Saturday, December 26, 2009

Another Milestone

Madison got up on her feet today! I really didn't think she would do this before she had some braces on her little feet. She has been standing on "tall knees" since soon after crawling, but I didn't think she was stable enough to get up on her feet. She was trying to pull up on a pillow this morning, and had both of her feet under her, and her legs straight, in a camel-stance. :)

I'm so excited for her! I just love that she is so motivated. I'm pretty sure she will be pulling up to stand next to furniture soon, with or without the braces. (we are still waiting for the appt to get this started)

Anyway, just had to share....

She will be 1 year old on January 10th. Whenever I read others' blogs, I wonder how old their children are, and scroll through trying to find out when they were born. I will try to mention her age more often.

Tuesday, December 1, 2009

She's CRAWLING!!!!!

Well, after scooting backwards for several weeks now, Maddie has finally figured out how to crawl forward! We have it on video and will try and get a decent copy on the blog. I'm relying on my daughters to facilitate this since I'm having computer troubles.

So, it was a very exciting night here, and we'll have great news for the ped and physical therapist next week at our clinic visit.


Monday, October 26, 2009

Wonderful News!

Madison's physical therapist was very pleased with her progress this week. She's going to PT twice a month right now, and her overall strength is very good. She is a bit weak in the inner thighs, buttocks, and ankles, but all of these muscle groups are stronger than we anticipated. It's very exciting to me. :)

She isn't really interested in getting around too much. She sits, and plays, talks, and yells like crazy. But I believe, even if she didn't have SB, she wouldn't be on the move yet. She's just very laid back physically. She can sit, get into the crawling position, roll over, and almost gets into the sitting position on her own. But, she rarely does these things unless someone is working with her. She crawls backwards when she tries, which is very typical of an early crawler. She turned 9 months on the 10th, so she's a bit delayed in crawling, but not much.

She is just a sweetheart though, and we love to see her smile and giggle and talk to us. She is very kissy and cuddly too. Hannah and Abigail are starting to really enjoy her as well.

I am going to try and get some new pictures of her up on the site. We are way behind on that due to camera troubles.

Home life in general is going well. The boys are busy with school, art class, piano, and playgroup activities. Hannah is taking some horseback riding lessons. (pretty low-keyed aimed at 3-4 year-olds) She LOVES this. Abby went with us today, and was able to ride the horse a bit as well, and just threw a FIT when she had to get down.

So, we are staying busy, and enjoying the Fall. We canned about 80 quarts of grape juice this last week. A first for me, but it was worth the effort. Very good juice, thank you Grandpa Dennis!!

Also, we saw the ophthalmologist last week, and Madison doesn't have ANY issues with her eyes. I'm so happy about that. With as many issues as SB kids can have, every one we DON'T have is a huge blessing.

Thank you all for your continued prayers and interest. I'll try and keep the blog updated as needed.

Friday, October 9, 2009

Catching up....

I realized after my last post that I never posted about Madison's shunt revision. We went into the ER on the 18th, and I posted at that time about my concerns. She did have a UTI, and broke her first tooth, followed quickly by another. The following week we took her in to see the neurosurgeon for a follow-up on the ER visit. I had figured by that time that her troubles were due to the UTI, teething, and possibly my imagination. However, her head circumference had gone up 1 1/2cm since her ER visit the week before (head growth should be about 1/2-1cm a month at this age), so he decided to do an MRI right then, and it showed definite enlargement of her ventricles. So, at 5pm we were admitted to OHSU. I was not prepared to stay 2 hours from home, my mother and young son Ethan were with us, and Tim was working out of town 1 hour away from home, and 3 hours from Portland.

So, my daughter (Linda, 21) stayed with the rest of the crew at home, and my dad brought me clothes and things, picked up my mom and Ethan at 10pm or so, and I stayed in Portland with Madison. She had to fast from about 3am since they were working her into the surgery schedule, but they didn't get her in until around 4:30pm. It was a long day, but she did quite well with the fasting. We hung out together and watched Baby Einstein a whole bunch. I posted a new video that I took with my phone. I took this just minutes before they wheeled her away for surgery. She's amazingly happy for fasting over 14 hours.

So, she recovered well, and has been making great strides in her development since then. She's bearing weight really well, and getting up on all fours to try and crawl. She scoots backwards instead of forwards, but seeing her reach these milestones is simply lovely. :)

My mother-in-law Carol passed away last week, and we have been mourning her, yet praising the Lord for his tender mercies. She's in a better place for sure. She was always loving and warm and a great blessing to our family. We will miss her....

