Juxtaposition (cont.)

“I just wanted to let you know that my little brother, Austin, passed away on Friday night. Please send prayers for his sweet soul. ❤️”

This was the other text I woke up to this day. I received this text from Chelsie. Those of you whom have followed my blog for a while might remember her, the one whose parents both died in a plane crash when she five. 

Chelsie’s maternal uncle became her legal guardian following her parents’ untimely demise. He promptly married a woman that he met at the funeral. They subsequently had a son together, Austin. Austin was technically Chelsie’s cousin but they were raised as siblings. 

Austin led a tortured existence of mental illness and drug abuse. In his early 20’s, he was diagnosed with schizophrenia. On a daily basis, he was haunted by voices and delusions until he committed suicide at the age of 26. 

As if Chelsie’s life hadn’t been tragic enough already, her maternal grandmother passed away two weeks later. The octogenarian possessed the only remnants of Chelsie’s mother’s face, the face Chelsie last saw in 1985 before she left for that fateful business trip.

Chelsie and I sat at the In-n-Out right next to LAX where all the tourists go to watch the planes land while they scarf down the much fabled burgers. My kidlet sat on my lap while he tried to simultaneously shove all the fries in his mouth and throw them all on the floor. It was a brief meet-up between her rental car drop-off and boarding time before she headed back east. She had been in town visiting a cousin. We chatted about Tyler and Chelsie’s perpetual inability to secure a long term romantic relationship. 

“I had this nightmare quite few months back. I was on a commercial jet and it was about to crash. Much like that opening scene in Garden State. The plane was pitched down and shaking, the oxygen masks had deployed and people were screaming. In the dream I distinctly remember not being scared but extremely sad. Sad because I was going to miss my son’s whole life. I couldn’t fathom that I only got a few short months to love him and watch him grow. And when I woke-up, after the initial relief of being next to my snoozing baby, I thought of you.”

“I thought of you and how much she loved you and how you were undoubtably the last thought in her head. (My voice began to waiver as I got choked up) I want you to know your mom loved you more than life itself despite there being scant evidence from your brief five years together. She loved you in a way that I never understood until I became a mother myself.” 

There we were, tearing up on the In-n-Out patio midday on a Wednesday. 

We hugged and said farewell for another few years. 

Hello from the other side

I can hardly believe that I have officially been a mom for over a year already. My daily life is heavily steeped, if not outright saturated in mom-ness. Despite all the warnings from doctors and therapists that babies like him usually have developmental delays (from either the prematurity and/or the steroids used for his lungs), I have a 13 month old that cruises (stands and walks assisted) and climbs all over the house. He tries to give me a heart attack with his attempts to defy gravity multiple times a day. 

After overcoming a seriously exaggerated gag reflex as a function of his extended intubation, he loves solid foods (and throws it on the floor) at least three meals a day while still nursing and taking pumped bottles (kind of). Lately, he has decided that he is not very fond of bottles and is often refusing them. It takes a lot of chiding and distracting to get him to chug his bottles. He is physically only 10 months, so he still needs most of his calories/nutrition from milk (breastmilk in our case or formula for others, other milks like cow etc. are to be offered after one year) until the first week of March. He does nurse but he still isn’t the best breastfeeder. I can tell when he’s getting a decent meal from the sound of his swallow and the deep pulling of his latch. He often has a shallow latch for non-nutritive nursing (comfort). So I still have to pump, otherwise my body will willingly stop making milk. 

He is hitting his milestones and taking names. Although, he has been followed by physical and occupational therapists since his discharge from the NICU, he has never actually required any intervention. His blonde head is lovely, round and symmetrical. We ditched the helmet a few weeks before Christmas. He was given the all clear that his retinopathy of prematurity had completely resolved on it’s own, not necessitating any intervention, so his steely blue eyes are perfectly in tact. We returned the oxygen tanks mid October. I now have a real boy Geppetto. 

Here I am, almost three years (Valentine’s 2013) from when I started IVF. I’ve literally met hundreds of women online and met about 20 of those actually in person. Over the last three years, I built an expansive network of infertility support through blogs, Instagram and my in-person Resolve support group (Facebook is infertility free zone for me, too many IRL peeps there).  

