I just want to say that I cried during Ben's story too... what an amazing and difficult journey. That just proves your family's strength! Congratulations on your new pregnancy and all the milestones your family has surpassed in the last couple of years! I wish you the best!
*Amanda (23)
Jason Michael Jr
Born Jan 31, 2011
8lbs 7oz and 20.5 in
STACYLD
Posts: 53
6/14/10 2:44 A
wow! congratulations!! I fully commend you on being so upfront and honest with Bens story..... It takes alot to be truly honest about how you felt in such heartwrenching circumstances. It is fantastic to hear he is doing so well, and good luck with your 3rd bubba!!
PARINNE
Posts: 4981
5/4/10 4:53 P
That's wonderful news! Congratulations on your pregnancy!
~Nancy~
#1 Nathan due 6/16/07, born 6/3/07
#2 Gracelyn due 7/23/09, born 7/16/09
Picture is Nate (3) and Gracie (1).
BECCA_BABY
Posts: 8742
4/22/10 8:57 A
Thought it was time to post another little update here...
Our Benjamin is almost 3-years-old now and doing fabulous. :) He is developing completely normally and by all appearances is a healthy, happy little boy. Nobody would guess he has a care in the world. We know differently, of course, and have to remind ourselves that he has several chronic issues that need to be monitored on a regular basis...he just looks so good it would be easy to forget. What a blessing that is!
He takes medication nightly to assist his digestion. He receives speech therapy once a week and physical therapy once a month. Both therapists say he is now exactly where he should be, but we keep going just because - what can it hurt? :)
We have had over a year off from any surgeries or invasive tests...just a few x-rays, blood draws and ultrasounds which are no big deal. It has been a much needed break from medical drama.
We have a big one coming up, though. In mid-May he will go back to the operating room for an exploratory procedure and then have several tests done to thoroughly evaluate his kidneys and urinary system. It's like we've been on a kidney roller coaster from the very beginning - it started out with the neonatologist seeing a single umbilical artery and telling us he would probably be missing a kidney or worse, then a NICU pediatrician telling us his kidneys are perfect, then the nephrologist saying his kidneys are swollen with hydronephrosis, then the swelling going away over time, once again we were told his kidneys were fine, then he had some abnormal blood labs, we were told he has mild kidney failure for an unknown reason...ugh! Well, we are now taking him to a top rated hospital to see a very experienced urologist - someone with unique experience with his overall condition - and hopefully this will give us a clear picture about what's going on. We are nervous about it all, of course, but mostly worrying about how we'll get our now-toddler through this experience.
Ben's baby sister, Olivia, just turned 1-year-old and she is great! It's been so fun seeing Ben develop a relationship with her and become a wonderful big brother. They play together so nicely and it's a joy to watch.
In other news, we are now expecting our THIRD child! Are we crazy or what? Hahahaha. :) I have a new OB this time and it's been interesting going though our son's medical history and such with a new person. After going through all of his birth defects and issues the first time the OB gently asked, "And is he still living?"
My answer -
He's living the life!
:)
"Nobody puts Baby in a corner."
** eyeonthebaby.blogspot.com **
RACHAEL82
Posts: 663
9/4/08 5:11 P
Wow...just wow.
My heart is overflowing for you right now. Reading your story and hte updates. What a joy to hear that he is doing so awesome now after his bumpy start. He is a beautiful boy - and soon to be a big bro!
Congratulations on your pregnancy - what a journey you guys have been on. There is a quote that i love and is like the motto at my church...."the best is yet to come" ...wishing you a h&h 9 months!
~Rachael~
Married March of 2006.
Elaina Claire - 01/17/07 6lbs12oz and 20"
Ethan Christopher - 04/04/08
7lbs10oz and 19"
BECCA_BABY
Posts: 8742
9/3/08 6:46 P
Thought I ought to share another update here. Ben is doing awesome!
He started walking...yes WALKING...in June and has been on the go ever since.
