After Being Blindsided, One Year Later

Baking Baby Gray - 20 weeks
Baking Baby Gray – 20 weeks

It feels like yesterday that I went to that ultrasound appointment and my pregnancy was shattered by the news that something was wrong with my baby’s brain.  At the time, I couldn’t imagine my life as it is now…Lincoln is 7 months old, smiling, and hitting all of his milestones. I don’t think I could have gotten through that turbulent time without the support of my husband, my family, and my friends.  Even strangers were praying for the safe delivery of my long-awaited baby.

My Baby Shower
My Baby Shower

At my baby shower, I sat center in the living room, smiling and opening up gifts and saying everything I was supposed to. “Ohhh how nice. Wow, look at this.  Oh, how lovely.”  But by the last gift, after holding up tiny onesies and handmade baby blankets, my emotions overcame me and I just sat there, crying in front of everyone. I couldn’t hide the fact that I was so scared and anxious. I loved my baby so much, and at the same time, I felt so afraid to love him and then loose him.

After delivery, Lincoln had an MRI that showed that his brain bleed had been confined to his cerebellum.  75% of his cerebellum had been reabsorbed from the bleed as a consequence.  We left the hospital not knowing what any of that meant, or what affects he might show. I now know that the luckiest thing that happened to us was that the bleed only affected this one part of his brain, which is mainly responsible for coordination and movement.  If the bleed had affected any other area, his quality of life would be much different.

We still don’t have answers as to why this happened to him.  I don’t know if it will happen again.  Every single day since that 20 week ultrasound appointment, I’ve talked to him and told him to “always find his way back to his mommy.”  I always thought that if this were to happen to him again, later in his life, and if he was ever incapacitated I could say these words and maybe he would hear them and come back to me.  Even now, now that things look so much brighter than they did when I was 5 months pregnant, I say these words to him and I pray that he never leaves me.

Lincoln Lopez Gray - 8 weeks old
Lincoln Lopez Gray – 8 weeks old

Being a labor and delivery nurse, I watch babies be born and sometimes the parents know in advance that their baby will have a problem or disability.  I think, as nurses, we need to remember that these families go home and struggle every day to understand and accept the cards they’ve been given.  I mean, what else is there to do? You just move forward, go on, continue. But no one said this had to be easy, no one said this had to be fair, and no one said you will one day get answers.  As time goes on, I realize how fortunate I am that Lincoln escaped a worse fate.  I have so much empathy for parents who were dealt a different hand.  And as a labor and delivery nurse, I think we need to remember all of the emotions that our patients are facing when they are confronted with taking care of a sick or disabled child.

For anyone out there that had to deal with unexpected news, for those of you that couldn’t continue your pregnancy and for those of you who could, I think about you when I look at my son and I hope that you find peace with whatever situation you were given.  I hope you are surrounded by supportive family and friends.  And even though time goes on, and people move forward, I know that a part of you still mourns for the loss of the normalcy you expected to have.  Even though Lincoln is thriving and happy, I still grieve for what happened to him.  I still don’t understand why it had to happen to him, and I still wish I had answers. But for now, I’m just so happy that he is here and that he is doing so well.  As time goes on, I know my fear that something else will happen to him will slowly fade away.  And for now, I will do the only thing I can do…love him and cherish every moment I have with him.

Lincoln - 6 months old
Lincoln – 6 months old

Pregnant and Blindsided

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24 thoughts on “After Being Blindsided, One Year Later

  • April 15, 2014 at 12:39 am
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    What a wonderful story

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  • April 15, 2014 at 3:40 am
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    It is a very different feeling being a mother to a boy <3 I have so much more compassion for my mother-in-law! :)

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  • May 21, 2014 at 1:03 am
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    I too am a labor nurse and was blindsided. Only my unexpected came after a stat c section, with general anesthesia; I found out my son had Down syndrome. Your words are so true, we mourn for what normalcy we expected. Time will move on and it will get easier, this I know. I believe my son was sent to me as blessing, I can learn to be a better person because of him, a better nurse as well. Thank you for sharing your story, you put in to words what I feel!

