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.

Is it his shunt?

This is a question Jake and I ask our selves every time Dakota gets sick. I will admit I am the overly paranoid one so I ask the question the most. But hey it freaks me out! So This past weekend Dakota started getting a pretty bad cough which lead to him having a harder time breathing. So we started by giving him his Albutral which end up coming right back up which as soon as that happens I freak out immediately and go straight to IT'S THE SHUNT! He then started acting really tired and just wanted to lay on the couch or have us hold him. Which is completely not normal for him. Even when he is getting sick with a cold he is usually still jumping around and at the very least playing with his motorcycle. He wanted to do none of this so then my mind goes oh no this must be a shunt issue! I have been given all the sign and symptoms of what to look for if he has a shunt malfunction. The most common sighs can be found here. So we take him to the hospital. They do what is called a shunt shunt series. This is some X-rays of the head, chest, and abdomen and a CT Scan of the brain. The results came back that everything looked great with his shunts. They were all intact his ventricles looked good. We even got a phone call from Dr. Kestle his Neurosurgeon and he said everything look good and he sees no problems. He ended up having a bronchial infection and asthma reaction. But that is another post.

So now do I question my mommy sense? Am I crazy to jump right in and assume it is his shunt? If you clicked on the like you would see the signs. They are the same as every other childhood illness he could get. What a pain! I mean this is his brain we are talking about.

This is a really good link to some hydrocephlus facts click here.

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Medtronic BioGlide Ventricular Catheter Recall

So I got a copy of this letter in the mail last week. Also, some of you might have seen this story on the news. Here is what we know. Yes, Dakota has two of these shunts in his head. Not cool. You can see from this letter that they are not wanting to remove them unless they have to. the risks of infection are higher then the risk of an actual malfunction so it is better to no bother it if it is working. We do have a Ct scheduled to check them and make sure they are working. As of right now Jake and I have not seen any signs of his malfunctioning so as of now we are good.

A message from the University of Utah Neurosurgeons and Primary Children's Medical Center to the parents of patients who have had a Medtronic BioGlide ventriculoperitoneal shunt surgery at Primary Children's Medical Center between April 2004 and December 2008

As we are sure you know, ventriculoperitoneal shunt devices can malfunction, and if they do, surgery is often required to repair them. Unfortunately, this is more common than any of us would like.
Recently we have seen seven instances where the shunt tube in the brain (ventricular catheter) has become disconnected from the rest of the shunt. We have only seen this with the BioGlide catheter.

The manufacturer of BioGlide, Medtronic, has recently issued a voluntary recall of all BioGlide ventricular catheters. This means that BioGlide catheters will no longer be used, and the hospital supply of BioGlide catheters will be sent back to Medtronic. The company is not recommending any action in situations where the BioGlide catheter is currently in use by a patient.

If your child has a BioGlide catheter in place, University of Utah neurosurgeons and staff at Primary Children's Medical Center feel that you should be aware of this issue, but they feel that the risk of a problem because of this new issue appears very low. The neurosurgeons are not recommending that these ventricular catheters be removed or changed. If you have concerns, however, the hospital staff would be happy to arrange for a CT scan to check the shunt and the ventricles, without a cost to you.

Here are some questions that you might have:

What part of the shunt is the problem?
In a small number of patients, the ventricular catheter (the tube in the brain) has become separated from the rest of the shunt. It has only been observed in the Medtronic BioGlide ventricular catheters.
What are the chances of this happening?
So far, the neurosurgeons think it is low. Our records show that 465 patients have had one or more Medtronic BioGlide ventricular catheters implanted, and only 7 patients have experienced disconnections. These numbers indicate a risk of less than 2%. As you know, shunt failure is fairly common. After we implant a new shunt, about 35% of them will fail in the first year, and by the end of the second year 50% have failed. The increased risk from the Medtronic BioGlide ventricular catheter is less than 2%, which is only a small change to the overall risk that the shunt will need to be replaced for other reasons. Shunt technology is not perfect, but shunts have dramatically improved the lives of children with hydrocephalus.
Does this type of shunt failure cause any different symptoms than other shunt failures?
The neurosurgeons don't believe the symptoms will be any different. As you know, if a shunt fails, a baby will usually show signs of irritability, sleepiness, or a full fontanelle. Older children usually develop headache, nausea, sometimes vomiting and sleepiness. As always, if your child develops any of these symptioms or any other new problems that concern you, please contact the Neurosurgery office at 801-662-5340. If your child has a medical problem during off-hours, the neurosurgeon on call can be reached through the hospital operator at 801-662-1000. Of course, if your child is acutely ill, you should call 911 or your closest medical facility.
Is the surgery to repair this type of shunt malfunction any different?
The surgery to repair this is very similar to any other shunt revision, except that the ventricular catheter is no longer connected to the rest of the shunt. The surgeons have removed that ventricular catheter if it comes out easily. This has required a slightly longer operation, but the recovery and hospital stay have been similar to any other shunt revision.
My child appears to be fine. Should I have the catheter changed anyway?
As you know, a shunt operation has risks, including a 5% chance of developing an infection. It appears that the chance of a problem if these catheters are left in place is less than 2%. Unless there are problems with your catheter, at the present time, doctors think the risk of removing a functioning Medtronic BioGlide ventricular catheter is higher than the risk of leaving it alone. If your child ends up needing surgery on a different part of the shunt, it would probably be reasonable to remove the Medtronic BioGlide catheter at that time.
Would it help to have a CT scan?
Maybe. If we do a CT scan and the Medtronic BioGlide ventricular catheter looks normal, there is still a very small chance of it becoming disconnected later. On the other hand, if we find that it is disconnected, we would recommend that it be replaced, rather than waiting for your child to develop symptoms.
How do I schedule a CT scan?
Please call 1-888-355-0919 and let a member of our Information Line Team know that you would like to schedule a CT scan and/or a clinic appointment. Our representative will ask you a few questions and then pass along your request to our Scheduling Team. Our Scheduling Team will call you to schedule your appointment. The CT scan will be at no cost to you.