His last kidney evaluation showed no problems at all! YAY!!! Big, huge relief that we can now cross renal failure off our list.
Ben had a test for a fatal condition called Fanconi Anemia and it came back negative. Phew!
Our whole family has finally settled down into a routine of near-normalcy and boy is it nice. Oh, and I'm pregnant again!
Thanks everyone for the nice thoughts and prayers. How far we've come!
"Nobody puts Baby in a corner."
** eyeonthebaby.blogspot.com **
KMCDORMA
Posts: 777
6/4/08 11:48 A
what an amazing story. i am so sorry that you had to go through that. thank you for sharing. God bless your family!
SKAINATSKY
Posts: 7173
4/29/08 12:28 P
Little Ben is in our prayers! I will pray for his complete recovery!!!!
~Svetlana~
I gave away so many kisses already and have millions more to give away!
August 18, 2006
March 1, 2009
YOLANE21
Posts: 60
1/27/08 2:20 P
You are Amazing. And there i thought i had a scary birth. I admire you, and i almost started crying when i read your story. Your baby boy is adorable. and you and your baby will be in my thoughts and prayers. Just believe in God and all will be well. He will take care of your son. and he can and will fix everything. you just have to believe. He saved my baby and he will save yours too. he is cute and amazing and so are you and your husband. Hope he is doing well?
Bradley James Johnson 07/01/2007
MY_DIAH
Posts: 16825
1/21/08 12:14 P
What an amazing lil guy. Thank you for sharing your story so honestly.
"A newborn baby has only three demands. They are warmth in the arms of its mother, food from her breasts, and security in the knowledge of her presence. Breastfeeding satisfies all three." -- Grantly Dick-Read, author of Childbirth Without Fear
MOM2-2KIDS
Posts: 7972
1/21/08 11:37 A
That is a amazing story and i am so glad that he is doing so well!! I knwo a lady whos son had a similar problem but seems to be doing well after all the surgeys and such
BECCA_BABY
Posts: 8742
1/19/08 4:51 P
He pulled himself up to stand today!!!!!
Nearly 8-months after a doctor told us he may never walk, he is one step closer to walking. I am overjoyed.
He had his colostomy closed in early December and has been doing fine since then. We love not having to deal with the colostomy bags any more and are having such fun just being "normal" finally.
Thank you to anyone who has said prayers for my son. They have WORKED!
"Nobody puts Baby in a corner."
** eyeonthebaby.blogspot.com **
BECCA_BABY
Posts: 8742
11/16/07 2:19 P
double post
Edited by: BECCA_BABY at: 11/9/2008 (21:14)
"Nobody puts Baby in a corner."
** eyeonthebaby.blogspot.com **
MIRACLE6
Posts: 342
11/15/07 8:34 P
i so admire your strength. god bless you
THANK GOD FOR MIRACLES
www.a.testimony.webs.com
MOMMYDIMPLES BabyPoints:11279
Posts: 2273
11/15/07 12:53 A
After all he's been through and Benjamin is still smiling that beautiful smile! Sounds like things are going well. I pray that his next surgery turns out just as well.
~~~~ Magda ~~~~
* 5/16/00 Jason Joseph
* 5/26/06 Krystal Brianna
ROGR117
Posts: 2438
11/12/07 10:46 A
Awesome!!
Roseanne, aka "Ro"
DS#1: Griffen almost a new years baby!! Athlete extarordinaire
DS#2: Rowan he'll be our hollywood star!
DS#3: Maddox a little late in life at 41, but loved lots all the same. Our little guy, weighing in at only 5lb 8oz at
ROGR117
Posts: 2438
11/9/07 9:14 A
How is it going? I've been thinking about you a lot!
Roseanne, aka "Ro"
DS#1: Griffen almost a new years baby!! Athlete extarordinaire
DS#2: Rowan he'll be our hollywood star!
