Brain Surgery

Jaxon will be having brain surgery on December 13th for his hydrocephalus (http://www.hydroassoc.org/) This is a great resource for information.

The procedure is called a endoscopic third ventriculostomy(ETV). Here is a good website that explains the procedure a little more if you want to read about it. http://www.hydroassoc.org/docs/FactSheet_Third_Ventricular_Endoscopy.pdf. The short version is the Neurosurgeon will make a new hole for the spinal fluid to drain off the brain. Hopefully with an end result of NO MORE SEIZURES!! There are no guarantees, I sure wish there were.

If you are close to Jaxon before you read the above websites make sure you know reading this sort of material is right for you. It's very much an eye opener and I'll admit is a little alarming. Sometimes even I as his mother just want the overview, I don't want to know every detail because it gives me more to worry about. Before Jaxon's heart surgery when he was in the NICU, a nurse suggested watching the procedure on YouTube. Wow I saw about 30sec and knew I would never do that again. It was with good intent I'm sure but really when it's your tiny baby not a good idea. In this case Jason and I read a lot of research notes and case studies to make sure this procedure was right for us. Not everyone is a candidate and many children don't even get the option because they are either to young or it just wouldn't work in their case. I even talked with other parents and adults with hydrocephalus to get an overall opinion. Many of them said "Do it". They all said they would prefer it over a shunt.

Jaxon will have another MRI on Thursday for more detailed pictures of his brain. His last one was done in September in the Topeka ER and it was in what is called 5mm cuts and the Neurosurgeon wants 1mm cuts. The worst part is he has to be put to sleep for the MRI. I hate putting him to sleep.

We ask everyone to say a little prayer for Jaxon on the 13th. He will be staying for at least 4 days in the hospital afterward. I will post when he gets out and update how he is doing. The next few weeks will be hectic with the holidays and appointments to get ready for surgery. I won't be posting until he's out of surgery. Thank you everyone for praying for our little trooper, he needs all the prayers he can get.

Halloween

Jaxon had a great 2nd Halloween. We decided since he wasn't interested in candy and doesn't care about trick or treating we would just visit the grandparents. Much more relaxing for mom also. We visited great-grandma Mullinix and sported his Superman costume. Then we visited great-grandma Kaff and Grandma Tonya. Lastly we visited Papa Mullinix and Nana and Aunt Amanda and the kids brought home Sonic. It was my 1st chance to get to take him out on Halloween.

Prematurity Awareness Month/ Meeting the Govenor

Jaxon met the Governor last week. We were promoting a proclamation signing for prematurity awareness month. Being able to show a child that has been impacted by programs to support prematurity is a real eye opener. The look on the Governor's face when he was told 1 in 8 babies in Kansas are born prematurely was a look of shock. I don't think he realized how serious this is. The March of Dimes scores each state every year by their ability to change these numbers for the better. This year Kansas got a "B" Doesn't sound great but its pretty good considering only 1 state got an "A" Vermont. There were way to many states with "F's"

I had no idea before having Jaxon how much prematurity there really was. So now every chance I get I like to get the word out.

You know you are micro-preemie mom When.....

1.You use strange initials (C-PAP, CCs, NICU, NG) when discussing your child.

2.You actually remember how many CCs make up an ounce....

3.You count his/her weight in grams.

4. The skin on your hands is peeling from washing so often!

5.You hesitate when someone asks his/her age, but you know exactly how much he/she weighs!

6. The answer to "How old is your baby?" is a story 30 minutes long!

7. When someone asks his birthday, you reply, "Which one?"

8. You start to understand some of the things they say on ER!

9. You turn into Kung-Fu Mom when someone tries to touch your baby.

10. You attempt to measure just how much spit-up he/she just had before you clean it up! 11. You know how much he weighs before putting him on the scale at the doctor's office

12. You cry at Maternity Ward and get mad at Baby Story.

13. You see a 7lb newborn and say "Wow! She's so BIG!"

14. Your baby is months old before he can even go to the mall.

15. You have never explained why your baby is on an apnea monitor.

16. When someone says how tiny your baby is, you argue that he is huge -- and to demonstrate, you whip out pictures of him in NICU.

17. You do a health check on people when they come to your house to visit .

18. You make people wash their hands before going near your child.

19. You want to scream when someone says that she just wants to have this baby now - at week 28, 32, or 34.

20. You are so amazed when someone actually tells you your baby is big for his age!

21. You tried to find a place to buy newborn size diapers in bulk.

22. You called half your relatives when the baby grew out of their first pair of pajamas!

23. You never take your child for granted.

24. You worry about RSV season and it is still weeks away . . .

25. You know what "RSV" stands for.

26. You donate his/her tiny clothes to the NICU and marvel that they seem so small - when they were too darn large!

27. Your son gets a simple cold and her doc sees her within the hour!

28. People say, "He CAN'T be __ old...he's too little!"

29. It has taken them 5 months to grow INTO newborn clothes!

30. You pick up 2 pounds of ground beef and think that your baby was born at the same weight

31. You buy "Purell" in bulk

32. You know about oxygen tanks and regulators more than the company supplying it to the airplanes

33. You can stare at your baby for hours when he sleeps