Archive for September, 2010

Luke Timothy’s Story

September 27th, 2010 by Kathryn

Unlike many NEC babies, Luke Timothy was considered full-term when he was born on September 18, 2009, at 36 weeks, 3 days. But, due to growth restriction in utero (IUGR), he was a tiny 3lbs. 9oz.

The neonatologists kept telling us that he was at risk of developing NEC, but with each passing day, his chances were lowered. On day eight, he had difficulty tolerating his feeds and x-rays confirmed he had gas in his bowel. We held off feeds for 24 hours and began a cocktail of antibiotics. When we reintroduced feeds he did beautifully…and then 12 hours later he turned septic, stopped breathing and had to be resuscitated. At nine days old, he was rushed to Dell Children’s and underwent emergency surgery a few hours later. Our surgeon told us he wasn’t sure what he would find when he opened Luke’s belly, but if we didn’t do something, it was likely Luke’s bowel would perforate and his chances of living dropped dramatically. Luke lost more than 16cm of small bowel and his appendix. Sending him to surgery was the most difficult moment of my life as a mother. No life experience prepares you for that complete and total surrender.

That first week, seeing him intubated, not being able to hold him, watching him fight the infection – it was all excruciatingly hard. During that week, we also learned that Luke’s kidneys were small, he had two holes in his heart, bilateral arachnoid cysts on his brain and it was likely he had a tethered spinal cord. Talk about information overload!

Two weeks following his surgery, we reintroduced feeds. He threw them all up within six hours. So, we waiting another 24 hours and tried again. The NEC came back. We were devastated. We waited yet another week before introducing feeds. That first feeding was filled with a football stadium full of worry. Slowly. Cautiously. We introduced one ml at a time.

After 44 days, we left the NICU with our precious miracle in our arms. Since then, Luke has endured two more bowel surgeries as a direct result of NEC and spine surgery, as well. At nine months, he is a dainty 13 pounds, but he is a fighter. And a complete and total miracle. The baby no one thought would leave the hospital, did. I am humbled as I read the stories of each of these babies who lived, and those who died, from NEC. It is the third ring of hell, but it also allowed me to love Luke and our other four children on a deeper level than I thought possible.

Michael’s Story

September 27th, 2010 by Clarice

Missing him everyday…

I lost my son of 8 days to NEC on 2/9/2010. He was born at 31 weeks and 1 day via C section due to my pre-eclampsia after being on bedrest 3 weeks (28 to 31 weeks ).

Michael was born with 9 APGAR score. Healthy in every way . Just needed some CPAP for breathing and some BILI lights. He was transferred from NICU to stepdown after 6 days. He was doing very well the fact that he was transferred.

Then a phone call came at 4 pm on 2/8 saying he did not tolerate his feeds via tube that afternoon and that he will be transferred back to NICU for more monitoring. They said they suspect NEC but NOT TO WORRY for it is not definite. They said that if it was , it was caught in time. He was being started on antibiotic regardless for protection. X ray did not show “air” so the liklelihood of NEC is low.

I immediately research NEC online. I did not realize the seriousness of this disease. I thought it was just some bug and he will recover quickly. I did not see the urgency of going back to the hospital. Since I just left it on 2/5 after being there for one month. I was alos thinking he looked so well on Sunday so this is a fluke.

I ended going to hospital at 8 pm after I was called indicating that my baby “stopped breathing”. My life almost ended there. We rushed to the hospital within 30 minutes.

When I saw him he was pale, intubated, looked like in pain. He was opening his eyes and looking at us. He knew my voice. (After he died and when we were talking about the evenst, my husband said that Michael was looking at us to memorize how we look like so when he sees us in heaven he will know us). He looked so fragile. I wanted to hold him and carry him amd take all the pain away from him. But I declined from carrying him because I thought it would intefere with his treatments. I wanted him to get better and I had the hope he was going to.

His heart was beating in the 200 to 230’s. The doc said that was expected! I touch his distended belly and he cringed. He was in pain and they had given him Fentanyl to remove the pain. hey had difficulty obtaining his blood pressure. They planned to give him fluids, Dopamine drip and some blood. ( I should have known that he was dying here but I was in denial. Everyting seemed unreal. I also had hope he will get through this)

My husband had insisted that we may be interfering with the treatments so we had left after being there for 2 hrs. I know I will still see my son. The preinatologist had informed me that my son will need antibiotic for 2 weeks and possbly central line for this long term treatment. Otherwise, it will be waiting and seeing for now. I kissed my son goodbye and decided will be back in early AM.

I called at 12 :30 AM to check on how my son is doing and had spoken with the doctor. She said that he had gotten his color back and that his vital signs are good. He had responded very well to the fluid resuscitation. Everuthing is all right.I was able to go to sleep. I was exhausted and still was recuperating from my C section.

I received a call at 4:30 am and that he had lost a lot of blood and that he developed bruising in his belly. This is not good! He is dying! The doctor will not tell me how much blood he had lost.

When I got to the hospital, my soon looked pale. Very lethargic. Opened his eyes weakly as to acknowledge our presence and to say goodbye. His heart rate was still strong but he was desaturating despite being intubated and with high oxygen concentration. My son is dying.

At around 6 pm his oxygen saturation was in the 60’s and he continued to decompensate. One nurse tell me to say my goodbye because he was waiting for me to let him go.

I kissed him and whispered on his ear that mama loves him and that I will see him in heaven. I did not want my son to go but I see him suffering so much and I wanted to take that away! I said “Our Father”. Within few minutes his heart rate continued to dropped until it reached 60’s to 20’s. They resuscitated him for a little while but when I saw his heart rate is low..Ii told then to stop so I can carry him while he was warm. He was pronounced dead at 7:57 on 2/9/2010.

