“I was given such a great gift. It’s a miracle that never stops amazing me and reminding me to give thanks, every day.”
– Jake owen
With my {miracle baby} turning > s i x < less than a week ago, I can’t help but reflect on how he came to be. Though, if I’m being honest, both of my children are miracle babies. And no, I don’t mean in the whole ‘all babies are God’s miracles” way. I mean, it’s legitimately impressive that they’re here without [complication]!
See, we didn’t know it at the time, but when Igor went for his vasectomy we discovered he only had -one- of his vas deferens. A missing vas is usually associated with renal agenesis (the absence of one or both kidneys) / abnormalities and / or genetic mutations. The urologist said that he had never heard of it otherwise. So, Igor went off to get an ultrasound only to discover that he, too, is a zebra himself! <3
For those not part of the {chronic illness communities}, in medicine, the term “zebra” is used in reference to a rare disease or condition. Doctors are taught to assume that the simplest explanation is usually correct, to expect common conditions. The phrase taught to medical students throughout their training is, “When you hear the sound of hooves, think horses, not zebras.” However, many medical professionals seem to forget that “zebras” >DO< exist, so getting a diagnosis and treatment can be more difficult for sufferers of rare conditions, such as myself!! There is {no} explanation for why Igor only had one of his vas deferens, and seeing as the urologist was stumped himself, I declare my hubby a “zebra”, even if only an honorary one.
That said, the fact we didn’t end up with fertility treatments is the first miracle itself! I even got pregnant with Leighton on our first try. Our good friend Matt [Friendships pt. 2] likes to joke that Igor has -supersperm- as a result of Chernobyl. <- Which, may be in poor taste given that Chernobyl is considered the worst nuclear disaster in history… buuuut is it not {also} possible he may be right? ::joking;kindof:: Having Ehlers-Danlos Syndrome [06. HS/Diagnosis], I was at risk for a variety of complications, from not being able to maintain pregnancy or delivering prematurely, to hemorrhaging, especially due to my platelet disorder: Delta Granule Storage Pool Deficiency. According to St. Jude Children’s Research Hospital, DGSPD “is caused by a lack of dense granules and the chemicals normally stored inside them. Without these chemicals, platelets are not activated properly and the injured blood vessel does not constrict to help stop bleeding.” <- basically meaning, I’m a bleeder. I have to be honest and admit that while I knew about EDS {shout out to May being EDS awareness month!}, I didn’t truly understand it when it came to pregnancy, at the time I was pregnant with Leighton. We were concerned about premature labor but my obgyn was much more concerned about my bleeding and the potential need for a hysterectomy due to said bleeding.
As I mentioned in [Twice Exceptional], I had Leighton at 35 weeks+5 days. At 33w3d I was sent for a stress test and discovered I was in preterm labor. I guess I’m so used to pain that I didn’t even realize these were [decent] contractions and not just Braxton Hicks. After a few hours they decided to send me home but to keep an eye on my blood pressure and if contractions started up again to go back. In less than 24 hours I was back in and admitted for the night. We already knew that I was going to be having a c-section under general anesthesia because of my doctors’ fears over bleeding. They didn’t want to give me a spinal and cause more harm, only to have to put me under should there be an issue. The morning of the day he was born, my obgyn was concerned that I was going to end up in an emergency situation. She didn’t want to send me home only for me to come back to a busy ward without platelets on hand. She believed based on how I was progressing that I wouldn’t make it a week, and felt it was the safest, smartest option to deliver him that day, while there were two doctors to oversee it, she would be there (as it was her hospital day), and being morning they had fresh platelets on hand and could reserve them for me. That quickly became the scariest day of my life, up to that point! Like I said, we didn’t know enough back then but you better believe I did my research the second time around, because having a child under general anesthesia, not knowing if I was going to wake up with or without a uterus – or at all, miss the first cry, my husband not being allowed in the room, and so forth, >definitely< lead to birth trauma!! I felt so disconnected from Leighton, and honestly I still do. I don’t know if it’s from the trauma or his neurodivergence. I just know that I love him fiercely, but our bond is nothing like that of which Kellan and I have. Over the years there have been times it felt fake and forced and it breaks my heart to even admit it, but here I am… Telling my truth. The next miracle: being born at 35+5, at 6lbs 11oz – baby boy [never] spent -any- time in the NICU (which is good because he would have been transferred downtown to Detroit Children’s Hospital) and went home with me when I was released!!
