Tag: Holoprosencephaly

The Last Trimester

Maternity session with Made You Look Studio

The Team

Its wild when you think about how busy a regular third trimester can be, then you multiply that by high risk pregnancy, and you get total chaos. I’m a planner by nature, and being able to plan in between each appointment because each appointment could bring some new complication brought about a circle of hell for me (and lets be real all those who had the pleasure of encountering me) that I had yet to experience. I think the problem is that when you deal with any type of “team” collaboration can get tricky. My team consisted of my regular O.B. a Perinatologist, and a Neonatologist. To make it easy, we have the cucka doctor, the baby in the belly doctor, and the baby out of the belly doctor (you’re welcome)

At my regular 30 week appointment with the “baby in the belly” doctor we found that while all of daisy’s body was measuring normally, her head was becoming fluid filled and measured 36 weeks (6 weeks ahead). Up until now we had not had a jump like this, but we had been warned that this could be a possibility towards the end of the third trimester. We made a plan to re-check in two weeks but to start thinking about what we would do if the growth rate continued to be rapid. I had the option of induction or scheduled C-section, but lets remember although I had had a baby naturally before she was a tiny baby, so this head situation had me a little worried about the exit plan.

Two weeks went by so slowly, but I did realize how much more uncomfortable I was this pregnancy compared to the last. I was having to roll around on a yoga ball like a beached whale while at work, and lived on a heating pad at home. I had a hunch as to what I was going to hear at my next appointment. Sure enough when I was only supposed to be 32 weeks pregnant, Daisy’s head measured a little over 40 weeks. I was given the option of being induced the next day (ummm hellllluuuurrrr I hadn’t even written my sub plans yet!) We decided it would be safer for all involved to schedule a C-section. Two days later after the “Team” discussed all the sciences and two dollar words you can think of they asked me if I would like to have my baby on Monday (mind you, it was Thursday already) It was at this very point I felt all control being relinquished, I was no longer in charge of my vision of the birth plan, it was time to get over it, and plan for what we now knew was coming. Those who know me know I did not take these new orders very well, it may be a damn Pirate Ship, but I am used to commanding my own Ship at all times. I called Billy and asked him if he was busy Monday, he replied he was wide open, so I said :well lets have a baby Monday Morning” to which I was met by awkward silence. I love to take his breath away!

Preparations

I fervently hope there’s never a reason any of you need to know about these preparations, but I also hope if you have found yourself chosen by God to experience this, that these suggestions make it possible to do so. I had so many beautiful souls come out of the wood works to offer advice or personal experiences and I swear to you I took each and every one to heart. I admire all of you, who had to find your strength to be able to try to make my journey easier. I had previously heard of a company that takes donated wedding gowns and makes them into Angel Gowns for Still born and NICU babies that do not get to leave the hospital with their parents. I contacted Patti Browne of David’s Cradle in Tehachapi and she informed me she had also recently took over the ministries of Kern County Angel Gowns as well. Patti listened to my story, I asked if she could make Daisy a dress and donate the left over parts of my wedding gown to provide for even more Angel Gowns. She was not only nice enough to complete this task she personally picked up my dress and delivered it back to me by Sunday evening, praying with me both times. We decided on keepsakes we wanted made, and to have photo’s done although I previously thought there was no way I wanted those types of reminders for her Birthday every year. Once again the perfect person was placed in my life at the exact time of need. These types of occurrences happened frequently, we would find ourselves in need of a contact or service, and someone would show up or call with the exact thing we were needing. I packed a normal pregnancy bag with all the essentials. I packed preemie clothes, diapers, and an infant car seat in good faith as we were still yet to see our miracle and purpose. I didn’t sleep at all because in true last min fashion I had a huge paper due by Midnight Sunday and had to be up by 4am to wash, get dressed, and head to the hospital. Even God provides beautiful distractions.

