Our Baby Boy's Journey

Howdy

2011-02-28T07:06:00.000-08:00

I don't know why I can't get myself to work on this blog. But ANYWAYS. LOL
So Joey is off the Keppra, no more seizure meds and he is doing just fine. :) Taking both kids to the regular pediatrician today though, Joey has had a snotty nose for about a week and a half (I'm talking can't breathe at all through his nose, big green and yellow blobs coming out LOL) and Emmy has turned into a mouth breather, she seems so congested and I'm wondering if its her tonsils or adenoids. But everything is going really well otherwise. Even though the kids are yucky feeling, they are still happy :)

Finally, an update

2010-12-07T11:12:00.000-08:00

Sorry I've been neglecting my blog!

So we started Keppra, and it changed his behavior to the point that it was interfering with his therapy. He would just scream and cry and would not stop. So I called his neurologist and asked if I could wean him off of it because he had never really even had a seizure, and it was affecting him so badly. He said yes (and wants us to come in and talk about other meds - not sure I like that idea) and while Joey was coming off of it, he had a seizure :( But I still think it was BECAUSE of the meds. He has been off of them for a while now and is back to his happy cute self. :) Oh, and his favorite movie is The Sound of Music! It's so cute when he watches it :)

Results

2010-11-04T05:42:00.001-07:00

Well, the EEG showed some abnormal spikes in the lower left part of his brain. So now we are the proud owners of Keppra and Diastat. He has never had a bad seizure, just little partial ones. But the neurologist seems to think he is at high risk for epileptic seizures so he wanted us to start Keppra. I hope Joey doesn't have any of the behavior side effects, he is such a happy guy and I don't want him to start being cranky or aggressive. :(

EEG

2010-10-31T20:08:00.000-07:00

Joey had an EEG on Wednesday. The reason we did this is because he had an episode a few months back that I think may have been a partial seizure. He had been acting himself at all that day, only had like one bottle, and slept pretty much the rest of the day. That night I woke him up to get him to eat. He drank about half, and then didn't want anymore, so I didn't push it. About 15-20 minutes later, he threw up. Right after that, he went completely out of it. For about 10-25 seconds he wouldn't respond to me at all. I shook him gently, snapped my fingers, clapped my hands, all while calling his name, and he didn't look at me at all. Once he came out of it, he wasn't fussy or anything, he just fell asleep. And slept all night without waking once. So that makes me think it was a seizure of some sort. We go back to the Neurologist this coming Wednesday to get the results, so I'll update then. If any other Hydro moms are reading this, I'd love to hear your opinion on whether or not you think this was a seizure!

2010-10-06T12:22:00.000-07:00

I have a wonderful letter written by my blogging friend Jill. She wrote a letter meant for moms who have gotten the same diagnosis as us with Hydro babies, its an amazing letter of comfort. I just wanted to share it with you here.

Well...

2010-09-27T06:25:00.000-07:00

it's been a long time since I updated! Joey is just chugging right along :) He is doing really well in speech therapy. He has already overcome most of his feeding issues! His therapist says he is now eating just about right for where he is physically. Not crawling yet, but sitting up unassisted, and rolls around like crazy. He still hates it on his belly, so I don't know what we are going to do about crawling. Maybe he will skip it and go straight to standing and walking!

We just got back from a weekend stay in Gatlinburg in a big cabin up on a mountain. It was so beautiful! It was a 4 bedroom cabin, with a pool table, arcade games, wrap around porch, and a hot tub! My parents came, and my brother and his wife, and their kids. It was tons of fun for Emmy, she had a lot of fun playing with her cousins. My mom planned a tea party for us, it was so cute! She found some cheap play dresses and hats, so the girls loved getting all dressed up. Joey hung out with daddy and papaw and Uncle B outside, he loved it! He loves being outside!

Joey having his morning bottle with Grammy, out on the balcony.

The view of the mountains from the balcony :)

Emmy and her cousin, Marlee, all dressed up for our tea party!

Hi!

2010-07-22T13:30:00.000-07:00

Ok, finally an update! Joey is doing great :) Still getting PT and OT, and I think we will be adding Speech Therapy because he is having some feeding issues. He doesn't like pieces of food so we are still doing baby food purees. We also have a new toy, a stander. He actually really enjoys it! He is low muscle tone and just can't seem to figure out how to make his leg muscles kick in and stand himself up. He does it in my lap sometimes, but never on his own. He is still not crawling either, but rolls all over the place. He also just had his SECOND hair cut! He has some long curly hair that I LOVE, but he gets hot really easily so we had to cut it so he would be more comfortable. He is such a happy boy :) My sweetie!

Happy Mother's Day!

2010-05-09T07:23:00.000-07:00

May your day be blessed! Hope you all have a wonderful day filled with love and kisses from your little ones! :)

Almost time!

