Wednesday, June 25, 2008

One month old!!

Matthew turned 1 month old on the 20 of June (friday). And in true fashion of a mother with 4 kids, I'm just now getting pictures I took of him that day! We were in North Carolina that day and he was wide awake, I couldn't resist some pictures.

Now these next pictures are especially for Grandma Shumaker. She tried all day Sunday to get pictures of him with his eyes open. Well around 1am that night (really early Monday) he must have decided he would comply with her request (a little late) as he was WIDE AWAKE for 3 hours!!! So, I took pictures!

Sunday, Mom and Dad had a party for us so that everyone could come see Matthew. It was so much fun and so good to see everyone. Matthew got to meet most of my aunts and uncles, two cousins of mine, three second cousins and even Matthew's great grandparents. He also got to see some people from grandma and grandpas church! What a great time we had!

Tuesday Matthew had a CT scan and then saw the neurosurgeon. He said everything looks good, but wanted to turn down the shunt a bit as one of the sutures on his head had a little ridge where one plate had sunk under the other. Turning it down will help that a bit as it will drain less fluid. It really is a balancing act, and we can always turn it back up if needed. It's a very simple procedure and takes seconds and painless. It's just controlled with a magnet. Early intervention came over late Tuesday afternoon and OT will start coming every 2 weeks to work on strengthening neck muscles, and any other needs that will come up in the future.

Sorry I have not been updating the blog as much as I used to. Having 4 children is truly a joy, but between them and the doctor's appointments, we have been VERY busy. I can say that no news is going to mean good news!~

Thursday, June 19, 2008

Our Duke Visit

Well, we're in North Carolina! Our plane got into Durham on Wednesday at 1:00. Both our planes left on time and it was a nice trip. Matthew flew really well. He slept the whole way on both planes.

We didn't get much sleep the night before as we had to be up at 2:30 am to leave at 3:15 so we could get to Omaha around 4:45. So we ended up lounging around the hotel for the day and ordering subs for supper. We also called Owens mommy, Michelle, who started a website about her son , which is how we found out about going to Duke and getting Matthew his stem cell infusion. Without her hard work with this website, we wouldv'e never found out about it. Owen received the first stem cell infusion for hydrocephalus in September 2006. Matthew is the 9th baby who has received stem cells specifically for hydrocephalus. I visited with Michelle and made plans to meet her family tomorrow at some point. Owen is currently in the hospital at Duke because he had a shunt infection and had his shunt replaced on Wednesday.

This morning we headed over to the hospital around 7:30 to have breakfast before our 9 am appointment. After breakfast, we had some time, so we went up to see Owen, and his mom and dad. We got some pictures of the boys together.

We had our 9 am appointment with the nurse practioner and then headed back to Owens room to hang out until our infusion appointment at 1 pm. It was fun to meet Michelle and Chris and Owen. They are such a nice family and we had a great time! We were even privledged to get to eat lunch with Michelle while her husband Chris stayed at Owen's bedside.

Dr. Kurtzberg came to give his cells around 2:30. After his IV was in, which Dr. Kurtzberg started herself, it was only like 15 minutes and his cells were infused. We stayed around for 4 hours afterwards so he could get IV fluids. They add a additive to his blood called DMSO that had to be flushed out of his system. My understanding is that DMSO was added to the blood before freezing to keep the blood cells from crystallizing. The additive makes the recipients breath smell exactly like creamed corn. No lie, creamed corn. And let me tell you, it is just EXACTLY like creamed corn! Bizarre. He will smell like that for around 24-48 hours.

Here's a couple pics with Dr. Kurtzberg, June(Dr. Kurtzberg's nurse and right hand woman) and Matthew

Matthew was very feisty and DID NOT like to have his arm held down during the infusion. A pacifier dipped in sugar water did the trick though to settle him down. We'll never know the extent this procedure has helped Matthew, but we will always know that we have done everything in our power to help him have a life with as few disabilities as possible.

We got back to the hotel around 8 pm and we were tired and hungry. We ordered pizza and settled in for the evening. Tomorrow we may do some sightseeing, or just lay around or a little of both.

Friday, June 13, 2008

Lisa, a cyber friend of mine who has 3 beautiful daughters, tagged Mason to do this cute little survey. It was fun to ask Mason the questions and I think when my sleeping beauty (Megan) wakes from her slumber, I may ask her these questions, too.

1. What is something mom always says to you? "I love you"
2. What makes mom happy? "Kisses"
3. What makes mom sad? "If I say, I don't love you"
4. How does mom make you laugh? "tickles me"
5. What was mom like as a child? "she was laughing'
6. How old is your mom? "4"
"7. How tall is your mom? "Huge"
8. What is her favorite thing to do? Drink pop"
9. What does your mom do when you're not around? "Make supper."
10. If your mom becomes famous, what will it be for? "being a beauty"
11. What is your mom really good at? "making supper"
12. What is your mom not very good at? "i don't know
13. What does your mom do for her job? "she talks with people"
14. What is your mom's favorite food? "eggs"
15. What makes you proud of your mom? " I don't know"
16. If your mom were a cartoon character, who would she be? " Pablo from the backyardigans
17. What do you and your mom do together? "Make lunch"
18. How are you and your mom the same? "We have the same ears and eyes"
19. How are you and your mom different? "You have black hair and I have gray hair."
20. How do you know your mom loves you? "cuz she loves me."

