Back and forth we go...

Well on day 9 of life Mr. Chance received his VP Shunt. I was a nervous wreck of course, but Chance was "whatever" about the whole ordeal, coming through like a champ :)

After some disagreement between doctors on whether his scans showed enough "improvement" after the shunt placement, we were FINALLY sent home with our son on day 13!

It's great being at home with Chance. We finally feel like a family and can take care of our son without interference (although helpful) from nurses. We get to see his little personality emerge and it feels so wonderful, we have been waiting for this for too many months...wondering and worrying about what it would be like, what he would be like. We worried for no reason, he couldn't be more perfect if we had hand picked him ourselves.

Of course we have a lot to learn being first time parents. But the learning is beautiful and frustrating at the same time. Some day we will look back at all of our mistakes and laugh at how scared we were.

But here are some things we discovered about our son that we couldn't have while he was in the NICU.



He actually LIKES baths :)

He HATES diaper changes and gets the worst diaper rash!

He likes to snort when he eats :)

Tummy time is more nap time...to our dismay.

His focal point is a ceiling fan and he can pretty much stare forever.

He loves to sit up propped on pillows like a big boy.

His favorite place to sleep is in our bed...like a big boy.

And the list pretty much goes on.

Chance just hit his 2 month birthday. It's been a LONG time since i updated. But the life of a full time working mother is a bit hectic.

Chance is pretty much the light of everyone's lives. His Grandparents Reynolds can't get enough of him. When they visit on the weekends he pretty much has a permanent home in one of their arms. His Grandparents Dutton are basically the same, either when they are rocking him, playing with him or just chilling on the couch...they are so in love. And Aunt Heather of course gets to babysit everday and loves every minute (she just got peed on for the first time today, she was so excited ;-))

But most of all he is the WORLD to his parents. We have been through so much together. Yes, now that i have updated it's been 2 more shunt revisions, 4 surgeries total. But like i said before, everything has been worth it, because this kid couldn't be more perfect in our eyes.

We love you more than life itself Chance <3

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He's here!

It's been a week since Chance arrived and I finally have some good time to update his blog :) It will be long since I haven't updated since before he was born!

April 27th was the C-Section date. It went smoothly for the most part, besides my nerves. Brent sat with me during the actual process of "removing" him. I had an upset stomach and the pressure they put on it to get him out didn't help, but i felt no discomfort other than that. I honestly don't remember the exact moment i knew he was out, i'm pretty sure the doctor said something like "he looks good" but i don't remember. I remember hearing him cry, i started crying too. It was by far the sweetest sound i have ever heard. He was 6 pounds 12 ounces, 19.5 inches long. They let Brent get up and take pictures of him and they let me kiss him real quick before he was whisked off to the NICU. My family saw him and got some pictures on his way there, only Brent went with him. The whole process took less than an hour and I was stitched up and wheeled to recovery. I spent Chance's entire back surgery, which was done at 3 hours old, in the recovery room. My family came in and showed me pictures. He was and is the most beautiful and perfect creature i have ever seen.

Chance's original neurosurgeon was out of town for a death in the family. We had his partner perform the surgery, and all went well. He had enough extra skin over the defect to make the surgery relatively easy. His scar is not too big or jagged looking. Just about a 3 inch zipper looking thing on his lower back.

Chance has not needed a shunt as of yet. His ventricles are "large but stable" according to the doctors. As of today, a week, they have done 3-4 head ultrasounds to keep an eyes on the ventricles, and they measure his head circumference every 3 hours. He originally was retaining too much fluid. He was peeing, but after a renal ultrasound showed their was residual urine left in his bladder, cathing was ordered. He started at every 6 hours, I of course balled the first time they did it. They were getting 25-30 ccs every 6 hours. His puffiness went away after they started this. The last few days they haven't been getting anything from the cath and he has good urine output on his own - so they taught us to cath him and moved the time to every 12 hours. We will need to know how to do it in case he starts retaining urine again when he is at home. I was terrible the first time, but better the second. Brent did perfectly the first time he did it, must be a guy thing :)

So we are at the Ronald McDonald House down the street so we don't have to travel 2 hours round trip to the hospital every day. It's very nice but we are so ready to be home with our son where we all belong. Chance is doing amazing. Besides a diaper rash from pooping so much and the hydrocephalus, he is perfectly healthy. He breastfeeds like a champ! We are still waiting for the results of yesterday's ultrasounds to see if he can go home without a shunt or not.

