Infertilty & NICU Babies

Infertility & Making Babies


I have had a few people ask about this and I have finally felt like I have enough perspective on the subject to see it and am finally ready to tell our story of infertility and IVF

When my husband and I were 'cycling' with IVF a few years ago we kept very quite about it.  I have to admit I had quite a bit of shame around it.  I was/am the broken one.  According to tests my husband could fertilize a small village without much effort. But one small test confirmed that there was/is no way for me to get pregnant naturally.

When you are given this kind of news the magnitude of it takes a while to sink in.  At first I mourned that I was broken, then the possibility of never having children set in and then what that might mean to my marriage.  We had tried for years to get pregnant and now that it was confirmed that the efforts had been wasted we stopped everything for a while.  We had always had a great sex life but the past couple of years it had been dipped in the excitement of possible baby making.  Sex IS better when you are trying to create life.  It makes it a far more loving and bonding act. Now we had to find our way back and more often than not I was just too emotional.  Sex became a reminder of being broken.  I called myself 'the broken bird', not just because I felt that fragile but because I felt like I had come slamming down into the ground.

I was diagnosed with severe bi-lateral hydrosalpinges.  Essentially it means both my fallopian tubes are badly damaged, blocked and full of fluid.  This was as a result of a ruptured appendix as a child that wasn't caught soon enough by doctors and I had developed gangrene and peritonitis before they operated. There was no chance to repair and in fact it was recommended to me that  they be removed to increase the chances of IVF working.  The day of that recommendation I booked the surgery. I have always been a bit of a 'rip the band-aid off' type and wanted to get it over with.  When and if we decided to get brave enough to try IVF was something we could worry about in the future, right now I could deal with getting this done.  It was booked for a couple of months later.

The tubal ligation was done by laparoscopy, something they claim is less invasive, yes the incisions are smaller (but more of them and if you added together the length of all of them it would probably be equal or greater than one incision) but they also blow you up like a balloon to aid looking around.  My small scars healed fast, despite the fact that I pick at stuf and my insides hurt for a couple of weeks.  Once the surgery was done Big Daddy and I stopped talking about having kids.  We just dropped the subject.  It had become far too complicated and usually ended with me in tears. I was 33 and I guess we felt like we had time.

Two years passed. It was the very early spring of the year I was to turn 35. Life needed to change.  Big Daddy had gone back to school and was about to finish. We weren't liking our neighbourhood due to neighbours we had had to call the police on various times for domestic violence .  We wanted to sell our house and move.  But to what ends?  What was our plan?  What were we 'doing'?  And where were we going? I had been cancelling all appointments at the fertility clinic when they came up. I wouldn't even discuss it with Big Daddy just reschedule again for 6 months later.  I just wasn't ready. I called to cancel another appointment but this time when the coordinator looked at my file she said "You know you turn 35 this year?"  She said it as a friendly reminder but I knew it really meant "Shit or get off the pot".  All things fertility get exceedingly more complicated and have a lower chance of success after 35.

We listed our house but before the sign went up outside there was a bidding war and it was sold 2 days later.  We were moving. We had freed up some equity, and I didn't have the time to ponder my sorrows and decide if I was brave enough to try a cycle of IVF.  Apparently I was going to have a big shit whether I was ready or not...... Wow that really didn't turn out to be the right metaphor......

We both knew this was a long shot but "you never know if you don't try' and I knew we (I) would regret it if we didn't.  I did everything to save myself from the pain and devastation if it didn't work - I applied for a new degree program which I was accepted for.  I decided to start right away and because of existing credits I was going to be picking up mid semester. Cycling would start in February and school would start in April before I knew if I was pregnant or not. We told almost no one of the IVF.  I told my best friend and my a cousin whom I am very close too.  This way the sorrow of a failed cycle could be diminished because I wouldn't have to deal with everyone elses disappointment.  