Having a 2E child is challenging beyond words! With everything that we went through those first 3 years, we honestly didn’t know if we’d have a second child. We had always talked about having 2 and if they were both boys, we’d adopt a girl. Only in a “perfect” world, right? I shake my head at our naive young selves. It took until hearing the words, “you’re not ovulating” and “you may not be able to get pregnant again”, to realize how badly we actually wanted a second. Knowing that choice was essentially [possibly] taken from me, cut me. Deep.
Huh, just right now I realized, I think that I need to backtrack on my comment about not needing fertility treatment. My [naive] understanding of treatments was always so much more in-depth than just taking medication for ovulation induction (OI). After thinking about the fact that I >did< use oral medication to try and “re-boot” things, I decided to see what actually was considered ‘fertility treatment’. Lo and behold, OI is infact one of the first methods! Wow. You learn something new every day, and I’ll [never] stop learning anything I can. Knowledge is power, my friends! <- Which is why my 9 year old son knows about what is going on with the Supreme Court, at this moment in time. When he found out, his first reaction was to ask, “but what about if the mother’s life is in danger?” Oh my heart, sweet boy. I’m not going to go on a pro-whatever- tangent, I just think it’s incredible while also very sad, that this {child} understands it’s >not< a black and white situation – and he is very much a black and white type of person!
I did two “cycles” and viola, I started ovulating again. Seven months later, I was never happier to see two pink lines! From about 6-8 weeks I had to have regular blood work due to what is medically coded as a “threatened abortion.” <- Because that’s always fun to see on paper when you desperately want that child. And just so we’re clear and there is no misunderstanding, a threatened abortion means :possible miscarriage:. Also during those weeks, I had to use vaginal suppositories daily. I share this because 1) this is my truth and 2) [awareness] as I had -never- heard of anything like it before. I had to get them from a special compound pharmacy, as well. The whole point of my blog is to help others, right? There should be no shame in discussing women’s reproductive health; so ::sorrynotsorry:: if you found that uncomfortable.
It was very evident from the start that I needed to see a [high-risk] ob/gyn, again, only this time my doctor recommended that I head to UofM, completely out of her “network”. Hell I wasn’t going to argue, you want the best of the best, right? Man am I grateful I did!! See, it was at UofM where I discovered that even with my bleeding disorder, hematology cleared me for a VBAC (vaginal birth after cesarean), shall my other doctors agree! Missing Leighton’s birth caused a lot of trauma and I wanted more than anything to have a natural birth! More. Than. Anything! Having an epidural was more of a risk to me due to bleeding, plus it puts you at greater risk for needing an emergency c-section, which would again result in me likely being put under. Nope! I didn’t want to risk any of it so I started practicing hypnobirthing. I had my essential oils picked out, I had my music prepared and had been going through all the prompts with my mother as she was going to be my coach though it. She is my calm, which, duh? Of course she is, she’s my mom!
