Update on Post - Medtronic BioGlide Ventricular Catheter Recall

So as you all know from my post Medtronic BioGlide Ventricular Catheter Recall. That we got a letter saying that Dakota had not one but 2 of these in his head. Well the ticking time bomb started its count down. You know those people who are always the 1% or in our case in the 5%. Poor Dakota. Of course it all started with headaches, sleepiness, pressure, headaches, nausea, etc... It was soon apparent that this was more then just the usual headache when I went in to his room and he was grasping his head in nothing less then I can describe as agony. His cries turned into screams. At this point my heart drops and panic sets in. I rush to get him in the car. Which I knew was going to be horrible. The children's hospital was about 40 minutes away with traffic. I had him so bags for when he got sick and we were on our way. That car ride was the most painful to my heart that I can remember. It was bad. He was in extreme pain. We finally arrived I pulled up to the unloading zone as I open the door he gets sick. We deal with that. Then rush him in. I show him our Medical Red Card that showed he has a shunt in his head that is on a recall list and it could be a life or death situation. We get rushed right back. His vitals are not so great. Clearly he was in pain. Clearly something was terrible wrong. They immediately take him in to get a CT Scan. They immediately notify neurosurgery that he is there.

*Side note. This is also the day that we find out that my child's brain surgeon is no longer practicing at the hospital and in fact is no longer even practicing in the country. Needless to say Momma Bear came out roaring a few times this hospital visit.

Well the scans and shunt series x-rays showed that his ventricles were enlarged. There definitely was a shunt failure. But they could not tell for sure what was the failure until they were in surgery. They decided it was bad enough that he could not wait and needed to go in now.

What is Hydrocephalus and how did Dakota get it?

Hydrocephalus is still sometimes referred to as "water on the brain." Hydrocephalus is a condition in which an excess of cerebral spinal fluid accumulates in the cavities of the brain known as "ventricles."

One of the things that Dakota had to deal with due to his prematurity was bleeding on the brain which is known as IVH (Intraventricular Hemorrhage). Sadly this is common among premature babies. He was a few days old when they did a brain CT and noticed that the ventricle were larger then they were supposed to be. So over the next couple of days they did more CTs and an MRI and diagnosed him with Grade III and Grade IV Bleeds.

What are the different grades of intraventricular hemorrhage?

The amount of bleeding varies. IVH is often described in four grades:

Grade 1 - bleeding occurs just in a small area of the ventricles.

Grade 2 - bleeding also occurs inside the ventricles.

Grade 3 - ventricles are enlarged by the blood.

Grade 4 - bleeding into the brain tissues around the ventricles.

Grades 1 and 2 are most common, and often there are no further complications. Grades 3 and 4 are the most serious and may result in long-term brain injury to the baby. Hydrocephalus (too much cerebral spinal fluid in the brain) may develop after severe IVH.

We were devastated. When they first started telling us what was going on. I decided to read up on it bad idea at that moment. My hope for him was shattered. We were told the brain damage was so extensive that he will most likely die. And in the slim chance he didn't die he would have diminished capacity to the point of remaining as if an infant the rest of his life. No walking. No talking. Being fed through a tube. Possibly breathing through one as well.  At this point we were given one of many he may not make it speeches. Its up to you but... It may be getting to be that time where we make a decision to maybe take him off of life support and let him go. I've never felt so shattered in my life. You want me to make a choice of life or death. This was the first time I got mad at God as well. How could he. I wanted my baby yo live.  

Well i knew with strong conviction that i was going to give him every chance to fight! We would love him no matter what! He survived this long. We didn't give up on him. We let him fight in his battle for life. 

His head circumference kept getting bigger and bigger. So eventually they had to intervene. He started out with what they called a reservoir. It was placed just under the skin on his head with a tube on one end place in the ventricle to allow them to pull off with a needle extra fluid that had built up. They did this several times a week at first. They hoped this would kick start his brain to start absorbing it better, but it would build back up. So eventually they decided to put in a VP shunt that would drain the fluid from his brain down to stomach to be absorbed there. 

