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Saturday, August 22, 2015

Shattered Expectations

We were expecting our happily ever after...our fairy tail ending some would call it. After all we have been through-the death of our daughter at 24 weeks during our first pregnancy, three first trimester miscarriages, a failed IVF cycle using my own eggs with PGD-we thought we finally hit the lotto when we conceived our son through my sister's donor eggs. While there were issues of concern throughout my pregnancy, none of these issues affected our son. He proved to us and to the world that he wanted to be our rainbow baby. And after the best 9 months of my entire life...I really thought our storm was finally over. I thought we were finally going to catch the break that we deserve and were going to give birth to a healthy, beautiful boy who would come home from the hospital with us.


These expectations were shattered into a million pieces when Eli was born and immediately taken to the NICU where he was diagnosed with Epidermylosis Bullosa. Throughout our entire pregnancy I dreamed of giving birth to our son naturally....being the first one to hold him while he took his first breath and cried his first cry. However, our goal was to make sure that no matter what our son would be born safely-so if we needed to do a c-section that was okay too....and I was okay with my husband getting to be the first to hold our son instead of me. Eli was born safely by c-section, so that goal was accomplished. But my husband was unable to hold him the night he was born and didn't hold him until he was 3 days old because he was afraid he would hurt Eli due to his fragile skin. It broke my heart to not only see our son suffering but to see my husband suffering and grieving the loss of what we had hoped and planned for. I felt like I failed my husband once again....once again I was unable to give him the healthy baby that he expected after 9 months of growing what appeared to us and our OB staff as a healthy baby boy from the 20 ultrasounds that I had throughout my pregnancy.




Our NICU experience has been some of the most challenging and dark days of our lives. How do you possibly wrap your head around having a child with a rare skin disease that you had never heard of before and that is absolutely terrifying to read about? How do you accept that the healthy child you expected is in fact fragile and may not ever be like other "normal" kids? How do you process the fact that you've gotten pregnant on your own four times only to have those babies die from Down Syndrome, a disease that is not painful to the child, and therefore resorted to using donor eggs from a sibling only to have a child who will live a life of pain due to his skin being unable to bind itself to each other creating open wounds? Were we really that naive to expect that our luck had finally changed....that we would actually get our happily ever after?




Throughout my pregnancy I had imagined how happy we would be after our son was born. I imagined my relationship with my sister being strengthened even more by the miracle she helped us to create. But to make matters even more difficult, my sister has expressed feelings of regret for helping us to conceive Eli. The last few months of my pregnancy she had been distancing herself from us and appeared uncomfortable with me talking about the baby's progress during each ultrasound. I had hoped once Eli was born that this wedge she purposely was putting between us would be removed after seeing how happy she had made me and my husband. But due to Eli's condition and the challenges we will now face as a family-the wedge only got thicker. My sister came to the hospital after she got off work the night Eli was born but was unable to see him since he was getting his umbilical IV put in. After that, I didn't hear from her for over a week despite sending my family daily updates. This was just as devastating to me as trying to process and accept Eli's condition. It felt as if she did not care and did not want to be apart of our lives. I knew she was buying her house and moving into her new house and had a bachelorette party out of town in the days following Eli's birth so I did not expect that she would be able to visit him, but I expected her to want to know how all of us were doing and expected her emotional support more than anyone else's. When I finally reached out to her to find out if she was going to be able to visit this past week, I was bombarded with feelings she had been holding in for months about her role in helping us to build our family. She expressed feelings that I feared she would have from the beginning when we told her not to go through with this process unless she was sure she wanted to. She expressed feelings of guilt that things still didn't turn out the way it was supposed to for us. She expressed feeling as if she made a mistake that she can't take back and anger that she now has to live with this regret. My heart hurt deeply after hearing the way she felt....I never wanted her to feel the way that she does. I always wanted her to know how appreciative we are of her. I always wanted our bond as sisters to remain strong and to get even strong through all of this. I wanted her to be able to look at our son and be proud of herself for giving us such an amazing gift of life. I wanted her to be able to be comfortable being his auntie and wanted her to treat him no different than she would treat our other nieces and nephews. All of these expectations were shattered right along with our expectations of our healthy baby boy. I am hoping that after she got to meet Eli this week that she doesn't feel this way anymore but I know I can't change her feelings. It made me feel better to see her interact with Eli as if he were a normal, healthy, happy baby....but I don't know if it made her feel any better about her decision to help us create him.


