Friday, March 28, 2008

Our appointment this week

I met with the pediatric neurosurgeon on Thursday. It was an early appointment at 7:45 and Steve was unable get time off of work so a friend of mine from work , Sherrie, said she would keep me company. We left Lincoln around 6:15. It was an early morning for me, especially since my most popular wake-up time is 8:30 :) (I'm definately NOT a morning person)

We met with Dr. Puccioni and his P.A. around 8 am. They were very informative and were able to look at the fetal MRI that I had done around 23 weeks. They said that a MRI would be done on the baby the day he's born and they'll form a plan from there. He said most likely the plan will be a shunt within 24 hours. He also told us shunts malfuction or plug up very frequently. He said we have a 75% chance of the shunt malfuctioning within a year. That was a bit disheartening; but the Dr. said that a shunt is really our only option for a child under a year old. The surgery will take around 45 minutes and he does this surgery very routinely.

Once he hits a year old, we can have a different plan of attack. He states that if/when the shunt malfunctions after 1 year of age he can do what is called an "endoscopic third ventriculostomy" or ETV. Basically this is a procedure that would open the ventricles that are blocked into another area that is not blocked by way of laser. This would end his need for a shunt as the fluid would drain through this new hole to where it needs to go. This cannot be done before 1 year of age because it only has a 20% success rate in children under 1 year old (it frequently closes on newborns). He said his success rate with ETV after 1 year of age is 80%. That was very promising for us.

I hope that's not too much medical jargon; but basically that was the synopsis of our appointment. I was very impressed with Dr. Puccioni; not only for his knowledge; but also his wonderful "bedside manner". I know our baby boy will be in the best of hands when he is born. We have an excellent team set up for the two of us. We are feeling VERY blessed!

I hope our next blog will have pictures. Maybe I'll post some pictures of the fun things the kids are doing!

Wednesday, March 19, 2008

Omaha appointment

We had our appointment in Omaha on Monday with the perinatologist, Dr Bonebrake. He was wonderful. After a very thorough ultrasound, he said that baby looks as if he is doing well. His ventricles and head circumference are growing, but at a steady rate without any rapid jumps. He says that he does not believe in delivering before 37 weeks, and prefers to wait until 39 weeks; which also is a good thing in our mind. We did not want to have him to deal with any obstacles of prematurity and just be able to be strong for his shunt surgery.

We also got a tour of the labor and delivery and the NICU while we were there. That was very comforting to get to meet some of the nurses and see where we will be staying. We were able also to visit with my cousin's husband Dr. Minderman, who is one of the neonatologists at Children's/Methodist Hospital. It will be nice to have a familiar face while at the hospital.

So, really, nothing too new, but thought it was worthy of at least an update

Thursday, March 13, 2008

Another ultrasound today!

Today we had another ultrasound and Dr. appointment to check on this little guy. Nothing much has changed. He ventricles are growing as they thought they would, (as much as we kept hoping and praying they wouldn't). For those of you interested in numbers his ventricles were 18 mm at 20 weeks. Today they were 26-28 mm's and I'm 28 weeks. Normal for any child is less than 10 mm. They told us at 20 weeks to expect 1-2 mm per week. His head circumference was 29 cm which is approximately 4 weeks ahead (measuring 32-33 weeks).

The good news though, is the amniotic fluid around the baby is down to 22. It was 20 at 20 weeks and had jumped to 27 at 24 weeks. Normal is less than 18. Having excess amniotic fluid goes along with hydrocephalus and I was getting a little worried that if it kept increasing at that rate I would be VERY uncomfortable by the end of this pregnancy. My belly measures the same as someone full term already so I didn't know what I was going to look like or feel like by the end, since I still have 11 or so weeks left.

They took more 4d pictures of him, and, my has he changed!! Steve says he looks like Micah now, ha!! I don't know, I just still think he has Megan's nose.

By the way, the "spot" on his head is just where he is smashed up against me, not a matching birthmark with Daddy!

The doctor then talked about going to Omaha and getting the appointments set up for the perinatologist and the pediatric neuosurgeon. His wonderful nurse, Jenny, had the appointments set up before I left. We'll see the perinatologist on Monday and the neurosurgeon on March 27th. I'm looking forward to meeting these people and starting to get some things in line. I'll update on those appointments as they happen.

I'll leave you with one last picture. This is me taken this week. I figured I better take some pic's of this belly before it's over. I had come home from work this weekend and Mason came up to me, lifted my shirt, and exclaimed,


So I guess that should be the title of this picture! ha!

Tuesday, March 11, 2008

Stem Cell Therapy

As some of you may or may not know, our baby was diagnosed with hydrocephalus at 20 weeks gestation. Since this diagnosis, I have spent ENDLESS hours in prayer for this little baby. I have also spent ENDLESS hours on the internet gaining as much information as possible about this diagnosis. I found some very wonderful information on the internet; especially the website that is marked at the bottom of our blog. This website has a wealth of information that one mother with a hydrocephalic child has collected. On this website we found out about a doctor at Duke University who is doing stem cell infusions for babies that have different brain injuries/diagnosis. You can read more about this on the website that is marked hydrocephalus info on the right hand side of our blog; if it interests you. We have been in contact with the doctor at Duke University who does these infusions and will be going out to have this done for our little one after he's born. On the TODAY show this morning, the doctor, Dr. Kurtzberg (the physician at Duke) was interviewed along with a family with a little boy who has/had cerebral palsey. VERY INTERESTING!!! Check it out if you have time.

Monday, March 10, 2008

Baby boy Soldatke

This is a 4d picture of our sweet little baby boy at 24 weeks on February 14th. It look like he has a ton of hair like Megan did. The ultrasound tech says it's just a shadow, but even agreed he probably has hair. It looks like he has Megan's nose too! It's so much fun to get to see him! We have another ultraound this Thursday. I'll put more pics up then!