DS#3: Maddox a little late in life at 41, but loved lots all the same. Our little guy, weighing in at only 5lb 8oz at
USPLUSONE
Posts: 2728
9/29/07 8:04 P
Wow... I think you told your story with such detail and everything was VERY well said! I'm thankful you shared because any one of us could go through what you did and knowing we aren't alone is a powerful thing.
GOD bless you, your wonderful husband and your precious baby! I'm so happy that he survived and I think your feelings through the whole ordeal were very courageous. I truly wish you ALL the best!
ABBIGAILS_MAMA
Posts: 1544
9/27/07 10:34 P
Wow! I'm so glad he's doing better, and I hope he grows up happy and healthy.
Have to admit I'm a crier too. I read your story at work and had to run to the bathroom in the middle because my eyes were tearing up so much. Thank you for sharing your story with us.
~Kat~
Zacary Alexander joined the world on June 2 2008
When you really want something, the whole universe conspires to help you achieve it.
CALEEMONIQUE
Posts: 2685
9/19/07 9:47 P
Thank you for sharing your story with us, I almost started to cry. You went through a lot and did awesome, I don't even know you and yet I am so proud of you!!! Your son is BEAUTIFUL!!!
Believe that everything happens for a reason.
If you get a chance, take it.
If it changes your life, let it.
Nobody said it would be easy; they just promised it'd be worth it.
LUNARTURN
Posts: 2854
9/16/07 8:03 A
I really hope that little Benjamin is doing alright. Thank you for sharing your story. You and your family are in my thoughts and prayers. You are one AMAZING mother...
Edited by: LUNARTURN at: 9/16/2007 (08:04)
~ Yana ~
Danielle was due on 27 October 2007, but made the grand entrance on 26th of September at 8:05 am (35th week of pregnancy), weighting just 1 kg and 800 grams. She stayed in the hospital for almost 2 weeks and was released once she reached 2 kg and was able to maintain the body temperature by herself.
Baby #2 is due on 24 May 2011. It's another GIRL! :)
PHCSHERRY
Posts: 5382
9/15/07 6:38 P
Your story touched my heart. It's something no mother (or father) needs to endure. I would just like to tell you that my neighbor has a daughter that the very thing happened to. She is now a very ranbuctious 8 year old. Our children are fighters and resilient!! Go Ben Go!!
Mom to:
Tylor Devin Feb 21 1989
Eric David stillborn Feb 10th 2006
Angel baby M/C 12-13-06 @ 8 Weeks
Blighted Ovum-July 27, 2009
Jesse Aaron 6 lb 3oz. 18.5 inches 11-13-07
BLESSEDAKMOM
Posts: 753
9/13/07 4:50 P
thank you for sharing your story. It brought tears to my eyes! you and your husband are truly remarkable people. And little Benjamin is blessed to have you as parents!!!
I am the proud Mom to:
Nolan 5/27/06
Faith 11/14/07
Baby Girl Due 9/1/10
MOMMABRE
Posts: 3467
9/5/07 1:41 P
your son is beautiful!!! looks like he is doing well. your family will be in my thought and prayers
Jorden Lucas Lund Henderson
March 13, 2007
7lbs 9oz
19 inches long
Molly Eveyn Marie Henderson
June 6, 2008
7lbs 5oz
20.5 inches long
NSALVADORE
Posts: 5378
9/5/07 8:24 A
WOW! First off your son is absolutely beautiful! I can't even fathom what that was like! You must be a very strong woman to push through that ordeal! You and your son are in my thoughts and prayers!!
My name is Nicci, I'm the proud
mommy of two boys!!
My babypage is set to private, if I haven't added you yet just ask!!!
NAEB213
Posts: 3900
9/4/07 11:37 A
what an incredible story. thank you for sharing.
*Erica*
Emma Mae 8/27/06 6:24 AM
I love Mary Kay! See why at www.marykay.com/ebaltzersen
BECCA_BABY
Posts: 8742
9/4/07 9:07 A
***************************** ***************************** ***************************** *~* READ THIS FIRST *~* ***************************** ***************************** *****************************
Please, before you read my birth story I want you to read this first...