Eli has been in the NICU for 2 weeks now. While so many of our expectations have been shattered...especially after learning about the disease that he was born with, this little boy has also exceeded our expectations of what he would be capable of with his disease. He continues to prove he is a fighter. He is the strongest, bravest little boy I've ever known. My love for him has not been stolen by the fear that this disease has put in me. He has made me into a stronger person as well. He has shown me the true meaning of unconditional love. Every day he impresses me with how his body is healing itself. And every day I fall more in love with his personality that I am getting to know so well.




In my next blog I will talk more about our NICU stay and Eli's medical issues that we are working to overcome daily. I will also explain more about his diagnosis and what this has meant for him so far in life and what it could mean for his future. The support we have received since Eli's birth has been overwhelmingly beautiful. God has shown has how kind this world really is and has restored my faith in humanity throughout our journey to becoming parents. I thank all of you for helping me get through my dark days with all your words of encouragement. You all really make me feel like a super mom....and some days I need that reminder that I have come this far in conquering the hurdles life has thrown at me so I can make it even further with the strength that our son gives me on a daily basis.











Thursday, August 13, 2015

Baby M's Birth Story

Alex and I checked into the hospital at 4pm on Friday, August 7th for my scheduled induction at 39 weeks 1 day. The nurse started me on Cervadil around 5:30pm.  I was still 1 cm dilated since being checked for the first time at 35 weeks, 5 days.  I was 50-60% effaced.  The goal of Cervadil was to help thin out my cervix more so that it made dilating a faster process.  Once the medication was in place, all that was left to do was wait 12 hours for it to be taken out.

So we waited.  We watched Modern Family on tv.  We placed cards...War to be exact. And Alex beat me.  We listened to Baby M's steady heart beat all night long.  I didn't have any contractions, just an irritable uterus that was preparing itself for contractions.  Alex slept on the pull out chair and I tried to sleep in the uncomfortable labor bed as we anxiously awaited my body to prepare itself to give birth to our precious baby boy.

I slept for 3 very restless hours and woke up at 4:30am.  I couldn't go back to sleep because the bed hurt my back too much. And I was too excited to see how much closer my cervix was to being ready to deliver our son.  I sat awake waiting for the nurse to come in to take out the Cervadil.  At 5:15am I heard a healthy crying baby in the room next to us.  As I sat there listening to the beautiful cry all I could do was cry myself.  I couldn't wait to hear our son's first cries.  I had been waiting to hear our baby cry for the last 7 years.  7 years.....Riley was born silently into the world at 5:15am 7 years ago.  I started crying even harder at the memories that still linger from the trauma of Riley's birth.  We never got to hear her cry.  I was a ball of emotions between reliving the hurt that I felt on the day Riley was stillborn and anticipating the best moment of my life when I get to give birth to our healthy. beautiful baby boy/

At 5:30am the nurse took out the Cervadil and checked my cervix.  1.5 cm dilated. 60-70% effaced. Not much progress at all in 12 hours.  For an hour I stayed unhooked from the contraction and heart rate monitor while I got up, walked around the labor and delivery floor, and rocked myself in a rocking chair.  At 6:30am we started Pitocin and I had to remain on the monitor for the rest of my labor to make sure the baby's heart rate stayed stable.  I started having mild feeling contractions every 1-2 minutes pretty quickly after starting Pitocin.  Some IV pain meds helped me to fall back to sleep for a good 2 hours.  My doctor arrived to the hospital around 7am and came to check me around 8:30am.  I was 2 cm dilated and 75% effaced.  Slowly making progress.  Around 10:00am our photographers arrived to capture Baby M's birth story in pictures for us.  The doctor came back around 10am to check me again and I was 3 cm dilated and 80% effaced.  I was having contractions every 2 minutes according to the monitor so they slowed down the rate of Pitocin since I was contracting too often but not dilating as expected-they said that the contractions so close together could cause the baby distress.  My doctor came back at 11am and I was still 3 cm dilated but after breaking my water (oh my warmness) I was not 4 cm dilated.  HOURS PASSED.  My friend arrived to be there as a second support person.  We sat around with our photographers and my friend and cracked jokes with each other and discussed birth stories about the birth of their children.  At 2:00pm the doctor checked me.....still 4 cm dilated.  I got out of bed and started bouncing on the birthing ball.  I started doing some weird position in the bed that the other girls in the room said helped them to dilate faster.  My contractions started picking up in intensity but were still manageable in my opinion.  They were happening every 1-2 minutes.  The nurse came in to check me around 4:00pm and I was still 4 cm dilated.  Over the next 2 hours I played Yahtzee with my friend and listened to some songs on my birthing playlist.  We tried to bounce on the birthing ball again.  Finally at 6:30pm I asked for an epidural hoping that due to my contractions getting more intense that I was going to be at least 6 cm dilated.  I thought if I got the epidural it would help me dilate faster.....that's what I had been told by other moms so why not give it a try.  My contractions were still manageable pain wise....but I wanted to get the show on the road.  Every time I felt a contraction coming on I would first feel the baby backing himself up into my right rib cage too....like he was telling me he did not want to come out.  Maybe an epidural could help us both with this laboring thing.



