Archive for May, 2016

04-06-14(0:13:24)

May 7th, 2016 by edna

When my son was born he was as healthy as any other baby.a week later my world collapsed when i noticed my son was not ok.i took him to the near by hospital and i was told what no parent wants to hear.if i would of waited 30 more minutes and my baby could of died.He was so tiny and already fighting gor his life.he went thru a series of exams tests etc…
He fought for 3 weeks and thank god he won.Know he’s a heathy 7 yr.old big brother

30-12-13(6:48:27)

May 7th, 2016 by KC

My son Carter Griffith was born December 2013, 3 1/2 months too soon.

At 2:30 on a Wednesday morning I rolled over in bed and felt a gush! I called out to my husband and said “I think my water broke! … Can that happen!?” I knew it was a stupid question, of course it can happen but it shouldn’t!

I called my OB’s office and was assured that it wasn’t likely that my water broke but to call again in the morning if I still felt like I was leaking fluid. I work at a hospital and so I drove to work the next morning and called my OB again with no change. I was told to go to the childbirth center to be checked out, just to be on the safe side. I was sure my water had broken but I was hopeful. This was my first baby so I was in unfamiliar territory. I was sure there was some simple explanation.

Through my entire experience of that next week I never received bad news but I did receive a lot of ‘not so good news’. Starting with: my water had indeed broken but there was no sign of contractions or dilating. Great! So do I need to go home for the day or am I okay to go back to work? Now I’m truly not a stupid person but I was very naive and very hopeful and no one wanted to give me bad news. I was finally clearly informed that I needed to be transferred to another hospital where I would remain until my due date 3 1/2 months away.

Several hours and phone calls later arrangements were made and my husband and Mom were by my side helping me get settled into my room at the University hospital. Later that evening someone came to take me to ultrasound. I was surprised that she didn’t bring the wheelchair into the room and figured she must have it parked out in the hall. When I didn’t see it in the hall I assumed we must not be going far. It wasn’t far but still I wasn’t exactly sure I was allowed to move around, or if I was I wasn’t sure how much. I didn’t want to be a difficult patient and so I only raised my eyebrow at it… Looking back I should have insisted on being wheeled down to ultrasound.

All the test results were still promising. I would just have to wait out the rest of my pregnancy counting ceiling tiles and singing the song that never ends. I knew every hour he could stay in my womb mattered and I was happy to do it if it meant a strong healthy baby.

Sometime during that first sleepless night my world crumbled just a little bit more; in the small hours of the morning the baby turned and compressed his cord. His heart rate dropped and nurses ran in to put me on oxygen and turn me to one side. His heart rate returned but continued to drop dramatically every 30-45 minutes. With each drop I was informed that he may need to be delivered soon. My husband was at work over an hour away and dropped everything to race there as fast as he could just in case. My Mom did the same but she was only 20 minutes away. I was still optimistic, I had to be or I would have seen this for the crisis it really was, I was sure his heart rate would go up and stay up and we could go on with the pregnancy; it simply had to, I was only 26 weeks pregnant. My Mom arrived and I was told that as soon as the OR was ready they would be taking me for the c-section. I began to shiver.

My son Carter was born that morning. He weighed only 1lb 11oz. He was ventilated, stabilized and taken to the NICU. The rest of the day was a blur. My husband arrived and he and my Mom went to be with Carter. He was beautiful and perfect… just tiny. I got to see pictures but had to wait until I could sit in the wheelchair before I could see him. Finally after what felt like all day I got to go to the NICU and meet my son. I rested my hand gently on him and softly sang a lullaby.

And that’s how our delicate fairy tale went for six days. I spoke to him, sang to him, learned how to change a preemie diaper. He graduated from the ventilator to a c-pap. We got tears of joy when he finally pooped. I held him gently to my bare chest and sang to him some more.

