate milkshakes every year while his dad read, “T’was the Night Before Christmas.” We tried doing this too but neither kid liked the milkshake.

“And she gave birth to a baby boy.” was Millie’s solo speaking part during the Christmas program. She walked up to the mic and spoke that line in front of hundreds of people. We were so proud of her. The spring musical was about summer camp and bugs. We enjoyed going to the Fine Arts Night; we made a Pigeon cake for the library fundraiser (I don’t know how I did it. I made this cake after an 8-hour car ride and it was my first time working with fondant.) We ended up buying the cake back and winning a piece of pottery. Mill loved showing us her art pieces hanging in the hallway. She painted a walrus and a self portrait. I accompanied Millie to Muffins for Mom (the muffins were small so I gave mine to her) and Chris went to Doughnuts for Dad. There was a Daddy/Daughter dance in March; check out Chris’ post for the details of that event. Finally, we all attended Mill’s Kindergarten Graduation where she sang songs, received her diploma from her teacher, and officially became a first grader.

The school sent home embroidered, graduation gowns for the kids to wear and take pictures in before the graduation, which happened at night, and the gowns had to be returned immediately after the ceremony. Because of this, we threw Mill a party before the graduation ceremony, with pizza and cake and invited the whole family to come and take pictures. I set out her artwork, binder of school papers I kept throughout the year, and her student of the month certificate (Mill didn’t even tell us about this award! When Chris took Millie to Easter service practice, another teacher saw them in the hallway and congratulated her on her student of the month award. We were so proud of her! She was awarded on her diligent faith). I crafted Millie a pair of sunglasses that said, “K Grad”. She received cards with money and new books.

I read this post to Millie and asked if she thought it was any good and she respond, “I think you should write it all over again.” Rude.

Baby

Atlanta

Featuredby motheringmillieLeave a Comment

Wells absolutely loves aquariums; he is obsessed with sharks and has been for years. After watching “The Aquarium” on Disney+, I knew we had to take him to Atlanta to see the Georgia Aquarium. Chris had zero interest in a trip to Georgia so I had to a bit of convincing to get him on board.

My key points:

Atlanta is less than an eight hour drive; if we left before breakfast, we could be there by dinner.

We had a goal before Millie was born to take her to as many states as possible before her 18th birthday and none of us had ever experienced GA (other than flight layovers).

There is more to do than just the Aquarium, (which btw is no. 1 in the nation) Olympic Park, a Children’s Museum, the Chattahoochee River, The Coca Cola Museum, etc…

Basically, he wasn’t thrilled about the trip to Atlanta but he surely didn’t want to be left behind. Spring break 2024 was when we booked our trip. Wells counted down the days until our vacation. “Saturday, Sunday, A-wanta!”

Chris’ grandfather was in poor health, had fallen, and was hospitalized two days before our trip to Atlanta. Grandpa was unresponsive when we left. Unfortunately, while we were driving to Georgia, he passed away. I read chapters of his memoir out loud while Chris drove into the night. There was a full moon. It was a very tearful drive.

We didn’t know we had entered the state of Georgia until we stopped at a rest stop and the floor mat said, “Welcome to Georgia, Y’all!” We needed gas so we stopped at the infamous, “Buck-ees” and we were amazed at the store. There were beavers everywhere; on bathing suits, hats, tee-shirts, fanny packs, athletic shorts, travel pillows, even onesies. Crosby was not thrilled about being placed in a pile of Buck-ee stuffies for a photo op. The workers yelled encouraging call-and-response anecdotes to each other working behind the counters. Chris was super impressed with his veggie burrito.

The Atlanta skyline was so bright and long; the city seemed like it went on forever. Our hotel was right off the freeway and our room faced the Georgia Aquarium’s parking deck that had a huge image of a whale shark. Wells was disappointed that we weren’t going to the aquarium right then (it was after 9pm).

The hotel room had a sliding door to the bathroom and Mill pinched her finger; thankfully, the ice machine down the hall fixed the tears. Millie and Wells slept on the hide-away bed with lots of extra pillows. We watched an episode of Bluey, the kids requested it and even though we explained we didn’t have streaming on the hotel TV and couldn’t guarantee Bluey was going to be playing, it indeed was. Our point was mute and they still don’t understand cable television.

We woke up and ate the complimentary hotel breakfast; nothing special but the bigs liked going down with Daddy to get the food (although Chris said Wells was more of a hindrance than a help). We loaded up the double stroller, that has a platform on the back for Mill to stand on, and left for the Atlanta Children’s Museum just a few blocks away. I guess I assumed since I was on spring break, everyone else was too however, there were many elementary field trip groups at the Children’s Museum so we had to navigate through lots of kids, teachers, and parents. Millie and Wells enjoyed painting on the walls, doing nature yoga (Wells broke out of his pose to dance and Mill all but tackled him down to the ground and said he was embarrassing her.) Millie and Chris built a butterfly house together out of recycled materials, and Wells dug for fossils in the sand. Crosby and I hung out in the baby section crawling around and watching the big kids play.

Thankfully, I struck up a conversation with a mom in the baby section about the Georgia Aquarium and how that was our next adventure. She mentioned that she and her daughter were there the day before and the dolphin show was their favorite part. She showed me how to reserve tickets for the dolphin show, which proved to be amazing. It was fully reserved by the time we arrived so I was grateful for the advice.

After the kids had tried all the things at the Children’s Museum, we walked through Olympic park to get to the Georgia Aquarium. Along the way, we stopped at a playground for the kids to climb and enjoy the fresh air. Crosby liked crawling in the tube. It was drizzling and Millie slipped trying to climb on the equipment; thankfully, she wasn’t hurt. Once the rain started to pick up, we made our way to our next destination.

Entering the aquarium looked like an atrium of a shopping mall and it was crowded. We were all hungry so the first thing we did was order lunch at the cafe; they had a delicious, vegan burger and fries. The dining area was super busy but we were able to find a table in the back corner so I could nurse Crosby inconspicuously. A family was waiting for our table while we were wrapping up our meal so we quickly cleaned up and went exploring. We checked out some crocodiles and frogs and passed a window that showed the top of the largest tank in the aquarium. It was the first time we saw a whale shark and it was amazing; the size of the fish was unreal.

When it was time for our scheduled dolphin show, we, as well as hundreds of other people, were escorted into a large theater where instead of a stage, was a large tank. We found seats close to the front but upon closer inspection the back of the chairs read, “soak zone”. We prepared the kids for the inevitable dolphin splash as best as we could however, Millie was freaking out about it. She was bringing up getting splashed every ten seconds (maybe every 8 seconds) When the dolphins swam and jumped high into the air, they were spectacular. The trainers said that dolphins feel like wet hotdogs and that stuck with Wells. Of course, we got soaked by the flick of a dolphins tail; Crosby cried but the big kids thought it was funny. It was a fin-tastic show (Chris would appreciate the pun.)

After the dolphin show, we went to see the crown jewel of the Georgia Aquarium, the Ocean Voyager exhibit. This tank has over six-millions gallons of water and home to not one, but two whale sharks! This aquarium was breathtaking. I truly do not have the words to describe how it felt to look under the oceans surface. The manta ray was majestic. The rare, beaked stingrays were fascinating. But the whale sharks stole the show; their size, their spotted backs, and their wide mouths were just outstanding. We could have sat at this exhibit all day; we watched the fish for a long time while Crosby got out of the stroller and crawled around.

I gave Wells my phone and let him take pictures. He said, “You have to send those to Aunt Mollie right now.” We had visited our Aunt Mollie just two weeks prior to this trip when she was placed in hospice care and she told Wells how much she loved the ocean and sea turtles. It was so sweet that Wells remembered that on his own and wanted her to experience the aquarium too.

We explored the Arctic exhibit and it was the first time we saw beluga whales! (Raffi’s Baby Beluga song is one that I would sing to the kids). The whales were so entertaining; it was cool to see them in real life after watching them on TV. The four belugas took turns swimming toward the glass, flipping and swimming upside down. Their body shape and muscle structure looked so interesting – Chris said it looked like a person in a white suit swimming around. They looked so happy to be swimming together.