Our Sweet Daisy Jean (peep all that hair)

March 2, 2020

We were met at the hospital by a pastor from our church who came to pray with us, yet another example of someone knowing exactly what we needed and providing that for us. The rest is meant for another day and another time after we have had time to heal and reflect. I can tell you we had a longest yet shortest days of our life that day. Some of the most got punching and heart wrenching experiences and feelings we have ever felt, and yet some of the most compassionate, beautiful moments that we will cling to for the rest of our lives. We were blessed with our time with Daisy, she taught us far more than we could ever teach her.

The Why (3)

When I was doing my own research I was looking for more than just big words, doom, and gloom. I did not find much of that. This blog is more than just a way to spread awareness or share our story. I cannot promise that none of these posts will get dark. I cannot promise that I will not use profanity or perfect grammar. I Cannot promise that this will be the cutest most well put together blog you will ever read.(I’m a special Ed teacher people, we do our best work in crayon) I CAN promise that I will be unabashedly honest in my thoughts and feelings as I continue to share. I want others going through similar situations to know it’s O.K. to not be O.K. It’s O.K. to be confused. It’s O.K. to be scared. I’ve yet to discover what the lesson is that I am supposed to be learning in this situation. I do know that every time I feel that precious baby kick its a reminding of the blessings we have. I choose to focus on those blessings, live my life, and enjoy whatever time I get with our precious baby. I pray I’m strong enough to continue to share our story of Delivering Daisy.

Emotions (2)

My husband I agreed that we needed time to process this information and how we were feeling before we attempted to tell our family about the Doctors findings. We thought it would be easier than having to tell everyone bad news, on what was supposed to be a day of fun, family, and food. WE….. WERE… SO….. F@#(%*……. WRONG! What we did not realize was how much this family was anticipating the new baby and because of this would want to talk about her. So now we were faced with conversations that reminded us our baby girl would probably not be coming home with us. We discussed perspective names (I like to tell people we are naming her Dilly so that I would now have Dilly and Dalli) I painfully pretended to be excited to discuss new nursery themes, and listened to everyone speculate about the type of big sister Dalli would be. I am proud to say I only had one mini breakdown in my closet the entire day. After the last guest left we hopelessly looked at each other in sheer exhaustion. I thought about the unknown amnio results, and hoped we wouldn’t be told that our genetics had caused this turmoil. It was in that moment my calm controlled demeanor melted away ……I was mad! It just wasn’t fair. Why was everything so difficult for our little family? Nothing ever came easy for us! Why would God choose this perfect man for me to spend the rest of my life with if our genetics were not compatible for creating life? Why was I so incomplete (faulty even) as a wife and a mother. Were we too demanding, even greedy, especially since we were given one miracle baby… why did we think we deserved two? My poor husband has had many front row seats to many meltdowns over the years, but nothing to this magnitude. He asked me if I wanted to cancel my daughters Birthday party (2 days after Thanksgiving) That was all I needed to return to business as usual. We had a party to put on! I had shit to do!

The Birthday

We realized from the way Thanksgiving went, we needed to tell our family and a few close friends in the hopes that it would make the Birthday party a little easier not expecting those awkward questions that gave me panic attacks to fake answer. It did help, but mostly we learned that telling others allowed us to activate this amazing support group of people who now understood what was happening but were also able to give us time and space to figure out our own emotions before asking questions of us. The day of my daughters birthday it rained…. it rained all damn day…. seriously people I cant make this stuff up. We were moving tables inside, deflating bounce houses, retreating on a large scale. It was a beautiful day of a crowded house, all the desserts, a million kids, and my precious toddler throwing a fit because we expected her to open her multitudes of thoughtful gifts (truly A-hole parents here). At the end of it all we were exhausted, almost zombie feeling, I know neither of us were sleeping very well. The thing about life is it does not slow down and wait for you. Not in the highest of highs or the lowest of lows. We continued on with our busy schedules and take it all one day at a time. We finally got the results of the amnio and it showed nothing out of the ordinary. This is good news if we decide to have children again, but a struggle when laying in bed at night and feeling the “why’s” creep into your thoughts.

