Our journey to and through hydrocephalus

Last Sunset

2008-12-31T23:38:00.001-05:00

Goodbye 2008!

The sunset was certainly pretty tonight. That's a good sign for the upcoming year, right? :c)

Happy Birthday to my baby!

2008-12-20T22:03:00.004-05:00

Elijah is a year old today! He is a wonderful, happy, little boy who makes every day brighter.

I haven't posted much here, because I've been using our family's regular blog. This blog was to write down the journey with Elijah and, thankfully, that journey has been relatively easy once he was here and had his initial operations. We have been so very blessed. If you'd like to continue following Elijah and our family, you can do so at http://lollipopkids5.blogspot.com/. It's a bit tough to keep one blog updated, let alone two. :cD If ever there are more hurdles for Elijah, I would add that to his story here, but we hope that isn't ever necessary. No news is good news, as they say. I will always leave his story here for those that face the same diagnosis we did with Elijah. I will probably go back and fill in some of the gaps as I have time. Perhaps his story can bring some comfort and hope to families beginning the road of uncertainty and "wait and see".

Thank you to everyone who was there with us, praying for us and Elijah. Those prayers were answered. We couldn't have possibly asked for or gotten a better outcome. He is our miracle baby and we love him more than words can express.

Check-up and CT

2008-12-09T22:15:00.004-05:00

Elijah had a check-up at Duke yesterday and a CT to check and see how things are going.

Everything looks great! Dr. Grant said that it is common for hydro babies to have their head size kind of flat-line for a bit. He said Elijah's shunt was "working in overdrive" so there wasn't much growth outward, but the CT showed one ventricle that was basically normal and the other was only slightly enlarged. His brain was working to fill in the inside instead of growing out. So awesome! He is going to watch the back of Elijah's head where it is a bit deformed. He isn't going to have him wear a helmet because after a certain age it isn't as helpful, plus it is a bit risky to use a helmet on a kid that has a shunt. So, we're going to watch it and hope it evens itself out by the time he is 3 or 4. Another good thing the CT showed is that the plates in his head are not fused, so his head can(and will) still grow. Yay! Dr. Grant was SO impressed with Elijah. He was surprised that Elijah was already discharged from PT. He said that kids with the issues Elijah had at birth normally have several things to work through and need lots of therapy. He said Elijah is blowing all the "norms" for a kid like him out of the water. :c) We went by the Cord Blood and Bone Marrow Transplant office as well and they were equally amazed with Elijah. :c) She said when someone calls the office and they have a diagnosis like ours, she is going to point them our way as an example of how great things can turn out.

So it was a great day and Elijah is perfect. :c) *whew!* Sometimes I feel a bit dumb having concerns that turn out to be nothing, but Dr. Grant, always being his awesome self, told me that it's a very good thing to question everything, that way we won't miss something. He rocks.

Here are some really neat pictures of Elijah's skull from the 3D scan.

Looking at the top of his head. You can see his face at the bottom of the picture. This shows his fontanel on top, his skull sutures(not fused! Awesome news!) and his shunt.

The back of his head. You can see the hole where his encephalocele was and is almost gone! :c)

Looking at the back of his head. You see the encephalocele again and can start to see how the bottom left is a little bigger than the bottom right.

Again from the back. The part on the left is more visible here. You can see both the encephalocele and the fontanel at the top of his head in this picture, as well as his shunt on the right side of the picture.

The white spot is his shunt. You can see another part of it as a white spot on the right of the picture. The dark area is what is left of the fluid in his brain. Look at all that beautiful brain!

This is a picture from his CT when he was born. Look how far he has come in a year!! :cD (His head is the same size now as it was when he was born.) The dark part is fluid. You can also see how thin(and non-existent in some places) his skull was in the back.

He continues to amaze us.

2008-10-28T18:13:00.002-04:00

Elijah is such an amazing boy. He was discharged from physical therapy on the 16th, 4 dys before he turned 10 months old. He is crawling everywhere and even pulling up on things a little. This is a big accomplishment for a baby who had not one, but two reasons to have gross motor delays. We still need to go down to Duke in the next couple months to have a check-up with his neurosurgeon. He will have and MRI as well. We're hoping to have that done here and take the results with us, to make the long day down there a bit less long. I'm really curious to see how much his brain has changed and expanded.