I am so ready to take him home from the NICU. It's a very emotional place and Chance is so healthy it seems being here is not necessary. They can't take care of him any better than I could at home. Crossing our fingers today we actually get some good news on when he can leave!

Sooo Clooose!

Man i haven't updated in forever. I told myself i wasn't gonna slack and already here i go :)
A lot has happened since my last post at 31 weeks!

First, we saw Dr. Berry, our peri, at 33 weeks. It was a nightmare. Without really knowing it he has kind of become the one person who's opinion really mattered. I felt like he understood us and he was always so funny and informative and really put as at ease during every appointment - until this one. Our son's ventricle's measured at 23mm! 23!! It took a lot to not start balling on the spot. I was banking all my hopes on his ventricles not getting above 20 (our peri said this size is usually when a shunt is required). They weren't just at 20, they were 23! He didn't say A WORD. Now if you have heard from me at all, you know how paranoid i have become of doctors - especially when they stop talking. I was so used to him going, "this is normal, this is what's happening, this is what could happen" - now nothing! He didn't offer any reassurance or tell me what the increase would mean for Chance. He measured Chance's sac, it was still at 3cm. It literally has stayed the same size the entire time (THANK GOD). Anyways, Dr. Berry just kind of mentioned he had to go get the pics saved on a thumb drive for our Neuro appointment and left the room. I couldn't even look at Brent without knowing i was going to break down. By this time the tears were running down my face and Dr. Berry came in, gave me the thumb drive and just kind of left. I spent the whole night at home, laying in bed in the dark, crying my eyes out. I am such a hormonal prego.

Anywho. After this fiasco i just figured Dr. Berry was having a bad day and we were going to talk to the Neuro the next week and everything would be fine. Brent and I and our moms waited for a couple hours in the Neuro's waiting room the next week. We talked to him for about an hour. Guess what? He told us we are able to deliver at St. Davids main in Austin where he has rights to perform surgery on Chance. This means Chance doesn't have to be transported away from me to a different hospital! BEST. NEWS. EVER.
Of course i had an appointment with my OB the next day and had to tell him the news. He acted very flustered and said he didn't know if he had rights to deliver at that hospital and i might need a different OB. He would have the nurse check into it. What do you know? They called a few days later with a new delivery plan: Same OB :) Different hospital where Chance and I can recover together :) Same day of delivery :) Earlier time, now 8:30 instead of 12:30 :) Hooray! I'm not used to things working out but i'm so glad they did.

Back to Dr. Berry for my 35 week appointment. I am still amazed at the complete 180 he did between appointments. I expected the worst, and got the best from him. While we waited FOREVER in the ultrasound room, Chance's ventricles were still pretty much the same, 24mm. Whatever - the neuro told me measurements don't mean anything. They will still check him to see if he needs a shunt, even at 24mm he may not, so i feel a little better about the ventricles now. Dr. Berry came in and was CRAZY, SUPER NICE. It was awesome. It was like the Dr. Berry i met the first day who gave me so much hope :) He said everything was measuring perfectly for 35 weeks. My little boy weight 5 pounds 6 ounces.

Dr. Berry informed us that he has gotten 3 or 4 more mother's referred to him just that week who's babies were diagnosed with Spina Bifida. It's crazy, must be something in the water around here. I know it's mean that it makes me feel better, but it does, knowing there are other moms out there who will understand what we have gone through. Little Chance will have some friends at his clinics who understand him, and that makes me happy :) I hope Dr. Berry gave them the sense of hope he gave me when i first found out.

We toured the hospital yesterday. Got to see the NICU, meet the neonatologist and see Labor/Delivery and the postpartum rooms. Everyone was super nice. My 15 year old sister was informed she would not be allowed in the NICU so that was very disappointing for all of us. But we saw where Chance will be moved to. Brent gets to go with him right away and i get to visit him as soon as i'm physically capable. The NICU is open 24 hours a day and we can visit him whenever we want for however long we want. I hope the nurses don't mind seeing our faces every minute of the day. Visitors are allowed 2 at a time with him. We can hold him once the surgery has healed a little, after a couple days. He gets to wear clothes we bring him after a few days! I can't wait to see my little man all dressed up cute. There was a bunch of other stuff but i can't remember. All in all it was mostly good news and we are so excited the day is almost here.