NeoSure vs EnfaCare

           VS

So like a lot of mom's that have new baby's in the NICU I pumped my breast milk and froze it for him to have when he could finally eat. Every three hours I headed off to the pumping room for 6 weeks. It was horrible. It was hard to keep my milk with just pumping plus that was time away from Dakota. I knew that I needed to do it so he could have the milk aka "liquid gold" in the hospital. It is the best thing for baby's especially the babies who have a rough start. So I did it. My milk lasted for 6 weeks. Then we switched to "preemie formula". The formula is fortified with extra calories and vitamins to help them gained much needed weight. There are two brands out there, NeoSure and EnfaCare. We used both with Dakota. Our insurance paid for some at the beginning when he came home on a feeding tube. That was nice let me tell you. It is more expensive just like everything else is with a preemie baby. Dakota did ok on both as far as digesting it. The taste was not that big of an issue obviously at first because it went straight into his stomach through the tube in his nose. But when we were trying to teach him how to eat from a bottle the hospital let him try both. It ate so much better when it was the NeoSure. So that is what we used in the hospital and when he first got home. Then when we ran out of what the insurance paid for and went to the store and found out that NeoSure was more expensive we thought we might give EnfaCare another try since it was mostly a taste issue he had before. He did just fine on the EnfaCare and that is what he stayed on until he was one. What one do you use? Why do you like it? Does the cost play a factor in why you use it?

Preemie News

From The Sunday Times

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October 22, 2006

Brief life of premature babies may go unmarked

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Sarah-Kate Templeton, Health Correspondent

BABIES born alive at less than 22 weeks gestation should be treated as if they had never existed, even if they breathe, move or their heart beats, a report by a royal college is expected to say.
Guidelines drawn up by the Royal College of Obstetricians and Gynaecologists (RCOG) are expected to recommend that babies born alive before 22 weeks are not routinely issued with a birth certificate.
Doctors say that even if babies born at less than 22 weeks show signs of life, they are extremely unlikely to survive, so their short existence should not be recorded.
About 300 babies are born every year below 22 weeks. The babies survive for only a few minutes and often die in their parents’ arms. While most of these cases are extremely premature births, they also include up to 50 babies born alive after failed abortions.
The RCOG is expected to say that acknowledging that these babies have been born alive, and having to register the births, causes unnecessary suffering to mothers who wanted an abortion. It will say that babies born below 22 weeks are “pre-viable” and not capable of life.

Although very few babies born below 22 weeks are believed to have survived long-term in Britain, statistics have not been kept. At 22 weeks a couple of babies survive in the UK every year. By 23 weeks, 17% survive.
The suggestion not to count babies born below 22 weeks gestation would prove contentious. Dr Paul Clarke, a consultant neonatologist at Norfolk and Norwich University hospital, said: “I find this incredible and deeply disturbing. To pretend that any foetus was born dead when it was actually born with signs of life, no matter how small or immature, would be a grave deception.”
Professor Stuart Campbell, whose 3D ultrasound images of a foetus sucking its thumb at 14 weeks and opening its eyes at 18 weeks, shifted popular opinion on abortion, said society could not deny that babies younger than 22 weeks had been born alive. “If the foetus is making respiratory efforts, its heart is beating and it is moving its limbs then it is born alive. This seems like trying to deny the truth of what is happening,” said Campbell.
In stating that babies become viable at 22 weeks, the RCOG will also provoke further calls to end abortions for social reasons up to 24 weeks.
Dr Vincent Argent, medical director of the British Pregnancy Advisory Service, is the latest abortion expert to add his support to lowering the upper limit. “It may be reasonable to drop the limit for social abortions from 24 to 22 weeks in view of the expected RCOG guideline on the pre-viable foetus,” said Argent.
Last year 875 late abortions were carried out at 22 and 23 weeks gestation, which would not be allowed if the cut-off point was reduced to 22 weeks.
Abortions would still be allowed up to birth if the baby had a severe disability or if the mother was in grave danger.

Preemie in the News

Sarah Capewell begged them to save her tiny son, who was born just 21 weeks and five days into her pregnancy  -  almost four months early.

They ignored her pleas and allegedly told her they were following national guidelines that babies born before 22 weeks should not be given medical treatment.

