Showing posts with label PCOS. Show all posts
Showing posts with label PCOS. Show all posts
Friday, September 14, 2012
Nora's story started back in May of 2010. We knew that it would take some time to get pregnant since I have PCOS, so Todd and I tried to get pregnant for almost a year and a half using fertility pills. After an entire year we decided to take a break over the summer, and low and behold on September 9th 2011 we found out that we were pregnant! My due date was May 14th 2012. I was extremely sick for the first 17weeks and after that I felt great and was able to finally start enjoying my pregnancy, that was until week 25.
On February 1st, I woke up for a routine doctor visit that was scheduled for 10:30am for my glucose test. Nora was 25weeks 2days gestation. As I was getting ready that morning I started noticing some slight cramping, I didn't think much of it and kept getting ready. As I got in the car the cramps were getting a bit worse but I thought maybe they were braxton hicks. I called Todd told him what I was feeling, told him I would run it by the OB but I was sure everything was fine and she would tell me it was all normal. In the Dr appointment I told her, "ya know the only reason I am saying anything is because they are happening like every 15-20min." So she checked me and said, that my cervix was softening but was not dilated. So she sent me home, told me to take it easy, drink lots of water, put my feet up and call her if I have more than 6-8 "cramps" in an hour. Well I went home, and in the first hour I had 8... I totally tried to downplay them. I was in such denial and terrified all at the same time. I thought if I ignored them, surely they would go away. I was on the phone for most of that hour with Todd, I told him I had had 8, but 2 I could barely feel so we wouldn't count those <--- idiot! Thank God Todd knew better, he left work, told me to call the hospital and tell them we would be coming into triage.
By the time we had arrived in triage and I was checked it was 2:30pm and I was already 2cm dilated!! WHAT??? I am pretty sure I went into panic mode at that point. The Dr told me I had a slight UTI, he would put me on antibiotics for that, jack me up on Magnesium sulfate (worst crap ever!) and send me to the special care unit. They did an ultra sound to make sure she was head down, which she was, and to check her weight. They predicted her at being 1lb 14oz. I could not even fathom what 1lb 14oz's looked like...I mean seriously...a 1lb baby?? This is where my memory gets fuzzy and I have to rely on what my husband tells me happened. At 6pm I got my first steroid shot for Nora's lungs followed by my first dose of Mag. When they gave me the mag it made me sooo sick and it caused me to basically black out. The mag is a huge muscle relaxer, so I couldn't move my arms, my legs, I couldn't even barely lift my head. Poor Todd, every time I had to puke he had to run over and completely sit me up. The nurses told Todd that they had never seen someone react to mag as badly as I did. They planned on giving me the first steroid shot at 6pm that night and then the second at 6pm the next night, then they realized they didn't have that kind of time, so it turned into 6pm and 6am, then they realized they didn't even think they had that time, so i got the first one at 6pm and the second one at 3am... I am no doctor but I know that it was ultimately God, but also those shots that saved Nora's life. I know I complain about the mag and how much it sucked, but it kept Nora in long enough to get the shots, and let them be in my system for a while to actually start to work. I know they tried all through that night to stop my contractions but to no avail. At 3:30am I was wheeled into labor and delivery and they started making preparations for delivery, even ordering my epidural (which I never received that night). At around 6:40am Todd sent out a desperate plea for prayers on Facebook, and by 8:30am my contractions had finally stopped, and I was 3-4cm dilated! They told me then that I would be on hospital bedrest until Nora was delivered and that they would do everything they could to stop it, but she would most likely be here within 7days.
Over the next few days, we had consults with a MFM (maternal fetal medicine), and with one of the Doctors from the NICU. They were trying to prepare us for what to expect with the birth of a 25weeker. Let me tell you, those are the scariest conversations I have ever had, and thankfully I don't remember most of them because of the mag. Apparently I straight fell asleep in the middle of one conversation I had with my MFM. The nurses thought it was hilarious that the doctor put in my chart "patient fell asleep, continued conversation with her husband." haha like I said...the mag and I did not get along! But I do remember praying to God saying, I will lay in this bed for the next 15 weeks...just please don't let her come early,please!! God had other plans though...