IVF is not fun.  There is nothing that feels baby-making about it.  It is cold and clinical and mostly sad.  Most ART (Assisted Reproductive Therapy) appointments are very very early in the morning.  Not only is this so they have a better chance of monitoring your hormones uninterrupted by daily stimulants like coffee but an attempt to keep your appointment far away from the pregnant ladies coming in for various ultrasounds and check ups.  It is still impossible to miss them.  The huge symbolic incubators of what my body won't do, of what might never happen for me.  I would never begrudge someone their ease of getting pregnant but it is a VASTLY different experience than I had.  Yours was probably fun or at least pleasurable for at least one of you.....I don't want to project on to your sex life so I will just assume the worst.....

The first stage of IVF is to 'put your ovaries to sleep'.  Essentially they put you in a forced menopause. After all the preliminary testing, monitoring and 2 months of being on 'the pill', March 7th 2007 evening I did the first of many many shots. A needle full of Suprefact.  I did it myself, alone and on the phone with the friend.  Big Daddy went to hockey.  I told him to.  Something about him being there put more pressure on the whole thing and I was freaking out enough for the two of us.  It didn't help that I had jokingly told him that the shots had to be injected into my eye ball..........he has a eye ball 'thing'.  I still don't think he has recovered from that visual.  They expect that it will take at least 10 days of daily Suprefact* injections before you are suppressed enough to move on to the next stage.  These days are filled with typical menopause symptoms - night sweats, hot flashes etc.  It is not pretty and feels pretty terrible. I was getting almost daily acupuncture to help ease the discomfort of the IVF and to increase it's odds of working. (Studies have shown that acupuncture during fertility treatments greatly increases the likelihood of a pregnancy)

*Different drugs are chosen for different people's situations so no story is the same

My first bloodwork(BW) and ultrasound (US) was on the 16th, 11 days in, and I was lucky to already have a E2 (the hormone they are trying to suppress) of 122 so I could move on to the 'Stim' (stimulate) stage.  The same day,  I started injecting Puregon 225 in the morning and Suprefact in the evening.  They are now trying to stimulate your ovaries to make follicles but only only under their control.  The Puregon stimulates while the Suprefact suppresses what your body might naturally be trying to do.  I was to continue this for the next 6 days. 

March 21st I had BW and US.  My E2 was now 6510 and I had 8 follicales on each side. I was told to continue what I was doing.

March 23rd - E2 over 14,000, 11 'follies' on the right side and 8 on the left.  Daily Puregon lowered to 50

March 24th - E2 over 21,000, more follies...the final shot of yet another hormone, HCG scheduled for that evening at 10:30 pm.  This matures the eggs.

March 25th - Barely able to move.  My stomach hugely distended, tender and swollen from my enlarged ovaries. Sleep that night had been terrible.  I could only lay on my back because laying on one side put too much pressure on the ovary on that side. I am a side sleeper so no sleep was had. I can feel my insides move with every bump in the car ride to the clinic.  Big Daddy drives slowly avoiding roads with streetcar tracks (this is impossible when heading downtown in this city). I waddle into the clinic like I am already pregnant.  Everything look good and the egg 'extraction' is scheduled for the next morning. Another sleepless night

March 26th - 7am in the hospital.  Everything I had read about this procedure was fairly tame.  Even the women in my Infertility Support Groups said it was as bad as menstrual cramps.  The send home pamphlet from the clinic said to take regular Tylenol when you got home from the procedure. So I went in with no real 'fear', sure lots of anticipation and some nerves but I wasn't worried about it hurting. Besides, I am tough balls.  I have tattoos and have had things pierced and well... they drug you a little.  'Twilight' they call it....and yes, it does involve vampires. While I am getting IV'd Big Daddy is suppose to head next door and watch some 7 am porn to make his 'donation' to the cause.  Now 'next door' isn't the room next door BUT the building next door...what? hospitals don't have 'porn watching rooms' on every floor?? Apparently not. So not only did he have to get the 'deed' done with numerous people knowing what he was doing in the 'porn room', after numerous OTHER people had done the same thing in that room that morning but he then had to carry the now captured 'sample' in a small brown paper bag down the street to the next building.  And he was told to carry it in the armpit of his jacket to keep it warm.......he arrived back at the clinic with the paper bag with a cup in it which he handed to one of the nurses.  In my slightly drugged state I thought one of the nurses had sent him out to get her coffee so I berated him and said I couldn't believe that he had the 'nerve to leave me to go get another woman coffee while I'm laying here trying to start OUR family'....do I have to remind you that I went to theatre school?