If you didn't already gather from the title, my birth story isn't a smooth, normal, uncomplicated delivery. If you're prone to internalizing things, maybe you should skip it If you're pregnant and are feeling a little hormonal, maybe you should skip it! If you're wondering if you shouldn't be reading it, skip it! You can always come back and read it later.
Please...the last thing I want is the guilt of knowing that someone has read this and freaked out. It's not going to happen to you. My son's condition is ridiculously rare - it happens in less than 2 in 10,000 births.
If you're still reading this, then you're probably going to read my birth story. I want you to know, it's just that - my BIRTH story. My son's birth was rather traumatic. I'm not sharing it here to scare anyone. It's my hope that maybe a mom will read this and feel less alone with her own traumatic birth. Or maybe a mom-to-be will read this and not feel as traumatized when she has a complicated delivery. Part of what was so shocking and traumatizing about his birth was that I had never before heard of such a defect. I want more people to be aware of this, tell their friends and so forth. I hope some day, when another mom hears what I heard on the delivery table she'll think, "Oh, I've heard of that!"
My son's BIRTH story is rough. I even find it heartbreaking when I read it...and it's MY story!
His LIFE story, on the other hand, is AMAZING, wonderful, joyful, courageous, loving, and humbling. Just like all parents, we've learned from our baby, and we've found the strength to rise to the occasion.
***************************** ***************************** ***************************** *~* READ THIS FIRST *~* ***************************** ***************************** *****************************
A REQUEST: I’m going to include some details about my son’s medical issues which are private and I'm trusting anyone who reads this to keep them private.
I was sent to the hospital on Tuesday night to be induced. I hadn’t progressed at all, so I had to have a cervidil insert in order to ripen my cervix. The plan was to start pitocin around 6am the next morning, break my water at 8am, and probably deliver around 4pm. We checked in, got the cervidil and a sleeping pill, and my husband went home to get a good night’s rest. I got up to use the bathroom at about 2am and when I stood up from the toilet I felt something running down my legs. Great, I’ve peed myself…oh yeah, or I’ve broken my water. Duh! I paged the nurse and she did a quick test. Sure enough it was amniotic fluid. Looks like the cervidil alone had coaxed my body into labor.
I had mild contractions throughout the rest of the morning and found them quite manageable through relaxation techniques I learned from hypnobirth. I took a shower around 5:30am and by that time the contractions were strong enough that I had to periodically lean against the shower wall for support. Since my water had already broken, my nurse started pitocin at about 6am. It was a low dose and meant to enhance the contractions I was already having. Enhance them indeed! I started having some pretty serious contractions almost immediately. They were getting harder and harder to breathe through and more difficult to manage. Due to gestational diabetes and induction, I was basically tethered to the bed and unable to walk around or do many of the movement techniques which are supposed to ease labor. My husband still hadn’t arrived at the hospital and my nurse was getting concerned. “Honey, do you have someone who is supposed to be here helping you?” Uh yeah, that would be my always-late-to-everything husband! He showed up eventually…just in time for me to request a narcotic.
I don’t remember the name of it, but whatever it was I got a shot in the hip and an IV drip. It didn’t ease the pain at all. It just made me too tired to complain. Things quickly got crazy after that.
The nurse noticed that my baby’s heart rate kept dropping during contractions. She had me turn this way and that to see if it would help. After a few minutes they decided to give me a higher dose of pitocin in order to speed things along. Contractions got much stronger, but I kept managing them through hypbirth techniques. I really did find that if I concentrated on relaxing, especially my back, that they were manageable. Unfortunately, his heart rate kept dropping…so they put the pitocin on maximum. I would still say that each contraction in itself was manageable, however there was NO BREAK in between. They were one on top of the other, over and over again, with no rest. As soon as I was 4cm dilated, I asked for the epidural. Within one hour of receiving the epidural, I was at 10cm. That’s right – I progressed from 4cm to 10cm in one hour. It was time to push.