2010-05-08T05:51:00.000-07:00

For my trip! I'm so excited to make one of my dreams come true. Seeing the space shuttle is something I've loved for so long. I watch every launch on NASA TV. I've always been fascinated by space related things - and now I get to go to the best place in the country to see what the US has accomplished over the years. If I could be an astronaut and go into space I would do it in a heartbeat!!!! (Not to mention that I'm getting my first mommy weekend to myself since before Emmy was born!) SO SO SO excited!!!

One year ago today...

2010-04-23T06:54:00.000-07:00

My sweet boy came into this world!! It's been an amazing year. Wow, I can't believe it's been a whole year! I remember sitting in the triage prep area getting ready for my c-section, and having no idea what was going to happen. I was scared, nervous, and excited all at the same time. I wanted so badly to meet my little guy, but I was so scared at what was going to happen, worried that he was going to have a really big head, scared that he was going to have a lot of problems. They took me into the operating room to get my epidural, and I had a really rough time with that. The anesthesiologist was totally cold, he had no bedside manner at all. He kept telling me to lean over farther, but that's just slightly impossible when you have a huge stomach in the way. When he finally got it in, I started feeling sick and they had to give me medicine to keep me from throwing up (yuck) but I made it through. I was so out of it from the meds, but I made myself stay alert so I could hear what was going on. I heard them say they were pulling him out and then I heard him cry! It was the most amazing sound EVER. They took him over to get cleaned up and let my husband go over and watch, and then he got to hold him before they took him away to the NICU. He brought him over to me and my first thought was that he looked NORMAL. He was so beautiful, I was in tears. It was such an amazing day! And now here we are, a year later, and he is absolutely thriving! He is about three months behind physically, but other than that he is so smart! I am so so proud of my little man :)

Pics to come!

Happy Easter everyone!

2010-04-04T07:22:00.000-07:00

I'm sure we will all be hunting for Easter eggs with our kiddos today, but let's not forget the true reason we celebrate Easter. Jesus Christ has risen today! Alleluia!

Hope all of you have a happy and blessed Easter!!

(will add a pic of the kiddos later all dressed up :) we were lazy this morning LOL)

I am so excited

2010-03-28T15:55:00.001-07:00

I am getting my first real, true mommy break! I haven't had any REAL time to myself since Emmy was born. I am going to Florida BY MYSELF and meeting my parents there to do something I've wanted to do since 5th grade - watch the Space Shuttle launch! Ever since I went to space camp when I was 10, I've loved all things Space related. I even took an astronomy class in college as one of my electives. I've watched almost every launch online and read lots of space books and websited. I am soooo excited! The best part about the trip is that I will get an entire day to myself once I get there because my parents won't be there until that night. So I rented a car so I won't be confined to the hotel until they get there. I treated myself to a convertible! I will be able to cruise the coast as much as I want, go shopping, sit on the beach, anything! I'll be posting lots of pics once I get back of course :) Yay!

Hard to believe

2010-03-23T09:22:00.001-07:00

that my baby boy will be a year old exactly one month from today! This year has absolutely FLOWN by. He has done so much more than we expected initially. He is such a little miracle!

It's almost St. Patty's Day...

2010-03-05T22:09:00.000-08:00

So I thought I would share with you my favorite Irish Blessing (Yep, I'm Irish) :D

"May the road rise to meet you,

May the wind be always at your back,

May the sun shine warm upon your face,

May the rains fall soft upon your fields,

and until we meet again,

May God hold you in the palm of his hand."

Updates

2010-02-24T10:37:00.001-08:00

Joey started OT last week. Hopefully that combined with PT will help him progress faster. He is growing so fast and getting so big!

Happy Boy!!!

Stuff

2010-02-02T17:49:00.000-08:00

... I can't seem to make up my mind for my background!!

Not a whole lot is going on right now. I guess that's good though, because that means that everyone is in good health! Joey is chugging right along with his PT. He is still holding himself back though, by being such a lazy guy! He is starting to get a *little* more interested in exploring, though. When he lays on the floor he scoots himself around in circles. He also does that in his sleep. There have been times where I get him up in the morning and he is in the opposite position I put him in when he went down for the night! That's a good thing though. Baby steps. Hopefully soon he will get stronger and tolerate more tummy time.

I *will* start posting more pics! I am so bad about that. All of you need to see my cute little (big!) chunky boy :)

Happiness

2010-01-25T20:44:00.000-08:00

"When one door of happiness closes, another opens, but often we look so long at the closed door that we do not see the one that has been opened for us."

Helen Keller

:) Great quote!

First Steps Evaluation

2010-01-21T07:03:00.001-08:00

Joey had his 6 month evaluation with First Steps. I can't believe he's been getting PT for 6 months already! He has come a LONG way since he first started, but we still have a ways to go. His therapist has put his gross motor skills at a 5-6 month level (he is actually 9 months). He still can't sit unassisted, only rolls to get off of his belly (he HATES being on his belly), won't get on his hands and knees, etc. So we've gotta get him exploring his environment more. They recommended we add OT to his therapy sessions. Hopefull that will help and he will get more motivated to MOVE. He is so lazy :)

New Year, New Background

2010-01-19T09:09:00.000-08:00

I decided to change things up a bit :)

I'm feeling very optimistic about this upcoming year. 2009 was tough - not bad, just tough. God really tested me by giving me so much to deal with, but I believe I have come out a much stronger person! I am so grateful for everything I have in my life - a wonderful husband, amazing children, and an awesome family. I'll never take anything for granted again! :)

Slacking!