The shark tank was absolutely terrifying. There were 19+ sharks swimming around including giant hammerheads swimming in tanks above our heads. Wells was watching the sharks when he let out a loud fart. I was so embarrassed and of course everyone around us just chuckled, including Wells. Chris pulled him aside and told him that wasn’t polite. We checked out the coral reef tank that held really beautiful, colorful fish. We ended our aquarium adventure at the gift shop where we let each babe pick out a stuffy; Millie chose a purple, sparkly dolphin, Wells picked a blue, tiger-striped shark, and we got a whale shark, “Yushawn” for Crosby. I picked out a Christmas ornament and $500 dollars later (not actually 500 but a lot of money was spent) we left the Georgia Aquarium and headed back to our hotel.

We napped at the hotel and when we woke up, we were all hungry. We checked out this completely vegan restaurant called, Cafe Sunflower in Buckhead- maybe a 15 minute drive from our hotel. The area was super “hip” and we were so impressed by the menu options. Chris and I couldn’t believe we could eat everything on the menu; we felt normal for once! We got potstickers and brussel sprouts for appetizers – delicious. Wells ordered noodles, Millie had a cheese quesadilla, Chris had sesame chick’n, and I had chick’n parm. The food was unbelievable. The kids were well behaved during dinner; we played Micky Mouse on the phone for Crosby. For dessert, Chris and the kids ate a decadent chocolate cake (Wells and Mill practically licked the plate) and I ordered the carrot cake. We told the host, which happened to be the owner, that it was the best dinner we’ve had in six years. He said, “Every culture has vegan dishes, I just put them all on one menu.” We were so impressed.

When we went back to the hotel, the bar was showing the Ohio State vs Georgia men’s basketball game on the big screen. The game was in Columbus and here we were in GA, but there were other Buckeye fans at the bar. The Buckeyes took a loss but we struck up a conversation with the bartender who took a liking to the kids and she gave us some suggestions of fun things to do with them in Atlanta.

We took her advice and went to the Museum of Illusion the next morning. The museum was on the second floor of an outdoor shopping mall; it was a beautiful location. Educators got in the museum for free and both kids were under age limit for a ticket so we were able to experience this activity for the cost of Chris’ admission (everything’s expensive so it was nice to get a cost break). We walked through the exhibits and took pictures in different poses. The kids really liked the peg board that you could imprint your body behind and it would show up on the front side. They tried to spell out O-H-I-O but Millie’s belly got poked and it actually broke the skin.

We ate lunch at the mall but of course everyone wanted different things; I made a delicious salad at Salata, Chris got Indian food, and the kids got Asian noodles. We ate outside at a picnic table. Wells picked a beautiful flower for me from a nearby bush. We stumbled upon a “fairy door” heading back to our car, which we found out were placed all around Atlanta. You scanned the QR code next to the small door and Instagram showed you what it would look like to “open” the door. This door had bright butterflies flying out. Millie loved this and as luck would have it, we’d find two more doors on our trip.

Thankfully, our Columbus Zoo membership has reciprocity at many other zoos in the nation and the Atlanta Zoo was one of them. It only cost us $36 dollars for our family to get in. We saw a baby rhino (we participated in a naming bracket for weeks post-visit and our favorite name was chosen, Zuri!) and met a family from Miami vacationing in Atlanta to get away from the “spring-breakers”. We saw African elephants (we have only ever seen Asian elephants) their ears were much larger and they were more orange in color versus the grey we were used to seeing. We saw the biggest owls we have ever seen; they were as tall as my leg. There was an awesome jungle- gym play area that the kids got to explore. We were too late for the rope obstacle course but maybe next time we visit we can add that to our adventure list.

Our highlight of the zoo was seeing the pandas. There were three that we could see and two were awake! Yang-Yang, the oldest panda at 27, had an orange tint to his back. The keepers explained it was because he loves the taste and smell of hot sauce so sometimes they give him some and he rolls around in it. Wells and Mill both got little panda stuffies that hugged a lollipop (Millie’s is now affixed to her backpack strap – the stuffy, not the lollipop).

When we were viewing the giraffes, Wells realized he had forgotten his sunglasses in a pretend birds nest in the bird enclosure we had just left. Wells and I raced back to the exhibit and unfortunately, his glasses weren’t there. I said, “Sorry bud, someone must have picked them up.” And a man with his son who was standing behind us said, “Are these what you’re looking for?” Wells was so happy to have his sunglasses back – the little boy who found them was not so happy to give them back.

We stopped to rest on a bench so I could feed Crosby and a large carpenter bee kept hovering over us. Chris was irritated with it and he swatted it out of the sky with his hand. The bee fell to the ground, we presumed it died, and the kids thought it was hysterical. Then, we were all freaked out because after we had a good laugh, the bee was gone!

We left the Atlanta Zoo and took a walk through Olympic park. The kids played duck, duck, goose with a group of kids outside the Coca-Cola museum. Wells’ laugh was incredible. We were proud of our kids for picking each other during the game so that neither one felt left out. Mill proceeded to tell another mom how she thought she had pink eye (she didn’t, she was just oversharing).

We continued our adventure to the fountains and watched as a lady posed to take pictures inside the water display. When the water went down, Wells ran into the fountain and copied the lady’s poses. It was fantastic; even the lady laughed. Millie wanted to get into the fountain so we told her that when the water went down, she was to run in so she didn’t get wet. Of course, Mill and Wells ran at the same time and collided into each other. They got soaked when they were laid out on the pavement and the fountains splashed back up. No one was hurt but they were both wet and cold.

We could’ve turned around and went back to the hotel but we were hungry and weren’t ready for the night to end. The Atlanta Margaritaville was .1 miles away. I got the bigs new, dry shirts and Crosby a mimicking parrot from the gift shop. The kids ate French fries and veggies (not a whole lot for us to eat there) and Chris had black bean tacos. We all got colorful drinks and took fun pictures. We were absolutely exhausted walking back to the hotel; Crosby fell asleep in the stroller.

The next morning we packed up the jeep (we would be staying at a different hotel that night) and headed to the Georgia Museum of Natural History. The humongous dinosaur skeletons in the atrium were outstanding. In the spider exhibit, the bigs enjoyed playing a large, bug eating game similar to Hungry, Hungry, Hippos. They were talking so encouraging to each other it made my mama heart happy.

We saw an amazing seashell exhibit and Millie found some shells she just knew were assembled by mermaids. I tried to put Crosby in a 300lb clam shell for a quick pic but Chris would not let me. Anytime Crosby saw a taxidermied animal he’d say, “og” really loud. I’m pretty sure he was trying to say dog and it was adorable. The kids loved the outdoor playground and elevated pathways. While the kids played, I struck up a conversation with another mom who told me about other adventures we could explore the next time we go to Georgia; the Lego museum, the balloon museum, and the ventriloquist museum (probably would skip that one). Once bigger kids started taking over the playground, we continued on our way.

Along the path, we found another fairy door and when you scanned this one, dinosaurs walked out. There was an obstacle course with climbing parts that the bigs went through with Chris (he had to turn around when he found he couldn’t fit through the tunnel). Before we left the Natural History Museum, we stopped at the gift shop and found swords on sale (what luck!) so we bought two in preparation for that nights activity, Medieval Times. Heading back to the car I asked the kids, “If we come back to Georgia, who should we bring with us?” Wells quickly replied, “Definitely Grandma”.

We checked into our hotel room and took a nap before the show. The outside of Medieval Times looked just like a castle even though it was attached to a shopping mall. The woman at the ticket counter sat us in the “yellow knights” section and Chris asked her if it was okay to switch us to the “blue” knight for Wells; she said the seats would be further up but we didn’t care. Wells wouldn’t have accepted any other color but blue and Millie was okay with it because pink wasn’t an option.

Wells was devastated that his sword that we bought from the museum did not light up like the swords they were selling at Medieval Times. As we waited to be seated, we got the kids water in light up cups that looked that a castle tower but the lights ended up being too bright for Wells’ eyes. Chris and I were both irritated with how often people walked around trying to sell us things for the kids; roses, swords, light up wands, etc. (of course the kids wanted everything and had mini meltdowns every time we said no).