And of all those amazing women, most are now mothers. There is a small group (three in particular are some of my faves) that have either not quite hit the big leagues of intervention yet, are taking breaks, or are still fighting the good fight. I want to tell YOU (those of you still in the trenches) do not give up! Everyday, you are getting closer and closer to being a mother. Two years ago, I was sitting at a desk doling out organs; one year ago, I was spending 18 hours a day in the NICU; today, my kiddo climbed on me and stood on my stomach while he tried to scale the wall of his baby corral and he calls me Mama with the sweetest, most angelic voice my ears have ever heard. 

You got to coordinate, co-ordinate

I found myself frantically climbing down a second story balcony when I lost my footing and fell through a fiberglass awning and with a loud thud… into the garbage can.

Why in the world were we making such a fuss? We weren’t even doing anything wrong, but Tommy’s parents didn’t allow guests over the house when they weren’t home, so when my boyfriend (my husband) and I heard them pulling into the garage, out the balcony we went. 

It was April 9, 1994. I know this because it was our one month “anniversary.” We had just had an anniversary lunch at Islands where he very unceremoniously gave me a silver ring with a green stone (my favorite color was green). After which we were bumming around the beach and decided to visit Tommy. 

They had been best friends since they were 12 and found each other on the beach trying to learn how to surf (without any instruction) on boards they had gotten for Christmas. 

Tommy was a fast talking New Jersey transplant that quickly abandoned the Jersey accent for a tan and cool beach persona. His father had moved the family out to the west coast so he could work in the film industry. 

And there I was climbing out of the trash can like an imbecile on a campy TV sit-com. A very humiliated 14 year old girl, I sat there as my boyfriend had to help Tommy’s dad repair the awning with the aid of a staple gun. 

Tommy made friends easily and enjoyed extreme sports. He and my husband surfed, body boarded, skate boarded and watched comedies inappropriate for their age. But Tommy also talked a lot of shit and did a lot of drugs. Which definitely contributed to the diverging of their paths. And there was the time when he called me fat when I was 16. He didn’t say it to my face, but he didn’t realize I was in ear-shot. Tommy was the type of guy that only wanted to date stick thin blondes. 

But I understood why he said it. He was jealous. He was jealous that his best friend had a girlfriend and devoted all of his time to her and his endeavor to get into her Bongo shorts. As high school continued, they grew further and further apart, but always maintaining a congenial connection. 

And as one tends to do nowadays, I found out that he died on Facebook. A mutual friend posted about Tommy’s death the day after Christmas. My husband is very staunchly anti-social networking, so I gently informed him. 

After talking to a guy I absolutely hated in high school that ran in a circle of Tommy’s friends that all ended up in rehab with a slew of DUIs under their belts, I got contact info for the funeral in Florida where he had been living with his parents for the last ten years. We had kept in touch with Tommy and my husband had attempted unsuccessfully to see him when he was in Florida for work. But Tommy was still a bit of a flake. 

Saturday, he will flying out to Florida to say good bye to his childhood friend. Tommy had never lowered his unreasonable standards of beauty for his dating pool. Thusly, he never found much in the way of love. During their last phone conversation about two years ago, my husband said, “you just gotta go out and find a girl that’s smart.” 

Juxtaposition

I woke-up to two drastically different text messages this morning (well actually three, but I’m not counting the one regarding extra B6 supplementation in prenatal vitamins for women with MTHFR). 

One person was born and one person died.

Not too long after Baby Boy was born, I was exchanging messages with a friend that went to college with my husband. More specifically she married one of my husband’s fraternity brothers. I didn’t even like her much when we were all still in college but she grew on me after we left and were coincidentally living in “the town that we dare not speak its name” together. Sadly, her mother is suffering from a rare disease where large portions of her brain are literally dying off. It’s rather tragic to hear of her rapid mental decline. 

She asked what she could do to help me. I had no idea. I didn’t know what I needed, I was so emotional and confused. She said, “well, I know you’re pumping a lot, how about I send you all of my pump stuff since I won’t be using them again?” This was brilliant, I had subsisted on a singular pump set for a couple of weeks and had been washing it after every use (8-10 times a day, my hands paid the price for this which I’ll go into another day). 

So, four days later a box full of bottles, valves, flanges, and breastshields arrived at my door. I no longer had to waste any precious sleep washing parts. I could just load up the dishwasher at the end of my day. I was so grateful. It was one of the few times someone actually did something I needed. In retrospect, I think what I needed most was to be taken care of. I had just quite suddenly become a mother but was in need of being mothered most. When everyone around you is used to you being in charge, they don’t really know what to do when you need help. Hence, being told what I needed was a successful strategy on that day.