It just amaze me that a little boy who had more fluid than brain when he was born and who had part of his brain tissue removed is now just like any other baby his age. He is such a miracle. :c)

Oh wow! It has been a LONG time!

2008-09-15T13:17:00.005-04:00

It's been a bit over 4 months since I've posted. The summer was busy and slightly chaotic, but very normal... for a family with 5 young children. :cD Elijah has been growing like a weed! He hit 5 months old and just took off. He will be 9 months old on Saturday. Once he started gaining weight, he also started catching up in the motor skills department. He started sitting up one day out of the blue at a physical therapy appointment. Before the appointment, he would topple over within seconds, but that day at the appointment in August he sat for 5 minutes! He doesn't really sit for much longer than that now, but I think that's because he has other things he wants to do and gets distracted. He forgets that he's in charge of his own body. :c) He's working on crawling now. Actually, I was told by his physical therapist that the real term for moving around on his hands and knees is "creeping". "Crawling" is what Elijah is currently doing when he does his little inch worm floppy thing to move around. It's not fast or all that pretty, but it's effective. Anything 6 inches off the ground and below is in danger.

We haven't had any visits to Duke or his neurosurgeon since his CT and check-up in April. That is AMAZING. We are so blessed and thankful for Elijah's good health and good fortune in the function of his shunt. We will head back to Duke sometime this fall for an MRI(which we may actually do locally and take the results with us) and a check-up with his neurosurgeon. We'll also visit Dr. Kurtzberg(who did Elijah's stem cell infusion) while we are there, so she can see the great progess he has made.

The last scab *finally* fell off the back of Elijah's head about a week ago. Yay!! That sure took a long time! There is actually a new tiny little bit of a scab where the old one fell off, but it's really small and not as thick. I think it's only there because the other scab was thick and had been there for so long, the skin couldn't breathe. I'm sure it won't stay for another 8.5 months. ;c)

Elijah may also be discharged from physical therapy soon! He is almost caught up with his age group! This is really exciting! If he every runs into problems or falls behind again, the PT could start back up, but that isn't very likely. He's not officially "crawling", pulling up on things, or standing while holding onto something, but then he is only 9 months old. ;c) One thing I am adjusting is my thinking of when babies do things. All of my other children were walking before they hit 10 months. I know, that was really early. Still, when you have had 4 kids all do the same thing, it's hard for that to not be an expectation with #5. Elijah won't be walking within the next month, but I have altered my expectations. He is doing wonderfully and is almost right on schedule according to when babies do things on average. I have no complaints!

Elijah has the sweetest disposition. He is always so happy and smiley, unless it's dinnertime and you aren't getting the food to him fast enough. Boy does he love to eat! We call him Pteradactyl Baby because of the sqwaks he makes when he wants something and you aren't fast enough. Dinnertimes are especially noisy. I hope he develops a little bit more patience in that area soon, because when you add his noise to the noise of 4 other children, I almost need a good dose of Advil when it's all over. :cD He is also amazing at going to bed. He has been the easiest of all the kids. Since he was about 5 months old, we can snuggle him, sing to him, then lay him in his bed wide awake and he simply goes to sleep. It is the most amazing thing I have ever seen, especially after having 4 other kids who never did that. He wakes up once or twice a night to eat, but is in bed from 7pm to 6:30-7am. It's fantastic. :c) Now, if I would just go to bed a little earlier, instead of staying awake until midnight, then I would be a bit more rested. He is a very good napper, too. He takes two naps every day that are each 1.5-2 hours long. Occasionally he will cut one back to just an hour, but that is not the norm.

We are enjoying ELijah so very much! He is absolutely wonderful. He says, "dadadada", laughs easily, gurgles and coos. He loves to chomp on my chin and just slobber all over me in general. He loves his brother and sisters and they love him. He lights up when he sees his Daddy. We are so very grateful to have him in our family. :c)

Almost 19 weeks

2008-04-30T10:58:00.002-04:00

Sorry for the big delay in updating. I'm finding life with 5 kids to be a bit busy. ;c) Elijah will be 19 weeks old tomorrow and couldn't be doing better. He still has physical therapy twice a month, but he is improving and doing remarkably well. He rolled over from his tummy to his back a couple weeks ago during his PT session! He holds his head up well now while on his tummy and turns to look at things. He isn't able to hold and play with toys yet, but we'll get there. Each time the PT comes, she tells me a different side of the head to have Elijah lay on. All this rotating is helping his head shape up nicely. I prop him onto whichever side he needs to lay using rolled up receiving blankets. Right now we're trying to get him to lay on the back left corner of his head, which is also where most of his fluid is, to try and get that to flatten out a bit.