The vegan options at Medical Times were delicious; hummus plate, corn on the cob, bean soup, and Italian ice. The kids enjoyed watching the horses, the swords spark when the knights fought, but their favorite part was the falcon flight around the theatre. The blue knight did not win but Wells didn’t seem to mind. Chris was so happy the kids were into it – this was his addition for the trip. As we were leaving, we checked out the picture they took of our family and to my surprise, it was awesome (it can be difficult getting three kids to look in the same direction) so we bought the picture as a souvenir.

The next morning, we packed up our things and ate Dunkin’ Doughnuts for breakfast. Our final stop was the Chattahoochee River. We had been singing, “Way down yonder at the Chattahoochee” for weeks before our trip (the lyrics are pretty inappropriate, we didn’t let the kids listen to the actual song, just our ‘made up’ version). Crosby was asleep by the time we arrived so Chris stayed in the car with him while I got the bigs into their rain boots and experienced the “muddy water”.

The kids danced and jumped in the water. We laughed when I had to dump half the river out of Wells’ rain boots. The kids laughed when I said, “You have the Chattahoochee in your boots!” We saw people in row boats, ducks, people walking their dogs, and others eating lunch by the water. We walked down to a dock and walked the length of it. The water was really high and fast moving. Millie wanted to walk back through the water and while she was trying to step over a tree root she fell into the Chattahoochee. Thankfully, I was able to grab her up quickly and she wasn’t hurt, just soaked. We changed Wells’ socks and Mills entire outfit before getting back on the road.

The ride through Georgia was stunning, which was nice while we sat in the notorious Atlanta traffic. Purple wisteria was in bloom all through the trees along the highway. I was stabbed in my head, neck, and shoulders many times by the swords of my knights from the backseat. Wells said, “I wish we could live here.” I told him that, that was a sign of a good trip; when you don’t want to leave. We have plenty more exploring to do in Georgia and will definitely be vacationing back there again.

Baby

Millie is a Kindergartener

August 28, 2023September 22, 2024by motheringmillieLeave a Comment

As Chris carried Millie up the stairs tonight, hot tears streamed down my face. My early baby, my special girl, starts Kindergarten tomorrow. Where has the time gone?

I remember sleep training Millie. Chris would carry her upstairs and her little hand would reach over his shoulder to wave at me. I’d say, “I love you, Mill Moo. Jesus loves you, angel.” One night, when Millie was maybe eighteen months old, Chris said, “Alright, it’s time for bed.” Mill was sitting on my lap and she waved at him as if to say, “Well, goodnight then daddy.” My sweet, sassy girl.

After church, I dressed Millie up in uniform and took pictures of her with a “back to school” sign displaying her age, height, and what she wants to be when she grows up – a ballerina, of course. (I figured it would make for a less stressful morning if we took pictures ahead of time.) Mill said her polo sleeves made her look like a prince and that the uniform should have included pink and purple. When I showed her the pictures I took of her, her response was, “I look so tall!”

We read, “On the Night Before Kindergarten”. I packed her a heart-shaped, butter and jelly sandwich (her school is nut free), carrots, strawberries, and Oreos in her Barbie lunchbox. She requested a chocolate chip granola bar for her mid-morning snack (and ended up eating Pringles instead).

Me, “Are you excited for tomorrow?” Mill, “I’m most excited about the tablet. I can’t wait to read the books on the internet.”

Me, “Do you think you’ll nap during quiet time?” Mill, “Maybe I’ll rest my eyes a little bit.”

Me, “Are you worried about anything?” Mill, “You know I’m brave. I’m not nervous.”

Millie woke up before the alarm and climbed into our bed. She said, “Today’s the day, it’s finally here!” We said affirmations in the mirror while I curled her hair. She ate French toast sticks for breakfast while Chris and Wells kicked the soccer ball in the kitchen. We all piled up in the car to take her to school as a family.

As she walked into the school, she stopped to wave back at us and show the I love you sign. I watched until her koala backpack had long gone into the building.

I asked Mill when she got home, “How was your day?” She said, “Kindergarten is the best!”

Baby

To My Pre-K Graduate

May 24, 2023June 13, 2024by motheringmillieLeave a Comment

Millie, my shining star, you amaze me every. single. day. I remember receiving a card for my college graduation, from my grandmother, about stars. She told me how amazing she thought I was and that I was “a star amongst the stars”. I’ll be honest – my own self doubt, mean things people had said about me in the past, my anxiety about what was to come, never allowed me to let her words sink in. Here I am today, telling you how amazing I think you are, my shining star, a beacon of light in this crazy world, and I pray that you realize your worth. Your immense possibilities. Your chance to make every day, new. My grandma thought these things of me and my angel, she and everyone else that knows you thinks them of you.

Did you know that neither me or your dad went to pre-k? We had no idea how much you’d learn this school year. You blew me away with your knowledge of the Bible stories (the first time you said Israelites with your little voice, my heart melted). Your teachers love you. Goodness, I’m so incredibly proud of the work you’ve done this year and the person you are becoming.

A message from your Daddy:

Mia, I want you to know that I am so proud of the little girl you’ve grown to be. You constantly surprise me with how much you’ve learned and how giving and social you are. You are always trying to help make sure that everyone around you is having just as much fun as you, whether it’s helping your dance classmates to get in line for an activity, reading your new book over and over again with everyone in the room, or practicing new jokes with me to make sure you can make the next person laugh. I love to see that your priority is always to bring joy to the people around you.

Every day that I picked you up from preschool this year, I just waited for that first moment you saw me because the smile that lights up your face when the door opens means the world to me. I hope that is the first reaction you get from seeing me forever, because I will always want to bring joy in your life.

I am so excited for you to start the next step in growing up, and I know you’re ready for it. You are going to love school, and I can’t wait to see how much you continue to grow and learn. As I’m writing this the morning of your graduation, you just came charging out of your room and yelled “today is the day!” Every single day you wake up with that same excitement to tackle new things. I’ll always be there cheering for you the whole way.

Happy Graduation Day, Millie Moo!

Baby

Jackhammers

May 4, 2023September 22, 2024by motheringmillieLeave a Comment

Blue balloons welcomed us home; it was Saturday. Millie and Wells both had special stuffed animals to give to their baby brother. A nurse at the hospital gave us stickers, “big sister” and “big brother”; they were so proud. They both took turns holding Crosby and kissed him on his head. I felt so good to be home.

To make sure Crosby was eating enough through the night, we supplemented with the soy-based formula from the hospital, in addition to my breast milk. He was lethargic from being jaundiced and didn’t want to wake to eat. My milk had finally come in; I was pumping at least 3oz of white, thin milk every session. We made an appointment with the pediatrician for Monday morning for a weight check.

We were unable to book Crosby’s appointment with our regular pediatrician because her schedule was full so we had to see another doctor in the practice whom we didn’t know. When we were checking Crosby into his appointment, the receptionist asked if we had been exposed to Covid in the last ten days. I was honest and told her that I was currently Covid positive (I should’ve lied). We waited a long time before the doctor’s assistant came out to inform us that I could not go back into the room with Crosby; I was told that I could go to my car and they would put me on speaker phone for the visit. Oh heck no. I said, “It has been five days since I tested positive for Covid. If I wasn’t on maternity leave, I’d be expected to go back to work today and teach 500 children. Why can’t I be in the room, masked, with my newborn?” The aide came back after speaking with the doctor and said I was allowed to go back into the room with Crosby.

The medical assistant stretched Crosby out on the table and measured him an inch shorter than what he was measured at the hospital. He shrunk? My emotions were already heightened from the debacle in the waiting room and now I definitely had an attitude. We took off Crosby’s clothes to weigh him and found that he had lost more weight since leaving the hospital. How? I couldn’t believe it. I felt so defeated. The doctor came in and immediately told us that we needed to take Crosby to Nationwide Children’s Hospital to run some tests because he was concerned that Crosby could have brain damage from the lack of nutrition. I got defensive, “My milk just came in. I’m going to take him home and feed him even more. We do not need to go to the hospital for testing.” The doctor told me that if I did not take Crosby to the hospital that he would call Children Services. With that, I started to cry, like ugly, gasping, desperate cry. The doctor asked to examine Crosby. He took one look at his umbilical cord and said, “You’re not only going to the hospital for his weight loss but I am calling the ID unit, Crosby has an infected umbilical cord.”