Read more: http://www.dailymail.co.uk/news/article-1211950/Premature-baby-left-die-doctors-mother-gives-birth-just-days-22-week-care-limit.html#ixzz0bmrJMhNa

 

This just breaks my heart. Being in the NICU you see so many babies come in after being born.  some so small and so fragile that do better then ones that were not as early as not as small. I understand the side of the doctors and the reasons for why they think this way. Some if not most of these babies will have some type of disability or issue later in as they grow up due to being born so early and so small. But I was a mom who was told by numerous doctors that it is advised to turn off the machines that the odds were to great of him being a baby the rest of his life. I was a mom who chose not to listen to them and to give my son every chance he could to fight in his battle for life. Some days well most days for those 3 months were terrifying of what we could expect him to do. My son now 3 1/2 was just found to be "Normal" with the School District and does not qualify for any type of Special Education assistance. He has some small issues that he has to deal with but he is here still fully participating in life as a healthy "normal" little boy.

 

What the medical guidelines say...

Guidance limiting care of the most premature babies provoked outrage when it was published three years ago.

Experts on medical ethics advised doctors not to resuscitate babies born before 23 weeks in the womb, stating that it was not in the child's 'best interests'.The guidelines said: 'If gestational age is certain and less than 23+0 (i.e at 22 weeks) it would be considered in the best interests of the baby, and standard practice, for resuscitation not to be carried out.'Medical intervention would be given for a child born between 22 and 23 weeks only if the parents requested it and only after discussion about likely outcomes.

The rules were endorsed by the British Association of Perinatal Medicine and are followed by NHS hospitals.

The association said they were not meant to be a 'set of instructions', but doctors regard them as the best available advice on the treatment of premature babies.More than 80,000 babies are born prematurely in Britain every year, and of those some 40,000 need to be treated in intensive care. The NHS spends an estimated £1 billion a year on their care.But while survival rates for those born after 24 weeks in the womb have risen significantly, the rates for those born earlier have barely changed, despite advances in medicine and technology.Medical experts say babies born before 23 weeks are simply too under-developed to survive, and that to use aggressive treatment methods would only prolong their suffering, or inflict pain.

The guidelines were drawn up by the Nuffield Council on Bioethics after a two-year inquiry which took evidence from doctors, nurses and religious leaders.But weeks before they were published in 2006, a child was born in the U.S. which proved a baby could survive at earlier than 22 weeks if it was given medical treatment.Amillia Taylor was born in Florida on October 24, 2006, after just 21 weeks and six days in the womb. She celebrated her second birthday last year.Doctors believed she was a week older and so gave her intensive care, but later admitted she would not have received treatment if they had known her true age.

Her birth also coincided with the debate in Britain over whether the abortion limit should be reduced.

Some argued that if a baby could survive at 22 weeks then the time limit on abortions should be reduced.

The argument, which was lost in Parliament, followed a cut to the time limit in 1990 when politicians reduced it from 28 weeks to 24 weeks, in line with scientific evidence that foetuses could survive outside the womb at a younger age.However, experts say cases like Amillia Taylor's are rare, and can raise false expectations about survival rates.Studies show that only 1 per cent of babies born before 23 weeks survive, and many suffer serious disabilities.

NEC - Necrotizing Enterocolitis

Now you know why they shortened it to NEC, geesh. So this is how joined the gut group of preemies. Dakota was about a week old when they notices his belly was starting to look like it had a big bruise on it. They started getting concerned that there might be some internal bleeding or something going on so they did all the tests, the ultra sound the x-ray and came up with nothing. Well the next night we got a call as soon as we got home saying that we needed to make a decisions. His bowels had ruptured. They did not know to what extent or how much damage had happened. They did know that he already doing very poorly. He was having a difficult time breathing and needing a lot of assistance. (He had three breathing machines at this point trying to get him enough oxygen) And he would need to be transferred to the children's hospital to have the surgery done by a specialist and they did not think that he would make the trip let alone the surgery. He could not be on the Nitric Oxide in he ambulance because they were not equipped for that. We had to make a decision of what we wanted to do.



That was the hardest moment of my life. How could I take him off the machines and let him die. What was the right answer what should we do? I don't want him to suffer. But I don't want him to die? We prayed and prayed seeking guidance. We decided to give him every opportunity to live. He was a fighter. He had already come thorough so many huddles. We did not want to give up on him.