Thursday, October 1, 2009

Fall is Here!

Today was the perfect Fall day.... Just beautiful. I love this time of year here in Oregon. The air is crisp and clean, and the sun is bright. The leaves are just starting to turn a bit, and acorns litter our driveway.

I have not updated in a while. Sorry! The boys are starting back to school and piano, and are doing well so far. We spent a week in a chalet at Eagle Crest with my parents, and wore them out with swimming and activities. It was nice way to start the school year. We visited the High Desert Museum, and it was fantastic! I will get some pictures up as soon as I can. (having some trouble with my camera software)

Madison is doing great since her surgery in August. Recovery was a breeze, and she is perky and adorable. Her hair is growing very fast, and you can hardly see her incision already. She is sitting perfectly, and we are trying to get her to learn how to lie down and sit up on her own. She uses all the right muscles, but isn't terribly motivated to do it if no one is encouraging her to. We also are having her stand, even though she balances (or not) on her heels, we still want to encourage her to hold her little buttocks in and hold herself erect. She's doing great with this. We go back to the physical therapist next week, so we'll get an assessment again. She gets up on all fours (crawling position) but mainly when she is MAD and crying. Basically, she is very content to sit and watch all the commotion going on around her. I can't blame her, it's pretty entertaining to watch Hannah and Abigail run around and get into things. But, so far, she's meeting her early milestones, and that is a wonderful thing to say the least.

We will be looking at braces for standing some time this fall. We also saw the urologist this week, and her renal ultrasound looked good. We go in next week for another urodynamics study, which will check her bladder pressures and how well she fills and empties the bladder. Her urologist was very optimistic about her appt though, so I'm not really worried.

So, life is going pretty well here in our household. Still working on routines and organization with all these little ones, but slowly it seems to be coming together. When I look back over the last 9 months, I feel like I've been in a bit of a haze, and I'm hoping to feel more "on top" of things as time goes on. Life just seems to run me right now, but I *think I'm getting a grip, Lord willing. :)

Tuesday, August 18, 2009


We drove up to Portland yesterday because I was worried we were having a shunt malfunction. They did shunt X-rays and a quick-scan MRI. Nothing looked wrong. Her ventricles are large for her age, but smaller than before her shunt placement. Doesn't quite tell me if it's working like it should, but she is perking up today, and getting a new tooth!

So, maybe she was just teething, and *that caused the vomiting, sleepiness, lack of appetite, that I was worried about. Maybe the fullness I see in her soft spot is "normal" even though it seems fuller than it has been. It's not huge. We go back to Portland on Monday to see her neurologist. I suspect she is okay, but I'll keep an eye out for any new signs.

Not sure if I'll ever get used to this.....

Friday, July 31, 2009

Almost 7 months....

Madison is getting so big. She is going to be 7 months on the 10th of August, and I can't believe how fast the time has flown. She is pushing 20lbs. Her development so far is right on target for her age. She is rolling over both ways, and sitting alone for short periods. She is a delightful baby and smiles and talks all the time. She absolutely loves all her siblings (even Abby-lol) and I know she's going to be following them around as soon as she can. They will be great motivators for her to get up and run. :)

We are still doing the stretching exercises with her, to keep her feet and hips in full range of motion. We start physical therapy soon, I'm waiting to hear from the coordinator for that. I will call today since it's been a couple of weeks since we were in.

The summer is flying by, and the weather has been wonderful. A bit hot the last week or so, but that's okay. My parents have been helping tremendously with taking the boys to swimming lessons and camping. We have continued with school through the summer, but a light load, and we've taken a break from piano. (which may have been a mistake)

Madison hasn't had any problems with her shunt, and her hair is growing so fast, we won't be able to see it pretty soon. I think the fluid retention she had was enough to make her a bit "hazy" and she has been much more alert and talkative since her surgery. That could be due to age and growth too, but it seemed pretty evident right away to me. Not night and day, but significant. That reassured me that the surgery was the right thing to do, and not wait until this fall, which was an option at the time.

I still feel like I'm running to catch up most days, rather than lead and teach my children. Hannah and Abigail are busy little toddlers, and they are great partners in crime. We have new chickens this year, and they just started laying last week. Hannah got into the refrigerator in the garage and cracked about 22 eggs into a container. (and all over the rug we have out there) She is a child that just *does whatever comes to mind. She's getting better, but in small steps. We took the boys and Hannah (and Linda) out to dinner last night for Tim's birthday, and she was wonderful! So refreshing to see that she *will grow into a nice little girl.....