Elijah's colicky spell finally ended sometime between 3-4 months. One day he was just all better and didn't scream all evening. He started going to bed at a reasonable time(instead of midnight). He started taking a regular morning nap. It's been really nice. He still wakes up every 2-3 hours to eat during the night, but that is better than having to be nursing practically all night long. He doesn't have long wakeful periods. About 1.5 hours is his maximum awake time before he needs to go to sleep again.

The back of his head is very nicely healed(almost, there is still a small part on top that is scabbed). His shunt is working well. We had a check-up at Duke mid-April with a CT scan and found that his brain is expanding as it should, especially on the top and sides. There is still a fair amount of fluid in the bottom left, but it's slowly draining. He is doing so well that instead of going back in July for another check-up and an MRI, that has been postponed until October/November.

Elijah had a bit of conjunctivitis a month or so ago that has since cleared up, but left him with a clogged tear duct. It seems to be getting better, though. I have strep throat right now and I'm just hoping Elijah doesn't get it.

Elijah is a very sweet little boy. I love him to pieces. I am so glad hes a part of our family. :c)

12 weeks!

2008-03-13T09:30:00.003-04:00

Elijah is 12 weeks old today! It's hard to believe it's been that long already.

All of his stitches have been removed, so he is stitchless. :c) The last one was a bit stuck, so it took some convincing. The poor boy. :c( Thankfully they are all out now and hopefully there won't be any more need for stitches. The incision site has healed up very well. Now we are just waiting for hair to grow. ;c) I've never posted pictures of his encephalocele repair site. Perhaps some day I will now that it is healing up.

Elijah's first appointment with the physical therapist was last week. It was an evaluation to see how much they would need to work with him. The PT will be coming once every 2 weeks. We're going to start working to strengthen his neck muscles. The report said he is stuck in some areas at the 1 and 2 month stages. He has mild torticollis and mild plagiocephaly that the PT thinks can be corrected with positioning, so he shouldn't need a helmet. All very exciting news!

Elijah is still very touchy and cries a lot. The PT and his pediatrician think he probably has some sensory issues. Perhaps it is related to the brain tissue that was removed to close the encephalocele, perhaps it's related to the hydrocephalus, perhaps not. Who knows. I'm trying to deal with it the best I can. It's hard to listen to a baby cry so much. My biggest wish is just for some sleep. The sleep deprivation is hitting me hard. I don't even care if he doesn't sleep through the night, I would just love for him to sleep in his own bed for even just a couple hours at a time. That would be bliss. As it is we are up every hour to hour and a half all night long. *yawn* Actually, what I wish for the most is that whatever is making him so miserable that he cries would resolve so he can be the happy baby I get glimpses of from time to time. He can be so sweet and happy. He has the biggest smiles. I wish I knew what to do for him when he's so upset.

And now my time is up because Elijah is "calling" for me. I know I owe a couple people some emails. I will email you back, I promise! My two-handed typing time is limited. ;c)

February Update - LOL

2008-02-26T09:44:00.003-05:00

Some day I may get better about updating more frequently. Then again, perhaps not. :c) Things have been going well. No news is good news! Elijah's shunt is working perfectly. We still hold our breaths a little whenever he is extra fussy or doesn't want to eat for some reason. Perhaps when we make it to 6 months of the shunt working as it should, we will relax a bit.

This morning Elijah is being evaluated for early intervention services. We will get an idea of any areas he is delayed and what services he needs to work on those areas. He'll be evaluated every 6 months or so until he is 3 years old. Hopefully this will give him the good start he needs to be on track with his peers and lead a "normal" life.

Oh! And Elijah only has one stitch left in the back of his head. We are almost stitchless for the first time in his little life!! Yay!

