"I'll be right back." said the ultrasound tech as she walked out of the room to talk to my Dr.
I was 37 weeks pregnant and measuring small so they wanted to do a quick ultrasound to make sure baby was okay. I didnt think anything of it since I've always carried small.
My Dr. entered the cozy,dimly lit ultrasound room."Hey,mommy. So, there were some concerns with the ultrasound we need to discuss . I'm going to explain this the best I can and I'll be here to walk you through this,Okay?". What could possibly be wrong? I've had plenty of ultrasounds done through out my pregnancy and everythings been perfect. With my heart stuck in my throat I answered, "Uh-huh." The dr continued to explain,"Upon doing the ultrasound we have discovered there is an alarming amount of fluid on your baby's brain.So much in fact that it looks like your baby might not have any brain tissue because the fluid took up so much space.We aren't sure how ,or why this has happened.It was not present during your previous anatomy scan you had done at 22 weeks." My mind went blank. The room felt like it was closing in on me,and I tried my best to hold my broken heart together enough to respond." So my baby has no brain?" I asked with tears gliding down my face." We aren't sure how much brain tissue is missing,or if any of the missing tissue will affect your baby.Normally,when there is fluid on the brain the babys head will expand to accomadate the build up of fluid. Your baby's head is normal in size,so we feel the fluid may have replaced the brain tissue.Right now we need to get you over to the hospital where there are specialists who can better assess you and the baby.Im not leaving you .I will still deliver you if you would like." my Dr. sympathetically replied. Having her deliver this baby was very important to me,she delievered my first daughter just 1 yr ago.In that moment of extreme uncertainty it was comforting to know I'd still have her there for the birth.
I sat in a private room they put me in so that I could pull myself together and call my husband.
That was the hardest phone call I've ever had to get through. I could barely get the words "our baby is missing parts of her brain." out. Each word felt like it was wrapping itself around my vocal cords fighting from being heard.My husband rushed right over to take me to the hospital.
Upon arriving at the hospital,I felt like I was disconnected from everything and everyone around me.
This was not where I had planned to deliver our baby,and everything felt strange and unfamiliar.I checked myself in,and was brought into a triage room. I waited in that room for what felt like a lifetime ,just crying and praying,feeling lost,broken,and so scared for the little life I'd been growing inside of me.
My husband met back up with me in the ultrasound room where they had finally escorted me to. He was trying so hard to be strong for me.As the tech did a more intricate repeat of my babys ultrasound scan,my husband held my hand while we both stared blankly at the tech studying any reaction she might give while viewing our baby's results.
Later that night,
I met one of the Drs. who would evaluate the results. He was a very kind,upbeat kind of guy. He put a glimmer of hope in my heart when he explained that there was definately brain tissue there,but it was hard to tell how much ,if any was missing because of the large amount of fluid showing up in the scan.His take on it was basically that it could go very well for this baby,or very bad. But we wouldnt have any idea until she was born and they could do a direct evaluation on her
The nurse gave me a sleeping aide that night because it was very likely that I would be induced the next day,and i needed all of the energy I could get to birth this baby.
I was awoken the next morning by the head Dr. who had reviewed all of my medical documents and would inform me of what the possible causes and outcomnes would be.
To be honest,all of the information she threw at me was overwhelming,but I remember some of the potential disorders wasTrisomy 13,in which my baby could possibly be born with extra limbs and missing organs,all the way down to different forms of dandy walker malformation along with the possibility my baby could be born and have no issues at all. It was a very broad spectrum of outcomes.I chose to believe in the best and focused on that.
We decided it would be best to go ahead and induce labor that day so that we could get my daughter the help she needed,as soon as possible.Right before I was taken to the labor and delivery unit to start my induction,the Neonatal Intensive Care Dr.came to meet with me to discuss what would be done with my daughter once she was born.He didnt have a very good attitude,and pretty much said that my baby would have something wrong with her,and there was no possiblity that she would be normal.
All the hope and positive energy I had built up was demolished in that moment,and that was the impression i was left with going into my induction.
Knowing I was going to meet our baby that day was bitter sweet. I was excited to finally get to meet her,but scared of what could be wrong with her at the same time.My birth story definately reflects that.
Remember the Dr. who had such a grim outlook on my baby?
Well he was dumbfounded by the perfect thriving litte girl he just witnessed be born with no sign of any abnormality.