Two days later on February 4th, they decided that I was finally stable enough to wheel back out of labor and delivery and back to the special care unit. They wheeled me out at noon, and at 12:10pm my contractions started again. This time they were not able to stop them. I labored, panicked, terrified, and sick to my stomach for hours. They jacked me back up on more mag then I was on the previous few days and told me to try my best to relax...right. Todd's family was there, but all I wanted was my Mom and/or sisters, who were all at my other sister's baby shower. The nurses kept asking me if the contractions were strong and I kept telling them no, I thought if I told them how bad they really hurt that they would give up on trying to stop my labor. Because Nora was so small they couldn't even track most of my contractions on the monitor. How they knew I was having a contraction (with out me telling them) was because Nora's heart rate would dip with every contraction. Todd could see it all over my face every time I had a contraction, but I don't think he quite understand my insane logic of thinking at the time. He kept saying, Renee I know their getting stronger, you can no longer talk through them. I just really remember thinking, if I can keep lying about how strong these contractions are, they will keep trying to stop my labor. Finally around 5pm my Mom got there, and around 6:30 my water broke and they finally told me they were not going to be able to stop it this time, I was dilating way to fast. I absolutely broke down... I lost it. I was terrified for Nora, terrified that she would not make it. They started preparing me, telling me that she would not cry when she was born, she would not be placed on my chest, that I would not see her when she was born, and they would be rushing her to the NICU right after birth. I was supposed to have a joyful birth, full of fun, excitement, and anticipation. Not one of fear, terror, and horror-stricken panic. Around 7pm they finally turned the mag off, in hopes that I would be able to start to feel my legs and arms, and be able to lift my head for delivery. As soon as they turned the mag off, my labor progressed rapidly. By 8pm I was 6-7cm dilated and had just gotten my epidural in a last ditch effort to stop them. By 9:50 I was 8cm and by 9:55 I was 10 and ready to go! I have never in my life been more scared than I was in that moment. I remember just crying in shear desperation, just begging and pleading that she stay in, I kept repeating over and over again...its too soon...she's to small!
By 10pm my entire labor and delivery room was full of 10 NICU staff (nurses, Nurse practitioners, neonatologist, and respiratory) and then 5 more labor and delivery nurses and a doctor. You could barely move in that room there were so many people. With me was Todd and my Mom. I needed my Mom in there so that Todd could leave if he was able to be with Nora and she could stay and comfort me. After just 2 short pushes, Nora Katherine was born at 10:38pm weighing only 1lb 14oz and 13in long. When the doctor held her up for a split second for me to see, I lost it again. She was tiny and pink but did not cry at all. I knew she was going to be small, I knew she was going to be beyond small, but you can never begin to prepare yourself for that. I had no idea how something so small could ever survive. She took my breath away and I began to pray like I have never prayed in my life. I must say though, she was tiny, but she was perfect. Todd stood by my side, listening to everyone working on his precious daughter. They intubated her right away in my room and tried to get her as stable as possible. All I remember Todd saying over and over was, "they said she took a breath...they said she is breathing, babe she is breathing...shes breathing" I knew it was all machine/vent breathing but I just kept thanking God that she was alive. They worked on her for about 20min before they put her in her isolate, wheeled her next to me so I could get one good look at her, and then they rushed her to the NICU.
Todd was able to see her an hour later, and I was able to finally see her at 1am after my epidural had worn off. She was the most beautiful thing I had ever seen. She gripped right onto my finger, opened her eyes and looked right at me. That paired with the first time I got to hold her were some of the best moments of my life.
We didn't know until months later how critical her first 12hours of life were. The neonatologist told us there were several times they did not think she would make it, and every time I think about that I cry. Nora was born with an infection called Chorio, also within the first few hours of life she had a blood transfusion (within 6hrs of being born) and developed a bilateral grade 4 brain bleed (the most severe brain bleed you can have, that we would find out about 10days later).
They are still not positive on why I went into labor so very early, it could be a number of things, or just 1 individual thing, but unfortunately there is no way for us to know. I have a bicornuate uterus which can sometimes cause pre-term labor, but I came into the hospital with a UTI and Nora was ultimately born because of a sever infection in my uterus. There is no way to know if the UTI started everything, which then would have caused me to go into labor, and then being dilated caused the infection, or if the infection came first, if the bicornuate uterus caused the pre term labor etc... We were told that when a women goes into labor early, if caught very early, a lot of times the doctors can stop it, but when there is an infection the drugs will not work, and the baby knows its uninhabitable and it has to get out. Which is exactly what Nora did, and I thank God everyday that she did, less she could never have survived in there with the infection.