2010-01-14T06:24:00.000-08:00

I don't know why I can't make myself keep up with this blog. Nothing is really happening to blog about I guess... Joey is still doing awesome. He has his 6 month evaluation with First Steps (Early Intervention program in KY) to see if he needs any other therapy added in at this point. I don't think he does really, he is still only behind in his motor skills. He hates being on his tummy, not because he can't lift his head or anything, but because it makes him work! He is a lazy baby :) He would be super happy if he could just lay on his back all day, or sit in his jumperoo. He LOVES that! I'll have to post some pictures soon - he's gotten so big!

Merry Christmas!!!

2009-12-25T09:19:00.001-08:00

I hope everyone has a wonderful blessed Christmas with their little ones! :)

Important day that changed my life

2009-12-19T18:56:00.000-08:00

It was exactly one year ago today that we found out about Joey's condition. It was an incredibly scary day that I'll never forget. But wow, what a difference a year makes! I've been blessed with an amazing, sweet, happy, miraculous little boy!!! He's so amazing! I'm sure we have more challenges to face down the road, but we will face them head on because I know we can handle it!! God is with us all the time! Without Him, I never would have been able to get through the past year. Thanks so much to all my friends and family for praying for us and helping us through such a rough time!

Just in case...

2009-12-05T05:56:00.001-08:00

Just in case any of my family is reading this and are curious about the "Praying for Matthew" picture, he's a cute little boy who's blog (well his mom's lol) I follow. He has hydrocephalus as well and he spent 38 days in the hospital :( He FINALLY got to come home! If you would like to read their story, just click the pic.

:)

It's been a while :)

2009-11-24T19:42:00.000-08:00

I haven't posted in forever!! I've had a lot going on - most of all my hard drive crashed and I had to get a new one :( But everything has been going pretty well with the kiddos. Joey is just chugging right along! He is progressing SO well and amazing us every day. It seems like since his shunt revision he has just made MAJOR leaps in his development. He is holding his head up amazingly well, almost sitting up on his own, and talking like crazy! He's such a happy guy. I feel so blessed to have him!

Emmy is FINALLY working on getting potty trained. She resisted and resisted and finally one day something just clicked and she started going on the potty. She still has accidents of course and wears a pull-up for naps and bedtime and when we go out somewhere but wears panties when we are at home. I'm SO happy! She is such a stubborn girl just like her mommy :)

We are also getting prepared for the holidays. I can't wait for Christmas this year - it's going to be so much fun for Emmy!! I can't wait to take her to the mall to see Santa and get her picture made. I also can't wait to see Joey with the lights on the tree. He absolutely LOVES anything that has lights on it so I know he is going to love the tree.

I hope everyone has a wonderful Thanksgiving!!! :)

All is well :)

2009-10-26T13:37:00.000-07:00

Just wanted to update quickly to let you all know everything is awesome! Joey is doing so well - its like nothing ever happened. We also had Emmys birthday party at Chuck-E-Cheese. She had a BLAST. She wasn't scared of the mouse at all. In fact, she loved him! She followed him around and kept asking for hugs. LOL!

I have tons of stuff to do in the next few days to get ready for our trip. We are heading down to SC to visit my parents! We will trick or treat down there, so I will post tons of pics when I get back! :) Emmy is going to be Minnie Mouse and Joey is going to be a skunk since I always call him little stinker ;)

Have a Happy Halloween everyone!

Happy Birthday!!!

2009-10-13T06:39:00.000-07:00

To my sweet little girl Emmy!!!!!! She turns the big 3 today :)

Time goes by way too fast - seems like just yesterday I was holding her all swaddled up. Awww!

Happy Baby :)

2009-10-12T06:03:00.000-07:00

Yep, he's back to his old self. What a relief!

Home!

2009-10-09T11:56:00.000-07:00

Yay! I'm SO glad to have him home. He's still a little out of it, and not quite himself. Also a little swollen from all those fluids he got. But he's home! His incision looks bad, but they used that glue to close it up instead of sutures. I'm just so glad its all over. Man what an ordeal!

Done :)

2009-10-08T18:23:00.000-07:00

The surgery went well! Turns out the cathater/tube that goes from the shunt to the ventricles was clogged! Stupid doctors, they need to learn how to listen better to the parents - I mean who knows their kid better than the mom!!!! I told them and told them that it was his shunt and they swore that it wasn't because his CT looked good. So he is snoozing now - he's eaten a little and kept it down! Yay!!! The neurosurgeon said if he has a good night that he can go home tomorrow. YAY!!! I want him home sooo bad. I'm staying at the hospital tonight with him - thank goodness for wireless internet! :)

Surgery scheduled

2009-10-08T07:00:00.000-07:00

for around 11 this morning. My husband stayed all night with him so I could come home and sleep and stay with Emmy - OMG I was so tired. He said Joey just slept - he's so lethargic. Poor guy! I'll post again after the surgery to let you guys know how it went. Keep him in your prayers!