All of this happned so fast. It hurt so much and until now I have a lot of “what if” questions. I was thinking that maybe if they had done surgery earlier my son will survive and will be in coming home to me end of Feb.

We buried him on Feb 16th and we visit his grave every week.

Amari’s Story

September 27th, 2010 by Tavia M. Saunders

I dont even know where to begin . so i will just start ….My son Amari Allen was born 4/24/10 at 29 weeks. he develope NEC about 3-4 weeks after his birth , things didnt look good then he had to have surgery , well I have been thru the ringer ! Amari had surgery finally to reconnect 8/2/10 only to go back in last nite to have two stomas. his wound re open which was leaking and muscles exposed turns out there was some scarred tissue which cause the bowel to swell and woulnd to re open. I felt like we were on the road to recovery only to be kicked back down, I fell so helpless. has anyone been or going through what I am . it took me ten years to have him and four miscarriages. i just need someone who can relate.

Sara’s Story

September 27th, 2010 by Sara

I had my little boy back in 2006, who was born 6wks prem and by c-section as i had pre-eclampsia too, so was very poorly. I din’t get to see my baby till 3days after, just saw him on a polaroid photo the special care unit sent up for me. However as i was getting better, my baby developed NEC 5 days after he was born, swollen belly, blood in stools etc. Then we had to wait for a transfer to a hospital equipped to deal with my son, seemed to take forever. As they only have so many ambulances equipped with incubators which have life support etc. I was throwing up waiting, due to the shock i was in. Knowing i had only just met my baby and had never held him before! Especially when i also was so ill. They told me he urgently needed to be transfered as they suspected he may ned surgery. We eventually were told he would be sent to St Marys in Manchester, 20 mins drive away. I had to be transfered to the same hospital as still very poorly too.

We were then taken to a family room! (bad news room!) and told at 1am in the morning he had NEC and it had perferated and he had less than 1% of surviving! My whole family rushed up and we all went in 2 at a time, to say our goodbyes. we were told in the room to sign the consent form. we both couldnt breathe, talk or even stand up due to how emotional we both were. I couldnt even see the pen or paper when i had to sign, what i thought was my babys life away! The worst feelings ever.

He was then taken to theatre, our whole family were kindly put up in the family rooms, where we sat and waited and waited for hours. Although, i was still officially a very poorly patient, but at this time refused any treatment as i was loosing my baby! So they soon had to stop arguing with me. Hours past, then we heard people in the corridor.
He was being brought back to intensive care, we were told to wait in a family room where we were told they had operated and removed 3rd of his bowel which had died and he had stomas. To let the intestine try and recover and see if at some point this could be reversed.

I am missing out so many details, pain, emotions in between all of this. However i am sure you can imagine what you feel when your baby is so ill.
We were finally allowed to see him. He went through so many ups and downs, infections, blood transfussions, long lines etc. In between being in intensive care, then high dependancy. Back and too for months and months. The stomas were not working as they had hoped so they operated to reverse them and only hope for the best as this was his last chance. So many times, the operation was cancelled coz he was just too poorly. Months went by again, we lived in the family rooms when they were free and never left his bedside. He was then allowed to be taken off the wires for a 10min break for us to take him in the hospital pram to the canteen. Wow, that felt amazing. Even knowing that might be the only chance we ever get to take him anywhere, but an incubator.

He was then referred to another hospital, where he stayed a while. Few more operations, infections, long lines etc. Can remember one time, when i had to take him into theatre gowned up weighing less than 6lb and took him into a theatre rom ful of people. Where i was then asked to put him down and hold the gas mask over his face so he could still see me! This was one of the worst things i had to do and still gives me nitemares to date. Just watching him go under the gas to be knocked out in itself was hurrific, i was crying my eyes out and could barely even see him through my tears. He was in this hospital a little while. Then transfered again to another hospital where we remained for another few months and specialised in bowel problems etc. we were in an issolation room for months.

So far this had been 6 months of living with my baby in hospitals. I decorated his room and wanted to give him everything i could, always fearing the worst and he would never get out of hospital or even make it. I stayed strong and just hoped he would too. I new all the staff, cleaners,canteen staff, patients and other families. Who almost become part of your life, as nobody else could ever understand what you were possibly going through unless you were living it or been there. Which i would not wish on anyone. However it does happen and i am determined to try and research in to this more. Are there any research groups?

My litle boy eventually came out after almost a year and was back and too to hospital for years, doctors, dieticians. I had to order Special milk at my local chemist and feed every 3hours cause his bowels could not take more in one go. Used to walk out of the chemist with three carry bags full, including medicines and liquigen which was to bulk up the milk for him to try and gain weight.

He is now 4 and is my shining star who i never thought would make it. He has 6 scars which i want him to be proud of as they saved his life on so many occasions! He is allowed to drink normal milk and food now. He just has very bad bowels, which may never get better. But a small price to have to pay considering what he unbelivebly got through! We still go to hospital appointments and he was the dieticians star patient too. In all the years he had looked after anyone, he said my son was an exception to the rules. To go from the worst extreme to a healthy little boy now brings tears to his and all our eyes.

I am eternally grateful to all the hospitals and people who helped him survive and be there for me too. It was the hardest year of my life. But through all the heartache and pain he is still here today. I hope you dont mind me telling you my story, there are not that many people, infact none that i know who have experienced what we have. Other than some in the hospitals at the time. I just wanted you to know that there are a few that make it and i am so so sorry for your losses. But, the more people/hospitals that are aware of these symptoms and the more research that can be done, the better. I dont want anyone to go through what you or i have been through.

Thoughts are with you all