Omphalitis is an infection of the umbilicus and/or surrounding tissues, occurring primarily in the neonatal period. It is a true medical emergency that can rapidly progress to systemic infection and death, with an estimated mortality rate between 7 and 15 percent.

The doctor left the room to call the hospital to let them know to prepare a room. I was an emotional wreck; how did this happen? Chris and I both noticed that Crosby’s cord site looked different than Millie’s and Wells’ did, but we didn’t know it was from an infection. We felt like failures for not realizing something was wrong. Thankfully, while the doctor was away, our regular pediatrician came in to see us. She reassured me that I was doing everything right in regard to breastfeeding. She told us that if weight loss was the only issue, she’d send us home but she looked at his umbilical cord and agreed that we needed to get it looked at by the infectious disease doctors at the hospital. She explained that the umbilical cord is a direct portal to his insides and that we needed to treat the infection, quickly.

We rushed home and I packed a bag for me and Crosby. I had just cleaned out my hospital bags. I never expected to be packing them up again. When we checked in at the hospital, the receptionist gave Crosby a toucan chime-toy to hang on his car seat. It was a far walk to the infectious disease unit – probably too long for someone who had just given birth days before. Once we were in our room, a nurse came in and took vitals from Crosby. A resident doctor took pictures of Crosby’s umbilical cord site. It was decided that Crosby would be put on antibiotics for a possible infection. If the redness and swelling of the site went down, we’d know that the medicine was doing it’s job. We were warned that if Crosby were to have a drastic fluctuation in body temperature, they would have to perform a spinal tap. I prayed to God that a spinal tap would not be necessary.

Two nurses came to administer Crosby’s IV. They couldn’t find a vein in his little arm. It felt like an eternity that I sat and listened to my 5lb baby boy scream. Tears soaked my face mask. The blood they eventually were able to draw, clotted. I came up out of my chair. I asked, “How?” The nurse said, “It happens.” and continued to reassure the younger nurse that she was doing a good job. I said, “Doing a good job is keeping the blood viable from my son. You should be moving it!” When they were finally done taking multiple vials of blood, they capped the IV and swaddled him tight so that he couldn’t pull it out.

My face was so swollen from crying and Crosby was exhausted from crying. It was getting late and Chris and I decided that he would go home for the night to be with Millie and Wells. Chris helped me figure out how to order dinner. I set up my “bed” on the squeaky recliner chair next to Crosby’s metal crib. Chris didn’t want to leave me and Crosby. He said that leaving us in the hospital was the hardest thing he’s ever had to do.

I was trying to breastfeed but feeling so self conscious about how much I was getting so I was also pumping (which was not coming easily with the stress). I was asked to label my bottles and call the nurse anytime I pumped or needed the milk from the fridge. Every diaper that came off Crosby had to be weighed. We went through three swaddles that night; he peed every time I’d change his diaper. Between diaper changes, feeds, IV antibiotics rounds, and vital checks, I did not get any sleep. Around 3 am, Crosby felt cold to the touch. I frantically called the nurse and she checked his temp, which was normal, praise God. They found Crosby a baby hat and I watched the Elvis movie.

At 7am, the jack hammering started. Construction was taking place below our room. I couldn’t have slept if I wanted to. Chris came back just in time to hear from the doctors during their morning rounds. From what they could tell, Crosby’s umbilical site seemed less inflamed. His cultures had not grown. They told us that if he stayed on this trajectory, we could possibly go home at the 24 hour mark. With that good news, I was finally able to catch a few hours of sleep.

At the 24 hour mark, the doctors hadn’t come back in to speak with us. We asked our nurse if going home was still on the table and she told us, no. Every test resulted in Crosby responding well to the antibiotic and we were given no reason other than “further observation” for making us stay another night. I voiced that the hospital wanted us to stay because they could charge our insurance 10k a night for the room (a room with a squeaky chair and construction noise). If we chose not to stay, we’d have to sign a release saying we were leaving against the doctors wishes and in turn, our insurance might not pay for the services we received. We decided to stay for “further observation”.

We FaceTimed with the kids so that they could see Crosby and me. It was devastating telling them we weren’t coming home yet. Then the thoughts of never bringing Crosby home crept in and I couldn’t stop crying. I needed my kids, and sleep, but that I night I wouldn’t have either. Chris left to be with the big kids and I turned on some movie with J-Lo.

I was wearing a pad the length of my arm. My “bed” sheets kept slipping off the back of the second, squeaky chair. I was expected to log all feeds (which was incredibly difficult because once fed, Crosby would sleep on me and I was afraid that moving would wake him). Nurses were in and out of the room every two hours doing vital checks. IV antibiotics were administered every 8 hours which meant a 2AM beep and flush. I should’ve been drinking more water. All this to say, when the lactation consultant showed up in the morning, I was miserable to her. She wanted to weigh Crosby before and after a feeding and I yelled at her to get out. It was his infection that was making him lose weight, not my breast production. I was an emotional wreck and the jack hammering continued through morning rounds.

When the doctor came in, she saw that I was distressed. She was super comforting and reassured me that Crosby was getting better and stronger. She agreed that his swelling was lessening and that he was responding well to the treatment. Chris came in during her examination and we both exhaled when she told us that we would be discharged before noon. A nurse explained to us the schedule of his medicine and how much to give him. She told us that it would be most pleasant for Crosby if we gave him the medicine with him sitting up for 15 minutes. We were instructed to go to the pediatrician the next day for another weight check and exam. Before we left, I gave the nurse our left over meal cards for another family to use during their stay.

The pediatrician told us that because of the trauma to the umbilical cord site, Crosby could have a herniated belly button. If he does, he could need surgery before he turns five to correct it.

I desperately wish I could “re-do” Crosby’s first week in this world. We will never know how Crosby got an infected umbilical cord; could’ve been a nurse, the aide who bathed him, the doctor who circumcised him, even me.

Baby

IFAP cont.

Featuredby motheringmillieLeave a Comment

We found out about my compromised X chromosome when I was already pregnant with our third. We chose not to find out the gender and I prayed it was a girl; a girl who wasn’t a carrier. 9 months later, it’s a boy, Crosby, and he has IFAP.

Two weeks after Crosby was born, Wells had to go under anesthesia to remove his eye tubes (good for nothing) and for the corneal specialist to take a closer look at his eyes. After the procedure, the doctors informed us that there was no corneal scarring and no signs of early glaucoma – huge relief. There was eyelid inflammation and of course, the blockage of oil ducts. His dry eye is chronic; the flourometholone and erythromycin are helping with that. Overall, the ophthalmologist and corneal specialist agree that the treatment plan he’s currently on is definitely the best thing moving forward.

The summer time is the absolute worst for his dry, cracked feet. Flip-flops, chlorine, no socks – it was creating many deep cracks that sometimes bled. The Urea cream that we were prescribed (that we found cheaper on Amazon) wasn’t absorbing into his heels. Thankfully, my in-laws’ neighbor is a doctor and he was headed up to do some research at the Mayo Clinic. He offered to pull some information about IFAP for us which turned out to be incredibly helpful. He brought back a stack of papers – all related to, or resources for IFAP syndrome. I read through case studies that I hadn’t seen before. It was surreal reading about other boys with the exact condition as Wells. Three different children were treated with a medicine, Acitretin (10mg per day) and saw improvement in skin features. I reached out to the dermatologist right away.

The dermatologist said that Acitretin could smooth the rough texture of his skin and help with the cracking on the feet. She did not expect hair growth from the medication (all of the case studies from the Mayo Clinic said nothing helped the Alopecia). She explained that Acitretin is not a medication without side effects (skin drying out, possible growth abnormalities, high liver enzymes). There would be regular monitoring of blood work and x rays to safely have him on the medication.