Some months later, when we met that same couple for lunch at the Cheesecake Factory after Baby Boy had been discharged they shared that she had been cocurrently pregnant with me with a similar due date (early March 2015) but had miscarried at 10 weeks. She too had a subchorionic hemorrhage but like my ill fated pregnancy two years ago (holy shit, 2 years?!) hers never resolved. However, joyfully, at that same lunch they shared that they were expecting again. 

About a month ago, I packed up those same parts, sans what my husband had melted in the dishwasher, along with some various new gifts and sent them right back to their proper owner whom welcomed a healthy baby girl last night.

“Baby Girl was born 11/7 at 10:57pm. 6lbs 2.6 ozs, 18 inches”

***to be continued

Beating a dead horse

I never understand the proclamation “we beat infertility.” I mean, I know what people mean, but I don’t identify with that statement. Most days, I feel pretty beat by infertility. Our bank account, my body, and my mind have all taken quite a beating regardless of the adorable miniature manifestation of a huge dream living in our house. Although the emptiness of longing for a child has indeed disappeared, there are scars. 

I thawed my final bag of frozen breast milk tonight. It took the full three months he was in the NICU to completely (literally wall-to-wall) fill our freezer with milk and it took from March 18th until November 3rd to empty it. I’m so glad I was diligent those painful three months. I set my alarm and pumped like clockwork. My alarm would go off at 4am and I would wake-up drenched and shivering in post partum sweat. I dragged my soggy, melancholy ass out of bed and pumped in the frigid living room.

I am still breastfeeding/pumping but I have long since been able to meet his meager needs. I am maxed out on fenugreek, shatavari, Gatorade, and Domperidone and all they seem to do is maintain this ever dwindling supply. I tried lactation cookies, lactation balls, brewer’s yeast, oats, beer, you-name-it. I know how it happened. It was quite insidious. The week he came home was very stressful and my pump schedule got delayed several times. Unfortunately, it was at the tale end of the hormone driven phase of lactation. So, I suspect as I missed some pumps, my cyclical hormones kicked in and my old nemesis PCOS returned, forever holding my ability to lactate hostage.

So, as of tomorrow morning, I will have to supplement with formula. He hates formula. He usually refuses it altogether. My best bet is to try to offer it to him at night when he’s half asleep and save the breast milk for when he’s more alert. Not that I have much room to do that because I’ll need help during the day as well. 

I know I keep beating a dead horse about breastfeeding and several of you don’t get it. Those that couldn’t or didn’t want to breastfeed probably are sick of my tale of woe. I’ve fought tooth and nail to maintain my ability to lactate, because as long as I’m making milk, in my mind, our physical connection persists. 

I reflect on those agonizing first days after he was born when I was recovering from my c-section fearing that every nurse that walked into my hospital room would come bearing the worst possible news. I can still cry just thinking about it. I am crying thinking about it. That hurt is still so fresh in my heart and the only thing that assuaged the precocious emptiness of my womb was my ability to feed my baby without any help from the outside world. Sure, I had to pump; sure, he couldn’t and still sucks (pun intended) at latching; but I didn’t need anyone or anything to help me feed my baby.

When I was first admitted and they would do NSTs, I wouldn’t look at my phone or watch TV. I would close my eyes and listen to the music of his heartbeat. I knew our days connected were numbered. I close my eyes now, I can still hear it, I can still feel his kicks. I don’t wish for him to still be in there, but I do wish for the only opiate I had to dull the pain and guilt to still work. 

Your baby is normal

“Huh?”

“Your baby is normal!” Gesticulating to his orthotic helmet.

“Oh, thanks?”

You probably think I’m crazy or that I fabricate this stuff but, as of last week, he is wearing an orthotic helmet to round out a persistent flat spot (plagiocephaly) on the right back of his head that he got from being stuck in the same position in the NICU too long while intubated. 

We tried to aggressively reposition his head towards the left while he slept but it only very slightly improved. The flat spot was very mild, in fact, it just barely met the measurement threshold for his helmet to be covered by insurance. What concerned us really is that for every flat spot in the back, you get a corresponding prominence in the front. So his right brow was slightly higher and jutting out more than the left. 