So they loaded him up in the ambulance and we headed up to the hospital. When he first arrived they had to get him all set up and rather then having us in the way. They had us wait in the waiting room. Our parents all showed up for support. They finally let us all go in and see him before they took him down to surgery. There he was this little body sprawled out on this warming bed. This was the first time I saw him our of the incubator. He looked even tinnier. He was strapped down so that he would not grab his tubes and heavily sedated. I got to give him his very first kisses and told him how much I loved him. old him that it was up to him and if his little body could not take it anymore we would understand. But to always remember how much we love him. We walked with him down to surgery kissed him one more time and he was off. The doctors held our little boys life in their hands. I was terrified that would be the last time I got to kiss his warm little cheeks.

We headed up to the waiting room. It was late at night. it was going to be a long long night. The surgery took several hours. We sat in there and said prayers and cried. Finally we got a phone call. He did really good and they were bringing him back up to the NICU and the doctor would be in to see us. She came in and told us that there was minimal damage. They had to cut out the damaged bowel and that took about 6cm. He now had a ileostomy or colostomy bag that his bowel would drain into until it is healed and then they would reconstruct his bowel and put him back together. That would take several weeks. I think it was like 8 weeks before they did this. But he did really well. He is a little fighter. What a miracle our prayers were answered. He still had some fight in him and we were so grateful that we listened and gave him every opportunity and chance to survive and live.


What is NEC? Necrotizing enterocolitis, usually called NEC, is a condition where the intestines become infected and can begin to die. The disease usually affects premature babies, although term babies may also get NEC. NEC is a serious condition that may require surgery, and has a high morbidity and mortality rate.

How is it treated? In the early stages, treatments for NEC include stopping milk feedings to let the bowel rest, giving antibiotics to treat infection, and removing air from the stomach. The baby will receive frequent x-rays to watch the disease’s progress.

If medical treatment is not working or if the bowel perforates, surgery is required. A surgeon will remove any dead sections of bowel and other infected material. The bowel will either be reattached or will be diverted to the abdomen through a stoma. Medical treatments will continue until the disease is resolved.

This information is found here.

Only read what you are dealing with... ya right!

So when we got transferred to the Children Hospital's NICU in order for our to son to get NEC surgery done, they gave us a book and said only read the issues that you need to don't read the whole book. You will get overwhelmed. Well needless to say with everything he had to deal with we read almost the entire book. Plus I am an information research freak and read every book and informational website I could get my hands on. So this knowledge I have gained I feel is information that I can and need pass along to you. I already did the work so why not.

For this first part I want to talk about Medical Complications that your preemie might have to deal with. These are going to be the ones my son dealt with because I can tell you my personal experiences. I am going to site some of the best information that I found from some books and other places and that will be noted, but I want to share my experience with the non-medical jibber-jabber. The information that I provide in not in any way that to be used as a type of diagnosis. This information in solely my opinion and experience. The information that has been sited can be found in the book or other places that I have listed.

One of my favorite books is, Your Premature Baby, by Frank P. Manginello, M.D. and Theresa Foy DiDeronimo, M.ED. I love it. I am going to site it a lot. I highly recommend buying it or renting it from the library.

They start off their medical complications chapter by saying, "...word of caution: Do not read this chapter from beginning to end. Don't let yourself get caught up in the kind of negative thinking that seeks out all the worst possible scenarios and imposes them on the baby. Don't use the information in this chapter to make this time more difficult then it already its."

First off I want to talk about prematurity-related problems that are the most common.

Anemia - You might here them say your child is anemic. I personally think that his is the most common issue. This happens with full term babies as well. Their body's are adjusting. My son seemed to be anemic for the first 6 to 8 weeks of his new life. his levels would get low that they would have to transfuse him or in jibber-jabber give him packed red blood cells. This made me nervous at first. You hear all of those horror stories of blood. You don't know who the person is who donated it... I finally after the 3rd transfusion decided worrying about it was pointless. He needed and that was that. So that was a battle not log lived in my brain. This was one of the hard times though because when they are anemic they prick their teeny tinny heel constantly to check their blood levels. My son still has scars on his heels from this.