We learned that Acitretin is usually used in treating psoriasis. Women cannot take this medication because it can cause reproductive issues. We read about people who have used and currently use this medication and weighed out the pros and cons. Wells can stop taking this medicine cold-turkey if we notice any negative side effects, it’s non addictive – it’s a vitamin A derivative, and you can start at a very low dosage and still see results. Some scary cons were lack of growth (already an issue if you have IFAP), chapped (to the point of cracking) lips, it’s only offered in capsulated form, and possible abnormal blood results. After careful consideration, we decided to try Wells on the Acitretin.

Wells’ preliminary blood results came back with elevated triglycerides. The dermatologist called me and asked if we fasted before the blood draw. I was like, “Nope. He ate TimBits.” My bad. Even still, we were given the green light to start the medicine. The Acitretin only came in capsule form so we were encouraged to give it to him by opening the pill and pouring the medicine onto something with high fat intake. We decided on whipped cream. Wells began taking the Acitretin and within two days, his skin felt smoother than it had ever been. He did get a gnarly sore on the corner of his mouth because his lips were so incredibly dry from taking this medication. It hurt him to open his mouth too wide especially when he was eating. We informed the dermatologist and she recommended we try taking the medicine every other day. I noticed that the daily vitamin that we were giving him also vitamin A, 100% of his daily value. We started giving Wells the Acitretin once every three days and the balance was perfect.

Crosby has the sandpaper textured arms and legs. His cheeks aren’t as bad as Wells’ were but they’re rough, too. He has two large, bald patches on the top of his head. His eyes water when we take him outside. His nose constantly runs. Until Crosby’s feet crack to the point of discomfort, he wont see the dermatologist. It’s a waiting game to see how many side effects he’ll have of this awful syndrome.

I was let down at our annual, geneticist appointment. Last year, I requested from the doctors to find us a support group for IFAP (didn’t happen). In fact, the doctor said I was the specialist on IFAP now and I know more about the syndrome than him, the doctor (real reassuring considering I don’t know a whole lot). We were told that the type of Alopecia the boys have is called, Atrichia, a rare, recessive form of alopecia where people are born with hair that falls out and is never replaced. Wells has a patch of hair like this and most of Crosby’s head has no hair. The rosemary oil we’ve been buying and putting on their scalp does no good; the hair loss is irreversible.

Nationwide Children’s hospital hosted a Rare Disease Day on March 1st, that my mother-in-law and I attended for knowledge about participation in research studies for the boys. Organizations like NORD and A Kid Again set up booths to spread awareness of their services. The MC spoke about rare diseases being embodied by the zebra; when you hear hooves, you think horses however, sometimes hooves can mean zebras!

The keynote speaker was a doctor and patient who discovered, and named, a rare disease. They were incredibly transparent about the research/patient experience (no one wants their children to feel like lab rats). We were informed of the website clinicaltrials.gov where we’ve already found studies both active and completed about parts of IFAP. Ichthyosis is really being researched in France.

At the end of the session, the MC asked for everyone in attendance to take a group photo. By chance, the doctor who spoke stood next to me! I asked her, “What should I do if our doctors aren’t looking into research studies for us? I know more about our rare disease than the doctors do.” She explained to me that it’s the doctors who will be able to find the best clinical studies for my boys and that I should reach out to them and let them know that I am interested in research studies even if it’s done by a fellow and not a “famous” doctor. I told her that some research is being done in France for parts of IFAP syndrome to which she said, “Sounds like that could be a nice vacation. I have patients in France. Try to contact the doctor facilitating the protocol and see if they know anyone in the U.S. also doing this research.”

The breakout session we attended was about participation in research studies. It was suggested to contact the pharmaceutical company of the medication the boys are on to see if there’s research studies we can take part in. Researchmatch was another application that was mentioned to connect patients to clinical studies.

I learned that there is a Rare Disease Advisory Counsel that I might try to join when I get some free time (lol free time, what is that?) NCH has a program called “Connecting families” where families who are newly diagnosed can speak with families who have been through it. It would be incredibly rare for someone to have IFAP but I am definitely interested in potentially helping another family facilitate life with a rare disease. There are also rare disease sibling support groups that I could look into later for Millie.

A week after the Rare Disease event, I was informed that our family qualified for, A Kid Again. It’s a nonprofit organization that offers free, monthly events and activities for families dealing with a life-threatening condition. They handle all the expenses and details, so that families can simply enjoy themselves. I was excited that we were given this opportunity but at the same time I felt bad because my sons have poor enough health to qualify. (I gave that to them, that compromised X chromosome.) The kids don’t age out until they’re twenty so we can experience these fun adventures for a while. I know they’ll be something we all look forward to. We will go to our first outing in April!

Baby

Baby No. 3

March 26, 2023September 22, 2024by motheringmillieLeave a Comment

Chris and I celebrated our 7 year wedding anniversary and four weeks later received a belated gift – we were pregnant. I told Chris by leaving clues around the house however, he was not thrilled by the news. (We had just come to the decision that we were going to wait another year before trying again…whoops.)

I did not tell our family until after the 8 week ultrasound and honestly, their reactions weren’t what I was expecting; my father-in-law said to Chris, “Come here and let me slap you.” My brother said, “Don’t you know about condoms?” My grandma said, “I’m never babysitting for you on your anniversary again.” All joking aside, it was incredibly disheartening.

Because we weren’t trying to get pregnant, I was anxious about what I did and did not do, not knowing I was pregnant. I wasn’t taking folic acid or a prenatal. I had been in a hot tub. I drank alcohol. My OB reassured me that everything would be okay and that I didn’t “mess up” the baby.

Chris and I celebrated my 30th birthday in Chicago while my in-laws watched Millie and Wells. This was the first time I had been away from Wells over night. We FaceTimed and bought the kids souvenirs. To my surprise, I didn’t feel nauseous at all and we did tons of walking, went on a skyscraper tour, sat in the sun, went to two concerts, and ate lots of different foods – zero illness or fatigue. It was a great trip.

A week after Chicago, the sickness set in. The OB recommended a vitamin and sleeping pill concoction to ease the nausea however, I didn’t feel comfortable taking it. Sleeping came easy and actually helped the nausea; I would be asleep in bed by 9pm. Wheat Thins, grapes, and unsweetened tea were my nutrition. Brushing my teeth and clearing my throat were the worst; I’d throw up every time.

I swore this baby was a girl; I was super sick when I was pregnant with Millie but not Wells. Chris and I decided that we were not going to find out the gender of this baby. Having a girl and boy already, we would be prepared either way. Many people were supportive of our wanting to be surprised. Our OB said that less than 5% of his pregnant patients wait to find out the gender. We were excited to give ourselves such a big surprise.

Like clockwork, at 14 weeks, I was no longer sick. I began taking one baby aspirin every night to best deter the preeclampsia I experienced with Millie. My newest ailment was a clicking in my lower back, which my OB called sciatic nerve pain. (I found out later that this was actually my SI joint.) It clicked the worst at night, going up and down the stairs, or if I was doing housework. I started going to a chiropractor that specialized in pregnancy adjustments and this seemed to help for about a week at a time.

We didn’t tell Millie and Wells about the pregnancy until they started to notice. Wells would smack my stomach and say, “Big, big belly.” Millie noticed when I picked her up from school one day and I was wearing a form fitting dress. She said, “Is there a baby in there?” Millie and Wells were both excited when we told them they would have a new sibling in March. Millie wanted the baby to be a girl and Wells of course, wanted the baby to be a boy. On the way to ballet one Saturday morning, Millie said from the backseat, “Mommy, let’s talk baby names. I like the name Cora.” Wells liked the name William (Baby Shark’s fish friend) and Catboy. We gravitated to calling the babe, New Baby.

At our 20 week ultrasound, we found out that the baby’s legs were measuring in the 7th percentile. We were concerned so the OB scheduled another ultrasound at 26 weeks to make sure the baby was developing appropriately. (At 26 weeks the baby’s femoral length was in the 14th percentile and the OB was not concerned.) I was struggling to connect with this pregnancy because I couldn’t call the baby by name. We decided to do a 3D ultrasound so that I could see the baby’s face. Millie and Wells came to this appointment with us. This baby was so cute and looked so much like his/her siblings.

