Archive for April, 2012

Baby Patrick’s Story

April 27th, 2012 by andi

I was expecting a beautiful, much wanted and loved son in October.  On June 14, my water broke.  I was 23 weeks…and his only hope was to make it another week. Well, being the strong little man he was, he made it to 24 weeks, 2 days. I got the steroid shots…and thought maybe we would be lucky….maybe things would be ok.
Well, at 24 weeks, 2 days, many things went wrong….he was a breech, so we discussed a c section, if needed…I started having contractions. I went from 1-3 cm in one hour.  At this time, my cord prolapsed, and my placenta erupted 50%…I was hemorrhaging, and an emergency c section was needed.
At 2;46 am on 6/20(Fathers Day) Patrick Mclean entered the world.  He was strong for a 24 weeker.  He was a tiny little thing at 1lb 5.5 oz,and 11 inches long.
On the 23rd, I was discharged from the hospital..and I went home to see my girls, and to get more clothes, etc.
At 4 am, on the 24th, we got the call no parent wants to hear….they needed permission to transfer him to Seattle Children’s Hospital…he had NEC…and it was BAD.
We arrived at Childrens by 8…and nothing could have prepared me for the sight of my beautiful baby….swollen and discolored from internal bleeding with drainage tubes in his abdomen…and on an hfov.
They said it didn’t look good for him…even with the drain tubes, he only had a 5% chance..he was too small and too sick to operate on…and the bowel damage was extensive.
We had Patrick baptized by our pastor…and an hour later, he started coding….he coded 3 times in 5 minutes.  From the NEC, he had peritonitis and extensive internal bleeding….we had to make a choice….a choice no parent should ever have to make….keep doing things TO him instead of FOR him…or let him go.
He fought so hard to stay…but in the end it was too much for him…we had to let him go….every time they revived him..he bled from his tubes.
I held him while he passed.  It was the most heart wrenching time of my life.  My sweet baby died in my arms on the afternoon of June 24…after a too short life of 4 days.
We had him cremated, and had his funeral at church…so he could go to church one time.  Such a big funeral for such a tiny sweet boy….we love him so.
Today, his ashes sit on a shelf in my living room….instead of a healthy baby growing in my belly where he belongs, all I have are the blankets in witch he was wrapped when I transported him to the funeral home, a box with pictures and a certificate, hospital bracelets,  and a tiny urn,containing a small amount of ashes…the pain and guilt is unbearable at times…I see him all the time, and at night, I hear a baby crying…I cant help but wander the house and yard searching for the baby so I can love and comfort him. I dream of my boy every night…some good, some bad.
I need the pain to end..I can’t bear it……..I want to scream from the pain that is so intense I hurt physically.
I believe his NEC was partially caused by the Doctors starting feeds too early.

Baby Thor’s Survival Story

April 27th, 2012 by Heather

I had to have a scheduled C-section because my baby wasn’t growing. My son was born 4 lbs. 3 oz. and he had juandice and his lungs weren’t developed completely yet. He was 6 days old still in the NICU and they told me he had an infection in his bowels and had to be transported immediatley to another hospital but I couldn’t ride with him but I could drive there. We got to the other hospital and 2 surgeons met with us and said that my son (Thor) was here and they are getting him ready for emergency surgery I asked if I could see him and he was gruntin and barely breathing, he was in so much pain. I kissed him told him I love him and to be strong. Surgery took 9 hours and they took his appendix out, 97% of his colon and most of his large intestine and he had to have a colostomy bag for a while. He was in the hospital for 2 months and we got to bring him home for 10 days. And then bring him back for another surgery to get rid of the colostomy bag and reattach his intestines. A large part of his large intestine was dead from the NEC. He spent 1 more month in there and then came home. They had told us that there’s a good chance he won’t survive and now he’s 13 months old and a very smart healthy little boy. He is our miracle.

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Baby Chloe’s Survival Story

April 25th, 2012 by Leanne

Our daughter Chloe was born in Arrowe Park Hospital in the Wirral, on the 19th May 2011, at just 26 Weeks and weighing only 1lb 15oz. During labour I contracted an Invasive Group A Streptococcal infection (iGAS). Because of this doctors, after a while, gave up all hope of Chloe being delivered alive and left me fighting for survival. When Chloe was born, the medical team managed to get her breathing and took her straight to the Neonatal Intensive Care Unit (NICU). I spent the next 3 days fighting in intensive care.

Chloe remained in Arrowe Park for 20 days, before being transferred back home to Stepping Hill hospital in Stockport. After just 7 days in stockport, Chloe contracted Necrotizing Enterocolitis, an aggressive infection that attacks the bowels in premature babies. Within hours she was rushed to Alder Hey children’s hospital for a life saving operation to remove the infected bowels. She had lost so much due to infection that surgeons gave  a poor outlook on surviving surgery, and an even smaller chance of survival going forward.

Chloe fought through the surgery, and a further five more procedures, over a total of 8 months in hospital, the last 6 months of which were spent in St Mary’s and Manchester Children’s hospitals.