The anesthesiologist came in around 7:00 to start my epidural.  He missed the epidural space the first time he tried and placed the catheter in my vein.  It was painful.  When he finally got it in the proper place it didn't hurt at all.  When we got all connected to the epidural the nurse checked me again....STILL 4 CM!! I couldn't believe it.  10 minutes later I started violently shaking and couldn't stop.   The nurse said it was just pregnancy hormones. But I felt like I was having a non-stop seizure.  It was the worst feeling I had ever felt.  My parents and niece arrived to the hospital around 7:30pm.  As soon as they walked into the room I was hurling over into a bed pan puking my guts out.  The nurse once again said it was part of labor.....but I felt completely fine until I got that epidural.  By 8:00pm I felt so bad that I knew there was no way I could relax enough to give birth to this baby.  I wanted him out as soon as possible and I wanted this awful feeling to go away.  Every time the nurse flipped me to my right side the baby's heart rate dropped into the 60's.  It was normal and stable when I was on my left side....but she had to keep rotating me since I got the epidural.  Finally I told her she needed to get the doctor...NOW.  When the doctor came to talk to me she agreed that at this point it did not appear I was going to dilate much more and would probably end up in an emergency c-section due to the baby's heart rate/response to the epidural the longer we waited.  She called in her counterpart and I was in the operating room by 9:10pm to have my c-section.  My husband and my friend got to be there to watch the doctors deliver our son.  My friend was an awesome photographer and videographer for us!



As the doctors were pulling out our son my husband started crying at the relief that he was finally being brought safely into the world.  As I heard his little wimpery cry for the first time I was both crying and laughing.  It was the cutest sound I had ever heard! And I could finally say that I did it....I gave birth to our son! Maybe not the way I wanted to.....but he was born alive and that was my main goal my entire pregnancy! 



Our son was born at 9:32pm on Saturday, July 8th, 2015.  We were so excited to hold him for the first time and to figure out if he looked like a Jayden or an Eli....we were ready to finally give Baby M a real name! But it wasn't long before the neonatologist asked my husband to come over to see our son and was told he would be going to the NICU and not back to our room with us.  Our son's feet were completely raw and his hands had skin just hanging from them after he was cleaned off.  They were afraid to continue cleaning him because his skin seemed to be so sensitive. 




Instead of holding and kissing our son right after he was born, we could only look at him.  As I went into recovery I sent my husband to the NICU to be with our son and to figure out what was going on with him.  During the hour that I was in recovery I continued to shake like I was having non-stop seizures.  I hated the feeling that the epidural gave me and honestly wished it was a decision that I never had made.  Our family took turns between visiting with me and visiting with my husband and the baby. While in recovery I was asked if I wanted to try to breast feed our son.  I initially said I didn't feel physically stable enough to even hold him let alone breast feed him.  However, the feeling started to ware off and I wanted so badly to hold our baby boy in my arms,  When I got wheeled into the NICU I was able to hold our baby for 10 minutes (I was the first and only one who got to hold him that night) before they took him from me and asked me to sign papers to start an umbilical IV.  While I was take to my regular mother-baby room my husband stayed in the NICU to talk to the doctor who informed him that our son may have a serious skin condition called Epidermoylosis Bullosa (EB).  WHAT??? 




Due to the effects of the anestecia and pain medications, I wasn't able to process the severity of our son's skin issues.  His hands and feet looked very painful but I didn't understand what was really going on with him.  After our family left that night Alex and I discussed what we were going to name our baby boy finally and decided on Eli Francis Monnier.  He told me he weighed 7 lbs 14 oz and was 21 inches long.  He was beautiful and I couldn't wait to wake up the next morning to see him again! 