Anyway, off to start my day. Abigail is calling me.....

Saturday, June 27, 2009

Headed Home Again :)

Madison's surgery went very well. She's such a sturdy little girl, I'm not surprised she's handled it so great. She did swell up a lot after the surgery, which I wasn't prepared for, and the neurosurgeon said was more than typical, maybe a reaction of some sort. But once she was off IV fluids and able to be up a moving around a bit, the swelling went down quickly. She went from her eyes being swollen shut yesterday morning, to almost normal by mid-afternoon. She looks perfect this morning and is her usual cooing and smiling self.

The shunt is not too visible, which makes me happy. I'll get some pictures up later. A small bump on the top of her head where the reservoir is, but the valve is so small you can barely feel it under the skin. Once her hair grows in, you won't notice it at all.

We are going home this morning as soon as the paper work comes through. Thank you all for your prayers.

Saturday, June 20, 2009

Gearing Up

Madison went in for her check-up this week. She now weighs 18lbs 14oz. She's 26 1/2 inches long, and in the 95th-97th percentiles for her age. Big girl! Her head circumference has also gone up quite a bit, even from her visit in Portland a couple of weeks ago. It's off the chart now, so I am reassured that the shunt is the right thing to do at this point.

Her surgery is scheduled for next Thursday, and we will drive up on Tuesday night since she has a pre-op on Wednesday morning. She should only be in the hospital for 2 days. We need prayers that everything goes smoothly.

As far as her development, she is doing wonderful. She sits up well for her age, but topples quickly. She's rolling over from tummy to back, and *almost the other way. She's so chunky I'm surprised at how agile she is. She grabs her toes and rolls back and forth. She is moving her toes more than she used to, which is really encouraging. I will try and get a new picture of her up soon.

It's been relatively quiet here this week, since my parents took Seth and Ethan camping. They've been gone since Monday, and I will drive over today and help get everything home. What a blessing my parents are .....

Kirsten's graduation went well, and we had a nice dinner here to celebrate. She's now working at Camp Harlow for the summer, so we won't see her much.

Well, Hannah and Abigail just woke up, so I must go.....

Tuesday, June 2, 2009

Some News, Good and Bad....

Madison is going to need a shunt. I was dreading the news, even though I wasn't surprised. We went to the Spina Bifida Clinic last week, and her head growth has gone up from the 75th to the 95th percentile rank. Her weight has as well, so the pediatrician didn't know for sure what would happen. So, we drove to Portland yesterday for her MRI and follow-up with the neurosurgeon. Her ventricles are getting bigger. Not causing any problems for her, but it is what seems to be causing her head growth.

I will call today to schedule the surgery, and will probably have it done at the end of the month. They do the surgery at Doernbecher's Hospital in Portland, so I will have to be away from the rest of the family for a few days. In the long run, this is nothing, I know, but for now, it's not what we wanted. I was hoping she would be in the 10-15% of spina bifida kids that don't need shunts. The neuro said that he places enough tubing to allow full growth, and if the shunt functions normally, and she doesn't have any problems with infection, etc., then she won't need a revision ever. Statistically, revisions are common, and most people have 7 in a lifetime. Prayers needed that this is the only surgery she will ever need for this.

Some GOOD news!! Kirsten is graduating from Western Oregon University on the 13th! Yay!!! We will be having a celebration here at our home after her grad ceremony. I'm so proud of her. :) She has worked hard the last four years, and I pray the Lord uses her in her work environment. She's going to be a teacher, and I know she will be a wonderful one. She has worked at Camp Harlow every year between her school sessions, and thoroughly enjoys those little people. She has a heart for it.

Other good news about Madison.... Her physical therapist and her SB pediatrician have upgraded her leg strength. She is pointing her foot a bit on the right side, and I think I've noted some on the left as well. Her hamstrings are working also, which wasn't for sure on her last exam. She is weak in the gluteal area, but does have some function there. They have no doubts she'll walk, though she will need some braces for positioning. We are still working on stretching her feet, hips and neck. She's a litte tight on one side and prefers to look to the right. But she is meeting all her developmental milestones on target, or a bit ahead. I thought she was lagging a bit a month ago, so it's very encouraging.

Thank again for all the prayers. Sorry I don't update here more often, but we are a BUSY household, and it has been a very busy Spring. Love to you all! Lord be with you.....

Saturday, May 9, 2009

Vacation Time...