Thursday, June 12, 2008

Cutest baby in the world!!

We had professional pictures taken yesterday. If you would like to see them go to
www. (sorry my link wouldn't work) and then click on "portraits" and then click on "clients". When it asks for a password, put in msoldatke . It may take awhile as there are 116 pictures!! Seriously, Paula takes the best pictures in Lincoln and she has a HEART OF GOLD. She is worth EVERY penny. Now remember these are just raw pictures and she does an amazing job of touching them up. She came to our house (normally you go to her studio, which is beautiful) because she was nervous about us taking Matthew out-since we are trying to be careful to not let him get sick. So normally she wouldn't have to edit out the cat and the occasional stray item in the pictures as you'll see in ours! The awesome thing is we'll never see these imperfections in the final pictures we order. Now the hard part, picking which ones we want! Enjoy!

Tuesday, June 10, 2008

Where is the time going??

I can't believe it's been almost a week since I've updated the blog. It's gotten busy here. Matthew has kept his mommy busy.

Friday the home health nurse came and when she weighed him, he had lost weight (only 1 ounce) but it was concerning since he should be gaining weight. Dr Springman called me and wanted me to go over to a place called "Milkworks". It's a shop here in Lincoln that specializes in babies and breastfeeding. It is staffed with a pediatrician and lactation consultants. It's a wonderful resource that, as a nurse, I often refer new parents to when they are taking their baby home and have questions concerning breastfeeding.
Anyway, they had me weigh him before and after I fed him to see how much he was "getting" when he ate. They were satisfied with what he is getting but thought it would be a good idea to rent a scale for the week and take it home to keep track of how much he was eating with each feeding. So, a little extra work for me. Weigh him before and after each feeding along with keeping track of all his wet and poopy diapers. Dr. Springman wanted all that information for our Monday appointment. So that's what we did the whole weekend. I thought I was going to go crazy keeping track of everything by Sunday night.

Saturday afternoon we went out to friends house for supper and some fun at there acreage. They had a kiddy pool set up and the kids played outside and we grilled for supper. The kids had a great time and slept good that night.

Monday we had a Dr. appointment at 4 pm. They checked his weight (up 2 ounces, yeah!!!) and then drew some blood work to check his level of phenobarbital (medication for seizures). They also did his circumcision (ouch!!). They had not wanted to do it at the hospital because of everything he'd been through. So everything went relatively well and we don't have to see her again for 3 weeks unless there is a problem. yeah! As much as we absolutely LOVE our pediatrician( she it the ABSOLUTE best), it's a hastle to take four kids to the doctor.
We did get a phone call from the Dr.'s office today; his phenobarbital level was perfect.

The most exciting news. Duke called us today and WE'RE GOING TO DUKE ON JUNE 18TH--YEAH!!! I bought plane tickets today, and the Lord has blessed as we found tickets very inexpensive, I couldn't believe it. We will be flying american airlines, and they started charging for baggage as of Sunday. so we'll be packing LIGHT!! I'll have to give up packing 3 outfits for everyday, :) I think the baby will probably have more clothes than me!!!

Today, the home health nurse came again and he was up a 1/2 ounce from Monday, so still doing good!

Tomorrow, Matthew will get his first professional pictures taken in the morning. Then he has a ultrasound of his sacrum (lower backbone) tomorrow at St. Elizabeth.

Thursday home health comes again and friday we're appointment free!!!

I haven't taken too many pictures of the baby as all he does is eat and sleep!! But I've had quite a few requests for more pictures, so I'll try to do a picture post before the weekend.

Wednesday, June 4, 2008

Matthew loves his boppy!

Pictures as promised!! Matthews favorite place to sleep and hang out is his boppy. He sleeps the best there. Here's some pics of him on his boppy and also some with his brothers and sister.

First bath at home!

Matthew got his first bath on Sunday. He basically slept through it. Steve took some cute pictures

Wide eyed after his bath!!

Tuesday, June 3, 2008

Welcome to the land of Dr. appointments

I didn't realize how many doctors we will be seeing. I'm a little overwelmed; thank goodness they had a discharge planner at Children's hospital to help coordinate all his appointments. Today my job was to transfer all my appointments to my day planner. I will just look at that each week(maybe day) and know where we're going. Well as I was transcribing them I realized I'll have 1 -2 appointments per week till the end of July, YUCK!
Then I went to see the pediatrition today and she scheduled 2 more ultrasounds and wants to see us on Monday for a follow up and to draw his phenobarbitol level and to circumcise him, since he wasn't circumcised in the hospital. Plus home health is coming twice a week to do weight checks. It's a good thing that I'm not back to work yet.
My mother-in-law is also here till tomorrow, so she has been helping out with the kids; which is good, because we've had a couple busy days!
Matthew is doing well, unless you count the fact that he likes to eat every 2 hours at night! Not much sleep for mommy! He sleeps well for the hour in between feeding. He is still weighing 8lbs 2 oz, so they are going to follow his weight closely to make sure he is gaining.
Tomorrow early intervention comes to evaluate his needs for therapy. Friday the home health care nurse will come and reweigh him. We are trying to be low key this week, but it's already busier than I thought it would be. We will be starting the summer reading program at the library this week or early next week so the kids can occupy themselves with something other than the TV and video games.
Well not too much else new, leading a fairly boring but busy life. Hopefully update with pictures later this week