Third trimester was rough. My hips ached, especially in the mornings, I had so much pelvic pressure, and I was peeing every hour. At 33 weeks, my ankles and feet got really swollen. I was instructed to go to labor and delivery to get preeclampsia blood panels drawn. Thankfully, everything came back normal and I was able to go home. The doctor on call had four children herself and gave me some advice on how to make it through the duration of my pregnancy. She recommended that I sleep on a wedge pillow instead of on my left side. Fortunately, my grandma had a wedge pillow that I could borrow and within two nights of using it to sleep, keeping my hips straight and not collapsed on each other, my hip and pelvic pain reduced significantly. This doctor also recommended pelvic floor therapy because she was confident I’d have a uterine prolapse in my future…terrifying. When I told this to my OB, he disagreed with her and said there was no validity to her statement. Only time will tell.

We celebrated Wells’ third birthday with a great party. Family and friends came and most everyone commented on how “big” I was. “You didn’t look this huge the last time I saw you!” and “You’re as big as an elephant.” and “Sit down. You’re making people feel bad.” and “You’re ready, aren’t you?” and “If you get any bigger, you’ll pop!” It’s bizarre how pregnancy gives people the freedom to speak upon another’s body. All I wanted to do was throw an awesome birthday party for Wells – no attention on my body or the new baby.

After Wells’ party, my schedule was free to welcome the new baby. Because we chose not to know the baby’s gender, I went through both Millie and Wells’ premie, newborn, and 0-3 month clothes and washed and organized them. Chris and I packed (and triple checked) our hospital bags, we set up childcare for Millie and Wells, I stocked the fridge, Chris set up the pack-and-play, all in preparation for the babe.

Two weeks after my first labor and delivery visit, my OB instructed me to go back in because of high blood pressure (140/95). My feet, ankles, and fingers were swollen. The back of my legs felt numb. I had gained 10lbs in a week. I developed a constant headache. Gestational hypertension had set in and my OB planned an induction for the day I hit 37 weeks. I was nervous, anxious, and excited all at once. While I was hooked up to the monitors, a nurse asked, “Are you feeling those contractions?” I thought I was just hungry. The monitor also showed two deviations in the baby’s heart rate. An ultrasound tech measured my amniotic fluid – all normal. I was told to report back to labor and delivery if my BP was higher than 160/110. I was to check my BP three times a day and elevate my feet as much as I could. I was released for the night with an invitation to come back the next week.

My last day at work was bitter sweet; I would definitely miss my students. My colleagues gave me good luck wishes but it wasn’t until I was asked, “Are you nervous? Giving birth is scary.” that it kicked in that I was leaving to have a baby. I started to tear up because with that one question, I felt seen. I was nervous. Yes, this was my third pregnancy but every delivery is different. The night of my induction, I procrastinated going to the hospital because of my nerves. At 12:30AM, Chris and I went to labor and delivery to start the induction.

Because of the time of my induction, the main hospital doors were no longer open and we had to enter through the emergency room doors. We were scanned and all our bags were searched. (Two hospital bags, my purse, my camera bag.) When we got up to the labor and delivery floor, we could tell they were working with a skeleton crew because it took at least ten minutes for anyone to check us in. When someone did come to enter my information, it was a elderly woman who struggled to type. I was hot, nervous, and getting increasingly anxious so I sat down in a wheel chair for the rest of the intake.

Almost an hour after we arrived, a nurse finally came into the delivery room. She was old and seemed completely clueless to the situation so naturally, my blood pressure started to elevate. She asked, “Why are you in today?” Are you kidding? The BP monitor started to beep. Pointing to the flashing screen I said, “That’s why.” I was hooked up to monitors, my IV was inserted, my temperature was taken, and I was Covid tested. The nurse asked me if I knew how my OB wanted to start the induction. How was I supposed to know? I asked Chris to pull up my blog post about Wells’ delivery. We found that I started with a cervix ripening medication called, Cervidil. The nurse requested this of the resident doctor who then explained to us that they do not use Cervidil anymore. He said we could start on Miso, which I remembered taking with Mills delivery. He inserted the Miso, told me to get a mole examined by a dermatologist, and the contractions started.

Just as I started to dose off, the head nurse came into the room to tell me that my Covid test came back positive. You’ve got to be kidding me. That morning, I felt really tired, dizzy, and anxious but I chalked it up to the hypertension. I remember texting a coworker that I was experiencing my “monthly illness” from the snot-nosed kids that we teach, and she responded, “I hope it’s not Covid, it’s going around again.” That prompted me to take an at-home Covid test, which came back negative and set me at ease. That afternoon, I had an appointment with my OB and I mentioned to him that I was not feeling well. When he checked to see if I was dilated, I almost passed out. I took a nap when I got home and on the way to the hospital, I told Chris that I was feeling much better – praise God because birthing a child is hard enough when you’re healthy. I asked the nurse to give me another Covid test – there’s a chance it could’ve been a false positive, right? She tested me a second time and it also came back positive. My mind was racing; did Millie and Wells get this? Will my in-laws get Covid from watching the kids? Will I have to isolate from the baby? I started to cry. My baby was inside my Covid-positive body and I was going to have to deliver being riddled by the virus.

The nurse reassured me that the treatment I would receive wouldn’t be any different from any other patient because I was Covid positive however, there were protocols and rules the hospital required:

– Anyone entering the room would be in full PPE. Chris and I were encouraged to mask.

– In addition to Chris, I could only have one additional visitor for the duration of my stay; no birth photographer for this delivery, Mill and Wells couldn’t come to the hospital to visit, and I had to chose between my mom and grandma in the delivery room.

– Chris could not leave the room to get ice, water, coffee, etc.

The head nurse told us that 90 percent of women who give birth while Covid positive, do not pass the virus to their newborn; this was reassuring. The baby would be Covid tested during the routine newborn check. She was optimistic that having Covid while pregnant would have given the baby antibodies that would be helpful once they were born. I prayed the baby would not be born with Covid or contract it from me once they were here.

At five am, my cervix was rechecked. The Miso softened my cervix but I hadn’t dilated much more. If time wasn’t an issue, I would’ve had another round of Miso however, my OB was getting on a plane for Chicago that evening and I desperately wanted my OB to be there. He knows my history, calms my anxiety, and he’s great at making sure I don’t tear. The resident doctor was adamant that a balloon foley was our quickest option for further dilation. I was nervous about this method because I had never had it done before. With the balloon foley, I would also have a urine catheter and I knew that would only add to my discomfort. The doctor said he was fine with me getting the epidural before the insertion of both catheters so I wouldn’t have to feel either. I asked, “How long does an epidural last?” It can be effective for 18-24 hours. I needed to have the baby before 6pm if I wanted my OB to deliver so that gave me 12 hours. We had a plan.

A lady entered the room and introduced herself as the CRNA, Certified Registered Nurse Anesthetist. She sat down and asked, “Are you in pain?” To which I replied, “Not yet.” She asked, “Why are we doing this epidural?” This question irritated me. Am I not paying thousands of dollars for this medicine? I went on to explain the rationale. Did she not discuss this with the doctor? She began to talk to me about first time mothers who are afraid of pain – I stopped her and said, “This is my third rodeo. I have given birth without an epidural but this time I am choosing not to. If you’d like to discuss this pain management plan with my doctor…” She changed her tune. “No no no.” She agreed to give me the epidural but told me it was going to be painful because she didn’t have the pains of the contractions to hide it in. I sat up on the side of the bed and prayed to God I wouldn’t be paralyzed.

The CRNA advised me to sit crisscrossed, if it was comfortable, while the epidural was administered. I told her I was an elementary school music teacher and sitting crisscrossed was second nature. Chris stood in front of me to my left and the nurse stood to my right. The numbing needle stung. Then came the pressure. It felt like the needle was tunneling it’s way into my body. We made small talk about her children’s piano lessons and the downtown construction. My right leg jolted out and I almost kicked the nurse. It was taking so long, why was it taking so long? Finally, it was over. A cold trickle ran down my back and within ten minutes, I was completely numb from the waist down.