Here I sit in beautiful Hawaii. We are taking a couple of weeks on Maui to relax. Well, to a degree. Tim has been working here for 3 weeks, and is basically ready to go home. He will finish his pool remodel today though, and hopefully be willing to relax for a few days before he heads back. Myself, I'm staying the full 2 weeks I scheduled, along with Linda, Seth, Ethan and Madison. As hard as it is to leave young ones, I left Hannah and Abigail with Kirsten and my sister Karen. I'm so grateful they were willing to take on the task. It isn't an easy one to watch 2 toddlers that are 3 and 21 months. They are beyond busy, and quite a handful. :) But they are sweet and wonderful, and a joy at the same time. I left home 2 days ago, and I miss them, but....

Anyway, I had a few minutes while Linda is swimming in the pool with the boys, Tim is working, and Madison is laying quietly on my bed, so I thought I would update this blog, which is way past due.

Madison is doing great, and I will try and get a few new pictures up on the site. I'm not terribly computer savvy, so it's a chore to do those things. She is growing fast, and smiles and coo's and giggles a bit. At her last clinic appt (where we see the physical therapist and pediatrician that coordinates her overall care), they said she was pretty much on track with her typical milestones. But, she needs more tummy time, and I've been working on that. She does pick her head up and look around well when she's on her tummy, but she's not pushing up yet with her arms. Her range of movement is good with her feet and hips, but I need to continue to do the stretching exercises that were recommended. That will be a forever thing I'm sure.

She's very sweet and smiley, and so chubby! It looks like a chore to push her cheeks aside to smile at me.

We are scheduled to see the clinic practitioners when we get back, then get a kidney ultrasound to check on the swelling she had in one kidney when she was born. Then we head to Portland for another MRI and follow-up with the neurosurgeon. As this approaches, I worry. Her soft-spot seems to bulge some days, I notice her scalp veins more, and every cry makes me wonder if she's in pain. (all the signs of hydrocephalus) Overall, she seems perfectly normal, but I still anticipate needing a shunt at some point. Whether that happens or not is in the Lord's hands, but I still worry.

So, once again, I thank all of you who are following our progress and praying for this precious little girl. She is a joy, even with the challenges and unknown's.

Wednesday, March 18, 2009

Apples in my Bed?

So, I thought I would update a bit on what life is like around here right now. Madison is doing good. I'll try and get some new pictures up today. She goes in soon for her 2 month check up, and has an appt later in the month with a urologist. She is smiling and cooing and kicking and being an overall joy. The kids all adore her, even Abigail is kissing on her now. (and sitting on her, pinching, etc.)

But, as is usual with an almost 3yo, 18mo old, and newborn, there are few moments in a day when *something isn't happening. I did find an apple in my bed not too long ago. It had been nibbled by a small child obviously, and left without regard. I have also had a battle with Sharpie markings on the TV, walls, and furniture. This follows on the heels of dry erase markers on the walls and canning equipment upstairs. I have to say, I prefer the Sharpie. It comes off fairly easy with a soak in sunscreen, and a scrub with Mr. Clean's magic eraser. The dry erase is tougher by far to remove. (just a tip for all you parents and grandparents out there) I find it's very hard to be on top of them at every moment right now. They just do have some "free time" so to speak, like it or not. But we are learning together how to keep things running like a household. Seth and Ethan are tremendous helpers (and tattlers) and it does help to stem the chaos. They also help with a lot of the chores that are needed on a daily basis. Wonderful boys....

I have to say Hannah is the main culprit and challenge right now. Abby doesn't open doors yet, so her ventures are limited by what Hannah is willing help her get into. But, they are so fun and sweet, it's hard to get too upset with them. (I still manage though) The back yard is a safe place for them to play right now, just waiting for the weather to get a bit warmer to enjoy that respite. They need a few more outdoor toys so they will quit emptying my flower pots, but it's still great for them to get outside and burn off some energy when possible.

The boys have been staying on task with their schoolwork, thanks to my very wonderful mother. We've had some downtime this week due to coughs and colds, but doing great for the most part. They are still doing piano, and practice is a challenge, but we are working on it.

Tim is still doing most of the cooking (what a dear) and he has stayed fairly busy with work (thank the Lord for that). I can't express what a blessing he is to me. He thoroughly enjoys hanging around with all these little ones, and hates to see them go off to bed at night. (I honestly can't say the same for myself, but I'm ready for bed when they are...)