So again feet in stirrups....you know I swear that almost as many men saw my 'gina during IVF as in college...it was a teaching hospital after all!! The egg removal is done with a huge needle, maybe 12" needle!!! (remember I was drugged, and men have lied about size to me for years) with a tube attached to the end.  They go in vaginally and poke it through the cervix wall into your ovary and using ultrasound pierce the follicle that holds the egg and suck it out into a test tube that is at the end of the tube.  One test tube per egg, one poke per egg.  Big Daddy sat beside me holding my hand. We could watch the whole process on a series of tv screens mounted to the walls. Every time a test tube was filled it was taken off the tube and replaced with an empty one.  The full one was passed through a window in the wall to a 'lab' where the contents were dumped out on to a microscope.  If a viable egg was in the contents they would call out "one" for the first one, "two" for the second etc.  We could see the microscope contents on one of the  large tv screens.  The contents look like, in my opinion, blood, pus and wet kleenex.  It isn't pretty.  We made it through the right ovary fascinated by the process. We were 11 eggs in at this point.  They moved to my left ovary.  I could tell right away it was going to be different.  The first piercing really hurt.  I told them. "Twelve" she called from the lab. The doctor said it might just be where there is more scar tissue and to let him know if the next one hurt. "YES!" it hurt. "Thirteen" the lab called. He tried the other side of the ovary, I gave a little scream and squeezed Big Daddy's hand. "Fourteen" said the lab.  Big Daddy started to turn white.  Suddenly the fascination ended and reality came crashing in.  It is harder to be distracted from the hospital smell, the blood and the anxiety by the pretty colours from the big screen tvs when you or someone you love are in pain. "Fifteen"  Big Daddy started to look bad.  A nurse asked him how he was doing...."Sixteen"...feeling faint he had to leave and I could only keep doing this if I wasn't concerned about him.  Two nurses escorted him out to recovery. "Seventeen" It was me, the doctor and the 'tube runner' left in the room.  I closed my eyes and started chanting. Nam Myoho Renge Kyo Nam Myoho Renge Kyo "Eighteen" Nam Myoho Renge Kyo Nam Myoho "Nineteen" Renge Kyo Nam Myoho Renge Kyo "Twenty"......and then he stopped. "We have enough, there are more, but we have enough, you are in a lot of pain, lets stop'.  I was taken into recovery to be set up in the bed beside Big Daddy who sat sipping apple juice, still slightly white, embarrassed and being attended to by 3 nurses....so totally loving it.

I was, or should I say WE were sent home a couple of hours later.  I was sore, emotionally and physically.  I went back to bed and slept for a couple of hours, woke up, took some pain medication and went back to bed.  I must have slept for age because I woke up in the middle of the night in the most pain I had ever experienced in my life.  I went to the bathroom and vomited a few times.  The bathroom floor was nice and cool, I was hot or at least felt hot.  I spent the rest of the night on the bathroom floor trying to sleep, in pain and unable to keep pain meds down.  I called the clinic in the morning and spoke with the doctor.  I was told it was probably because of all the scar tissue in my abdomen and that this is unusual but not surprising considering the extent of the damage to my insides.  They said to take pain meds and try to sleep.  If it didn't get better over the next 24 hours then there might be something to be concerned about and come in.  I did get better.

The process is to wait 2 days and they call you telling you how many of your eggs fertilized. They then call you again the following day with a day 3 update. Usually on day 3 you have a few less 'eggs' as ones have died off or stopped dividing.  I was told on day 2 that we had 16 and then called on day 3 to be told we had 17.  They mentioned that it was one of the most successful IVF fertilization percentage they had ever had.  I credited this to the acupuncture.