What a loooooooong night

2009-10-07T16:59:00.000-07:00

I believe we are dealing with our first shunt malfunction. Yesterday afternoon Joey went from happy - fussy in about an hour. Then he threw up. He was being quite lethargic, and while I was holding him I noticed his soft spot was bulging slightly. That sent me into panic mode - immediately I thought it was his shunt. So off to the ER we went. We actually didn't wait very long - I guess an infant puking everywhere in the floor alerts someone LOL. Poor little thing was SO dehydrated that they couldn't get an IV in him for anything! He got stuck like 10 times. Finally they got an ok from one of the neurosurgeon residents to do a scalp IV (these are usually a No-No to a child with a shunt - it was eventually taken out). Well after being observed all night with no bottles or anything, he just slept mostly. This morning I gave him a bottle, and he threw that up EVERYWHERE. Waited a while, tried again. Nope. Tried pedialyte, because I knew he had to be out of whack. Nope, that came up too. At that point he got the scalp IV, and that managed to get him hydrated enough. He also got anti-nausea meds. That must have done the trick, because he hasn't thrown up since. Poor little thing has been sooo sleepy. He was seen by several neurosurgeons, and they had the general concensus that it wasn't his shunt, but that he had a viral infection. What that had to do with his soft spot bulging, I have no clue, so I asked again to see the neuros to see what was up. FINALLY, the cheif neuro came in who is also the one who placed his shunt at birth. This guy is the bomb. I wish I could have seen him when we got in, because he immediately agreed with me that its the shunt. He did get a CT and Xrays in the ER and those came back ok (they even said that his ventricles looked the best they have ever seen them) but I was just worried about that soft spot. He felt it and agreed, so they tapped the shunt and the fluid was clear, but they weren't able to get any out other than what was in the little tube going to the syringe. That's not exactly normal, so I guess its a good chance its not working right. So as far as I know right now, he is going to have surgery sometime tomorrow to look at the shunt and see whats up. I just hope its not infected - that means a week hospital stay and I want him HOME! Seriously, my heart is breaking that he's not here. :( I stayed with him last night while Lee stayed with Emmy, so tonight is my turn to stay home with Emmy, which is AWESOME because I didn't get a wink of sleep and I need a shower badly. So I'll update as soon as I know something. Pray for my little guy!!!

Been a while :)

2009-09-24T12:11:00.000-07:00

I haven't posted in a while! Everything is still going amazingly well! Joey is doing awesome with PT - he makes progress every week. He has awesome head control now - we are working on helping him hold his upper body steady now along with his head. He isn't quite rolling just yet, but he's getting there. He isn't really interested toys, but he's getting better with that too. He loves to look at his hands! It's so adorable.

On another note, my big baby turns three next month! Where has the time gone?

What a talker!

2009-09-05T18:22:00.001-07:00

Joey loves to talk! He's recently figured out that he can gurgle, so now he does it non-stop. It's so cute! Here's an example :)

Whoa!

2009-09-02T08:35:00.000-07:00

Joey had PT today, and he totally kicked butt! I think he got more done in 30 minutes today than he has in the whole time he's been getting therapy. He's had trouble with lifting his head, so we've been working on tummy time a lot. She brought one of those swim noodles to use for tummy time. She cut a small piece and put it under his armpits and propped him up on it. He lifted his head RIGHT AWAY! AND he held it up for almost 10 seconds! I'm so glad she brought that - I was so excited I nearly cried :) She also brought a pinwheel and he followed it 180 degrees. All the way from one side to the other. This is a big deal because he can't move his eyes from side to side yet, but he's starting to do it. And he stays focused on objects a lot better than he ever has. So he locked on to the pinwheel and followed it all the way over. I'm soooo happy!!!!!!!

ALSO - September is National Hydrocephalus Awareness month!!! Spread the word!

4 month stats :)

2009-08-27T10:13:00.000-07:00

He's a big boy! He's 16 pounds 6 ounces, and 24 inches long! The pediatrician pulled up the report from the radiologist from his MRI a couple of weeks ago and it said that Joey has an underdeveloped Corpus Callosum. It didn't say anything about the Septum Pellucidum, but she said the neurologist would have to look at it and see if there's an issue there. But all in all he's in great shape! A very healthy boy. And we don't have ANY doctor visits schedules AT ALL during September! YAY! I can relax for a bit :)

Just so happy :)

2009-08-23T18:15:00.001-07:00

Joey is doing SO well! He is kicking butt at his PT. After only three sessions, he is holding his head up SO much better and not letting it droop when you pull him up from laying down. I haven't gotten the results from his MRI last week though. I have a feeling that they aren't going to call me... they never did after his CT so I will probably just end up going down and getting my own copy of both of them. I really want to know what his brain looks like now after having his shunt. I hope I hear something soon.