The nurse inserted the urine catheter and the resident doctor inserted the balloon foley, both of which I couldn’t feel because of the epidural. At 12pm, the nurse tugged on the foley but it did not come out. An hour later, she pulled again, and the ballon popped right out; it was the size of a clementine and it dilated me to 5cms. At 2pm, the doctor broke my water with what looked like a crochet needle. When I couldn’t feel my water break, I began to feel anxious. I wanted the epidural to be less numbing. I felt so helpless; Chris and the nurse had to move my body on the peanut ball because I couldn’t lift my legs. I felt so heavy. The CRNA came in and instructed me that the medicine was working exactly how it should and even though I couldn’t feel my lower half, it was responsive.

My Maw rubbed my legs and Chris scratched my head. It was enough to calm me through the last centimeters of dilation. I told my nurse that I was feeling a lot of pressure in my rear so she checked my cervix and informed me that I was 10cms dilated. I felt glad. I felt ready. Before she called in the doctor, she asked me to do a practice push and as I pushed through my next contraction she said, “Okay, okay. Stop. Stop pushing.” The nurse got on her phone, “Room 105 is ready to push.”

The nurses were like a NASCAR pit crew; raising the bed, turning on the bright lights, gowning the doctor, all in preparation for the birth. I made small talk with my OB about the baby coming before his flight for Chicago. He said, “With your next contraction I want you to push.” I crunched my upper body towards my knees, bared down, and I heard him say, “slow, slow” but I couldn’t stop what was happening. My body was pushing the baby out. In one push, I felt the baby’s body leave mine. The doctor placed the baby on my chest and I heard my Maw ask, “What is it?” The nurse answered, “It’s a boy.” He was crying and soaking wet. “Happy Birthday, baby boy.”

Chris cut the umbilical cord for our third child. I was relieved to hear that I did not tear and my placenta came out in one piece. The nurse told me, “That was the most efficient labor I have ever seen.” My legs were starting to tingle as the epidural started to wear off; I welcomed that feeling over the anxiety I experienced with the numbness. I changed my gown and watched as the nurse examined the baby. The baby’s oxygen rate was low at first but after a minute of an oxygen mask nearby, it went to normal range. Chris was standing over him, talking to him, taking pictures, and telling me how beautiful he was. The nurse stamped the baby’s feet into the baby book. I noticed quickly that he had a gap between his first two toes like his father. The baby weighed 6lbs 9oz. He was brought back to me for skin-to-skin.

This sweet, alert, baby boy latched quickly. He held on tightly to his daddy’s finger. He passed his newborn checks and scored a 9 on the Apgar scale. He tested negative for Covid; thank you, Jesus. He cried while he was given his first bath but once we was all clean, he calmed and we were able to take pictures of him on the hospital bed in the same position as Millie and Wells when they were born. Everything was going perfectly until he lost 12% of his body weight.

After many visits with the lactation consultant, I agreed to supplement his feeding with donor breast milk while my supply was still coming in. I would feed him from the breast and then pump. While I pumped, he was fed the bottle of donor milk. After 24 hours of feeding this way, he gained a little weight back.

I desperately wanted to go home. I missed Millie and Wells like crazy. I also knew my milk supply would increase in the peace of my own space. The doctors were okay with us taking him home as long as we took formula with us as a means of supplementation. We agreed, signed the appropriate papers and headed home to introduce Millie and Wells to their new baby brother, Crosby James.

Baby

My Baby, My Genes

Featuredby motheringmillieLeave a Comment

I’ve found that given time, life does not disappoint in writing material.

I hate this post. I hate writing this post.

Wells was born with an interesting hairline on the back of his head. At twelve months, we took him to get his first haircut and the hairdresser said, “He won’t grow hair there.”

At 18 months old, Wells lost his eyebrows. How does one lose their eyebrows? We chalked it up to KP (Keratosis Pilaris) a skin condition that Wells has and I also have, which can block hair follicles.

Wells wasn’t saying words like the pediatrician’s developmental survey suggested. We brought this up to the doctor and she said, “Let’s give it six months and see what happens.”

Wells’ speech did not improve. He was frustrated when trying to communicate and I contacted a state funded program and got him into speech therapy. Problem solved, right?

We saw the pediatrician six more times within a two month period because of Wells’ eyes. He lost all of his eyelashes. He had a “gunk” that no drops or ointment was alleviating. We were worried about his vision.

The pediatrician told me that she was suspicious that Wells’ medical issues could be linked to a genetic disorder or an auto-immune disease. What? Chris and I didn’t have any genetic markers. We don’t have any auto-immune diseases in our family. I was scared and defensive. She explained that he had many issues; his hair, his skin, his eyes, his developmental delay. Every issue could be a stand-alone problem or it could be tied to something more. She promised she would look into it but in the meantime, she recommended an ophthalmologist to take a look at his eyes.

The ophthalmologist was quick to tell us that Wells’ tear ducts must be blocked in his nasal passageway. His tears were backing up and creating excess mucus in his eyes. She could do a surgical procedure to put in temporary tubes to help his tears drain correctly. We asked her if this issue was linked to any other disorder that she knew of and she said, “Not at all. It’ll be fixed in six months time.” We mentioned Wells’ severe eye sensitivity which she thought was being caused by his many eye treatments. She referred us to an ENT before we scheduled the procedure because of his constant nasal drip.

The ENT saw inflamed nasal passageways. He was confident that Wells’ adenoids needed to be removed. As a last ditch effort to stop the drainage, the ENT prescribed Wells a ten day, antibiotic steroid however, when that didn’t work, we scheduled the adenoidectomy. The ENT also referred Wells to an audiologist after I informed him of Wells’ speech delay. Wells passed the hearing test.

Wells did not want to wear the hospital gown for surgery. The best advice I was given was from my best friend, Lindsey who told me to ask for anxiety medicine for Wells before he went into surgery. Once that was in his system, he was loopy and fine with going back to the surgical room. (I was a crying mess.)

The ENT was able to perform the adenoidectomy while Wells was under the anesthesia from his eye tube surgery. The doctor relayed to us that Wells’ adenoids were enlarged and had pockets of puss; we were glad they were removed. The eye doctor informed us that the eye tubes were inserted perfectly and she was able to fully examine his eyes. She explained to us that Wells had blocked oil glands on his eye lids and because of this, his eyes were not making the correct balance of moisture (water, oil, and mucus). She prescribed a steroidal ointment to try to get the inflammation down on his eyelids so that the oil glands could open.

It was difficult for Wells when he came off the anesthesia. He ripped his IV out and blood got everywhere. He cried for a long time. Once he started drinking, the nurses said we could take him home. I got him a whale balloon from the gift shop that came off it’s string in the parking garage. Chris got on top of the Jeep to rescue it. Wells was happy to eat as much non-dairy ice-cream as he wanted. He had a lot of dried blood on his face the next morning and his breath smelled terrible for a week because of the scabbing.

Six weeks later we went back to the ophthalmologist for a follow up appointment. The ophthalmologist was not thrilled with the results and either were we. Wells’ eyes were still over producing mucus and tears. His eyes were still incredibly sensitive to light. We made an appointment to remove the eye tubes and she referred us to a cornea specialist for further examination.

Our ENT visit was much of the same – disappointing. He still saw significant inflammation in Wells’ nasal passages. He recommended that we see an allergist to rule out environmental allergies for the cause of his inflammation and continued nasal drip.

Our next appointment was with the dermatologist, an appointment that was scheduled six months prior. (Hindsight 20/20 I wish this would’ve been the first appointment we went to.) We spoke to the doctor about Wells’ hair loss. We were very concerned with the condition of his skin. We told her about his recent ENT and eye appointments, as well as his speech delay. The dermatologist was hesitant to say anything definitively but she believed it to be Alopecia Areata, an autoimmune disease that targets inflammation of the hair follicles. She went to get another dermatologist for a second opinion and I cried thinking about the struggles Wells would have to endure.