What she has been able to overcome is nothing short of a miracle. Everything that happened on those horrific scary days is nothing short of a miracle. The fact that I had a Dr appointment on the day my contractions started, (I would never have gone in because i didn't think they were contractions), is a miracle. The fact that they were able to stop my labor if even for a few days, so that the steroids could take effect is a miracle. The fact that Nora was born alive, even though her blood count was severely low, she was not breathing, she was magged out, and had a potentially fatal infection.... an absolute miracle. The fact that Nora had a bilateral grade 4 brain bleed... that could not be identified just a few short weeks later... miracle. The fact that she would later overcome 2 more potentially fatal infections...miracle. The fact that Nora is a happy, healthy 7month old right now.... MIRACLE!!! I would never have imagined the very worst, most terrifying day of my life, would also turn out to be one of the best... I can't imagine having a worse start to your life, but she is a fighter and she is our little miracle. We thank God everyday for her. Todd and I are forever grateful of all the miracles God has performed in our lives and especially with our sweet baby girl. My life changed the moment I had her, in ways I never ever imagined. I walked into that hospital on Feb 1st one person, and back out May 10th a completely different person. Nora has taught us more in the first 5months of her life so far, then she will ever know. I could not be more proud and in love with my little miracle.
Tuesday, February 28, 2012
When we
brought Judith home from the NICU, we thought our journey with her would be
different. We knew we’d be dealing with
the normal issues a 29 weeker that’s also IUGR would deal with, but had the
hope that she’d live a long, normal life and be caught up by the time she’s 2
or 3. We knew that we were lucky that
she did not need a monitor or oxygen when she came home, were lucky that her
ROP self-resolved, and she was taking breast milk from a bottle like a champ
after struggling for weeks to master her feeds.
Never in our wildest dreams did we expect another wrench to be thrown
into the mix; never in our wildest dreams did we expect that, after coming so
far and helping her fight to survive, would we be this fearful of the future,
knowing the odds of her dying long before us would become our reality. Raising a preemie is challenging; raising a
preemie with Cystic Fibrosis (CF) has been very challenging.
A little
back story: For years, I struggled with very irregular menstrual cycles. Even as a teenager, I was becoming aware of
my family’s history with infertility, and started to understand that I would
have a difficult time getting pregnant.
I was open with my future husband about this, which is why we didn’t
wait a full year before initiating infertility testing. In 2008, after visiting a reproductive
endocrinologist, I was diagnosed with polycystic ovarian syndrome, or
PCOS. At this time, we also discovered
that my husband, John, is a carrier of a very common cystic fibrosis mutation,
Delta F508 (DF508) - if you have never been through infertility testing, they
check you for everything, including
common genetic conditions and mutations that can cause problems for a fetus or
an infant/child. My tests came back
clean - at the time, we didn’t realize that most clinics will only test for
about 36 common cystic fibrosis mutations.
Therefore, we assumed I was in the clear; the most that could happen was
we could have a child that would be a carrier of the disease, and it would only
become an issue if our child would try to have a child with another carrier.
Wrong. So, so wrong.
Fast
forward to the day of her discharge, and on her orders (and in the letter
dictated and sent to our primary pediatrician), we were again told that she
would need to undergo further testing because of the positive hit for CF. After a visit with our primary pediatrician,
we set up an appointment at Hershey Medical Center for a sweat test, which
would be the deciding factor. The test
would involve a technician rubbing a special chemical on Judith’s arms, then
attaching an electrode to the spot and sending low doses of electricity through
the electrode that would activate the chemical, causing her to sweat. A pre-weighed piece of gauze was placed on
each arm and wrapped to collect her sweat.
Poor Judith hated the test, and who can blame her? She was not a happy camper! We also had an appointment to meet with a
pulmonologist at the CF clinic after her test, and we would go over the results
together. We received some information
about the disease, then found out that, because of her size, she didn’t sweat
enough for them to get an accurate result.
We had to return and repeat the test once she gained some weight and
grew. I was bummed that we had to go
back, since that would mean another appointment among the already high amount
of appointments, but I understood why we needed to do it. The pulmonologist didn’t seem too concerned
given the history we told him, so I thought this was just a formality, and the
second visit would be the last.