I leave you with a pic of my happy little guy :) Sorry it's a bit blurry, it was taken on my phone. But I love it so much I just had to share!

Update

2009-08-11T09:14:00.000-07:00

Joey had an appointment with a neurologist for the first time today. I'm really glad we went, because I found out that Joey has a thinned or absent septum pellucidum (I think that's how its spelled) and possibly a thinned corpus callosum (?) which could be the cause for his eye issues. I wish someone would have told me that a lot sooner, it would have saved me a lot of worry. But at least now we know. It's very hard to know what's going to happen at this point since he is still so young. But at least we have a better idea of what's going on. He has another MRI on Friday. It will be interesting to see how his brain looks now that he has a shunt (his first one was done before he had his shunt placed).

Much improved!

2009-08-10T20:16:00.000-07:00

Joey had more PT today, and she was amazed at his improvement in only a week! He went from not wanting to hold his head up at all during tummy time to doing it automatically! He can only hold it up for a few seconds before he gets tired, but the fact that he's doing it now is amazing! He's getting so strong. I'm so proud of my little guy!

PT

2009-08-03T13:08:00.000-07:00

Joey had his first PT session today. He did really well! His therapist was really impressed with his head control. He does a really good job holding it steady when he is sitting upright but he can't pull it up when he does tummy time or if it falls forward. But he's well on his way to being able to do that. She's more concerned about his eyes and his tracking. But we are going to work on that until he has his follow up at the new eye doc, hopefully he will be better by then. But everything else is going really well!

Updates

2009-07-27T14:00:00.000-07:00

So I made an appointment to see a different eye doctor. We are going on Wednesday. It will be interesting to see what this new one says. I just left the other one feeling confused and frustrated, with no answers. You shouldn't leave a doctor's office feeling that way. I'll definitely post and let you all know how it goes!

He's also going to start PT soon. The therapist is coming over Wednesday afternoon to check him over and we will talk about goals, etc. that I want for him.

On another note, I had a physical today, and they did an EKG. It came back abnormal, so I get to go and take a stress test in a couple weeks. Yay! (Insert sarcasm) Nah, it won't be too bad. I doubt anything is wrong, but if there is, I would rather find out sooner than later!

A little miffed...

2009-07-16T14:33:00.000-07:00

So Joey has been having some issues with tracking objects from side to side. We know he can see, because he looks at us and smiles and stuff, and he can move his eyes up and down, just not left to right. I've been taking him to an eye doc. We had our first appt like three weeks ago and she said, well maybe hes just a bit delayed, lets give him some time to grow a bit. We weren't due back until October. But then she decides to call and make me an appointment for yesterday, so we go, and she starts wondering if maybe he has a TUMOR. I was like um, what? He had an MRI, and that was ok. So she goes off to call Radiology and they look at his MRI and see that there is nothing indicating a tumor. So she comes back and tells me this, and wonders maybe if he's had a small STROKE at some point. A stroke? What the heck. Basically she can't find any reason for this other than those things or a shunt failure, which he isn't have any signs of at all. I'm thinking she's full of it... time for a second opinion? Ugh. She ordered another MRI for him with contrast dye this time. I knew he would have another at some point - she's going to get with his neurosurgeon and see if there's anything particular he wants to be looked at so we can take care of two things at once. Ya... needless to say I'm a bit frustrated.

My big girl!!

2009-07-09T05:10:00.000-07:00

She's slept in her big girl bed for the past three nights! I'm so glad! Now we can start transitioning Joey into the crib, because he's getting pretty close to outgrowing his co-sleeper that's next to our bed. I took Emmy shopping so she could pick out her own bedding. They had all kinds of cute things at Walmart. Tinkerbell, Disney Princess, Flowers, Hannah Montana, and guess what she picks. Thomas the Train! Haha - she LOVES to watch Thomas. So I got it for her - I figured it would make her excited about sleeping in it. And it has! She's done so well with staying in bed once she lays down. And she's only fell out once! I tried getting a rail, but it was really cheaply made, so I'm returning it. Kind of makes me sad... my baby girl is growing up!

On another note, I haven't heard from my insurance or Duke about the cord blood infusion... ugh I sure hope my insurance will cover at least part of it.

Happy 4th Everyone!

2009-07-04T11:26:00.001-07:00

I hope you all have a wonderful holiday!

Changes

2009-07-03T05:54:00.000-07:00

Well, I decided to change things around a bit in the spirit of summer. I thought I needed a nice summery background, along with a new header, which is under construction. One of these days I'll catch Joey smiling and actually have my camera in hand.