I owe you more pictures. ;c) Elijah is growing up quickly! He's losing that newborn look and looks more like an infant every day.

Another check-up or two

2008-01-29T10:17:00.001-05:00

We'll start with a little brotherly love. ;c) Elijah had check-ups with the neurosurgeon last Wednesday and yesterday. He is still doing really well! He is gaining and growing even in just these last 5 days. He now weighs 10 pounds 2 ounces and is 22.25 inches long. His head is slightly up to 40.5cm, but everything looks great. His shunt is still functioning perfectly.

They took out half the stitches from the encephalocele site yesterday. If those hold well over the next couple weeks, then the rest will be coming out. I'm excited at the thought that we may be stitchless sometime soon!

Elijah will be 6 weeks old on Thursday. It is amazing how well he has done. We have been very blessed. The beginning was nerve-wracking, but went so much more smoothly than we ever could have dreamed. We hope and pray that things continue along as they have. We would love to not need a shunt revision anytime in the near future.

This was Elijah right after he was born.

And this is Elijah now. :c)

So much to update!

2008-01-17T15:34:00.000-05:00

I'm so sorry for the long delay in updating. Things have been a bit busy around here, as you can imagine. :c) I'll give a brief summary and then fill in more details as I have time.

The amnio on December 18th showed Elijah's lungs were just about ready. The doctor that would do the c-section said that by the 20th they would be fine, so we were set to go for the c-section. We headed down to Duke on the 19th to spend the night and headed to the hospital on the morning of the 20th.

We were originally scheduled for a 10am surgery, but got bumped due to an emergency. Everything went well once we were going and Elijah was born at 12:39pm on Thursday, December 20th. He weighed 10 pounds, 7 ounces.

We were surprised to learn that the reason his ventricles had stopped growing and the reason the right was so much smaller was that he had an encephalocele on the back of his head(the right side) that was leaking fluid. It must have started leaking around the time the head stopped getting larger. There was no skin or skull covering the brain membranes at that spot, so there was a bit of brain membranes and tissue poking out of the hole. It was scary to learn about the encephalocele, but we feel it was a blessing. It was because of the encephalocele that the brain was under less pressure and was able to expand more than they thought it would. It was because of the drainage that his head was only 17 inches(43.5cm) when he was born.

Elijah was able to have his first meal the Sunday after he was born. He got a bottle of expressed breast milk and had no problems drinking from the bottle. I was able to nurse him for the first time at noon the next day - he was 4 days old. Elijah surprised everyone by doing amazingly well. We were out of the ICN at 7 days and headed home after only 8 days in the hospital.

His shunt is working very well. The plates on his head are now overlapping, leaving ridges, but his neurosurgeon says they should move into place as he grows. His head circumference varies from the day and time of day, but ranges from 39 to 40cm. He has a large incision up the entire back of his head from the encephalocele repair. It was this incision that sent us back to the hospital.

On January 4th-5th, a stitch in the middle of the incision popped free from the other side, leaving a wide hole. Since there is no skull under this section, the hole lead right in to his brain membranes. We headed back to the hospital for another surgery to repair the repair. ;c) This went well and we were home on January 9th. The incision is looking much better now and is healing well.

That brings us up to now. Elijah is a sweet boy and is healing well. It's different being a new mom to him than it was for my other 4 kids. I try not to, but I wonder when the shunt will fail, as it's a fairly good chance it will fail at some point sooner rather than later. I'm extra cautious with the back of his head, because we don't want another popped stitch and another surgery. The skin is under tension there and he tends to rub the back of his head. We try to keep it covered with hats to help keep things from rubbing the stitches. We don't want one to get snagged on something and pull out. Elijah is fussy at night which makes me wonder if it's a normal newborn fussy or if it's pressure related. He wakes up some mornings with the soft spot bulging at the front of his head, so I wonder if sleeping flat increases the pressure. Perhaps he should sleep at more of an incline. Once I sit him upright, it goes down.

I'm trying to just take things one day at a time and not stress too much. Elijah is a wonderful little guy and I just want to enjoy him. :c)

I have pictures to share, but will make a separate photo post for those.