Medtronic BioGlide Information Line:

1-888-355-0919

Call this number to:

• Receive additional information
• Schedule a neurosurgery clinic visit to discuss this issue
• Schedule a CT scan at no charge to you

My PROM Story (Not the High School Dance)

So I am almost 26 weeks pregnant and like most mornings I wake early in the morning on April 21, 2006 with this incredible urge to go use the restroom. I sit up and gush I believe I just peed the bed. But yet I can't stop peeing?! I run into the bathroom and sit on the toilet and still can't stop. I think to my self (real thought) It feels like i punctured my bladder and can not quit peeing. It was early remember. Then I clued in to what was happening and yelled to my husband, "I think I am in labor my water just broke!!!" He sits up and yells a few obscenities of scaredness. Then yells should I call 911? I think that is ridiculous and say, "No!! Call my mom!" I know. I know. You are thinking what is she she supposed to do? But non the less we call my mom and she said I think going to the hospital might be a good idea. So I put a towel between my legs, get into the car and we head off to the hospital. I am freaking out and balling the whole way there. Thinking to my self the baby has got to be alright. Please say the baby is alright.

We get to the hospital. They hook me up to the monitors. And a miracle in my eyes happened, We heard the heartbeat of the baby. They confirmed that yes the my water had broke and my Doctor was on his way. He came and decided that I needed to be transfer ed to a hospital that would be more equipped to deliver this premature of a baby. So the ambulance comes and takes me away. Mind you i have now got a diaper on because I am still gushing.

We get to the hospital and they rush me in and start doing more tests. They hook me up to monitors to see if I was having any contractors. Nope, not a one. Good they said. The baby still needs to grow and the best place for him to do that is inside of you. I was 25 weeks and 5 days along. The odds are not that good that a baby will survive if delivered that soon. These are the odds I was given:

Odds of a Premature Baby's Survival by Length of Pregnancy:

Length of Pregnancy	Likelihood of Survival
23 weeks	17%
24 weeks	39%
25 weeks	50%
26 weeks	80%
27 weeks	90%
28-31 weeks	90-95%
32-33 weeks	95%
34+ weeks	Almost as likely as a full-term baby
Sources: March of Dimes, Quint Boenker Preemie Survival Foundation

A few days and weeks make all the difference. So... I told my self well one day at a time. But I was going to do my best to keep that baby inside of me. They also told me that within 24 hours 50% of PROM cases go into labor and within 7 days 75% to 90% of PROM cases deliver. My chances were getting smaller and smaller by the second. but I was not going to give up. I began to feel guilty. What happened? What did I do? Everyone told me this is not your fault. Nothing you did caused this. We do not know why this happened. But I still felt guilty. I failed. My job was to keep this baby inside of me for 9 months so that he could grow and I failed. So the best thing I could do was keep him in me for as long as i could. So I begun bed rest in the hospital. I knew it was going to be hard. Some days were better then others. You could tell it was a good day because I would do my hair. I made it to 28 weeks exactly. 16 Days in a hospital bed. I gave him 16 more days to grow. I wish I could have done more. I felt guilty that I did not. But I gave him 16 more days to grow.

Medical Info:

Define PROM:

Before a baby is born, the amniotic sac breaks open, causing amniotic fluid to gush out or, less commonly, to slowly leak. When this happens before contractions start, it is called premature rupture of membranes (PROM). PROM can occur at any time during pregnancy.

When PROM occurs before 37 completed weeks of pregnancy, it usually leads to preterm labor. You may hear this early PROM referred to as preterm premature rupture of membranes, or pPROM.

PROM is often unexpected, and the cause is often difficult to identify.

Course of pPROM:

Preterm labor usually begins shortly after pPROM occurs. Sometimes, when a slow leak is present and infection has not developed, contractions may not start for a few days or longer. Generally, the later in a pregnancy PROM occurs, the sooner the onset of labor. Labor begins:¹

• Within 24 hours in 50% of pPROM cases.
• Within 7 days in 75% to 90% of pPROM cases.

