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....

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....

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. :)

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.

Well.....

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!

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.

Goodnight!

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.

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.

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.