March of Dimes - March for Babies

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click on store up at the top.

HELP SAVE BABIES!!!!!

Our Team Little Hands Big Miracles are selling these bears to raise money for March of Dimes. They are perfect for Easter Baskets!

All Bears are $10 each.
Contact Jen to order:
email her with your order at jaf_angel@msn.com please include shipping/drop off info.

A world of high quality, hand crafted plush animals that are cherished by young and old alike. Each Plushland creation has a warmth and personality all of its own.

These Bears are all about 8” tall

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!!


[ ] medical info sited from © 1995-2008 Healthwise, Incorporated. Healthwise, Healthwise for every health decision, and the Healthwise logo are trademarks of Healthwise, Incorporated.

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.

Moved

I desided to move my preemie blog over here so welcome!!