Still Pregnant

2007-12-14T18:52:00.000-05:00

On Wednesday(at 36 weeks, 6 days), we had the amnio to see if the baby's lungs were ready for delivery. They weren't, so our c-section for Thursday was canceled. :c( We'll have another amnio on Tuesday and hope for lung maturity. If he's ready, we'll have the c-section on Thursday morning.

The lung maturity is a big deal, especially for babies with hydrocephalus. In short, if there are issues with the lungs, they wouldn't be able to treat the hydrocephalus because of the problems resulting from lung immaturity and things they would have to do to treat that. It's better for the baby to stay inside, even with the progressing hydrocephalus, then to be born with lung issues and not be able to treat the hydrocephalus.

We also had an ultrasound on Wednesday to check on things. The combined ventricle size is now 85mm. His head is around 19 inches. He is estimated to weigh around 9.5 pounds. His abdomen is measuring at 40 week size. He's a big boy. :c) Now his lungs just need to get ready so he can be born.

One week

2007-12-05T21:14:00.000-05:00

About this time one week from now we will be at the hotel down in Durham. One week from tomorrow we will wake up and head to the hospital. One week from tomorrow we will meet our son.

I can't believe it is one week away.

Part of me really isn't ready. I would give anything to have a few more weeks of him growing where he should be, then have the simple delivery and easy recovery I have had before. We would leave the hospital the next day, not weeks later, and I would go home with a happy, healthy baby. It's hard to give up on the idea of the "normal" pregnancy and delivery, even when you have had over 16 weeks to get used to it.

The other part of me is really ready. I'm ready to meet him and start to do something to actually help him. I'm ready to not be hugely pregnant and uncomfortable anymore. Yeah, I know recovering from a c-section isn't a party, but at least it would be a different kind of pain and one that would be dealt with by copious amounts of pain medication. :cD I'm ready to get rid of the heartburn and nausea. I'm ready to get rid of the insomnia and trade it for pumping and feeding a newborn every 2 hours. I'm ready to be done with the contractions. I'm ready to be done with getting up to pee a gazillion times a night. And oh how wonderful it will be when my c-section is healed enough to be able to sleep on my stomach again. Aaaaaahhhhhh.

Ready or not, in a week this show is really going to get on the road. I am eager to meet my son. :c)

Single Digit Countdown

2007-12-04T20:58:00.000-05:00

I had my last check-up with my regular OB today. My next appointment is for the amnio and was moved to Tuesday. If that comes back well then it's down to Duke on the 13th for the delivery.

Only 9 more days. I think I can. I think I can. ;c)

Less than 2 weeks to go

2007-11-29T21:22:00.000-05:00

I should have updated long ago, after our visit to Duke, but we've been trying to get things ready and I've just been trying to make it from one day to the next.

The visit was wonderful. We spent the whole day going from one appointment to the next, meeting with one person after another. By the time we left we were very comfortable there and knew it was the place for our son.

His hydrocephalus is progressing, of course. At this point you would expect nothing less. At the time of our visit(32 weeks 4 days) everything was basically measuring full term. It was a lot of walking around that day, even though they did try to minimize that as much as possible, so I ended up with Braxton Hicks contractions for almost the entire 3 hour ride back home.

We are set to have an amnio on December 12th. I will be 36 weeks 6 days. As long as everything is good with that, we will be heading down to Durham that afternoon. I'm scheduled for a c-section on the 13th. The shunt surgery is scheduled for the 14th as long as the baby is healthy and ready for it. The stem cell transplant will occur a few days after the shunt surgery. Hopefully we will only have to spend a week or less in the ICN(intensive care nursery) before we can be moved out onto the pediatrics floor. The length of our stay will be determined by how well the baby does and how well he learns to eat. We've been told to expect about 2 weeks as an average. If you've been given a diagnosis of fetal hydrocephalus you learn very quickly that the one thing you know for certain is that you really don't ever know anything for certain.

I think we're pretty set for the baby to come. We've been wondering if he is going to wait until the scheduled day at 37 weeks, but I think he probably will. That's a good thing for him because it means he will be less likely to have big feeding issues. Even being born one week earlier would increase those risks, so anything we can do to help shorten our hospital stay is something we will try to do. One more week inside me to save a couple weeks trying to get him feeding as he should is something I'm all for doing.