On occasion, a leak high up in the amniotic sac may reseal itself so that preterm labor does not start or subsides.

In rare cases, a pregnancy can be carried to term if pPROM occurs in the second trimester.

WebMD Medical Reference from Healthwise

Update on Dakota

Jake took the little guy to Shriner's last week for an evaluation. They did x-rays and he is looking good on the bone part. His muscles are extremely tight though in his legs especially in his hamstrings. As most of you know Dakota was diagnosed with a mild for of cerebral palsy with most of it being in his legs. Which explains why he is still having problems walking. He has what is called Spastic cerebral palsy. [ It results is a condition in which a person has muscle tightness and problems with moving the body. People with spastic cerebral palsy have poor balance and poor coordination, especially in the arms and legs.]

So we are getting him a new pair of leg braces to wear that hopefully will help with this and fit his legs better then the last ones.

And he is going to get Botox injections to relax the muscles in his legs. Yes Botox the stuff you put in your face to get rid of wrinkles. [Botulinum toxin (Botox) has been shown to improve the two main factors of leg spasticity: walking foot pattern and ankle position. 1 But more research is needed on its short-term and long-term effects on leg spasticity in children with cerebral palsy. 2

In most cases, an injectable treatment relaxes tight muscles for a limited time. Alcohol and phenol start to work right away and last about 3 to 6 months. Botox usually begins to take effect within 3 days after injection, although the full effects are often not evident for 1 to 2 weeks. The effects of Botox last for about 4 to 8 months.]

And also at night we are going to put a brace on his knees while he sleeps so they he has to keep them straight and not go into fetal position. This will help keep his muscles stretched out and not relaxed all of the time.

We are hoping that all this will help him. He is doing really well at trying to walk. He loves his walker. He has mastered that and loves that he can get up and go with it. He is going to be starting special Ed preschool at the elementary school in May which will give him lots of time to run around and play with his friends which will be good because mom get boring.

I love him so much and am so proud of him for all of his hard work. I am glad that he came to us. He has taught me so much. I am excited to see where his life takes us. I already know it is going to be quite the adventure with his willingness to try everything and his love of motorcycles. I think it is a clue that it is going to be a wild ride.

Love you Kota!!


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Six Weeks of Waiting

Normally when you have a baby you give birth and they either set the baby on you so you can hold it for the first time or they give then a quick wipe down and they're right back in your arms. So, of course that is what you anticipate and expect for your self when you are going to have a child of your own. Then..., that all changes in a matter of seconds. When you are the mother of a preemie you don't that get special moment.

When Dakota was born they took in by emergency c-section. Know when I say Emergency I have the 4 1/2 inches longer c-section scar to prove it. Then they kind of held him up as they rushed him through the window into the NICU where the "team" would begin to resuscitate my 2 lb 15 oz son.

Then I would begin my wait to share that special moment with my son. Now don't get me wrong I cherished every little second and moment I got to hold his tinny little hand through the small door into my son's incubator. That was the only way I could touch him and let him know I was there. Now a few times I was able to talk some of the Respiratory team to let me "help" them while they were changing his position while on the ventilator. For me I was getting to hold him they just thought I was helping them so they could put fresh blankets under him. It was only for like 5 seconds but I did get to hold him in my hands.

I was not able to kiss my son because he was in his isolette. He could not be out if it for even seconds because his little body could not keep itself warm. But again I got to cheat the system one time. He developed a small hole in is small intestine. He was rushed to Primary Children's Medical Center. And thank goodness we make the decision to give him that chance. Now I can't blame the Doctors for what they did and do not know. My Son still had things to do on this earth and he is a fighter. So right before they took him to surgery they put him on what I like to call a baby warmer. It is kind of like a bigger version of what they put your food under at a restaurant to keep it warm. But the most fabulous thing of that bed was it was OPEN. So for the first time in my life as a mother I got to kiss my 10 day old son. And I will remember that day for forever.

So I still have not got to hold him. 2 weeks, 3 weeks, a month goes past and he is still to sick and still on the ventilator. I keep telling my self to be patient. My time will come. So I would just read books and talk to him. At least he could hear my voice and see that was there. Then one morning I call and ask my mom if she could take her turn of driving me up to the hospital to see Dakota. We get up there and they tell me that they think that today he can be taken off of the ventilator. That his little lungs have grown enough and have gotten strong enough to take him of the ventilator that was helping his lungs to breathe. They took out the tube and put him on a CPAP machine. It worked he was getting stronger.

I was so excited that I did not even realize what that meant for me. About an hour later after they let him settle in and get use to the new breathing mask his nurse asks me the magical question that every preemie mom who has been watching and waiting, trying to be patient, trying to figuring out new ways to show their love, and to comfort them. She asked me "Do you want to hold him?" Yes! Yes! Seriously? Yes! I have never felt such warmth in my heart then that day. 6 weeks after my son Dakota was born then handed him to be. I got to hold him close to my body. Wrap my arms around his tiny little body. I was in heaven. For the first time I got to hold him and feel like his mom.