As I was pushing his heart rate kept dropping. I heard the nurse page the OR to get ready and that’s when I knew it was now or never – push that baby out or else get a c-section. My OB asked me if she could do an episiotomy to perhaps get him out faster. Sure thing. She said she would do it on the next push. A contraction came, they said to push, so I pushed and then they yelled STOP!!!!!! His head was out and the umbilical cord was wrapped around his neck.
I remember the nurses commenting, “He’s so pink! He’s very pink.” I started to wonder why I wasn’t holding him yet. I looked at my husband and he kept pacing around, back and forth, trying to find the camera to take the picture of the baby being weighed. Someone yelled at him, “Dad, go stand by your wife please!”
I realized I hadn’t heard him make a sound yet. I listed intently for him to cry. Instead I heard, “Okay, I’ll do compressions…1, 2, 3, 4, 5….1, 2, 3, 4, 5….1, 2, 3, 4, 5.” They were doing chest compressions – he wasn’t breathing. Next I heard, “Page respiratory!” Someone ran in with a syringe which they administered to the baby – and HE FINALLY CRIED. Oh what a relief! Apparently he was affected by the narcotic I was given and the syringe contained an anti-narcotic that reversed the effects.
The nurses were cleaning him up and my husband and I were smiling at each other and holding hands, anxious to see our little baby. It seemed like it took forever for them to get him ready for us. At one point, one of the nurses called my beside nurse over, “Can you confirm something, please?” Then all hell broke loose.
“Page Dr. Gupta!” “Page radiology!” “Hit the call button!”
Suddenly the room filled with people and our very large L&D room was very, very crowded. Don’t quite remember what all was going on, but at one point I heard a woman say rather agitatedly, “Well SOMEONE has to tell the parents. SOMEONE has to explain what is going on.”
That was when a man came to the side of my bed and explained, “Your son is stable for now, but he has a birth defect called ‘anal atresia.’ He was born with no anal opening.”
YOU’RE KIDDING ME.
“No. He will need a surgery very soon to save his life. There are several other defects that often accompany this defect such as heart, kidney, trachea, esophagus, nervous system, bladder, and bone defects.”
NO WAY…YOU’RE TELLING ME MY BABY HAS NO ANUS???
“Yes. You can hold him for a few minutes now but we need to quickly give him more tests and transfer him to another hospital with a more advanced NICU.”
I shut down. I could literally feel my emotions turn off…like when the electricity goes out and the house gets so eerily quiet. Never, ever in my life would I have imagined such a thing. There are a million other birth defects and problems that I would have been more prepared for. I just couldn’t believe it. My poor husband had his head down on my bed.
I finally delivered the placenta and my OB stitched me up. Yes, that’s right. All of this was going on while my legs were still up in stirrups.
They handed me the baby and it felt like they were handing me a package of dynamite…like it could explode and hurt us all at any moment. His skin was perfectly pink, his hair was long and light blond, and his eyes were wide open and searching the room. I thought to myself, “I just can’t love you because if you leave me I will die.”
My mom, who had been planning on attending the birth, finally arrived. She got to hold him for a moment. Then it was time for him to leave. My husband and mother followed him to the NICU for his bath and tests.
I was left alone in the room. I looked around and saw the scrubs tossed about the room, various packagings from the medical equipment on the floor, the breathing mask dangling over the edge of the isolette, and the empty bassinet where my baby should be. Laying across my chest was a hospital baby blanket where they were supposed to place him after he was born. It hadn’t been used.
I actually thought to myself – this is how people lose their minds. I noticed that I had my mobile phone with me on the bed. I had a bunch of message from people who knew I was going in for induction. I didn’t know how to reply. I started text messaging people with something like, “He’s beautiful, but has some problems and needs surgery. Please pray.” The first person to respond was my BabyFit labor buddy. I responded and she messaged back…and so on. I absolutely credit her with saving my sanity (or what’s left of it anyway).