On the sixth day he had been having more and more brady episodes and so they switched out his c-pap to NAVA. Anytime he held his breath for four seconds he would get a puff of oxygen. Still.. it wasn’t bad news.. just not so great news. It was still a great day in the NICU.

Early the next morning we got a call with more not so great news. Carter had even more brady episodes during the night and had to be reintubated. We raced to the NICU to be there in time for rounds… in time for everything to go horribly wrong.

First his blood chemistry was a little off, then his abdominal x-ray looked suspicious. Quickly more tests were ordered along with another x-ray. There was free air in his belly and his blood was becoming acidic indicating dying tissue. He was being prepped for transfer to Seattle Children’s Hospital for surgery and we were told he had a 50/50 chance. All I could think of was my God that’s the flip of a coin!

Family was called, consents and transfer papers were signed, and I was about to ask a question when suddenly I heard the words … CODE BLUE. Someone stood in front of me to block my view as they did chest compressions on my tiny baby. They quickly had him stabilized enough for transfer and we raced to Children’s.

About a dozen nurses and specialists crowded his giant NICU room while my husband and I were allowed to wait off to the side just out of the way. They worked on him for a long time hooking him up to several IV’s and machines. Social workers introduced themselves, waiting, offers of juice and crackers, more forms were signed, and more waiting. Several doctors came to explain what NEC is and what they might be able to do about it. His acidosis was bad and they needed another x-ray. More waiting. The docs looked at a computer screen just out of our view and shook their heads. The docs gathered everyone in a family conference room. Someone had called our pastor who joined us.

Carter had extensive NEC and the acidosis made him unable to clot. Lifesaving surgery was no longer an option at that time. They would insert drains to decompress his belly and if his blood chemistry improves he may become a candidate for surgery. We were finally allowed to see him. He had four IV’s. The ventilator was breathing for him. His arms were limp at his sides. His tiny belly was horribly discolored and blown up tight like a balloon with a drain on each side. I held his little hand, told him everyone was here and that he was doing such a good job of fighting.

They didn’t sugar coat it, this was very bad news. Everything about what they said, how they said it, their body language and facial expressions… Carter wasn’t going to survive this.

While in the family conference room praying with our pastor Carter had to be resuscitated again.

The pastor came back into the room with us and with tears in his eyes he baptized our son. With my husband and I already crowding the bedside the charge nurse quickly gave into our request that other family members be allowed to join us in the room. Everyone took a turn holding his hand and talking to him. I prayed to God that His Will be done and that if it was His Will that Carter should be called to Heaven that it be quick, peaceful, and painless.

Early that evening, not long after our prayers, Carter’s oxygen level went down further and further. Soon his heart rate began to drop too. My husband and mom pulled me aside just as they began his third round of CPR. Knowing our wishes, the doctor told me that it was time to hold him and my husband gave the order to stop.

They placed our son in my arms as family surrounded us. I rocked him and sang the lullaby he had come to know. I thanked him for being our son and told him how proud we are of him. I told him that he did good and that he should go to Jesus now. I sang a few minutes more. The doctor told us that he was gone and then led us in prayer.

Everyone in the room took a turn holding him and saying their goodbyes. I helped the nurse take out all the tubes, I washed his body, and wrapped his body in a clean blanket. We held him for a few minutes more and then handed him to the nurse. We kissed him one last time and said our goodbyes and then forced ourselves to walk out of the room.

Numb with shock we somehow made it home. We slowly survived the first day and then the next…

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03-01-14(2:22:17)