He came over to us and congratulated us on our " gorgeous baby." He seemed genuinly amazed and happy for us.We gave all the glory to God,and the Dr. agreed. She was our miracle.
I was 37 weeks pregnant and measuring small so they wanted to do a quick ultrasound to make sure baby was okay. I didnt think anything of it since I've always carried small.
My Dr. entered the cozy,dimly lit ultrasound room."Hey,mommy. So, there were some concerns with the ultrasound we need to discuss . I'm going to explain this the best I can and I'll be here to walk you through this,Okay?". What could possibly be wrong? I've had plenty of ultrasounds done through out my pregnancy and everythings been perfect. With my heart stuck in my throat I answered, "Uh-huh." The dr continued to explain,"Upon doing the ultrasound we have discovered there is an alarming amount of fluid on your baby's brain.So much in fact that it looks like your baby might not have any brain tissue because the fluid took up so much space.We aren't sure how ,or why this has happened.It was not present during your previous anatomy scan you had done at 22 weeks." My mind went blank. The room felt like it was closing in on me,and I tried my best to hold my broken heart together enough to respond." So my baby has no brain?" I asked with tears gliding down my face." We aren't sure how much brain tissue is missing,or if any of the missing tissue will affect your baby.Normally,when there is fluid on the brain the babys head will expand to accomadate the build up of fluid. Your baby's head is normal in size,so we feel the fluid may have replaced the brain tissue.Right now we need to get you over to the hospital where there are specialists who can better assess you and the baby.Im not leaving you .I will still deliver you if you would like." my Dr. sympathetically replied. Having her deliver this baby was very important to me,she delievered my first daughter just 1 yr ago.In that moment of extreme uncertainty it was comforting to know I'd still have her there for the birth.
I sat in a private room they put me in so that I could pull myself together and call my husband.
That was the hardest phone call I've ever had to get through. I could barely get the words "our baby is missing parts of her brain." out. Each word felt like it was wrapping itself around my vocal cords fighting from being heard.My husband rushed right over to take me to the hospital.
Upon arriving at the hospital,I felt like I was disconnected from everything and everyone around me.
This was not where I had planned to deliver our baby,and everything felt strange and unfamiliar.I checked myself in,and was brought into a triage room. I waited in that room for what felt like a lifetime ,just crying and praying,feeling lost,broken,and so scared for the little life I'd been growing inside of me.
My husband met back up with me in the ultrasound room where they had finally escorted me to. He was trying so hard to be strong for me.As the tech did a more intricate repeat of my babys ultrasound scan,my husband held my hand while we both stared blankly at the tech studying any reaction she might give while viewing our baby's results.
Later that night,
I met one of the Drs. who would evaluate the results. He was a very kind,upbeat kind of guy. He put a glimmer of hope in my heart when he explained that there was definately brain tissue there,but it was hard to tell how much ,if any was missing because of the large amount of fluid showing up in the scan.His take on it was basically that it could go very well for this baby,or very bad. But we wouldnt have any idea until she was born and they could do a direct evaluation on her
The nurse gave me a sleeping aide that night because it was very likely that I would be induced the next day,and i needed all of the energy I could get to birth this baby.
I was awoken the next morning by the head Dr. who had reviewed all of my medical documents and would inform me of what the possible causes and outcomnes would be.
To be honest,all of the information she threw at me was overwhelming,but I remember some of the potential disorders wasTrisomy 13,in which my baby could possibly be born with extra limbs and missing organs,all the way down to different forms of dandy walker malformation along with the possibility my baby could be born and have no issues at all. It was a very broad spectrum of outcomes.I chose to believe in the best and focused on that.
We decided it would be best to go ahead and induce labor that day so that we could get my daughter the help she needed,as soon as possible.Right before I was taken to the labor and delivery unit to start my induction,the Neonatal Intensive Care Dr.came to meet with me to discuss what would be done with my daughter once she was born.He didnt have a very good attitude,and pretty much said that my baby would have something wrong with her,and there was no possiblity that she would be normal.
All the hope and positive energy I had built up was demolished in that moment,and that was the impression i was left with going into my induction.
Knowing I was going to meet our baby that day was bitter sweet. I was excited to finally get to meet her,but scared of what could be wrong with her at the same time.My birth story definately reflects that.