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    • May 21, 2014 at 2:12 am
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      Your comment made me teary. There’s so much I wish I could say to you. Just know that although I don’t understand exactly what you’re going through, I do understand some of your feelings. I’m so glad he is a blessing to you. xxx <3

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      • December 30, 2014 at 5:48 am
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        My son, Alex, was not expected to live after premature vaginal birth following a placental abruption in a blizzard . He will be 26 years old in March. I am so glad he lived. So is his older brother and 8 year old sister. His life hasn’t always been along the expected path. I’ve had great terror as well as great joy from being his mom.–But it is so worth it. I hope Lincoln has a smoother path than Alex, but however his life goes, I’m sure he will bring you great joy.
        Laura B

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  • August 7, 2014 at 12:18 am
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    You express your heart in such a beautiful, thoughtful way. I know your blog has offered a blessing to many mothers. Lincoln is adorable!

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    • August 7, 2014 at 12:50 am
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      Thank you!! I could just eat him up! Maybe boys are just different…I just want to keep him with me forever

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  • August 7, 2014 at 1:20 am
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    I love your blog! Lincoln is adorable. God bless you!

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  • October 10, 2014 at 12:14 am
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    My son was found with a two vessel cord. One of those things that could have been something or nothing. The extra monitoring I got did nothing to ease my fears, and ended up missing that he was growth restricted. We know so little about what goes on in the womb, despite all our technology! Those moments where they checked him for abnormalities from the cord after birth were the most terrifying of my life, followed by the pure joy that he was fine. Love to you and Lincoln, and to those families without our happy ending.

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  • October 22, 2014 at 2:31 am
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    I am overjoyed to hear that your sweet little one is doing so well. There is nothing so terrifying and rewarding in life as being a mother. Thank you for sharing your story and the work you do.

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  • October 22, 2014 at 4:38 am
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    i was 4 months pregnant with my 3rd when the ultrasound showed water on the brain. It was the most severe case my OBG had seen. I didn’t really have an option, because the brain was filling with fluid at a rate that would have made a vaginal delivery impossible by the 7th month, and there was in infection. the doctor said the baby would not have had the reflex to take his first breath. he looked so perfect, i couldn’t believe it. but i was sick, and the baby was sick, and so i ended the pregnancy 2 days later. i went to the drug store to buy thick pads for after the procedure, and a woman asked me when my due date was. i couldn’t speak, and just looked back at her. she said, “you look like you’re due any minute”. i could only nod. every time i saw a new baby i felt overwhelming grief. for years after i would see a boy that would be the age my son would have been and think about him. wonder who he would have been, what he would have looked like. i had another baby a year later. a girl. she dates a boy that woud have been almost exactly the same age. i find myself wondering if my son would have dressed like him, liked the same things, worn his hair that way. i still feel sad when the “wondering” stops, and i remember that i’ll never know. its different after you lose a child. you feel more afraid.

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    • October 22, 2014 at 10:32 am
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      That made me cry. I know how afraid you must have been, and the devastation. I work at a high risk hospital, and I always say I could never be an MFM nurse, a nurse who takes care of these patients, because I would be an absolute mess. I’m sorry that you had that experience. I wish no one had you go through something like that. <3

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  • October 22, 2014 at 8:00 pm
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    I was a pediatric nurse at children’s hospital. I worked in a unit with children born with heart defects and other anomalies. However, soon after I left that job I married and had 2 children 2 years apart. The first born with mild CP – right sided weakness and the second born with Paroxysmal Atrial Tachycardia. They are 17-boy and 16- girl now. Blind- sided describes the whole experience. But in a nutshell they are amazing teenagers. They have exceeded my expectations academically, spiritually and physically. They both play Varsity Basketball and have often out of nowhere tell me how happy they are and how they have good memories of their younger years. All the worries of reaching developmental milestones, coordinating OT, PT. Speech etc., seem far in the distance and undetected by them. God has blessed you with his healing power and restored your wonderful boy. Thanks for sharing your story and perspective