And now for a Joey update. Now that he's pooping, he is so much happier! He smiles all the time now! I love them - wide open mouthed, gummy grins! Best thing ever. So he's pooing, his vision is good, his shunt is working, and he can see! I couldn't ask for more. The lady from First Steps is coming over on Tuesday to evaluate Joey to see if he needs PT, which I think he probably will, because he can't pick his head up if it falls over. He can hold it up REALLY well, but its just so heavy that he can't stop it if it starts to fall. I know he's still young, but he's already amazed me with what he can do. He is our little miracle! I feel so blessed to have him :)

We figured it out I think...

2009-06-27T06:01:00.000-07:00

So the doc said Joey has something called "Anal Stenosis" which basically means that its too narrow "in there" to allow him to push the poo out the way he should. Kinda funny since the reason for his Hydro is "Aqueductal Stenosis." Anyways, we gave him an enema and a suppository and whoa, talk about poo explosion. The poor guy was really backed up. We also give him a little bit of Miralax and put oat cereal in his formula three times a day. We have to keep the poo as loose as we can until the doc shows me how to use a thing to dialate in there so it stretches everything out. He's pretty sure Joey will outgrow this problem, so in the meantime we just give him the stuff to make it easier for him to go. I can tell he feels SO much better after going finally. Poor guy!!

Hmm...

2009-06-21T09:33:00.000-07:00

Poor Joey has been having issues going poo! He was ok for the first few weeks when he was breastfed, but since I had to stop, he's been having problems. The first formula we tried was soy, and he didn't have any problems with that other than being gassy. I thought maybe it was just because of the soy, so I tried a milk based formula. He still didn't have any issues going so I thought I'd try the gentle version of that formula. And THEN he started getting constipated. He would strain and strain until his face turned red and cry because his poor belly hurt. He went a whole week without having a substantial poo, just little bits here and there. After trying Karo syrup and apple juice, I finally had to resort to a suppository, and that did the trick of course. Nothing else seems to help other than that. We've been to the pediatrician a couple of times and... nothing. He went another three days without going so they told me to give him another suppository. Poor thing! We have an appointment with a pediatric gastroenterologist to try and sort this out. It's on the same day as his checkup with the neurosurgeon, so I'm glad to get two visits out of the way in one day. I hope we get this figured out so he can poo like a normal baby!

We're back!

2009-06-11T12:34:00.000-07:00

What a cool experience that was! I learned a lot and I feel very optimistic about my little guy's future :) Besides seeing Dr. Kurtzberg for the cord blood infusion, we also saw Dr. Mikati (a pediatric neurologist) and he said he was very encouraged by Joey and that he looked very good! He didn't exhibit any issues other than a possible delay in his tracking objects, but its very common for Hydrocephalus babies to have delays in vision and hearing. I'm so glad my guy is doing so well!! The power of prayer is so amazing!

Going to Duke!

2009-06-03T08:18:00.000-07:00

Next week! Thanks to Owen's mommy! I'm so glad we can do this. I know there's no proof that the cord blood helps but even if there is the slightest chance it will help I'm all for it. I just hope our insurance covers it...

Heart Healthy

2009-05-28T09:47:00.000-07:00

Yep, we've overcome yet another thing! Joey had his follow-up with the cardiologist today because he was born with a small VSD, so he has a murmur. The doc today said everything was fine, and he would bet money that the hole would close up on its own. Thats pretty much what we've heard from everyone else, so I wasn't too worried about it, but it felt nice to hear it again! Yay!!

Another hurdle overcome!

2009-05-26T06:24:00.001-07:00

So Joey had his hearing checked while in the NICU and they told us he failed in his right ear. We went to the Ear Nose and Throat specialist to get his hearing rechecked, and YAY! He passed in BOTH ears! I'm so glad we have one less thing to worry about! Now to get the trip to Duke straightened out :)

Not much new to report...

2009-05-15T17:48:00.000-07:00

Yep, its been pretty much normal newborn stuff, other than the extra trips to the different doctors. Joey went to the neurosurgeon yesterday to get his stitches out and to check and see how he's doing. That went fine - he's not acting any different than he should be. Should get another MRI sometime in the next 4-5 months to see how his brain looks. He was SUPPOSED to have his hearing double checked, but silly me goofed and missed the appointment. We rescheduled it for the 26th. Then on the 28th we go see the cardiologist to check out the little hole in his heart. I'm not too concerned about that really, it's so common and most of the time they close up on their own.

That's pretty much it! Joey's a good eater and only wakes up twice in the night, except that he seems to have his days and nights a bit confused, but that's normal too. I could use a bit more sleep though! Hard to do when you've got a toddler to chase after!

Happy Mother's Day!!!

2009-05-10T06:55:00.000-07:00

I just wanted to wish all the wonderful mommies who follow me on here a Happy Mother's Day! :) I hope you all have an awesome day spending time with your kiddos!

Been a busy week!