It was
April 20, 2011. Judith was about 8 lbs.,
a magic number for us because that meant she should be able to sweat enough to
give us an accurate result. We went
through the test again, and once completed, walked over to the offices to meet
with the pulmonologist. The nurses
weighed and measured her, then told us that the doctor would be in
shortly. We sat in the room for almost a
half hour before the doctor finally came in and gave us the news: Judith did
indeed sweat enough for this test, and the numbers were high enough to make a
diagnosis of cystic fibrosis. I was in
shock; John wasn’t with me to hear the news (my mother came with me to help),
and I had no idea how he would handle it.
Everything was a blur: a team of people came into the room to talk to
us, we were given multiple prescriptions, a spacer, and a manual percussion
cup, and instructed on how to do breathing treatments with an inhaler and how
to administer chest physiotherapy (CPT) to help move the sticky mucous out of
her lungs. We also received orders to
set up a repeat test for a second opinion since her numbers were on the lowest
end for definitely having the disease - for a baby 6 months or younger, any
number of 60 or greater means the infant has the disease, 30-59 means it’s
borderline, and 29 and lower means no disease at all. Judith’s numbers were 60 and 61.
We returned
for the second sweat test, and the results were conclusive: she definitely has
the disease. This time her numbers came
back at 64 & 65, moving her farther into the category of certainty. Judith had some blood drawn for genetic sequencing;
we knew she carried a copy of DF508 that she got from John, but we had no clue
what mutation I passed on to her. A few
weeks later, we received the results from the test, and were no further than we
were before. The second mutation, the
one I passed on, is still unknown; it’s possible that it’s a more recently
discovered mutation that the lab panel doesn’t include yet, but it’s also
possible that it hasn’t been discovered.
It could be years before we find out what the mutation is, or it could
show up when we retest her after the lab expands the panel.
I never thought I’d end up being a dragon parent, one who will do anything to help their child survive and have the best quality of life possible. I feel like a lucky dragon parent, though: DF508 has the potential to cause severe disease in CF patients, thus shortening their life expectancy more. To date, Judith appears to have a more mild form of the disease, but things can change at any time. So far, she is pancreatic sufficient, meaning her pancreas functions normally and her body can absorb fats as well as you and I; however, she has been showing signs lately of a change, and it’s starting to look like she’ll join the more than 90% of CF patients who are pancreatic insufficient and need to take enzyme supplements before meals to help the body absorb fats. We’ve also been lucky with avoiding respiratory infections. Thanks to her preemie status, she received a full course of Synagis injections last year, and due to the CF is receiving the full course again this year. Aside from a couple colds and a sinus infection, our precautions appear to be working.
If you would like to read more about our journey, starting with our days in the NICU, you can read our blog 2 Bostons, 1 Preemie, &65 Roses.
Because of
that assumption, I foolishly declined the prenatal screening for CF. Being a worrier by nature, I thought, “Why
worry yourself over something that isn’t likely, something that will probably
give a positive hit because the baby is a carrier?” So the test was never done. In retrospect, would it have made a
difference? Probably not, but I will get
to that later, and you will understand why.
Anyway, since my pregnancy was high-risk, I was receiving ultrasounds
every few weeks to monitor progress and whatnot. Even with all of the ultrasounds, including
two Level II scans, never once did my OB mention about a marker for the disease
as can happen sometimes, particularly if there is a problem in the bowel.
Judith
entered into the world at 29 weeks 2 days after I was diagnosed with severe
preeclampsia and intrauterine growth restriction with low amniotic fluid. I managed to hold out long enough to receive
both steroid shots, and they helped tremendously - ironic, considering I
unknowingly delivered a baby that would be fighting with the respiratory issues
caused by CF. Sometime after her birth,
the nurses collected the blood samples to send to the lab for the state-mandated
newborn screen. We knew we’d have to
wait a few weeks before getting the results.
Once said
results returned, one of the nurse practitioners and one of the neonatologists
mentioned that Judith had a positive return for CF. I brushed it off, saying that John was a
known carrier but I’m not. Nevertheless,
they said that once Judith was discharged, we would need to have further
testing done, just to be sure.