On day 3 there is the option to do the transfer (or as some people call it the 'implant' although nothing is actually 'implanted') and really it is more of a turkey baster themed party.  I spoke with the doctor telling her how much pain I was still in for the egg removal and we decided that with 17 eggs I was the ideal candidate for 'going to blast' which is essentially waiting another couple of days and letting the eggs mature further to a stage called blastocyst.  Blastocysts have a much higher chance of creating a pregnancy but you can also loose all your fertilized eggs (they die) having them outside of you body for so long.  If you only have a couple of eggs it isn't worth the risk but when you have 17 and you are in physical pain it just makes sense.  A blast transfer usually happens on day 5.  My day 5 was April Fools Day.....after all this work, all the drugs, all the pain....all the everything...I refused to 'get pregnant' on April Fools Day!!  Luckily they called the morning of day 5 and said they were over booked and I still had 17 eggs! (unheard of craziness) did I mind coming in tomorrow. I didn't mind.

The next day we arrived and had a chat with the doctor.  We had 9 eggs that were 'perfect' and had a very high probability of creating a pregnancy but I was also close to turning 35 so we had a choice.  Ontario rules are that at under 35 they will only transfer only 1 blast but at 35 and over they will transfer 2 blasts (these numbers are 2 and 3 respectively for 3 day old fertilized eggs) Did we want to transfer 1 or 2??  We had waited so long, spent so much money (Wait stop the presses, IVF costs money?  Yes even in socialized medicine Canada it is EXPENSIVE, at this stage we were already in the hole close to $10,000), we knew we wanted more than one kid so we didn't need to think about it too much.  Two!!

They picked the best two, squirted them in, I lay down for 30 minutes and went home.....to wait and know nothing for 2 weeks....Everyone in the groups I belonged to said this feels like the longest two weeks of your life.  Waiting until you can POAS or Pee On A Stick.  I didn't find it too bad but I was going back to school and had school supplies on the mind. I did eventually POAS at around 2 weeks.  The results were kinda questionable.  The clinic had asked me to come get blood work a week after the transfer but it meant finding somewhere to take blood on Easter Monday and no where was open.  Because of my school schedule I didn't manage to go for another couple of days.  They called me during a class with the results. Yes you are pregnant and from these numbers you are very pregnant.  At 8 weeks along they do your first US. This is what we saw


Big Daddy stared at it having no idea what we were looking at.  The nurse asked us if we knew what this meant.  I gave a scared grunt....Big Daddy, knowing he was the only one who didn't know, goofy grin on his face studied it closely for a minute and said 'no'.  Twins they said.  You are having twins.  We both laughed nervously and fell silent. We left like zombies.  Walked all the way to the car and drove half way home before either of us said anything.  Big Daddy said "the dog is going to freak out!!"  It was another 2 hours before I realized I left my purse at the clinic.

We waited til I was 9 weeks pregnant before we told anyone. Just days after we found out it was twins.  It would've been impossible to keep it a secret much longer.  Not only was there a huge birthday bash for Big Daddy and someone would notice if I didn't drink at all but I was already starting to show.  It all starts to pop that much sooner with two in there.

And now on the other end of all that fear and sadness, I carry this act of bravery, of doing IVF around like a metal.  My shame of infertility became pride for how much I had to do to have these children.  The most wanted children, the hardest worked for children.


NICU Babies

The NICU smells like hand sanitizer.  The lighting, the whispering, the constant sound of monitor alarms going off, and the barely-keeping-it-together parents blend together to make it feel like the twilight zone.  I sat there in a wheelchair more than 12 hours after my preemie twins were born (via emergency c-section), meeting them for the first time through the plastic of their incubators. These were the children that I had longed for, begged for, prayed for, WORKED for.  Years of infertility, a surgery, IVF and a high-risk pregnancy, and there they were…two tiny total strangers?  Two total strangers with tubes and monitors and things that went beep.  Was this a normal way to feel? Being a new parent is overwhelming at best, and premature birth by emergency c-section isn’t the best way to arrive at parenthood.  So what do you do if your first job as a parent isn’t what comes naturally? Holding, bonding and feeding are replaced with watching, waiting and pumping.