May 7th, 2016 by NIA

My daughter Kayla Nicole was born 12/09/2013-my precious baby was 2.4 lbs- she was only given my breastmilk/ Kayla was diagnosed with NEC 12/22-she had to have 2 surgeries-after surgery 2-me and her father were waiting in the waiting area with my other 2 children eating a snack-i was very hopeful, i knew she was a fighter- but the doctor came and gave me the worst possible news anyone in the world could have ever given me ” Im sorry but there’s nothing else we could do, all of it was infected, and she can not survive without her intestnes.” My heart dropped, that day me and my husband stayed by her bedside and we held her until her very last breath. Earlir before the surgery she squeezed my finger and peeked at me consistency, and as she died in our arms that was all i could remember were those gorgeous eyes peeking at her hopeful and faithful mommy-I buried my baby christmas eve- and it felt horrible like a nightmare i never wanted to be in, I wish someone or GOD could have saved my baby, she made me complete, GOD made sure my baby had no possible way she could be with her family, Ive been through denial, hate, grief, sadness, hate again, dont know who to blame, why me, why my baby, why? why? why? I sat in my kitchen some nights and just stared at the wall and cried and asked GOD to send my baby back. but i knew that was impossible, IF GOD blesses me with millions I will most definitely put it into finding a cure or alternative for precious babies with NEC

I love you forever and will see you in Heaven one day
Kayla Nicole Dec 9-Dec 23 2013
From Mommy and Daddy and your 2 big sisters

03-09-14(15:38:36)

May 7th, 2016 by Amber C.

Hi all! I’m a 26-year-old, NEC survivor. I used to really hate the giant scars on my stomach from the NEC surgery, but everyone told me they were my battle wounds growing up. My grandma still refers to me as a miracle, and I get the feeling that maybe she’s right at times. Seeing how devastating preemie births and complications from NEC can be often makes me wonder why I’m still here so many years later.

I was born 3 months premature on April 10, 1988. My birthday was supposed to be July 10, 1988. From what I’ve been told, I was in the hospital for months. All my baby pictures are me in an incubator, hooked up to tubes and machines. My parents couldn’t hold me. My grandparents, aunts and uncles were constantly visiting me in the hospital during those times, holding my hand through the hole in the incubator.

I know my parents did have friends in the hospital, another couple who had a preemie baby boy named Michael. He had NEC too and sadly didn’t make it. Going through this experience, despite having no recollection of it now, does make me feel very blessed to have been a survivor.

For all the parents grieving, or scared, or wondering what’s next… stay strong.

25-09-14(21:21:35)

May 7th, 2016 by Joanna fisher

Me and my husband went to for an overnight stay to Glasgow for a christening and I went into labour. I was 25 weeks and 3 days pregnant with twins. I was 2cm dilated when I went to wishaw hospital following a bleed, as we were from England we didn’t know where we were and therefore had to google the nearest hospital. My beautiful twins Lola and Ellis were born a week later on 3/5/14 by emergency C-section after Lola’s heart rate kept dropping when I was having a contraction. Lola was 1lb 14oz and 31cm long and Ellis was 1lb 15oz and 35cm long. Lola done so well and didn’t need ventilating, she went straight onto oxygen and thrived. Little Ellis wasn’t is such a good state and was ventilated straightaway. They both went straight to neonatal ICU. After a couple of days Ellis’s tummy swelled and he was bringing up green bile, they xrayed him immediately and sent him straight to yorkhill children’s hospital as they suspected NEC and a perforated bowel. When we arrived the consultant said they were putting a drain into his tummy to see if any faecal matter would come out due to a perforation. The consultant immediately put the drain in which confirmed there luckily wasn’t a perforation. He praised the wishaw hospital consultants as the NEC on the X-ray was really subtle and could easily has been missed therefore he was started on IV antibiotics and all feeds stopped. Ellis was a fighter and continuted to thrive, he had his heart duct closed to help with the blood flow to the bowel and a few weeks later when he was transferred to our local hospital he got NEC again however this was found once again early and he was treated with IV antibiotics. We have been so so lucky and it’s really sad to hear the stories were the parents haven’t been as lucky as us. The twins are now 20 weeks and sleeping and growing!! Ellis has recently had his four hernias corrects and had a hard time with that. He went into cardiac arrest during surgery but once again recovered within 6 days and was home again!! We now call him Ellis the cat with his 9 lives.