Something I hear a lot these days is how people know someone with hydrocephalus and they are fine or how some baby developed hydrocephalus, was shunted and is fine. I am so very happy for the good outcomes and we certainly hope for the best for our son, but all cases of hydrocephalus are certainly not the same. There are many different causes that will impact the outcome. Also, fetal hydrocephalus is a different thing than a preemie that develops it after they are born or a baby or child that develops it even later. In the cases of hydrocephalus when it comes on after birth, is caught early and is shunted, the brain had all the time in the womb to develop as it should have and it was never compressed for a sustained period of time. In the case of congenital hydrocephalus, the time when the brain is developing and growing it is also being compressed. The baby is born and instead of having a normal brain, it is a thin, compressed ridge that runs around the inside of the skull. It is only after the shunt is installed and the fluid can slowly start to be drained that the brain will try to expand to where it should have been. There is a great risk of brain damage because of the length of time it was compressed. One never knows if it will get to where it is supposed to be. You can only hope the miraculous organ that is the infant brain will repair itself so the child can live a normal life.

There are indeed plenty of cases of people who had congenital hydrocephalus that go on to live a normal life. There are also those that suffer severe brain damage. You won't be bumping into them on the street or in your daily life, for the most part, so of course the people that you will meet and talk to that have congenital hydrocephalus will be those with a good outcome.

We certainly want the best outcome for our son. It's for that reason we are making the drive to Duke, delivering 3 hours away from friends and family. It's for that reason we are having the stem cell transplant done for our son. We want to give him every chance. We hope for the best, but we also realize that the road to get there will be long, probably years long before he is considered at the same level with his peers.

On our way

2007-11-01T11:21:00.000-04:00

We have appointments set up down at Duke! We'll be heading down there on the 11th, since our appointments start around 8:30am on the 12th. We're packing a lot into one day, but that will save us some trips down the mountain. We'll be having another ultrasound, meeting a high risk OB, taking a tour of the NICU and birthing area, meeting the neurosurgeon and meeting the doctor that does the cord blood research.

I continue to have a lot of Braxton Hicks contractions, heartburn and general discomfort. Only about 5 weeks to go now.

More Progression

2007-10-26T09:29:00.000-04:00

We had another ultrasound this past Tuesday at 29 weeks, 5 days. The hydrocephalus continues to progress. The left ventricle is now 45mm, the right is 27mm for a total of 72mm. His head circumference is 31.5cm, about that of a 36 week baby. I also had a regular OB check-up. My belly is measuring a month ahead of dates, due to the larger size of the head. It's no wonder I've been feeling large and uncomfortable. I'm measuring as if I were 34 weeks.

We've been looking into different delivery and doctor options. We are going to be headed down to Duke University to talk with people there. We will most likely be delivering there to have the shunt operation and a cord blood re-infusion done. They will take our son's cord blood when he is born and then give his own stem cells back to him after his shunt operation. The doctor doing it has been researching the effects of cord blood re-infusion on pediatric brain injuries. She has had a lot of success with it. We're hoping it can help our son's brain heal after the pressure and fluid go down. It may not help at all, but there is no risk, since they are his own cells. Duke University is 3.5 hours from our home. It will be a challenge and I will be away from home from the birth until the baby comes home from the hospital, which will probably be at least 2 weeks and could possibly be a month or so. We think it is worth it to have a bit of challenge in the beginning if it gives our son a better chance for a good outcome down the road.

Since our son's head is already that of a 36 week baby and we still have 6 weeks to go before the amnio to check for lung maturity, a c-section is pretty much a sure thing. His head will likely be around 19-20 inches(a complete guess, of course, since there is no way for them to know for sure) in circumference. After 4 vaginal and easy deliveries, the idea of a c-section is one I am still getting used to.

I was linked to a wonderful website recently. Fetal Hydrocephalus This mom has done a fantastic job of telling her story and giving great information. A week ago, I met the mom who created the site and her son. She is fantastic and was so helpful and her son is a sweetheart. If you want to understand hydrocephalus a bit better, that is a great website to read.