This year, the 19th of May marks a very special day which many doctors thought we would never see, Chloe’s first birthday. To celebrate the amazing journey we have been taken on over the last 12 months, and the beautiful, strong, and ever smiling daughter that they have given to us, we are organizing a number of fundraising events over the next month. The money raised will be going back to the NICU wards that worked so hard to save our daughter, and to the Ronald McDonald houses that provided us with both accommodation and more importantly a support network between us and other parents going through similar struggles

This page is to support me in a sponsored head shaving, which will see all proceeds going to Alder Hey Ronald McDonald house. Please do all you can to give as much as possible to give this amazing project a much needed helping hand.

Baby Leo’s Story

April 22nd, 2012 by charlotte

2 out of 3 of my babies have contracted NEC & my little boy didn’t survive. I had twin boys on Mon 16th Jan 2012 at 33 weeks I was in hospital 5 weeks prior to their birth all over Christmas because I had pre eclampsia. Leo was 3lb 10oz & Jake was 4lb 1/2oz they were taken straight to the neonatal unit where Jake needed help with his breathing but Leo even though he was smaller didn’t need help. Over the next week I was expressing my milk for them both & they were tolerating it well. Leo did drop his blood sugar levels every now & then but doctors said that’s quite normal for preemies. When the boys were 9 days old they were moved into hot cots & doing well on day 10 morning they were both moved into normal cots no wires or monitors but Leo dropped his blood sugars again. Then in the afternoon Leo started being sick he went through lots of baby grows & by the time I went back to see them in the evening he looked yellow & in pain & was still being sick I was so worried because 3 years before my daughter who came at 32 weeks contracted NEC & had a hole in her bowel but thankfully she had medicine that healed her bowel but she started off being I was petrified this is what was happening to Leo so i told his nurse & she said she would keep an eye out looking back now I will never no if I kicked up more of a fuss for him to be monitored closer or demand to see a doctor my baby would still be here now because in the middle of the night he got transferred back into an incubator feeds stopped & pumped full of medicine & by the morning he was on a ventilator because his tummy was so swallow it was squashing his lungs. When I saw him on that 11th day he didn’t look like Leo he was white double his size & barely even here. The doctors told us he had to be transferred to another hospital in case he needs an operation it took the transfer team 5 hours to stabilize him just to move him 3 meters to the travel incubator we had to say goodbye to him then because we didn’t no if he would make it the 3hour drive in the ambulance. Our son made it to the hospital & we traveled up leaving Jake in our local hospital & our 3year daughter at home with family. At 5 in the morning day 12 they told us they have to operate because he was deteriorating quickly & we had to sign a form to say we understand if he died on the table or they might open him up & his gut would be so damaged they couldn’t do anything to help him. 2 hours later we got taken into a room & told very clearly all of his gut was dead & there was nothing they could do my baby boy was going to die. We were in turmoil but we spent as much time with him as possible I got him dressed for the first time & had him christened in front of close family & when he was 12 days old at 5.45pm they turned his ventilation off my baby died in my arms. I still have his brother & sister to keep me going & I don’t no why it happened to my beautiful Leo who will always be in our hearts & is the brightest star In the sky love you Leo x x x x x x

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Baby Bailey Rae Survival Story

April 17th, 2012 by Marla

First of all, thank you everyone for sharing your stories! Bailey Rae came into our lives on July 8th, 2010 5 weeks early at 5.2 pounds. She was in the NICU for observation because she was a little early. On July 12th we received that horrible phone call telling us that something was wrong and we needed to get to the hospital immeadiately.

Her skin was modeled when we got there and a doctor started showing us xrays and talking about NEC, which we had never heard of. Four hours later she was put on a ventilator and at 9pm her bowel perforated and she was taken into emergency surgery. A surgeon came and got my husband and I and told us that we should kiss Bailey goodbye because she would probably not survive. I reached in to touch my little girl and told her she needed to fight. She grabbed my finger and wouldn’t let go. At the time I thought she was saying goodbye and a pain so deep it took my breath away came over me. I realize now that she was letting me know how strong she really is.

Bailey made it through surgery but lost 70% of her small intestine. We were warned that it would be a long, hard road and that her chances of survival were still very small. My husband and I decided that we had to have faith in God and believe from that point forward that she was going to be okay. We never allowed any negativity around her.

She spent 4 long months in the the NICU and for awhile it seemed like the doctors only had bad news for us. They predicted infections, multiple surgeries and liver failure from the TPN. The last week in August Bailey’s small and large intestine were re-connected and she was given a feeding tube. On October 26th, 2010 she fianlly got to come home with her TPN, feeding tube and multiple medications.

Very slowly we started adding formula through the feeding tube and lowering the TPN. By February the yellow was gone from the whites of her eyes and her skin and by March we stopped using the TPN. She was on the feeding tube until November of 2011 and she endured what will hopefully be her last surgery earlier this month to close the hole where the feeding tube was. She eats everything she can get her little hands on now and seems to be growing at a great pace. The doctors tell us she is amazing and an absolute miracle.

We are so blessed and pray for all of you out there that are going through this nightmare now. Please know that there is hope! It is such a difficult, heartbreaking roller coaster ride. If anyone out there needs someone to talk to or vent frustrations to please contact me anytime. I wish that I had someone during our time in the hospital that understood what we were going through.

God bless all of you and your little angels!