laurellives

[laurellives]

My Baby Doll Warrior

Recently I’ve noticed that Laurel’s movements have become different. Instead of her quick ninja-like kicks and punches; I’ve been feeling rythmic motions that last a good 30-60 seconds. 

Seizures after birth are common for HPE children, it goes along with their CNS malformation. During my last check up I decided to ask my Maternal Specialist doctor if it was possible for Laurel to have seizures in my womb. Eventhough I had formulated this idea, I didn’t expect his answer to be  “Yes.” 

I could’ve looked up the information beforehand, but I didn’t.

I left feeling shocked and absolutely heart broken for my Laurel. This has plundged me into a deep pit of depression. I can’t help but feel guilty for her condition. 

She’s already faced such adversity and fought like a little warrior. I feel so helpless, there’s noting ill be able to do to sooth these seizures. 

[laurellives]

Abortion

I have read the testimony of many parents whos child has been diagnosed with HPE. For the most part, i have read that parents will be offered/persuaded/encouraged to abort their child once they have identified HPE in a child (this is done so at around 20 weeks gestation). 

My situation was quite the contrary, I not once was offered this alternative. For starters, I would have never nor did I once consider an abortion. Laurel is mine and i am hers and I am here to allow her to live as long as she wants to live. 

I have always been extremly “pro life” but nothing shakes your beliefs to the core more than getting a grim diagnosis. I now understand why women decide to abort their children whom are expected to have poor outcomes. Laurel’s diagnosis has caused me an unexplainable amount of psychological warfare. You would think that working in the medical field would prepare you for such a thing but it doesn’t. I mean, how can you tell a mother that she has to continue carrying their child, becoming attached to them, only to lose them at birth or soon after? No one, besides the parent of a child should ever be allowed to decide what is best for their special needs child. 

Although i was never offered an abortion, the current suggestion by all my specialists has become to “make Laurel comfort care.” This means that no intervention will be done in the case that her heart stops beating or that her respiratory drive ceases. And in all honesty, im not sure if this is better than being offered an abortion. On a medical standpoint, I agree. On a maternal standpoint, I want to be selfish and have her live until she physically can’t anymore. I HATE that I have to make these calls, no parent should ever have to decide how far to intervene.  

Our talk with pallitive care helped my husband and I, with a heavy heart, determine that we were not going to make her comfort care but we were going to limit the amount of intervention. This means that our goal for Laurel Grace is to not see her suffer. How shitty is that?! (excuse my languge - but seriously) How shitty is it that we have to fall in love with those daring little eyes before just letting her go. 

I believe there is no crueler fate than to wait 9 moths for your child, only to lose them. God be with all the HPE mommas that there has been, are, and will be. 

[laurellives]

Mother’s Day

What a bitter-sweet Mother’s day this has been. I love loving on my two mommas. My mother and mother-in-law are seriously heaven sent angels. They have provided us with so much support and strength, I don’t know how I’d ever live without them. 

What shreds my heart the most about Laurel’s condition is the sadness it has brought my mothers. My mother-in-law is very much like my husband. They tend to internalize their emotions but their eyes never lie. My mother communicates a bit more but she has also been very guarded about the topics on Laurel that she would like to discuss. It just ABSOLUTELY breaks my heart to see how much their heart is broken. 

It’s as if we are all scared to love- while already being far too in love. We love you Laurel, we can’t help it. 

I have so many strong ladies surrounding me. My mommas, sisters,  grandma-in-law, cousins and aunties are whom many times keep me going. Blessings on blessings. 

But I just couldn’t help cry and cry today.  My mind constantly circled around the very real possibility of it being the only Mother’s Day I get to have my Laurel. 

[laurellives]

ENT visit

(some day i’ll update this with all of the information I’ve recieved along the way)

[laurellives]

Graveyard Visit

I decided to visit a graveyard with my mother. I know it might seem a bit premature since we don’t know exactly what will happen after Laurel is born. Frankly, I would've never guessed that I’d have to purchase a plot at the age of 25 for my own child. I went to inquire about prices and location. Plots start at $2,000 and the price changes from there after you consider casket, headstone  etc. They have a children’s garden with a statue of a little cowboy. As we walked down the graveyard we acknowledged all the little ones who did’t make it. My mom and I counted how many days these angels were on earth. “One day”, “two days”, “fifteen days”, *mom sniffles* six months.”  

[laurellives]

The Itinerary

We haven’t had an itinerary since our wedding almost 1.5 years ago. That day was such a magical day- full of love, laugher and cold cold weather!  Although, nothing can match the day I found out I was pregnant. I can still feel the way my hairs stood on my arms and the way my knees buckled from excitement. I remember quickly getting a surprise box ready for my husband because I could not wait to tell him the news!