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  • October 29, 2014 at 12:18 am
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    Been there. It does put a new perspective on things. Many years as a MCH /High risk antepartumem nurse. Pregnancy #1, 31 weeks membranes ruptured, Amanda was born 12 hours later, now in her first year of med school. Preg # 3 22 weeks, cardiac tumors and possible genetic condition called tuberous sclerosis. Very long stressful pregnancy. Son does have the condition. Almost 20 years later- seizures, multiple surgeries, severe behavior issues, autism, developmental delays. Puts a whole new perspective on life.

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  • November 7, 2014 at 10:59 am
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    My son was born with Neonatal Hemochromatosis/Gestational Alloimmune Liver Disease. He was in liver failure because my antibodies attacked his liver in-utero. I was devastated. I thought we were going to lose him. He was transferred from Temple to TCH, and the hepatology team would tell me everyday that they didn’t know how he was still alive. (Not a very encouraging thing to hear). All I know is we survived our experience in room A12. We had some fantastic nurses (I know because I was a NICU nurse too). That boy people said wouldn’t make it without a liver transplant is still alive, he is thriving! He just turned 3 in August. I will never again go through a pregnancy thinking everything is fine, because there’s an 80% chance it will happen again and that it will be worse (I can’t imagine what worse would look like…3 months in the NICU wonder if if your baby will live is pretty terrible). They will have to give me weekly IVIG treatment until I deliver, and I have some online friends who have been through this same situation and they have healthy babies! It is possible!

    All of this to tell you I understood some of what you were feeling in this follow up and in your original blindsided post. I just didn’t find out until my son was born. Hugs to you mama, you’re doing great work! :) I’m so glad your cute little guy is thriving!

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  • December 12, 2014 at 7:19 am
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    This is so true, shocking and devastating to anyone who has had to deal with a baby diagnosed in utero with problems. My first delivery was a c/s for double footling breech. Her baby sister was diagnosed with IUGR and a chromosome dislocation on number 13. This is the NURSE CURSE–I am a high risk L&D RNC. The birth, an unexpected VBAC at 38 weeks, I arrived at my Labor and Delivery unit complete and ready to push. I was given Terb during pushing (not a good sign). Immediately after birth she was unable to breast feed so I pumped for over a year. She was diagnosed with failure to thrive, (I thought CPS was going to investigate me !), severe low muscle tone and possible celiac disease. For 4 long long years I took her for evaluations with Geneticists, Pyschiatrists, Gastroenterologists, Cardiologists, Neurologists, Developmental Pediatricians and numerous other physicians. I was terrified, she wouldn’t eat, couldn’t hold a bottle, couldn’t sit up without leaning forward on her hands and had out bursts/meltdowns unexpectedly as well as completely shutting out the rest of the world, isolating herself. At 4 1/2 yrs old I took her to UCLA where she was diagnosed with Aspergers Syndrome. I was thrilled, now that I knew what was wrong I could fix it. We spent years in OT,PT, psychotherapy, special education and social skills education. Her father thought I was crazy and said their was nothing wrong with our little girl. I am now remarried to a wonderful man who loves both my daughters. There is nothing more frightening than being a MCH nurse knowing your baby has problems and no one can tell you what the problem is. She is now 25 years old going into Veterinary medicine. We’ve come a long way. I did a lot of praying. I wish every other mother the same blessing and fortitude in their personal trials. God bless our babies for they are gifts to us. KK

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    • December 12, 2014 at 12:54 pm
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      My next article is actually entitled the nurse curse lol it always happens to us! I’m so glad you fought for your daughter!!

      Reply

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