This may all seem vain, but as a 36 year old adult with braces, my thinking tends toward correcting minor aesthetic abnormalities while it’s easy (or in this case possible. Once those cranial bones fuse, His head is stuck like that).

“My son had a helmet too. Your son is normal and it will be fine.” 

I gather she experienced a lot of negativity regarding her son’s helmet. I didn’t have it in me to say, no, he’s not really normal and he’s had way worse. But I appreciated her attempt to buoy what was probably a traumatic phase for her. I agree, people used to look at him with pity for wearing the oxygen, now they assume he has a mental disability because he wears a helmet. I try not to care. I try to imagine him on his first day of high school thanking us for not ignoring such a simple deformity. 

You cut up dead bodies?

“Eh, yeah?! How did you not know that?”

I have no recollection of how this recent conversation with my mother evolved. I think I was talking about my old work life. 

When people ask if I miss work, I answer, yes, I do. I miss solving problems. I miss using that part of my brain. I miss being a part of the big picture of saving lives. I miss getting bloody Mary’s with Work Bestie at 7am on a Wednesday after doling out organs all night long. I miss the autonomy that comes with making your own money. I miss feeling important. 

But I don’t miss driving to downtown LA. I don’t miss arguing over salary. I don’t miss the incompetence parade of my male coworkers who were probably making more money than I. And no, I don’t miss cutting up dead bodies. Although, every time a high profile death occurs in Los Angeles, I love to remark on such and such investigator or the facilities at LA County Coroner’s office. 

A girlfriend’s uncle died a couple weeks ago. The same girlfriend whose dad died during my first week at the organ and tissue bank. I casually know her cousin on Facebook. I sent her a direct message of condolence. She immediately messaged me back asking if she could call me. 

“Oh dear lord, a phone call?! Her dad just died, okay.”

She called wanting to chat about the organ and tissue donation process. At one time her dad had been eligible for organ donation while he was still on life support but was deemed unsuitable. She wished to discuss if that was a legitimate decline. 

We briefly discussed his medical/social history and by my analysis, I reasoned that due to his comorbidities, most of his major organs were crap (no I didn’t say that). He had a heart attack (heart is out), he had diabetes (kidneys and pancreas are out), he had a history of smoking (lungs are out). He also had a history of skin cancer which had resolved but had gone unmonitored post treatment (red flag for possible relapse. You can get cancer from transplanted organs and tissues). Taken together, this only left him suitable for cornea donation (the eyes are very isolated from the rest of body and metastasis to the eyes from cancers below the neck is practically impossible). 

I found myself eloquently turning old phrases and jargon. It was all too familiar. But she felt reassured from hearing my explanations. Some of her less educated family members had been planting seeds of doubt and conspiracy in her ear (the last thing you need when a parent just died). 

And so I missed work that day. But not as much as I missed my baby sleeping in the next room. 
***I don’t mean to imply moms who work don’t miss their babies. I am fortunate that I can choose to be home at this point.**

If I could do it all over

After 13 years of marriage/infertility, three fresh IVF cycles, five transfers (11 blastocysts, 2 frozen remaining), two miscarriages, one high risk pregnancy, a vanishing twin, and climactic severely premature birth, I am finally a mother. 

I’m going to go ahead and say that I have pretty much seen it all (okay, not donor gametes, surrogacy, or infant death), but I have been some places. 
For those of you starting your journey or wondering which direction to go now, this is what I would have done if I knew then, what I know now. 

1. Get even thinner than I was. 

Prior to commencing IVF, I was the thinnest I had ever been as an adult. It was a great place to start, so I thought. It took two failed fresh cycles and one miscarriage before the toll of hormone injections and emotional eating started to stick to me. When I finally got pregnant for real, I was 15 pounds heavier than when I started. I was still within a healthy range for BMI, but I wasn’t quite putting my best foot forward anymore.

2. Repeat Loss Panel (RPL) Panel.

I don’t know why this is not compulsory before everyone begins IVF, it could save a lot of grief. After two fresh transfers and one miscarriage from FET, my RE ran an RPL blood panel to assess if there was any explanation for my miscarriage(s) (the genetic testing post D&C was normal). But lo and behold, I tested positive for MTHFR (not going into the specifics). With no other obvious explanation, we assume this contributed to my miscarriage and could have been avoided by the use of methylated folate rather than the common folic acid used in prenatal vitamins.