From the moment I found out I was pregnant I knew I wanted to have an unmedicated birth. We hired a wonderful doula in preperation of this day.I breezed through my entire labor all the way up to the transition phase.I rememeber my doula and nurse encouraging me to embrace the pain,because I was close to meeting my baby girl . ...And thats when I broke. Words that would have otherwise helped a laboring mother push through,had the opposite effect on me. I was scared to meet her.I felt a heavy dread weighing on me. Why am I scared to meet this little angel?is it because I wont love her the same? I cant bear to see my baby hurt or suffer. I begged for an epidural,but by the time they fnished getting it in,it was time to push. My baby was out in 2-3 pushes. and she was perfect,all 5lbs 13 oz and 17.7 inches of her.Our precious gift from God, Jaizelle Andrea Krnyaich.
The nicu team who was assessing her had impressed looks on their faces.It was as if they couldnt believe she had nothing wrong with her. She scored perfectly on her apgar. She had great muscle tone and responded the way she should.Remember the Dr. who had such a grim outlook on my baby?
Well he was dumbfounded by the perfect thriving litte girl he just witnessed be born with no sign of any abnormality.
He came over to us and congratulated us on our " gorgeous baby." He seemed genuinly amazed and happy for us.We gave all the glory to God,and the Dr. agreed. She was our miracle.
They kept Jaizelle in the nicu because babies with her condition sometimes suffer from apnea,and they wanted to monitor her closely in case any complications occured. They also had to do a head ultrasound on her so that the nuerosurgeons could go over the results.After getting all cleaned up they wheeled me down to the nicu to nurse Jaizelle,but she was uninterested and wouldnt latch.She didnt even want to open her eyes and interact. I was worried at that point because both of my other children latched right awaand were very alert after birth.I felt like I was struggling to connect with her,and just before I put her back in her crib my husband rubbed noses with her and her little eyes popped open.I tried to nurse her again,but she still would not latch.I leaned in to kiss her and she smacked her little lips together as though she were kissing me back. It was in that moment I connected and fell in love with my daughter.She had no problem latching on after that.
During our hospital stay ,the nuerosurgeons ordered a ultrasound of jaizelles brain. Upon examination they informed us that although her brain had developed completely,she still had some parts of her corpus callosum that were smaller than usual. The corpus callosum is located at the base of your brain and is said to be responsible for coordination. So they said jaizelle may or may not be less coordinated than other children,but only time would tell.Jaizelle also has a cyst on the base of her brain that was diagnosed as a "Dandy Walker Cyst" It is responsible for the reason her corpus callosum didnt properly develop,and it is also the reason why her ventricles are enlarged.
The surgeon recommend a follow up ultrasound in 2 weeks to monitor the cyst and to make sure jazielles CSF (cerebral spinal fluid) was not getting backed up and blocked by the cyst.
So we went home with our babygirl and hoped for the best.
Everything seemed to going beautifully once we were home. We loved on our little girl and took lots of pictures..But,I started to notice her head seemed to be getting larger and she seemed to be getting irratable everytime I moved her around .:(
Her follow up ultrasound confirmed what I suspected. Her cyst grew and was blocking the flow of her csf and she need to have surgery to put a hole in tje cyst to allow the fluid to flow.
Here is a photo of her right before surgery at 28 days old
See how quickly her head changed since birth?
poor baby :(
The night before surgery I wasnt allowed to feed her after 2am.That was hard. I felt horrible when she cried to eat and I had to deny her.I felt so guilty.
We arrived at the hospital at 6 am ,the nurses gave her sweeties to try and hold her over until anesthesia took her,but she was not impressed.(sweeties is a form of sugar water they dip the babys pacifier in, its supposed to put them into euphoria.)I held it together all the way until they took her into the OR. I broke down crying,me and my hubby took a walk outside and comforted eachother.It was such a hard thing to sit and wait,knowing my brand new baby who had just recently came out of my body was now getting cut open,and her brain being operated on. A couple of hours later we were finally allowed back to see her.
She layed there so tiney in this big bed. She was so pale,and her little eyes looked lost and confused.
Her crys were weak and strained from having the tube down her throat during the surgery. She looked so pitiful.I wanted so badly to hold her and kiss her,but I wasnt allowed to pick her up yet. I tried comforting her by talking and touching her,but that only seemed to make her more upset. It were as if she was frusterated and wondering why I wouldnt hold her. My heart was so broken for her.My husband looked like someone had torn out his heart. Our poor little angel.