The next dermatologist was not sold on an Alopecia Areata diagnosis because it would be unusual for the hair loss to start with the eyebrows and eyelashes. She asked us more questions about Wells and his different medical issues when she noticed Wells squinting while looking at my phone screen. She asked, “One final question, does Wells have light sensitivity?” Wells has had severe light sensitivity his entire life. When he is in the sun he must wear a hat and sunglasses or his eyes will roll to the back of his head. His eyes water uncontrollably in bright light. The night before our appointment, Wells complained to us that the TV was too bright. When we told her this information she said, “I have only seen this once, a long time ago during residency, but I think Wells might have a genetic disorder called IFAP.”

The dermatologist was positive that Wells’ issues were being caused by an autoimmune disease or a genetic disorder but she couldn’t be sure which without a blood test. Genetic testing is incredibly expensive so she put in an order through our insurance which took a couple of weeks to get approved. In the meantime, she wanted us to use topical cream for Alopecia just in case that would’ve worked, we would know that the inflammation was caused by the autoimmune disease and we wouldn’t have needed to go through the genetic testing. Not only were these topical meds expensive, I didn’t want to put Wells on any steroids that weren’t absolutely going to solve his problem. Once the order for the blood draw cleared through the insurance, the dermatologist put in an order for the lab to draw blood and check his DNA for two specific compromised genes associated with IFAP syndrome.

Wells’ blood was sent out to a lab in California. The test concluded that his LRP1 gene and MBTPS2 gene were compromised. We were contacted by the dermatologist almost immediately after receiving these results and she confirmed that Wells has the genetic condition, IFAP. IFAP stands for Ichthyosis Follicularis, Alopecia, and Photophobia. IF – his skin, A – his hair loss, and P – his eye sensitivity. This syndrome is a rare X-linked genetic disorder reported in only 40 patients, ever. Don’t Google pictures. My poor baby.

Known to occur in people with IFAP syndrome is corneal abnormalities including a defective tear film and recurrent atopic keratoconjunctival inflammations (exactly what was happening with Wells’ eyes). Did we need to do the tear duct surgery? No. That was never going to fix Wells’ eye issues however, at the time, we were unaware of this genetic disorder. We have since informed the ophthalmologist, who had never heard of IFAP syndrome, of Wells’ diagnosis and she is now researching other cases to better help Wells.

The steroidal cream that Wells was prescribed after his ocular surgery was too strong to be used long term; it could cause too much pressure in the eyes which could lead to glaucoma. We now have to administer an eye drop four times a day and it is not fun, Wells fights us every time. We found out that the drops burn and blur his vision (I contacted the cornea specialist about how it was a terrible experience every time we’d administer his eye drops and she informed us that they are not pleasant but entirely necessary.) It’s been incredibly difficult. He is scheduled to get the eye tubes removed next month as well as a more thorough eye exam by the cornea specialist, all while under anesthesia.

It was time to see the allergist. The ENT wanted to rule out food and environmental allergies for the cause of his nasal drip and inflammation. We explained to the allergist that Wells had been recently diagnosed with IFAP syndrome and that eye and nasal lacrimation are common symptoms of this rare disorder. The doctor called for a full allergy panel, which was administered into Wells’ back. He sat on my lap, facing me, while the nurse pressed the spokes into his skin. He cried and it upset Millie, who came to this appointment. The nurse came back with popsicles for both of them and they were instantly calmed. After ten minutes, the test was complete and Wells showed no signs of allergies. The allergist concluded that any drainage Wells was experiencing was not food or environment related. We were able to rule out allergies and add these drippy symptoms to the list of IFAP complications in Wells’ case.

To better understand IFAP syndrome and what it means for Wells and our family, we saw a geneticist and a genetic counselor. The geneticist was extremely transparent about how fortunate we were to have a doctor (his dermatologist) recognize this syndrome and to “cherry-pick” which chromosomes to test in Wells’ DNA. He told us that there are only 9 recorded cases to have the same mutation as Wells. This syndrome goes undiagnosed because people with these issues do not connect their problems to one diagnosis, and even if they do, they do not know where to begin (the expense of funding a wild-goose-chase of genetic lab work is astronomical). The geneticist believed IFAP to be congenital, meaning the severity of which Wells was born with, will be what he has; for example, he won’t develop mental retardation (a symptom some experience with IFAP). We will see the geneticist yearly to update him on Wells’ developments to hopefully help others learn about this syndrome. He also gave us his card if our new baby is a boy. This way, he can order genetic labs right away.

It was the genetic counselor who explained to us how Wells acquired IFAP syndrome. Males have an X and a Y chromosome, I gave Wells one of my X chromosomes and Chris gave Wells his Y (I couldn’t give Wells a Y chromosome because I don’t have one, I have two X chromosomes because I’m a female). One of my X chromosomes is normal and the other X chromosome is compromised. Because I have one good X, my symptoms of IFAP are lessened therefore, I’m a carrier of the syndrome. Unfortunately, the X that I passed onto Wells was my compromised X chromosome. He doesn’t have another X to combat the compromised X, so his symptoms of IFAP are full force. My father has all of Wells’ same symptoms. His mother, my paternal grandmother, is a carrier. Her father had these same symptoms. The genetic counselor said this is a males syndrome; they give it to their daughters who become carriers, and those daughters give the syndrome to their sons.

Millie could be a carrier for IFAP syndrome. I could have given her my compromised X but so far, she doesn’t have any IFAP symptoms. She can chose to be genetically tested before she decides to reproduce. If she is a carrier and has a boy, he would have a 50% chance of having IFAP syndrome.

When baby number three is born (we do not know gender) and if the baby is a boy, blood will be drawn while we are in the hospital to be sent to the lab to test for IFAP. At this point, I am hoping that this new baby is a girl OR a boy with my non-compromised X chromosome.

Severe cases of IFAP have noted kidney abnormalities. To make sure Wells’ kidneys developed correctly we took him to get an ultrasound. He was such a brave boy when he was laying on the table. I put my head next to his and we sang Mickey songs together. The tech ran the ultrasound on his belly and his back. She complimented Wells on how well he did and me on my singing. We received the results within the next hour. Wells’ kidneys were sonographically normal and in the normal range for renal dimension. This was a great relief.

In some cases of IFAP, mental retardation is present. With Wells’ CAS (childhood apraxia of speech) diagnosis, we were referred to a neurologist to make sure Wells’ brain was appropriately developed. When we arrived, the nurse gave Wells a sheet of emoji stickers that he stuck to the patient table in a circle and pretended to play duck-duck-goose with them – it was adorable. The neurologist was unfamiliar with IFAP and wanted to test Wells to get a baseline of his development. She asked him questions like, “touch the door, after touching the floor”. She had him stand on one leg. She asked him to point to certain colors, what his best friend’s name was (he said Mia), and to sing his favorite song (the PJ Mask theme song). She was aware of his apraxia and noted that she observed this in his speech however, everything else she tested him on was either developmentally appropriate or advanced for his age. We were thrilled.

The neurologist explained to us that 28-30% of children with IFAP develop seizures. She told us what to look out for if Wells starts to seize and that sometimes seizures don’t look like they do in the movies; he could stare off and not come out of it, one limb could rhythmically move, etc. We have a plan moving forward if he develops this part of the syndrome and until then, Wells does not need to see neurology on a regular basis.

Most recently, we went back to the ENT for the final follow up for Wells’ adenoidectomy. Unfortunately, Wells continues to have a nasal drip. After being tested by the allergist at the ENT’s request, we found that Wells has no allergies alas, his nasal drip is not caused by allergies. The doctor checked to make sure Wells hadn’t put anything up his nose (he did not). He checked his ears and throat (both of which looked great). It was determined that Wells’ drainage is IFAP related but to what extent, the ENT wasn’t sure. While he discusses the possibilities of why this is happening with the geneticist, he put Wells on a steroidal nasal spray to reduce his inflammation. The ENT believes this will be a chronic issue for Wells.

Through the Ohio Department of Health we are in the process of applying for CMH which stands for Children with Medical Handicaps. This health care program will help to offset the costs of Wells’ medical needs.

This diagnosis is beyond scary. All I want to do is help my baby and take this away for him. Unbeknownst to me, I was the one to give this to him. There is a perpetual feeling of guilt that I have to suppress as I need to focus on what Wells is going through and his needs. I will forever be his advocate as we navigate this syndrome, together.

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