Let me explain something very important about how we currently feel about everything we know. We are taking everything the doctors say very seriously and planning accordingly. We do not want to be in the moment of tragic events and not have discussed specific wishes we have for baby Dasiy, but that does not mean we have given up hope, we have lost our faith, or we are being negative. I see both of our testimony’s being strengthened daily because of the trial we are currently navigating. We will continue to hope, pray, and prepare for baby Daisy.

The Announcement (1)

The day we went public

As a couple, deciding to share your joy and secret with the world can be one of the most exciting, yet terrifying moments of your life. You see, we dealt with multiple miscarriages and years of infertility before being blessed with our daughter Dalli. We also had a miscarriage at 12 weeks before this pregnancy so we are always on edge with “going public” because having to tell multitudes of people that you’re no longer pregnant is a truly emotional ride. Appointment after appointment went well, possibly even normal you could say. Well, with the exception of being considered a “geriatric pregnancy” (lick yourself Kaiser…. I’m 34). So we prayed together as a family, and decided it was time to announce Dalli would no longer be an only child. Upon announcing we were met with an outpouring of love and support from everyone and things carried on they generally tend to do. It wasn’t until our second trimester that everything got turned upside down.

Second Trimester

I opted to do the genetic testing that’s offered as part of your second trimester testing, as I did with my first daughter. There was a marker that came back in the blood work, which means you get referred to see a genetic counselor and see a specialist who performs a level 2 ultrasound. Two days before Thanksgiving I go to this appointment. I would love to tell you what the genetic counselor said, but in all honesty I know these tests have a very high rate of false positives, so I really just wanted to get to the ultrasound part, where the doctor would check over the baby, tell me everything was alright, and I could proceed with my last minute Costco run with the rest of the world. Till this day I will praise the efficiency of this doctor, I did not lay there in silence for 20 mins trying to read his face, it was actually only a couple minutes until he said “I do see some things that are troubling”. I have this gift where in times of crisis, I become very business like. I sat there and listened to him explain the abnormalities he saw in the babies brain and facial features, making endless mental notes of words I wanted to research as soon as I could leave. The doctor explained and even showed me on the screen that where the babies fore brain should be divided into two parts there was no division and that this is something that develops in week 5 or 6, so there was no chance it would miraculously form as the pregnancy continues. I had so many questions in this moment; What would this mean for brain function? Quality of life? What causes this to happen? What is the prognosis for the baby? Was it my fault? He did his best to ensure me first and foremost it was not my fault. He explained if we did an amniocentesis it would show if there were any chromosomal abnormalities that would explain why this happened, which would not change our prognosis of what the ultrasound showed. We decided to do the amnio because it could tell us the likelihood of this happening again should we choose to have another baby.

The Specialist

My O.B. was informed of the findings and got us an appointment with the Perinatologist the very next day, so we did not have to wait long for answers. The rest of my day (and most of the night) was filled with my own fervent research which only led me in circles, and searching scripture for comfort. This was one of those rare times for me when science and faith become intertwined as you try to gain your own understanding. Our Perinatologist saw the same things as the other doctor but was able to give us more in depth answers (and in English not doctor speak) Our sweet baby girl (whom we had began to call Daisy) was diagnosed with Alobar Holoprosencephaly. This was something I had read about and I was fairly certain it was not good. I again went over all my questions, but thankfully got answers this time. Let me throw some science at ya for a min. Alobar Holoprosencephaly is when there is a complete failure of the brain to divide into right and left hemispheres which results in the loss of mid-line structures of the brain and face as well as fusion of the cavities of the brain, known as lateral ventricles and the third ventricle (which are normally separated). The prognosis depends on the sub-type. The Alobar Holoprosencephaly is the most severe type of the defect and the affected fetus are usually stillbirth, or die soon after birth, or during the first 6 months of life. We were given the option to terminate the pregnancy, but without even glancing towards my husband I knew neither of us wanted that. It was not our decision to make. We returned home to begin process this information, and get ready for Thanksgiving, we were after all, hosting both our large families this year and Thanksgiving was only a day away.