My team of high-risk OB’s couldn’t give me a definitive answer of course, but they knew it’s what I wanted and it was listed as my birth plan from day one! At 21 weeks I started progesterone shots to help prevent preterm labor, but had to stop after 2 weeks. At this point I hadn’t been diagnosed with PMDD, so I didn’t know that those added doses of progesterone would cause me to spiral downward, fast! That was the first time (that I knew of for certain) where hormonal depression kicked my ass! I mean, I figured I was a mess when taking the pills for OI because it was meant to shake things up, I just didn’t realize they were a contributing factor. Nor did I realize that what I was feeling with the suppositories wasn’t just [normal] “pregnancy hormones” with the added stress of a -possible- miscarriage. Nope, as it turns out, my body doesn’t handle progesterone well. I didn’t discover until after I was diagnosed with PMDD, that natural progesterone levels are at their highest right after ovulation, which is exactly when I start struggling; <- explains a whole lot as to why any time I was on birth control, I also ended up on anti-depressants! So, not being able to take the shots meant more visits and added ultrasounds as once again, I was at a higher risk of losing the pregnancy, not just going into preterm labor. Yay me…
Around 28 weeks baby boy was thriving! He was in the 67th percentile, so it was really up in the air as to if I’d be able to have a VBAC. If he continued to stay far ahead the closer to term that I got, my chances for the natural delivery that I wanted would drop lower and lower. By 34 weeks he had dropped to the 29th percentile, which, in retrospect should have been questioned more, but they viewed him as healthy and my chances looked bright. I only knew he dropped as I started going into preterm labor and had 2 ultrasounds that week alone to monitor him. At 36 weeks with a 5+ hour trip to labor and delivery, they were convinced he was coming that night. After walking the hospital for 2 hours, things weren’t progressing enough so they sent me home, even though my contractions had been consistent for 2 weeks and powerful enough to be considered ‘active labor’ that night… until they stopped. All of a sudden, out of nowhere. <- again, in retrospect one would think there’d be a little more concern but my fluids were intact and all seemed [fine]. Cool? As I mentioned in [15. Twenty-Two] Kellan was almost born on his father -and- my father’s birthday. He was also close to being born on my mother-in-law’s. <- Thankfully he wasn’t, no offense, but if he’s not sharing the day with my husband and my father, Kb deserves his own day just for him! Which he got, when my water broke the very next morning.
When we first got to the hospital everything was progressing as it should. I got hooked up to monitors and was super stoked that the outcome of having a VBAC looked promising! Then… literally out of nowhere like the flip of a switch, nurses came barreling in. I was flipped onto all fours, given oxygen, and my doctor did a quick exam (I think?) as they were wheeling me to the operating room, before Igor or myself could even ask what was happening. Within a matter of seconds I was on the OR table and hooked up to monitors again. I just remember not getting to kiss Igor goodbye as we both had tears in our eyes, without a clue as to why the situation was so emergent. During transport my doctor mentioned that they had [-lost-] fetal heart tones for the last 10 minutes!! <- Are you fucking kidding me?! TEN MINUTES?! Isn’t the >whole< point of being hooked up to monitors in the first place, to assure things like that doesn’t happen? Who the hell wasn’t doing their job monitoring me from the nurses’ stand? 10 minutes? GTFO!
Once lying flat on the OR table and hooked up again, they allowed Igor to enter the room. Adam, one of the senior residents (I don’t know what his official year/title was at the time) sat with me and finally explained what was going on. They didn’t know for sure what happened, but at that time I was stable and baby boy was stable. They weren’t sure if he had moved and went into distress or if I unknowingly moved the monitor not realizing. Whatever the case, it shouldn’t have taken 10 minutes to notice!!! Arg. Anyway, after about 45 minutes of monitoring us he felt comfortable enough to let -me- make the decision on whether or not I wanted to have an elective c-section or return to my room and continue with my original birth plan.
See, what makes or breaks a good doctor is truly their bedside manor. You can be brilliant but if you’re a jerk, your ego will get in the way eventually and it wouldn’t be surprising if you face a lawsuit or two+. Adam listened to me. I explained my previous birth trauma and how important certain things were to me. Like delayed cord cutting, Igor actually being able to cut the cord, skin to skin immediately after birth and most importantly – to be awake and hear his first cry!! He knew how badly I wanted to try laboring naturally and allowed me the [choice] without any pressure (How it should be!). He asked if I wanted to speak with an anesthesiologist first to hear my options shall the need for an emergency cesarean arise. He stood next to me holding my hand while I cried unsure of what to do. Ultimately being awake was [the] most -important- thing so we all agreed that while I wasn’t getting an epidural, pre-placing a catheter in the event I needed to be rushed down again, would give me the best odds at not being put under, as they could pump what was needed during transport.