2009-05-04T17:05:00.000-07:00

It's been quite an adjustment from one kid to two, but nothing I can't handle. The hardest part is that Joey's been having some issues breastfeeding. He latched ok in the hospital, but once we got home he decided he didn't want to do it anymore. My supply has been suffering from so much bottle feeding. I've used up my frozen supply I pumped while I was in the hospital. I've been trying to keep up the pumping, but I can't seem to get enough to get through any longer than overnight. Maybe I'll try Fenugreek... I heard that works really well. Oh well. Whatever happens he will be fed whether its formula or breastmilk.

We're home!

2009-04-30T14:49:00.001-07:00

Whew!! What a relief. If I EVER see that NICU again it will be too soon. They took great care of him but I'm just so glad to have him here with us. His big sister is in love with him already. Her reaction was so cute! I got it on video. I'll try to upload it on here if I can figure it out. Yay!!!! We have a bunch of appointments to go to of course, but I can deal with that. Cardiologist, Neurosurgeon, Hearing test (he failed the hospital one on his left side) and of course the primary pediatrician.

He's going to be a MAJOR eater, I can tell. He's a bit of a slow nurser - he's having a hard time getting the hang of it, but I just kind of thought its because I didn't get to do it a whole lot while he was in the NICU. I'm hoping now that we are home I can nurse him to his hearts content and he will get better at it. If not, I'll pump, no big deal. He is just so amazing!! I am so glad he's home :)

TOMORROW!

2009-04-29T10:53:00.000-07:00

Joey's coming home!!!!!!!! He has done so so well. I went to see him today and he nursed for twenty minutes AND had a 50ml bottle! And he was acting like he wanted more. What a little piggy :) He stayed awake for a while too so we just hung out and had a little conversation. He's such a happy little guy!

Surgery done!!

2009-04-28T08:37:00.001-07:00

Everything went great! No complications at all. But I wasn't worried about that. I was more worried about seeing my little guy all hooked up to the monitors and stuff - just normal mommy stuff. Its not very fair to make a mommy who just had a baby with hormones all out of whack go through something like this!

I hope its only a couple of days before he can come home!

Surgery is scheduled!

2009-04-27T16:55:00.000-07:00

for 7:30 am. We are going to go in at 6:45 or so to spend a little time with him before and then I guess we will just hang out before he goes back. I'm already a nervous wreck thinking about it :) but I know its normal and I know he will be fine. This is the last hurdle to overcome before he can come home! I cannot wait for him to be home with us!!!!!

Miracles can happen :)

2009-04-27T06:37:00.001-07:00

When we went to Cincinnati for the MRI and everything after we found out about Joey's Hydrocephalus, they were pretty sure that Joey had a problem with his bowels. Worst case scenario was a colostomy bag and lots of corrective surgeries. Well when he was born, we were of course concerned that he hadn't had a bowel movement. Well, a couple of days went by without one, and we asked the nurses about it and they said they couldn't find any reason to show why he hadn't had one. They did a lower GI on him where they inject Barium into his little bottom and they couldn't find any obstructions or anything, and lo and behold, the Barium acted like an enema and he had a GIANT poo!! The nurse said she had never seen a poo so big. We are soooo thrilled! We have hoped any prayed that the bowel thing wouldn't be an issue because in Cincy they couldn't tell for CERTAIN whether or not there was a problem, but they were pretty sure. But there's nothing!!! The only hurdle left to overcome is the Hydrocephalus. We still need to schedule the surgery - hoping that will happen in the next day or so.

God is good!!!!!

He's amazing!!

2009-04-25T12:34:00.000-07:00

Wow we have the most amazing little boy! He's doing so so well. If it wasn't for the Hydrocephalus then he would be perfect! His head hasn't changed size since he was born. My husband talked to a neuroseurgeon who was down there checking Joey out and he told us about a procedure that Joey could be a candidate for. It's for babies who have a certian kind of Aqueducal Stenosis. If its blocked or narrowed they can go in sort of like an angioplasty and dilate the Aqueduct of Sylvas and open it up. We've been researching it and it seems like it has a very good success rate! It carries a bit more risk than the VP Shunt but its also most likely a one time deal! So we are definitely looking into this. Plus if for some reason it doesn't work he can still get a shunt so either way he will be ok. I'm just anxious to do SOMETHING so he can get better and come home! I'm supposed to be going home tomorrow, and Monday we will hopefully be able to get the surgery scheduled for very soon after. It's been nice having free wireless internet in the hospital so I can keep you all updated!

Here's a link to my facebook photo album :)

http://www.facebook.com/album.php?aid=243062&id=606665011&l=dca2099891

Welcome to the world!!

2009-04-24T08:16:00.001-07:00

William Joseph Sabel made his entrance into the world yesterday at 10:45 (or close to it - wasn't exactly paying attention hehe) weighing 10 lbs. 2 ounces! Wow whatta big boy! I couldn't go up to see him until today because I couldn't get out of the bed. The anesthesia made me sick most of the day. But this morning once I finally got unhooked from everything I went up to see him. He's a cutie! I got to try and breastfeed him, but he was pretty tired. So I got to give him a bottle with a little of my colostrum mixed in. I've been trying to pump, but I haven't gotten a whole lot out. I'm hoping my milk comes in today so I can pump some actual milk for him. Here is a pic!