 Today’s itinerary was nothing like the one for our wedding day. Today we met with the very special doctors at the Children’s Hospital of San Antonio.

It went as follows:

Dr. W – Maternal and Fetal Care

Mrs. K- Genetics Counselor

Dr. S- Pediatric Neurology

Dr. T – OB Hospitalist

Dr. B – Palliative Care/ Neonatologist

NICU & Labor and Delivery visitation

 This post will be a long one, but I feel the need to document it in hopes that it will someday help someone else.

We started our day in the Maternal and Fetal Care office with Dr. W. Here they conducted a sonogram. Our sonographer was amazing!! I loved how she walked us through the whole sonogram- naming what she was measuring at each point. Laurel (my husband & I recently decided on this name- as you may have realized due to the name of the blog) measured a bit small for just about everything. I’m currently 28w 5d and she measured at about 26 weeks for head circumference, leg length and arm length. Only her belly measured right at 28 weeks. She currently weights 2 lbs. and seems to have no other conditions other than holoprosencephaly. Little miss wiggles (the fist sonographer named her this) held up to her nickname by boxing the sonographer during every chance she got. A 3D ultrasound was attempted but a lot of umbilical cord was coiled right in front of her face. While measuring the amniotic fluid around her head she so sweetly waved at us. It was so hard to keep it together at that point. It was like she was greeting her mom and dad for the first time. I just wanted to get a hold of that little hand and kiss it all day. The sonographer was able to capture a picture of it and I will upload it as soon as I figure out how.

At the end of the sonogram Dr. W came in to assess all the findings and do a quick sono himself.

Meeting Dr. W really set the tone for the day. Having him there was such a sweet blessing. He stated that Laurel’s brain displayed a “classical holoprosencephaly look.” He then went on to apologize for what we were living through and he acknowledged how specifically hard this is since she is our first child. Dr. W then disclosed that his third child was born with several conditions; they made the devastating decision to let him go at 8 months. Talking to him was so special because he reminded me how much I should love this pregnancy.

Yes I know that sounds silly, but its so easy to get caught in the devastation. He said something along the lines like “That’s your baby, be happy about your baby and enjoy all her movements.” He reassured us by informing us that the hospital is full of caring doctors who are there to help Laurel and other children like her. This conversation with Dr. W helped me have the confidence and peace of mind to continue throughout the day.  

Mrs. K our genetic counselor met with us briefly to get some family history and to talk about Laurel’s condition some more. Laurel’s condition is so rare that Mrs. K didn’t even have it listed in her genetic anomalies book. She asked us if we decided to do the amniocentesis and we told her that we were declining it. Since we recently found out that the same information can be obtained using the blood from the umbilical cord we decided to do that instead. There is no risk, and the results will be produced within 7 days. They will be looking both at our chromosomes and genes.

 Dr. S, the pediatric surgeon said that dreaded phrase- “incompatible with life.” If my heart could break any further, it would.  She explained to us that her case is so severe that all we can do is try our best to care for her. Whether that be placing a feeding tube to feed her to just clutching her if she has a seizure. Seizures are likely in holoprosencephaly due to the shape and inability of the brain to process the electrical signals.  She was able to show us pictures of her MRI scan, which I was really hoping I’d get to see. (I’ll upload some MRI images once I get a hold of them).  The shape of her brain is devastatingly not even close to the shape it should be. She revealed that she cares for many kids with holoprosencephaly and that in the less severe cases “you can’t even tell that they have it. But that is not your case.” I’m glad that there’s hope for other little ones whom might have lobar or even semi-lobar holoprosencephaly.

Dr. T was a kind man, he came in and greeted us like he knew us for years. He then proceeded to apologize for what we are living through. He or one of his colleagues will most likely deliver Laurel. I’m really hoping it’s him since we’ve already met him. He told us to expect a normal delivery. Well, as ‘normal’ as it can be. He also gave me recommendations for a new OB. As if this pregnancy wasn’t stressful enough, I am now finding myself trying to find a new OB because my current one is closing her practice. Dr. T ended our meeting by offering a couple of names.

 Dr. B is one of the neonatologist at the Children’s Hospital but her work also includes palliative care.  For those who don’t know, palliative care is geared towards helping relieve some stress that comes along with serious illnesses. This was our longest and hardest meeting. We had to talk about all the ‘what if’s’ and she disclosed all of the decisions we will have to make. She described what the NICU stay would be like and the type of care she would receive. She sent us home with a checklist. A checklist that no parent should ever receive. This checklist starts off nice and easy: our names, Laurel’s condition, if we would like to hold her ASAP, skin to skin contact, would we like pictures, blankets to be provided from the hospital, etc. Then it gets to the hard part: would we like her to receive oxygen if needed, place her on a vent if needed, provide pain meds for her, allow her to go to heaven if her heart rate were to decline before pushing, or if we would like to have chest compressions and medication administered in order to resuscitate her in case that she needs it. 