I never thought I’d end up being a dragon parent, one who will do anything to help their child survive and have the best quality of life possible. I feel like a lucky dragon parent, though: DF508 has the potential to cause severe disease in CF patients, thus shortening their life expectancy more. To date, Judith appears to have a more mild form of the disease, but things can change at any time. So far, she is pancreatic sufficient, meaning her pancreas functions normally and her body can absorb fats as well as you and I; however, she has been showing signs lately of a change, and it’s starting to look like she’ll join the more than 90% of CF patients who are pancreatic insufficient and need to take enzyme supplements before meals to help the body absorb fats. We’ve also been lucky with avoiding respiratory infections. Thanks to her preemie status, she received a full course of Synagis injections last year, and due to the CF is receiving the full course again this year. Aside from a couple colds and a sinus infection, our precautions appear to be working.
Still, the
prognosis for her future is clouded.
There is a possibility that she could outlive us, and with new advances
that possibility increases. Currently,
the average life expectancy of a CF patient is 37. Knowing the statistics gives us hope that she
could live long enough to fall in love, get married, and possibly have
children. But some days we’re overcome
with fear that she will never live to see that average. It’s a startling thought, especially after we
worked so hard to get her where she is.
Recently, the spark of hope was kindled further with the FDA approval of
the drug Kalydeco, which will target the root causes of CF and treat them
instead of treating the symptoms.
Unfortunately, this drug will not benefit Judith, and the news of the
release is bittersweet; however, researchers are seeking FDA approval to start
working on a new drug that will help over 90% of the CF population. This drug will benefit patients who have the
DF508 mutation. I pray that the
researchers’ work on this drug is successful, as it will help Judith’s future
look a little less cloudy.
If you would like to read more about our journey, starting with our days in the NICU, you can read our blog 2 Bostons, 1 Preemie, &65 Roses.
Tuesday, December 20, 2011
I had made up my mind from the beginning that I wanted to breastfeed. I wasn't "against" formula, and if it didn't work out that was ok too. But I was going to give it a try. When I went in for my c-section my nurse was aware of my desire to breastfeed, and she made sure that I had a pump waiting at my bedside the minute I was back in my room.
The first time I pumped I couldn't feel a thing. The second time I screamed in pain... HOLY HECK did it hurt! My nurse came in and calmly told me I might consider turning the pump settings down (whoops), that helped but man did it hurt the first week or so. Then of course comes the joy of cracked nipples. I was pumping every 3 hours around the clock, at home & at the NICU.
Our NICU didn't have a very comfy pumping room and often I was more comfortable sitting by the twins bedside pumping. I also found I got more milk then or anytime after Kangaroo care. It didn't take long before the nurses told me they didn't have room for more milk, so I started stocking my freezer at home. For the longest time the twins took less then an ounce each, so I was making more then they needed (a blessing in disguise of course). At the same time I was beginning to wear down emotionally and mentally. One of our nurses then suggested that I try only pumping every 4 hours at night so I could get some rest, and once a week I'd take a night off and sleep the whole night thru. This worked for about a month and a half... then I noticed my supply was starting to tank a little. Meanwhile in the NICU they were fortifing the twins BM with Neosure for extra calories and we were soooo close to getting to actually trying to breastfeed. I'll never forget the day they said we could start "non nutrative sucking". Blake got to try first, it wasn't going well, they gave me a nipple shield, it went a little better. A few days later he was back on CPAP and we had to stop. A week later I got one shot with Addison, she bit down hard.
The LC's were just about driving me crazy, bless their hearts. My supply continued to drop no matter how many power pumps or anything else I tried. At this point I was getting about an ounce to two ounces each pump. The twins were taking an ounce a peice. I started trying to track when I got the most milk, and was considering supplements to increase supply. Then one of the LC's asked me something about my medical history and my PCOS came up...she then explained that PCOS also had a hand in my supply and that a lot of woman with PCOS have supply issues and do not benefit from supplements. Plus I'll be really selfishly honest, the idea of smelling like maple syrup (from Fenergreek) was not appealing to me in the least. My OB said he didn't reccomend any supplements either.
After much thought and debating it to the ground in my head, I made the decision to cut back and ween off the pump in effort to quit BF. Within days of decreasing pumping sessions my supply diminished. In a weeks time I kid you not I was dryed up. I knew at this point that they were past the most critical stage and that they tolerated formula, because they were already getting half and half. And any attempt at BFing was now a ways off again...
I still have days where I wish it would have worked out differently and if we ever have anymore children I will try again. I EPed for 2 1/2 months exactly and I was never so glad to put the pump away. It was the right choice for us all at that moment.
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