Anyways, i'm actually writing this with 10 days left on the Calendar until D-Day. I can't wait to post pics of the little guy.

Delivery Date is Set!

At our OB appointment today for our 32 week checkup we got the official date. April 27, 2011 is the day our beautiful son will come into the world.
I told Brent that as excited as I am, i am more anxious now than before. Somehow getting the date makes it seem more real, more close...
But we have made it this far and we will continue "making it". Baby steps...

I love you Chance, 6 weeks you will be here and we can finally hold you and kiss you <3
Brings tears to my eyes, this has been such a difficult journey, but totally worth it.

31 Week Update

So we finally got a hold of the Neurosurgeon that is going to be doing Chance's surgery. They couldn't get us in until the end of March. I thought that was a little strange, i will be almost 34 weeks. Whatever, i've given up understanding doctors these days. But i still had my 31 week ultrasound appointment with my Peri. The tech is always so nice and cheerful, it always eases the inevitable tension in the room just a little. She always tries to get us good profile and face shots, but usually they end up looking a little weird, but i still love adding to my collection! Here are our pictures, the first of his handsome profile, the second is an adorable picture of his face :) He was very cooperative with the tech this week, moved his hand when she asked and everything :)

 

Anyways back to the reason we go to these things so much...

His ventricles haven't grown much in the last 3 weeks, thank God. I was so worried that after the 4mm jump we had last time he was going to be well in the 20mm's this week - he wasn't! He still measured at about 19mm, so up about 1mm from 28 weeks. I'll take it! She looked as his spine but only briefly. When my doctor came in he didn't look at anything like he usually does, just talked to us for a few minutes...i guess at this point, there isn't much point? Haha. I mean you can only look at a hole and a sac on a baby's spine so many times right? My doctor asked if we had been in to see the neurosurgeon yet, i told him i hadn't, they couldn't get me in for a few more weeks. He looked at me and goes "Really? Well i hope you don't have a baby by then!" Lol! You and me both buddy. This little one is still cooking.

So the short of it is, i go back to have another ultrasound in about a week and a half, so that when i go to my NS a week later, i have updated pictures to give him. My peri said we are looking at delivery between 38 and 39 weeks, end of April to beginning of May is when we finally get to see and hold Chance. I can't wait!

28 Weeks down, about 11 Weeks to go!

We have finally hit the 3rd Trimester :) We had our 28 week ultrasound appointment, managed to make it through unscathed for the most part. It's funny how much we were dying to see pictures of our little one before the diagnosis, now we sweat every single ultrasound hoping nothing looks worse then before.

Anyways, Chance was given a much more thorough scan then he usually gets so that pictures could be taken of all of his "problem areas". We will be taking this pictures to our first meeting with the neurosurgeon...still waiting on that phone call. Although each scan is nervewracking, we did still get a good chuckle out of how big he is, a whopping 2 pounds 14 ounces at 28 weeks - almost 3 pounds! The technician mentioned his chubby cheeks and gave us a keepsake picture so we can show our chunky monkey when he gets older!!

His cyst over the opening on his back is measuring closer to 29mm, up from 19mm 4 weeks ago. The whole is more visible at S1-S2, last visit it was S2-S3. His ventricles are now at 17-18mm, up from where they remained stable at 13mm since week 20 :( The doctor also measured his cortical rim, or the area of brain that is being compressed by the ventricles. It measured about 10.5mm. We were told if it gets to 4mm or less they start to worry about too much swelling. Did I mention how much i hate these visits?

I guess i should expect everything to get larger, he is growing pretty good. But at the same time i just wish everything would remain stable...The good news is his body was measuring right on target at 28 weeks. His head was a little smaller, but only 1 week behind instead of 2 like at our last visit.