My L&D nurse burst into the room, “Oh honey I’m so sorry! They were supposed to get me before they left! You shouldn’t be alone in here! We’re going to clean you up really quickly so you can visit the baby again before they take him away.”
She gave me a sponge bath and said, “Sweetheart, I have to tell you something. Your husband is losing it. I can just see it. He’s loosing it and he just can’t lose it right now. You have to talk to him and help him pull it together. He has to be strong right now for that little baby and you. Do you think he can pull it together?” I nodded. She gave me a sedative.
She helped me into a wheelchair and wheeled me down to the NICU. When I saw my baby this time he had a GI tube running up his nose and into his stomach and an IV in his arm. I held him again and cried.
I told my husband that he would go with him to the other hospital. I told him how important it would be for him to hold him and talk to him as much as possible. I told him to make it clear to whoever he spoke to about this that these are his private parts and not public. That I didn’t want our baby to grow up being that-kid-who-had-no-butthole. I still couldn’t let myself love the baby. I just couldn’t.
They did some more exams while we waited for the ambulance. They found that he had a single vessel umbilical cord. This explained why he hadn’t grown very much. The ambulance finally arrived and they put him in the mobile incubator to get ready for transport.
I signed about a million papers. At one point the transport nurse asked me, “Do you have a name for him or do you want us to admit him as BABY BOY?” Uh oh. We had waffled around about picking his name for months! We finally figured that we would just chose his name after he was born. We imagined we would have a couple of days in the hospital with him, getting to know him, and then we’d know what name to give him. Now what??
I looked at my husband and asked, “Benjamin?” He nodded. And so he got his name.
They transported Benjamin to a hospital about 2-hours away. My husband followed in our car and my mom stayed at the hospital with me. It was a long night. Everyone at the hospital was so great – caring, sensitive, careful. It was still a long night…hearing babies cry down the hall. I set a timer and pumped every two hours…nothing came out, except for maybe some sweat, but I kept at it anyway. My husband called a few times during the night to update me about Benjamin’s tests. They discovered he had a few vertebrae which were not completely formed (called “hemivertebra”) and a rib was missing...giving him mild scoliosis now and possibly worse in the future. They found that his heart ventricles were swollen. They said his right kidney was swollen (called “nephritic”). They found that his spinal cord was tethered (latched on at the bottom to muscles or bone) and they told us he might have trouble walking, controlling his bladder and bowels, or be paralyzed.
I was discharged at 8am the next morning – about 20 hours after delivery. I went strait to the hospital where my baby was. I used one of those dumb diaper bags they give you for all of my personal care items…the peri-bottle, maxipads, tucks, etc. On the way to the hospital my husband called and told me that the cardiologist said his heart is perfect. I bawled. We stopped at Target and I bought a breast pump and a notebook. I talked to my husband a few more times and he said that his brother was there and was a total wreck. He said his brother was just bawling and he’d never seen him like that. I told him, “Well you have to tell him to either chill out or leave because I CAN NOT handle that sort of drama right now. In fact, make it clear to everyone there that there is to be no drama and no hugs and kisses.” I knew that I would lose it otherwise.
I went strait to Benjamin’s bedside when we got to the hospital…well first I had to remove all of my jewelry and scrub up to my elbows at this huge sink. When I saw him I bawled again. I still didn’t want to love him. He was hooked up to 3 or 4 monitors, 2 IVs, a GI tube. There were tubes and wires and flashing lights everywhere. The bedside nurse offered me a chair and asked me if I would like to hold him. Yes. I had to wash my hands again because I had been wiping my eyes and nose. I held him in my arms and I was so terrified…so scared to love him and get my heart broken.
We were scared to ask the question – will he survive? Well, survive he did. You can read the details at his blog (eyeonthebaby.blogspot.com). My love for him has grown as well, of course. It wasn’t love at first sight like I know many moms feel, but it’s growing every day.
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