Dr. B stated that she tries not to persuade parents in their decision making but that she felt the need to inform us that she advised against chest compressions if they were needed. Her reasoning was that “chest compressions are utilized to save someone with a condition that we know we will be able to treat. In your case it would be Laurel telling you that she wants to go. Since there is nothing we can do to fix her condition, it is more favorable to not provide compressions.”

 We decided to fill out that form tonight after dinner. It’s the most devastating questionnaire that I’ve ever filled out.  We had almost completed the form when we arrived at the last question, it read ���Tell us what this baby means to you.” After reading this I became a slobbering crying mess on my husbands chest. I mean, there are just never going to be enough words to depict how much Laurel means to my husband and I.

 Laurel, I’ll eat you up I love you so.

[laurellives]

The Emotions Come In Waves

These last few days have been particularly rough. I’m currently getting my Master’s of Science in Respiratory Care and we are doing some preparation for our boards. As I headed back to the classroom I was faced with constantly being reminded that my baby will not grow in age alongside me. You see, there’s three other women in my program carrying their own little bundles and I couldn’t help but imagine how sweet their life will be.

 On the first day back into the classroom there were periods were I could hardly focus on the lecture because I was too busy self-pitying. I felt my girl kick various times and each time it was a sour reminder of what will never be.

I hate that! I hate thinking negatively about the road God has lead us through. Even if I do wish I could kiss her sweet sweet cheeks forever.

  Tonight I discovered that an acquaintance lost their baby girl two years ago. It was their first baby too. It was a bittersweet realization. While I wish no human would ever have to experience what I am living, I am glad that I’m not the only one. I am glad to see people have survived these bleak moments in life. It gives me hope. Hope that ill be strong for delivery, hope that ill accept Gods will after Laurel’s birth, and hope that ill be able to live with a shattered heart.  

[laurellives]

A Week Without Prayer

It’s been a week since the MRI results. Like I mentioned, I was expecting the results but I’m still trying to deal with the emotions. Yesterday my husband rolled into bed a few minutes after I had. He asked, “Did you pray already honey?” I replied, “Yea, go ahead and pray yourself.” The truth is that I was lying, I didn’t pray, in fact I haven’t prayed for a whole week. Its not because I’m mad at God or because I don’t have hope left. My mind just hasn’t been able to steady itself enough to focus on anything.

I have been missing my conversations with God. I’m sure I’ll get back to it but not now.

[laurellives]

MRI Results

Alobar. Alobar holoprosencephaly. Out of the four levels of severity, my girl happens to have the most severe. I can’t lie, I was expecting it. Yet it still didn’t make it any less heart shattering. In this short consult my doctor explained that it was possible for her to lose her heartbeat before delivery. He went on to explain that if she lived to delivery she “won’t live long.” I knew this, I had done some research. 6 months, 6 months or less is what she is expected to live.

These results were given exactly a month after her 20 week sono. It’s the most challenging month of my life yet. The sadness is in full force and it seems to never end. I cling to my family in these times they have uplifted me, I can’t ever thank them enough.

[laurellives]

Revelations

Hello all, Welcome to my blog. I decided to start this blog in order to help me cope but mainly in hopes that this blog will help future moms, dads, family or friends of someone experiencing my same situation. 

Our storm began on March 10, 2017. What was supposed to be a simple 20-week check up and gender reveal turned into possibly the saddest, most traumatic day of my life. After two sonograms at two different locations, a doctor I had just met, revealed that our little girl had holoprosencephaly. As I laid there blankly staring at the wall he explained that her prognosis was 'not good' which is kinder than the common 'incompatible with life' phrase most parents hear. In a nutshell, her brain failed to properly divide within the 4-8th week of gestation. He disclosed that there were different levels of severity but that we wouldn't know more unless I got an MRI or amniocentesis. 

Here's a bit of information I have gathered since her diagnosis: 

It affects about 1 in 10,000 live births. 'Technically' I should have miscarried early on (but she has been my little fighter from day one). Only 3% of babies diagnosed with HPE (this is the abbreviation of her diagnosis)  survive to delivery and 1% of those die within 6 months. 

I'm a first time mother and I believe there is no other way to crush a woman’s soul so deeply as this diagnosis does. I remember thinking various times "God, why would you allow me to become pregnant, suffer through labor only to take my little love from my arms?!" I'm human, I’m fallible. There was nothing that could console me following the weeks after this revelation.  I woke up crying, I went to sleep crying, I trembled in my husband’s arms every night and he so sweetly tried to console me.

Tighter hugs are given; softer words are spoken in my home. Although it feels that this heartache will never end I'm trying to appreciate the process for my girl.