They had Igor step out as they placed and tested the catheter for proper placement. They told him it would only be a few minutes so he could go back to my room and wait for me to come back. Only… things didn’t go as planned… AT ALL! Again, within a matter of seconds I was back on my back as they prepared to get Kb out of me as quickly as possible. When they tested the placement his heart rate went from 187 to 58 almost instantly. Adam had previously addressed how important it was for me to be awake with all of those involved, so the nurse anesthetist told me that they’re doing everything they can, but to understand that in order to stay awake they needed to overdose me to work as quickly as possible. Pretty sure all I did was blink and I went from having fluid dripping into my spine to, “Jena can you feel that?” “Prepare for the baby to be out in 90 seconds.” I remember yelling, “Wait, what?! Where’s my husband? My husband has to be here; he can’t miss this! Where is my husband?” as tears streamed down my face. Everything happened so fast that Igor entered the operating room {JUST} as they were pulling Kellan out of me. Igor thought fast on his feet and grabbed his camera when whoever went to get him and started taking pictures as the OR doors opened. The first thing he saw was baby boy literally halfway out of me! ::phew:: He just kept snapping, I don’t even know if he was looking through the viewfinder or just holding it while he pressed the button but he at least got to see it… kind of.
Unfortunately delayed cord cutting wasn’t an option, however Adam made sure to leave it long enough to get [some] benefit as well as allowing Igor to “cut the cord”. My sweet baby came out blue; I of course didn’t know this at the time but it sure seemed like it took forever to hear his first little high pitched cry! He was whisked away to be checked over and then brought over to me and placed on my chest right there in the OR for immediate skin to skin! I am not sure how normal that is, as I’ve only ever seen photos of proud dads holding a wrapped baby next to Mama’s head. The problem is, I was legitimately numb to my neck and he kept rooting upwards towards my shoulders. They weren’t kidding when they said they needed to overdose me. The nurse had to keep adjusting him until he finally found what he wanted and started nursing.::awwmybebe:: And nursing did he ever! Pretty sure I made cream as he was already above birth weight at his first doctor’s appointment. They typically say by 2 weeks babies should have reached their birth weight as they lose weight while in the hospital. He weighed 5lbs 15oz at birth, left the hospital at 5lbs 7oz and was 6lbs 2oz by 5 days old!! ::whaaat?!::
Remember when I said he had dropped from the 67th percentile at 28 weeks to the 29th at 34 weeks? At 38w5d he was born barely making the 2nd percentile. Later that night after walking the halls, I returned to my room to find the MFM attending doctor waiting for me. He explained that had I attempted natural laboring, both myself and Kellan may not have made it. If you recall in [06. HS/Diagnosis] I explained how EDS affects the organs, as it’s a connective tissue defect. As it turns out, all of the complications and near miscarriages were a result of a faulty placenta. I was never actually told what exactly was faulty about it but that he was malnourished towards the end of my pregnancy. He was healthy, but it makes sense why he ate around the clock for a while. My uterus was so thin along my previous cesarean scar that it basically ruptured on its own as surgery was being performed. <- Whoa! That explains why the OR looked like a crime scene in the pictures… ::ShiftsEyesSidetoSide:: I was in a controlled environment and they were prepared, whereas if I tried laboring, there is no question that I would have hemorrhaged and it would have been that much more serious. Obviously doctors cannot [tell] you what you can and cannot do, but he made it -very- clear that getting pregnant again would put my life even more at risk. He told me that if I was his daughter he’d tell me, “it’s not worth it and to not get pregnant again!” Roger that!
Adam, or rather now, Dr. Baruch, clinical assistant professor, will >always< hold a special place in my heart!! I know I didn’t go into detail over just how much he was there for me but I will never forget him! He even came to check on me after his shift had ended and he heard what the attending had to say. I am not the person to walk up to someone off the street and say something, however, about 18 months later I apparently became that person. Ha. Igor and I were in downtown Ann Arbor and saw Adam in a store. I was so SO nervous and hesitant but I -knew- that I [had] to say something; I not only literally survived because of him, but I also survived a very traumatic experience without the mental trauma effects. I have tears in my eyes just thinking about his sincerity and how lucky future mamas will be, to be under his care! Also, you know you’re getting older when the doctor who performs surgery is younger than you. Oy.