Kirsten is graduating from college soon, and plans on staying with us for a while. I am looking forward to that. She will be working at Camp Harlow for the summer, so we will only see her on the weekends, but it's still nice to have her around. Linda is coming here on a regular basis to help with the children and do some housework. She plays well with the kids, and seems to be on a fort-building quest with them. They love having her here and miss her when she doesn't come out for the day. I too love having her help and company, and truly appreciate her willingness to spend her time with us.

Well, there are my thoughts for today. I pray you are all well. We still need your prayers on an ongoing basis. So much is unknown, but we are trusting the Lord to lead us through. (and He is....)

Wednesday, March 4, 2009

I know it's been a bit since I've updated. Sorry! I can't believe how fast the times goes by. Having 5 little ones keeps me busier than I figured. :)

Madison had an MRI (quick scan) of her ventricles on Monday. Everything looks good, and her growth curve is normal. Her head is a bit large (percentile-wise) but the surgeon isn't too concerned as long as she stays within the same percentile. I asked when we could stop worrying about a shunt, and the answer was basically "never." Hard to hear, but he did say that statistically, 50% of kids will still need them at this point. He also said that he "had a feeling" she wouldn't need one. Not sure what that means, but I'll cling to that. Seems the symptoms are more important than the actual ventricle size, since people vary a lot in their individual sizes.

She's growing well. 11lb 14oz and 22 1/2 inches long. She's strong and enjoys looking around and being on the floor to kick and wiggle. This doesn't happen as often as I'd like because of the other monkeys we have running around the house. Hannah has taken a real liking to her "sissy" and has actually picked her up a few times before I can get to her. Good thing she's a strong little bear. Abby kisses at her, but doesn't pay too much attention to her unless she's on the floor. Then she sidles up to her feet and starts pulling and poking.

Her big brothers and sisters are in love with her, and she'd be held 24/7 if they all had their way. Kirsten has been here as much as she can with her full schedule, and Linda is helping me out a few hours most days during the week. Very nice.

So, we go back to the neuro in 2 months. In the meantime we'll see her regular doctor, spina bifida clinic doctors, and the local urologist. We meet him on the 27th.

Still praying her little bottom gets better. The soreness waxes and wanes, but never looks good. I am thankful for how well she is doing overall. She is quite the little miracle.....

Saturday, February 21, 2009

First Outing (ugh!)

Well, I ventured out with all five little ones yesterday for the first time. (well not quite, I had visited my friend Becky with them all, but she lives close and it's not the same as going "to town.")

We went to a local gymnastics gym where the kids can have playtime on their equipment for an hour. We do this with our home school group twice a month. We had planned on going to Papa's Pizza afterward with several families for continued playtime and food. (it wasn't to happen, however)

So, all went well until about 10 minutes before we needed to leave. Ethan took a dive off a bar onto a parallel bar underneath it, landing square on his little nose. He was out of my sight, but I recognized his scream immediately. Blood was pouring from his nose, and he was just miserable. The friends I had with me at the gym were angels, and helped me get him cleaned up and loaded all the little ones into my car. Ethan was pretty distraught, and in pain. I suspected he had broken his nose, as it looked a bit askew. :)

So, we went to Daddy's work, and he suggested we go to Urgent Care. Linda was available to help, so I picked her up (after swinging through Wendy's drive-through to feed the hoard) and she watched movies in the Yukon with Seth, Hannah, and Abigail while Ethan, Madison and I went into the care center. This is the first time I was actually glad to have a DVD player in the car. Also the first time we actually had a couple of movies with us. They can't tell if it's broken, so we need to wait a week and see if it still looks crooked.

He's feeling much better today, and though bruised, doesn't look too bad. His eyes aren't black. (yet)

It may be awhile before I venture out again... maybe when the warm weather comes, and we can just go to the park. :)

Monday, February 16, 2009

No Appointments!! :)

I have a whole week ahead of me with no doctor's appts. Yay!! I don't know what to do with myself....

Life is going well. Tim fenced in the back yard so I can let Abby and Hannah play back there without someone to chase them down. It's a lifesaver! We've even had enough dry weather to enjoy it. Just need to get a few outside toys back there for them so they have something to do besides empty the dirt out of my flower pots. :)

Madison was 10lbs 1 oz at her doctor's appt. She eats great, and it shows. She's been sleeping better on her own (without being held that is). I think that's because I don't have the help 24 hours like I had the first few weeks, and she actually gets put down occasionally now. I put her to bed in her own bed to start the night, and she sleeps from 2-4 hours that first stretch. Then she spends the rest of the night with me.