Once we got out of the recovery phase,we were taken up to her room in the PICU. Thats where I would be staying with her until she was ready to come home. We were told she would be there 3-7 days depending on how fast she recovered.Over the next few hours she looked more and more pale,and was acting strange. She would be laying there dazed and groggy,and then suddenly jerk and start screaming. I told the nurse something was up with her,and she told me the baby was probably just irratable and in pain. So instead of listening to my concerns and looking into them they upped her morphine.She got more sleepy,but would still randomly cry out in her sleep. Night shift came and we got a new nurses. They were great,they took extra gentle care of her,and you could definately see a difference in the amount of effort and love they put into their work. They noticed she looked pale,and had the dr come in right away to evaluate her. The dr ordered a hemoglobin blood count on her,and it turned out to be on the low side. So they monitored her and told me she may need a blood transfusion. A few hours later the nurses finally got Jaizelle comfortable and asleep and told me to try and rest because when she woke up she would need me.So I layed down and drifted off to sleep.
"Mommy,I am with respitory care,and I need you to wake up. During Jaizelles transfusion she started to seize and stopped breathing. We are in the process of intubating her."
What? Im confused...this cant be real. This cant be happening to my baby.
I quickly woke up from my slumber state,and saw the room was filled with nurses,drs,and respitory therapists,all hovering over my little girl.My mind went blank,I was in complete shock I couldnt even move.
They finally got the tube in ,and it was breathing for her. She continued to seize. Her little foot would twitch like thumper from "Bambi" and the nurse would tell the Dr. "Shes still seizing." It was so scary to watch her body involuntarity twitch and jerk. I thought back to when we first got into that room,and I told the nurse something is off about her,I think shes having seizures or something. That first nurse waved off my concerns as if I were over reacting. Although I had never seen anyone seize before the word kept coming into my mind everytime I saw her jerk back and start screaming. It turns out my motherly intuition was right.
The way the Dr explained the reasoning for her seizures was this, Our brain is like an 8track and if a piece of dust gets onto it,it will cause it to skip and get stuck in a "loop". In other words, Jaizelles brain had just been operated on,and if anything like dust or blood or air got onto her brain,it would irratate it and cause her to have seizures. The reason she stopped breathing was not from the seizures but from the ativan they gave her to stop the seizures. They immediately changed her treatment to phenobarbital to keep the seizures under control,and did an mri to see if indeed there was any blood or air on the brain.....there was.
As scary as it sounded it wasnt all that bad,her body would eventually absorb the blood and the air and her seizures would not be a lifelong issue.
Over the next few days Jaizelle got stronger and started breathing over the breathing machine,and finally after insisting over and over that they remove the tube,they did.
Once Jaizelle was off of that I was finally able to hold her. It was like giving birth and holding her for the first time all over again.
The next day we got to go home!
2 mths passed since her surgery,and her head was still growing too rapidly. MRI's showed that her ventricles were continuing to enlarge,and although the cyst fenestration was successful,her body could not keep up with the amount of fluid that was being produced.
So at 3 mths old Jaizelle had to have a ventricular shunt placed. The shunt is a rubber looking tube that runs from her right ventricle down into her abdominal cavity so that her belly can directly absorb and eliminate the excess fluid.Although we were not thrilled that our daughter once again had to have surgery,we were at peace and felt Gods presence around us.Me and her daddy tried to lighten the mood by taking a silly photo together while waiting for her to come out of surgery.
Jaizelles shunt surgery lasted 15 minutes,we got to see her within an hour of her being taken back.
She looked pale again but was not as in distress as her first surgery.
She was doing fantastic and even began nursing that night.
There were no complications this time and we were discharged the next day to go home.:)
Hopefully this will be the last surgery Jaizelle will ever need,but if its not we will get through it because God will hold us together.
Its scarey how many babies are diagnosed with this while in utero,and the parents are instructed to terminate.
My baby might have had a rough start at life but she is still a beautiful happy little angel,and if she wasnt givin the chance to be born,I would have never got to see how perfect and sweet she is.God works miracles everday,My baby is living proof.Trust Him and honor him,and he will reward you.I promise.
Going through all of this has made us cherish her and love her all the more.