 
























First picture of Beatrice

My twins Gabriel and Beatrice were born at 33 weeks gestation.  My water had broken a week earlier with no contractions, so they kept me in the hospital, trying to ‘keep me pregnant’, with the hope of getting me to 36 weeks. This threw my birth plan out the window and sent my midwife home. Exactly a week from when my water broke I started having contractions at 11 p.m.  Around 1 a.m. I called a nurse, thinking I had eaten something that wasn’t sitting well (dumb I know but it just didn’t feel as bad as everyone had warned me)  Turns out I was 8 cm dilated with an arm hanging out of my cervix.  There was no other choice but c-section, and no time for an epidural. I would have to have a general anesthesia.  I yelled our home phone number to a nurse to call as they rushed me down the hall to an OR.  My husband and mom would arrive just in time to see them whisk the twins down the hall to the NICU.

So there I was 12 hours later, groggy, sore and high on morphine, meeting the great loves of my life.  I just didn’t know it yet. At birth the twins did great. They were both good sizes for 33 weeks gestation -- Gabe weighed in at 4 lbs 3 oz and Bea at 3 lbs 11 oz.  Neither of them had breathing problems. In theory babies don’t learn how to suck until 36 weeks gestation, so like many parents of preemies, getting our babies nursing was going to be one of the biggest challenges.  We were told that they needed to spend a couple of weeks in the Level 2 NICU, to monitor and make sure they were feeding well and gaining weight.

NICUs have a strict schedule, feeds every three hours (with a reminder to pump every three hours) with a diaper change and a weigh in before the feed.  Twice a week they work a bath into the schedule. They want parents to be as involved as possible and it is a wild learning curve.  Not only are you learning how to handle your too-small babies, but you also learn what every monitor does, what every alarm means, every nurse’s name and which ones you like or don’t, and the breast pump room procedures and protocol. You quickly make strange, intimate friendships with the other moms in the pump room.  Learn their children’s names and condition. They are the only other people who know what you are going through.  But then you quickly forget them once home, out of survival instinct to leave the painful time behind you.

I was released four days after the twins were born.  Although they were doing great, I was going home without them. With all the medical intervention, feeding tubes, the beeping and whirring of monitors, endless hand washing, all the alien hours we spent in hard chairs, disconnected from the world, peering through plastic at them, leaving the hospital without my babies hit me as the most unnatural thing possible.  I cried the whole way home.

Our usually cool grey rainy October days had become a cold but sunny November and it felt like we are out of the woods. It was Saturday November 4th and the kids were a week old. I was healing nicely, the kids were gaining weight, and I was doing well with my pumping every three hours and was bringing milk in to the NICU.  My husband, my mom and I had showed up at the NICU to spend the day with the twins.  A nurse blocked the path to our section.  There was a ‘complication’ she said.  That morning they had found blood in Gabe’s diaper.  They had already started antibiotics but wanted to do some other tests.  The doctor on duty for the weekend sat us down. We could tell it wasn’t good. She said the next step was a spinal tap and gravely handed me consent forms. I couldn’t sign them. I handed them to my husband.



























Newborn Gabriel

After the spinal tap and another diaper with blood they concluded that Gabriel needed higher level care.  Hours later we were in an ambulance with a transfer team taking us to Sick Kids Hospital.  There he was placed in the Level 1 NICU.  Most of that evening is a blur.  His new doctor sat us down in a private waiting room and told us the diagnosis: Necrotizing Enterocolitis, or NEC.  This is a condition seen primarily in premature infants, when portions of the bowel undergo necrosis (tissue death). They think it’s because of an overgrowth of bacteria.  She didn’t give me any hope for survival; she made it very clear that this was VERY serious.

They had put him on strong antibiotics and he would be monitored closely.  The fear was that the bowel would perforate and dump its contents and bacteria into his abdomen. Even though visiting hours were long over, they let us sit with him.  I sat there like a zombie wondering how I could say goodbye to someone I barely knew and had waited for my entire life.