I freaked myself out so bad looking at "cortical rim sizes" on Google. I'm my pregnancy hormones best friend at this point, i make it easier to get myself emotionally worked up just by Googling anything related to my son's condition. I know it's the worst thing to do, and I know pregnancy is SUPPOSED to be hard when you are carrying an SB baby, but i just can't seem to make myself stop stressing. I worry about his ventricles getting to big, his brain being to compressed, his lesion moving further and further up his back, etc etc. They worry never seems to end as much as I try to be optimistic. I really just want these next 11 weeks to go by quickly so I can see him, I know when he is born and I see his beautiful face I will finally be able to convince myself that he IS going to be ok.

On the up side my sister had her baby today, Chance has a brand new cousin - they will only be 11 weeks apart or so! I'm so happy for my sister and can't wait to meet my nephew. But this is my blog and I use it to vent my feelings, so as terrible of a person as it may make me seem, i can't help being a little jealous. She has two healthy little boys who will never know the pain of back surgery to close up a hole or the pain of a tube being inserted into their skull and passed through to their abdomen to drain fluid. They will never have to worry about shunt replacements. They will never have to feel the embarassment of needing to cath so they can go to the bathroom. Don't get me wrong, i LOVE LOVE LOVE my sister and her family and her two beautiful children, but I can't help wishing that my son could have no worries in his life like her children. I know he is strong and can handle it, he will be no less loved for his challenges and we will cherish every single thing he does in his life. I just pray to God that he never, ever feels like he is not just as good as every other "normal" child out there.

And now I have to stop because i'm making myself ball.

I love you Chance, i can't wait to hold you in my arms. Stay in there and keep cooking though, you aren't ready for the big world yet - only 11 more weeks to go baby!

24 Weeks - Getting Closer

We are scheduled with our regular OB/GYN and our new Perinatologist once a month. I've heard in the second trimester we will see them twice a month, but i haven't spoken to either about that yet so we will see.

We just finished our round of appointments at 24 weeks. As usual it wasn't uneventful. I ended up in labor and delivery because of more, yes more, kidney stones. My son blessed me with no mornin sickness but the mischevious child decided to send some kidney stones my way - i guess since I won't feel the pain of childbirth he didn't want me to feel left out. Anyways, i was getting cramps so i went in to be safe. While i was laying there i had some Braxton Hicks, nothing out of the ordinary, and was sent home after being tested to make sure I was not in preterm labor.
A couple days later i had my two doctor's appointments. My OB/GYN was pretty quick. I was given the infamous bottle of liquid sugar and told to come back later in the week for my first glucose test. I went about a week later and everything came back normal. One sigh of relief.
At my perinatologist appointments i get detailed ultrasounds. This was my first appointment since what i have labeled the "real" diagnosis, not the one i was given at my OB/GYN. I was nervous, Brent (my husband) was nervous. We didn't know what to expect. They measured my little one to make sure he is on track. He had a tinier head than body. Specifically his BPD (biparietal diameter) was measuring 22 weeks and his head circumference was measuring a few days behind. He had always measured right on the dot - i was scared. Everything scares me now.  She measured his abdominal circumference, he's a chunker! He measured about a week ahead, i breathed a little easier, at least his body growth was on track. My sweet son weighed a normal 1 pound 7 ounces. The tech couldn't get him to flip in order to see his spine so she left it for my doctor to do. As i sat with my husband staring at some more printouts, this time two profile pics, i rocked back and forth to get him to move - i wanted to make sure our doctor could see his spine.
When the doctor got a look at his spine it was still there, the lesion. I guess part of me was hoping it would disappear, no such luck. It measured 19mm, which i'm not sure is good or bad. I looked at my ruler later and it didn't seem so large. The doctor measured his ventricles - 12 and 13mm. I guess one had gotten larger and one had stayed the same size? He told me that a shunt would be needed as soon as the ventricles reached 20mm. I got excited, his weren't even close, maybe he wouldn't need a shunt? The doctor wasn't so optimistic, he fully expects them to get larger, and even if they are not 20mm by birth, after the back surgery the ventricles almost always increase in size. I still have hope though, maybe we can get away with one less surgery, i will pray.

We left the doctor's slightly relieved, nothing crazy had happened. I was still worried about his head size so I Googled. It's become something of a sick habit for me lately.
Apparently a small BPD is normal for Spina Bifida babies. I feel a little better.

4 more weeks until our next visit, counting them down.