Seth and Ethan are doing good with school. We had friends over on Friday for our "Literary Club" and they all shared reports or poems and things like that. My mom is tutoring the boys for me right now, and they are doing great with her help. I can't say what a huge help it's been to me. (she's amazing)

Tim is staying pretty busy in spite of the "economy." I'm thankful.

Anyway, that's a quick update on us. I pray you are all well. Thank you for reading, and for your prayers, once again....

Thursday, February 12, 2009

She Will Walk!!

We went to the spina bifida clinic yesterday, and it went really well. I was dreading it, because I didn't want to hear about her limitations yet. (I'm a wimp) But they were very encouraging, and although I was a bit emotional, I left feeling good about her prognosis.

She has good strength in her upper legs and knees. The muscles are well balanced through the upper calf. She will walk! Yay! They (the pediatrician and physical therapist) were both quite certain about it. She will need braces for her feet and ankles most likely, but it's still a wonderful thing to hear.

Her main issues long term will be urinary and bowel continence. So, we will see a urologist within the next month to get established there, and keep an eye on how that goes. Her head growth was normal, so the ped had no concerns about hydrocephaly (we knew that from our last ultrasound), and he went over the symptoms of problems with the AC II malformation. This is something that most SB people have. Due to the spinal deformity, the back of the brain gets "pulled" down during development. Most of the time, this doesn't cause problems, but sometimes babies have trouble with breathing or swallowing, and other things. Madison doesn't have any symptoms that would indicate a problem with this.

The therapist gave me some stretching excercises to do with her. She flexes her legs and feet all the time, and the extensor muscles are not developed, so we need to make sure she doesn't have problems due to the imbalance there. I figured we would be doing something along those lines.

We go in to see her regular doctor today, mainly so he can stay up to date on her and keep familiar with how she's doing. I'm very pleased with his approach to her care.

Wednesday, February 11, 2009

Up Early...

Well, I don't have much new to report right now, but I am up early and the house is quiet. I figured I better take advantage of it. :)

I read a quote this morning from Dorcus Smucker (a local writer and blogger);

“Often the things we don’t know we need come into our lives without knocking.”

It made me cry, because I've been struggling the last few days with fear and anxiety over what the future holds for us with Madison. But I was encouraged by her words, and I know that whatever comes, it is the Lord's mind for us as a family, and for Madison herself. I need to look past my own selfish desires, and remember that He is in control. A verse read on Sunday during our worship meeting also hit home. Jeremiah 29:11 "For I know the thoughts I think toward you, saith the Lord, thoughts of peace, and not of evil, to give you an expected end." Some versions read the last line "to give you a future, and a hope."

I do have hope, and joy. Life doesn't dish out what we want sometimes. I've been incredibly blessed in my life, in spite of my poor choices at times. I thank the Lord for that.

I'll update again soon. We have appointments today and tomorrow. We did have another ultrasound in Portland on Monday, and her ventricles are stable. We go back for another follow-up in 3 weeks on that issue.

Thursday, January 29, 2009

More Appointments

We went to the neurosurgeon yesterday for a follow-up. Her surgery site looks fine, but her head circumference was up 2 1/2cm, so we were sent over for an ultrasound. Her ventricles are dilated a bit more. 7mm on one side, and 10 on the other. Still not hydrocephalus, but they want to watch it. So, we go back in 2 weeks for another ultrasound.

We also have an appt next Friday with a urologist to fully evaluate her urinary function.

Everything is going well at home. She sleeps most of the night, just wakes up to eat. (hope that continues...) She prefers to be held during the day, but I can't blame her. I like to be held too. :)

I still need to take her in for a urine check and schedule her 4 week check-up with our local doctor. I think we will have weekly visits of some kind for a while. Very tiring, but worth it.

I had a request to get more pictures up of the girls, so I'll try and get some of Abigail up. I put one up of Hannah, but need a current one of miss Abby.

I continue to covet your prayers. I strive to be anxious about nothing, but it takes some effort....

Tuesday, January 20, 2009

Today's Note...

We went in for a weight check today, and Madison is 7lbs 11oz. Up three ounces from her birth weight. Kirsten was there when she was being weighed on her birthday, and confirmed that she was 7lbs 8oz at birth.

She's nursing better each day, and is just a sweet little thing. Hannah loves to hold her (for about 15 seconds) and Abby is ignoring her for the most part. She's decided she likes me again though, which is very nice. :) Seth and Ethan are always wanting to hold the baby, she's quite the commodity. They always scrub up really good first, just like we did in the NICU. It's so cute.

Life is good here, and I have had constant help from my mom, sister, and daughters. Not to mention my dear hubby, who has been cooking up a storm, and feeding me quite well.