3. Stim hard and long! 

I would have opted to aggressively stimulate my ovaries, because what’s a little OHSS compared to a big fat negative (I realize it’s serious, but I’m being serious). I usually made a nice crop of eggs, this is one area where having PCOS actually helps you. But after each step of the lab treatment chisels away embryos, you don’t have much left for…

4. PGD/CCS. 

Different clinics/labs have different terminology for this but I would’ve wanted a huge batch of embryos so I could do a freeze all cycle and have comprehensive chromosomal screening performed. This would have eliminated a whole lot of what ifs. If I had had just done this to begin with, I wouldn’t have had to do two fresh cycles to learn that I just can’t get pregnant during a fresh cycle. I most likely would have just gotten pregnant during my first FET and hopefully stayed that way with the knowledge from step two and five. But when your doctor says something is not necessary and you’re already spending tens of thousands of dollars, you take his word for it.

5. Baby Aspirin.

Per all physicians involved, I stopped taking baby aspirin at viability (24 weeks). I developed severe preeclampsia 2 weeks later. Baby aspirin is prescribed to women at risk of preeclampsia for the duration of their pregnancy, not just until viability. I shudder to think that I could have prolonged a healthy pregnancy if I had only stayed on aspirin (not that anyone thought I was at risk). Maybe I could have avoided it, maybe I was a runaway train no matter what I did. Prescription medication for blood pressure would have done nothing for me because my blood pressure was perfectly fine until it pretty much exploded.

This is what I offer for your consideration. If I would have followed this plan, we would’ve spent $17k instead of 40.  In reality, I wouldn’t do anything different because this specific course of events led me to the baby rolling in his sleep next to me and I could never imagine not having this specific baby in my life…except for the aspirin.

People say they would never wish infertility on their worse enemy, I don’t have a “worse enemy,” and I wouldn’t care if they were infertile. But if I did, I wouldn’t wish prematurity on my worst enemy’s child because that has been the singular worst thing that has ever happened. My years of infertility heartbreak are nothing in comparison to the lifetime of guilt for what he has and will continue to endure that I carry with me now. 

I should be sleeping

I should be sleeping. The sun is barely up and I just finished pumping. I should utilize this rare time to rest more wisely, but I don’t, instead I’m lying here staring at him while he sleeps next to me.

His baby-ness is fleeting. All of the clichés are true, it goes by so quickly. He’s been home for six months already, the fastest six months of my life. 

We made a pact to never wish any moments away because you never get them back. I haven’t had a decent night’s sleep since November 25th (the night before I was admitted to the hospital) and in the middle of the night, after he’s fallen back into deep slumber, I still cradle him in my arms and drink his scent like it was the first day we met.

I refuse to remove him from our bed. The idea of him being more than 6 inches away from me while I sleep installs panic in the pit of my stomach. 

I actually don’t ever desire being away from him. Any quick jaunts away are a matter of pragmatics. Why does the Western world say we need to individuate and become separate? We were once a singular, self-contained unit, who makes these rules that we shouldn’t exist that way now. 

I should be sleeping. 

With eyes closed, he rolls towards me frantically searching for my breast. 

At one time I was frantically searching for him.

Now that he’s here, I’m not going to sleep through it.

Minus One, Plus One

Shortly after I published my last post, our pediatrician called to say Baby Boy’s bloodwork was perfect and he can stop all medications. Yahoo! We had been weaning the dosages quite conservatively for some time. So much so, that when we visited one of his former neonatologists, she laughed at the dosage and said it was no longer even therapeutic. 

I can’t tell you how nice it has been not to worry about measuring out these tiny doses with syringes for his first and last bottles of the day. When he first came home, at least four bottles a day required varying combinations of four different meds.

After a week without meds, his follow-up bloodwork was equally spotless confirming that he was indeed ready. 

For the first time ever, he got only breast milk throughout the day. And I do mean day, because the next day, we introduced solids. 

We ascribe to baby led weaning philosophy and without getting too deep into it, my almost 10 month old but 6 month adjusted baby has been showing readiness cues for some time. 

As much as I love the romanticized notion of just exclusive nursing for a little while longer, I can’t justify withholding solids anymore without it clearly being for my emotional needs not his physical needs. And in reality, he stills sucks at nursing anyhow (pun intended).