At 2 a.m. my mom and husband said that we should head home and try to get some sleep. They were concerned that I was still weak from surgery. I said I couldn’t leave and I had to be there if he died.  I asked the nurse what the chances were of him making it through the night.  She looked at me like I had asked her what planet she was from and said, “Oh, he’ll make it through the night, he is going to be fine.” When she noticed I was staring at her like she really did come from another planet, she added, “The doctors have to tell you the WORST case scenario, but we have much tinier preemies in here with much worse cases, and they are fine. You have a big boy there, his case was caught early and he hasn’t perforated.  He is really sick but it looks good, go get some sleep, I’ll call you if anything happens.”  We went home, but I didn’t sleep much.  We went straight to Sick Kids in the morning to find out he had perforated overnight.  They scheduled the surgery for later that day and I went to the pump room.

Many of my memories of that time are of the pump rooms. Travelling back and forth between the two hospitals every day, all day, and pumping every three hours wherever I was.  Maybe because it felt like the only thing I could do to make them well.  It was the one act of ‘Mommy-ness’ I was allowed, this I could do.

I was allowed to hold Beatrice for short periods, but with all the tubes and constant concern for body temperature, the cuddles were awkward and short. After about ten days she was doing so well they took out the IV, which made things a lot easier.  They also wanted me to start putting her at the breast even though she might only lick and sleep.  It would help with my milk production (which wasn’t great from all the lack of sleep and stress) and it was bonding time, which we both desperately needed. I think I finally started to feel like a mom during those short periods.

Gabe’s surgery was 3 hours long.  It was a Sunday and the hospital was quiet.  The three of us sat in a huge empty waiting room…waiting and praying.  The surgeon slowly walked over to us and sat down. “It went great.” I’m not sure I heard much more of what he said after that, but I did learn that Gabriel lost 10 cms of his distal bowel (apparently the best part to lose) and also his appendix (which is weird because, if you are an anatomy geek like me, you know that the appendix is on the other side of the abdomen).  Essentially they cut out the dead tissue and re-joined the pipes. They had created an ileostomy (like a colostomy but from the small intestine instead of the colon), which he would have for approximately four months while his gut healed, after which they would reverse it.  He had a long road ahead of him, but he had a road, and I could breathe again.

I’m not sure how we made it through the next few weeks. The landmarks that meant they were one step closer to being able to go home: tolerating feeds, gaining weight, no bradicardias, no apneas, moving from an incubator to a cot. Slowly losing all the tubes and wires, one by one.  The NICU nurses taught us how to bathe them, how to check temperatures, different tricks to encourage decent feeds and ways to burp efficiently.  Although they are twins they had very different challenges.   Gabe was a great eater but would often spit it all up.  Bea was slow and would fall asleep in the midst of a meal, forcing us to put the rest of her feed into her NG tube (a tube in her nose that goes into her stomach) She wasn’t going home with an NG tube, so we had to find ways to keep her awake to finish her meal.

I managed to keep it together most of the time until the day Gabe was transferred back to the level two NICU.  His (and my) favorite nurse at Sick Kids, Hillary, helped with the transfer back to the hospital he was born in.  As soon as she walked in with the ambulance transfer team I broke down. In their first week together they had been on opposite sides of a partition. On this day we put him into the cot next to his sister. So this was the first time since they were born almost four weeks earlier that I got to look at them together.   It was the first time I felt like I could enjoy the gift of these amazingly wanted babies.  It was the first time we were a family.



























Bea and Gabe together again

It is now three and a half years later and as I write this I hear the kids playing outside with their dad.  Everyone is happy and healthy and although we had a lot more drama, stress and tears than most trying to make our family it has made us hug them a little tighter, kiss them a little more and watch with wonder every minute with them that we almost didn’t have.

Read the story of how they were conceived through IVF 

2 comments:

Jennefer Filntissis said...

What an amazing story - cried most of the way through it:) You are a very amazing strong woman - god bless you and your family:) Cherish every minute of every day!!

Anonymous said...

I wish I knew how to write as well as you do as I want to put my story out regarding IUI including my journey from being diagnosed with celiac and so on. It is very uplifting and inspiring to hear anothers journey through all this. You are very stong!