Well, off to bed once again....

Saturday, January 17, 2009

Home at Last

We made it home at last at about midnight. It took all afternoon/evening to get all the paper work done, get the run-down on her care, and gather her things. Finally loaded up into Kirsten's car and headed home. Madison and I slept the whole way.

Tim had gone home early in the day with the boys and my sister. (Karen) She came up and stayed a the last couple of days with me there. I have been so blessed by the care and attention of my family. Thank you! It was good to get home and sleep in my own bed, with my new baby next to me. Didn't realize how much I was missing that part.

Abigail and Hannah met her this morning. Abigail is not too sure what to think. She spent some time crying and avoiding me, but cuddled off and on too. Hannah is just a sweet little mama with her. Kissing and wanting to hold her. (a bit on the rough side though)

Madison is nursing better, still not long sessions, but latching a bit better. Her little bottom is so sore from having constant BMs and maybe from the antibiotic too. She needs a low prophylactic dose everyday because of her kidney reflux. I hope that gets better. I've never seen diaper rash like this.

Well, she is getting hungry, but I wanted to post a quick note. Thank you for prayers. :)

Friday, January 16, 2009

Going Home!!!

Madison is getting discharged today! What a surprise! :)

So, we are packing up and going to get her. Still need to check out of Ronald McDonald house. This has been quite a week. Feels like it's been a month. I'll update again as soon as I can.


Madison is growing well. She weighed in yesterday at 7lb 11oz. She's eating plenty and is allowed to eat on demand, which means I can try and nurse whenever she's seems hungry. (yay!) It's been a bit of a struggle to get her to latch the last couple of days, but she did nurse for 15-20 minutes this afternoon. (phew!) I was getting a bit stressed about that.

So, she had a few tests yesterday. Kidney ultrasound, and VCUG (voiding cystourethrogram). She showed some reflux on one side. She seems to be emptying the bladder just fine, but we haven't gotten a final report and recommendation from the urologist yet. She also had an ultrasound of the brain again today because her head circumference is up 1cm. A few more things to pray about.

I'm thankful she is so healthy, and doing very well. A bit scared and anxious about the findings today and yesterday. I did get some great pictures I will try and get posted here. Still working on that.

Seth and Ethan have been here the past few days, and they are loving her so much! She is really a beautiful and sweet little thing. She was awake and looking around quite a bit today as well. I can't wait to bring her home so I can be there for each moment.

Thank you all for your prayers!

Tuesday, January 13, 2009

Doing Wonderful :)

Madison is doing great! She was able to nurse twice today. She took over half her feeding from me the first time. They only want her nursing every other feeding right now so she can build up her strength for it. The next one (9pm) she nursed a little, but fell asleep. They gave the rest of her milk through her gastric tube. She gets 60cc's at a time. I loved being able to hold and cuddle her though.

Tim was able to hold her for the first time tonight. I can't believe how special each event is. You take so much for granted!

She was able to meet both her grandpa's today. My dad and Tim's dad both came to see her. I'm amazed at how fast the days are going by, yet it seems I've been here a lifetime as well.

So, Madison had an ultrasound yesterday, and there is still no hydrocephaly. It confirmed some of the findings from her previous ultrasounds, which indicated the spina bifida to begin with. Arnold Chiari II malformation is almost always present, but doesn't always cause complications. This is what may cause the hydrocephaly. So no new news in that regard. They will keep her here long enough to monitor her ultrasounds, and make sure she's taking all her feedings either from me, or a bottle. (not through the gastric tube) I really don't know how long that will be. Several more days at least.

I'm feeling well. I was discharged yesterday, and am staying at the Ronald McDonald House. What a wonderful place... I am amazed at the generosity of people. My experience with the people up here at OHSU has been so good. I can't say enough good things about my stay here so far. The people have been so nice and caring, it's overwhelming.

So, I better get to bed. It's harder to rest now that I'm not staying at the hospital with her.


Sunday, January 11, 2009

Tears of Joy

We have some pictures, but most are pretty dark. I posted a couple that I thought looked pretty good. She looks so much better today. The bruising is going away much faster than the nurses anticipated. I was able to hold her today, and attempt to nurse. It was so sweet! (I cried) She didn't take to it yet, but she wasn't terribly hungry. She did seem interested, so I'm pretty confident she'll do well when the time is right.

She'll have an ultrasound sometime tomorrow to see if she is developing hydrocephalus or not. If she does, she may need another surgery to place a shunt. This is very common in babies with spina bifida, but not a given, so we are praying she can avoid it.