The beginning of the journey

2007-09-28T18:30:00.001-04:00

I want to post to this blog as things happen so that I don't lose details and emotions. So much has happened since that day almost 6 weeks ago when we first learned of our son's condition. It would be difficult and time consuming to go back and make a post for each event. This post will catch up to where we are right now, but will lack all the emotional struggle up to this point. It's been a rollercoaster and will continue to be for a long time to come, I am sure.

We learned at a routine 20 week ultrasound in mid-August that the baby boy I am carrying has severe hydrocephalus. Since then we have had two more ultrasounds to check the progress of the hydrocephalus, an amniocentesis to check for chromosomal issues(none were found), a fetal echo cardiogram to make sure his heart is ok(it is!) and an appointment with a pediatric neurosurgeon to discuss the condition and the baby's birth.

At the first ultrasound, the left ventricle was 16mm. We weren't told the size of the right, but perhaps it wasn't enlarged at that time. The next ultrasound was two weeks later at the perinatologist's office(high risk OB) to confirm the diagnosis and check for other issues. The left ventricle was 22mm and the right was 17mm. The baby's spine looked great and there were no signs of Down's syndrome. An amniocentesis was also done that morning to rule out conditions like Down's Syndrome, Spina Bifida and other trisomies along with any other major chromosomal problems or infections. The results came back that our son looks great chromosomally as well and has no infection that might have caused the hydrocephalus. At that point we can be pretty confident that this is a case of isolated hydrocephalus, most likely caused by aqueductal stenosis. What that means in basic terms is that a small duct that allows the cerebrospinal fluid to drain from the 3rd ventricle to the 4th didn't develop adequately or is in some way blocked causing the fluid to back-up into the other ventricles.

This past Monday we had another ultrasound to check the progress. We will have an ultrasound about every 3-4 weeks from now on to keep up with the progress. On Monday, the left ventricle was almost 32mm and the right was pretty much unchanged at 17.5mm. In a healthy baby, the ventricles are not supposed to get above 10mm each. Our son's head is measuring at 30 weeks, while his body is measuring at about 26.5 weeks. The pregnancy On Monday, the pregnancy was 25 weeks 4 days along.

After the ultrasound, we met with the perinatologist. The funny thing about each appointment is that nothing is ever sure. Everything is "wait and see" because it all depends on how this progresses. The general plan, however, is that at around 36 weeks, we will have another amniocentesis to check for lung maturity. If the lungs are ready, our son will be born. This will most likely happen by c-section, since the head will continue to grow over the next 10 weeks and will be larger than that of a full-term baby. After he is born, he will be assessed by the pediatric neurosurgeon. If a shunt would help his condition(it most likely will), then he will be scheduled for the surgery within the next day or two. Again, this is what we think might happen. Everything is subject to change. If the baby isn't healthy enough at birth for the surgery, they can temporarily relieve some of the pressure on the brain by doing a ventricular tap to drain some of the fluid. This will give him time to become healthy enough for the surgery. They can do serial taps if he needs more time.

Of course, this whole plan assumes that he won't decide to come earlier. One just never knows. Also, we don't know if the hydrocephalus will progress to a point where he will need to come out even earlier so that he can be treated. It's just wait, watch and see.

What we know for certain: The baby will not go to term. I will deliver in a hospital an hour away where the NICU unit is located and where the shunt operation would also take place, if it is deemed necessary(almost for sure it will be, but you can't say for certain until he is here). It will take time, months or perhaps over a year, to know if the baby has any permanent brain damage from the hydrocephalus. The excess fluid will need to be drained slowly. If it is drained too quickly it could cause bleeding in the brain or the ventricles to collapse. Once he is here, we will continue the "wait and see" game.

Why the blog?

2007-09-28T18:19:00.000-04:00

I wanted to create a public blog of this journey, because as I searched the internet for information and the stories of others who had been through a similar trial, it was difficult to find the real experiences of people. I wanted to read the details of what others had been through so I could have some idea of what I could expect. I wanted to read that others had gone through the same experiences, emotions and difficulties that I am currently experiencing. I have found here and there the story of someone's journey, but they are few and far between. Often they are dated and short on details. It is my hope that by opening my story up for everyone to read that it can in some way help another woman who hears the same news that her child has hydrocephalus. I'm not a great writer. I'm just a mom facing a challenge and trying to turn it into something good.