Eli remained in the NICU at the hospital where I delivered until today.  He has now been transferred to Cincinnati Children's Hospital which is 2 hours from where we live.  His skin condition is rare and can be very severe.  The last 5 days have been a roller coaster of emotions between feeling thankful that Eli was born safely, angry that after all we did to conceive Eli that he still ended up with a life-altering and sometimes life threatening skin disease, helpless that we can't do things that parents should be doing with their child after birth such as bathing him, changing his diaper, feeding him, loving on him, cuddling with him all the time, and waking up in the middle of the night with him, depressed that all my expectations for motherhood have been stolen from me due to his condition, and incredibly humbled by all the support we have received and all the people who are following Eli's journey on my personal page and me and my husband's blog page on Facebook.



Due to so many challenges over the past week and weeks to come....there will be future posts about our NICU experience.  For now, I am going to bed so I can get up early and get back to the hospital to be with Eli.  If you are in a group where I post my blog and want to get caught up to speed on what has been going on with Eli, please visit my personal facebook page or  https://www.facebook.com/alexandlindsaysbabyquest

More updates will come within the next week on Eli's condition as we learn more about how to manage him.  He has blisters all over his body, in his mouth, and most likely throughout his digestive system causing him difficulty eating.  From what we have learned so far on the disease....we have to rethink how we are going to do everything from diapering to feeding to clothing our child.  It's going to be a long road and challenging one at that.  It's been hard to understand why this has happened after all we have already been through.  We really thought we would have the perfect birth and would have been home already with our perfectly healthy son. None of our neices and nephews will get to meet their cousin until he is home from the NICU and even then most likely wont be able to hold him:( Please pray for healing over Eli.  He is so sweet and precious....I just wish I could take this disease away from him and treat him like a normal healthy baby.




















Thursday, August 6, 2015

The Eviction Notice

Well, here we are......39 weeks today! And Baby M seems perfectly comfortable in his current home.  He has decided that he will not evacuate the premises on his own free will.  I'm quite shocked at his decision....I really thought he would have come out willingly by now.  I never imagined that I would be 39 weeks and would have to evict our baby! I never imagined that my body would have been strong enough to carry a baby this long and keep a baby as safe as it has.....I guess after losing four babies you lose a lot of confidence in your ability to be the safe haven that you're supposed to be for your growing baby.  But Baby M has sure taught me a lot about myself and has certainly restored all the confidence that I've needed to get through the last 39 weeks! 
39 weeks! 
So tomorrow is the day! Baby M is getting evicted from his current home and will be getting a new home in Mommy and Daddy's arms:) We will head to the hospital tomorrow afternoon to be checked in at 4pm (Eastern Stamdard Time).  My induction will start at 5pm with a medication called Cervidil which is inserted vaginally and is intended to dilate my cervix.  As of Monday afternoon, my cervix was still only 1 cm dilated....so we have a lot to go yet (they will check me before we start the induction to see if I have dilated any more on my own and determine how effaced I am).  The Cervidil will be in for 12 hours....so it will be removed around 5am on Saturday morning.  The only way it will come out before 5am is if I start having some pretty intense contractions which could indicate that I dilated faster than they anticipated I would.  Otherwise the plan is 5am.  The doctor who will be delivering Baby M will be arriving to the hospital at 7am.  I'm sure she will check me once she gets there to determine how much more I need to dilate.  We will start Pitocin that morning if I need an extra boost to get dilated and she will break my water if it hasn't broken on its own.  The doctor thinks Baby M will be here sometime late Saturday morning/early Saturday afternoon.  
I am super excited to get this show on the road...okay, and maybe a little nervous! My husband will obviously be by my side the whole time....and my sister plans to come to the hospital Saturday morning to be there for the birth of this miracle baby she has helped us to create:)  As an added bonus one of my best friends is coming to the hospital Saturday morning too for the extra support and to be our videographer! And best of all....we will have a photographer there to capture Baby M's entire birth story!!!! How exciting is that?!?! 

I won't be updating my blog until we are home and settled in.  So if you are following our journey through one of the groups I belong too and would like to see a picture of Baby M (who we won't be able to call Baby M anymore!) before next Tuesday....please like our personal page-https://www.facebook.com/alexandlindsaysbabyquest. I will post pictures from the hospital on that page as well as my own personal Facebook profile.

Maternity leave has been great so far. I've gotten my house cleaned and ready to bring home our son to.  I've been able to spend time with my sister and niece....we've gone to lunch, gone shopping, went swimming, and went to the county fair.  Today I had my last ultrasound which felt amazing! Baby boy was measuring around 8lbs 5 ounces and his head was still measuring 2 weeks bigger.....so lets hope it fits out of the hole it's meant to come out of!! I welcome all the positive thoughts and prayers anyone can offer for a safe delivery, healthy baby, and our hearts to be filled with love beyond words!