She's still kicking and squirming like a champ, and seems large and healthy compared to all the little babies in the NICU. Her birth weight was actually 7lb 10oz, and her length is 19 inches. She looks quite round to me.

Anyway, off to bed I go. I'll post again soon. Thank you all for prayers and words of encouragement. What a blessing you are to us!

What a day!

Well, it's getting late, and I'm ready to get some sleep. But, I thought I should take a few minutes and update. As Linda posted, Madison Hope arrived early this morning after a whirlwind delivery. She is 7lb 8oz (exactly the same weight as Ethan was) and I don't know how long yet, but she looks short and round to me. Like a little bear, ready for a fight. :) She is pretty bruised and swollen in the face from her quick delivery, but she is doing great.

She had her surgery this afternoon, and the surgeon was very optimistic about it. The skin was healthy over the defect, and the closure went well. She is recovering nicely and was able to take breast milk from a bottle twice this evening. I was able to give her the last one she had. It was so sweet. We can't hold her yet, but can get close to cuddle and talk to her. She has a ton of dark hair. I'll try and get some pictures up soon.

Functionally, she seems to be doing great. She kicks both legs and squirms around like any baby. We'll have more evaluations in the next week or so on orthopedics (bone development) and urology (bladder and kidney function). She will have another ultrasound on her brain on Monday, but so far, no fluid retention there either.

Thank you all so much for your prayers and support. This has been an amazing journey so far, and we've a long way to go. I certainly know that God is in control. I'm thankful that I ended up delivering naturally so I could recover quickly and spend more time with her. The doctors here and the staff have been amazing as well. So supportive and friendly. I couldn't ask for a better experience or for better care.

I'll be posting again soon, or will have Linda update if I can't. She's been a great help in getting this blog going.

Friday, January 9, 2009

Early Arrival

( writing: linda )
We're here in Portland a little early. Baby decided she wanted to come a little early. Mom started to have minor contractions sometime in the morning. After calling around hospitals the doctors in Portland said to head their way. So mom and grandma headed up, Tim headed back from Bend, and Papa and I stayed with the kids. Tim got home around1pm and we headed out around 4pm.
We made it to the hospital around 7.15pm and not much had changed. We all sat around and waited for a few hours. Kirsten showed up sometime after 7 even with my horrible directions :)
Kirsten, Grandma, and I spent some time trying to rest in the family waiting room and eventually Kirsten and I grabbed my stuff out of the car. We came back up and a few minutes later (1.10am-ish) her water broke. I left to go tell grandma and as soon as I got there Kirsten texted me saying that the baby was coming now! So we hurried to the room and met our new little angel, Madison.

1.17am. Madison Hope is born :)
more updates to come soon!!
linda marie.

Thursday, January 8, 2009

Almost Time....

Well, I wasn't going to do a blog, but I've realized that I can't keep up with updating everyone individually, as much as I'd like to. So, I'll start with an intro to our current adventure, and our little girl (Madison Hope, maybe?) that is due to be delivered this coming Tuesday. (January 13th)

This little one was diagnosed with spina bifida at about 17 weeks into my pregnancy. Spina bifida is a fairly common birth defect caused by incomplete closure of the spinal column during the first few weeks of gestation. Her defect is quite low on the back, and we are praying her troubles are minimal due to it. So far, she's shown no signs of other common problems associated with SB. She has no hydrocephaly, and normal growth and movement. These are all signs of good nerve development. Possible complications include hydrocephaly, (which can show up after birth) troubles with bladder/bowel function, and troubles walking. With the location of her defect, she will most likely walk, but with braces or assistance of some kind.

So, we continue to pray for healing, minimal troubles, and an uneventful delivery and smooth recovery from her post-natal surgery. She will have the defect closed probably within 24 hours of her birth, and will be in the NICU for 10-14 days at least.

I'm also praying for my family to do well in my absence, as I will be in Portland for the duration of her NICU stay. It's 2 hours from home, and I'm eternally thankful to my mom, dad, sister, and my older daughters for helping so much these last few weeks, and for being available for the next several as well. What a blessing they (you) are!

I know the Lord will use this little girl for His good purposes. I'm certain she is a blessing to us and will be to those around us as well.

Thank you all for your prayers and support. Knowing that others are petitioning on our behalf all over the world is such a wonderful thing.

Madison Walking 22 1//2 months old! Happy Thanksgiving!!

Madison and Mommy

Madison right before her surgery on August 25th 2009

Madison almost 6 months