The countdown begins!

2009-04-20T07:28:00.001-07:00

Thursday morning at 7:30 is when I'm supposed to be at the hospital! I'm so so glad. I'm ready to meet this little (big!) guy!

Well...

2009-04-15T10:16:00.000-07:00

We had the amnio and the results are in. His lungs are not quite ready yet. I'm pretty bummed - I'm extremely uncomfortable since I could be carrying a TWELVE POUNDER. I'm just conflicted because I want him to be as healthy as possible but at the same time I'm completely miserable. Not to mention that my parents are on a plane at this moment coming here! I don't know what they are going to do.

Doc Visit today... anddd....

2009-04-13T10:27:00.000-07:00

I'm contracting! I've been having strong BH for weeks now, but today while I was getting my NST they picked up. They started coming 3-6 minutes apart and were almost painful. They checked me and I'm 2cm dialated but she couldn't feel his head pressing on my cervix, so chances are it won't drop any lower because its so big. But who knows. She sent me home to relax and see how things go. If nothing picks up or gets worse, I'm supposed to go back Wednesday for an amnio (thought I was gonna get one today, but oh well) and if all is well then I'll go in Thursday morning for my csection!!!

Met more Dr's today

2009-03-26T13:48:00.001-07:00

We met the pediatric neurosurgeon today, and also the neonatologists. I feel a lot more prepared now in case something should happen and my water break or something. I'm still scared about it all, but I'm just so ready for Joey to be here so we can start taking care of him!

News...

2009-03-23T12:51:00.000-07:00

Today was Dr. visit number 823948234. Not really, but it felt like that. I had a non-stress test (which I have been having twice weekly), an ultrasound, and then we saw the doctor. The NST's are pretty boring, but at least I get to hear Joey's heartbeat going strong. The ultrasound wasn't really anything new - his head size is measuring very big, along with his belly. They think he may weigh around 8 pounds already (of course most of that weight is from the excess fluid). So next step is to meet the neurseurgeon on Thursday so we can talk about what's going to happen once Joey is born. THEN more NST's, a doctor visit in two weeks just to check blood pressure and stuff, and then another ultrasound in three weeks along with an amnio to check and see if his lungs are mature, and if everything's looking ok, they could possibly schedule a c-section for the following Thursday! Nothing's definite yet, but it helps to see the end in sight know when that might be!

Waiting

2009-03-10T06:36:00.000-07:00

I'm getting so impatient! I wish I had a better idea of when Joey will be born. I went to the doctor yesterday and I didn't learn anything new other than that my belly is measuring ahead, but I could have told them that. I'm also having non-stress tests twice a week to make sure Joey is ok. Had my first one yesterday and it went fine other than my blood pressure dropping out while I was sitting in the chair. Gotta remember to lay on my side more often!

Finding out more info...

2009-03-03T07:06:00.001-08:00

Well, I've been emailing and talking on the phone trying to find out if my insurance will cover the cord blood thing. Based on what I've heard from the lady at UK thats in charge of billing, it depends on how its coded, and most likely it will be a basic IV infusion, then its likely to be covered. Another story is the actual cord blood collection kit, hopefully I can find out more about that soon. Ugg... I hate money. Everything is so expensive.

Another step...

2009-02-24T09:13:00.001-08:00

Mom has gotten the ball rolling for banking Joey's cord blood. One he's strong enough to travel we will go down to Duke University to infuse the cord blood with the Dr. that I read about on http://www.fetalhydrocephalus.com She's done a lot of research on cord blood therapy for Hydrocephalus and it shows promising results. While there's no definite evidence that it helps, there's no evidence that it DOESN'T help either, and if there's even the slightest chance it could help with some of Joey's damaged brain cells I want to try. It's not cheap though, so that's of course my only worry about it. How in the world will be be able to afford it? Mom is a huge help, she's sending a letter out to the family to see if anyone would be interested in helping out. Hopefully if we can pool all our resources we will be able to come up with enough.

No news is good news

2009-02-23T09:38:00.000-08:00

We didn't learn anything new today, which is good. I'm always so nervous for appointments, afraid that they are going to tell me something bad. But everything was the same, so that made me feel better. We discussed the birth, which basically is going to be determined by the size of his head, or if I go into labor on my own, whichever comes first. I'm going to start having non-stress tests at my next appointment, and they are going to try to coordinate so I can meet with the pediatric neuroseurgeon, neonatalogist, and geneticist too so I can get all my bases covered. So we are getting closer! Oh, Joey's turned head down, which would explain why I've been SO uncomfortable lately. Right now the majority of his weight is in his head (from all the extra fluid), so having all that down so low has been a bit rough, but I'll deal with it if it keeps his lungs healthy and keeps him from coming too early!

And again...

2009-02-20T18:08:00.001-08:00

Well, I have yet ANOTHER Dr. appointment on Monday, at UK, so I can meet the OB who will be delivering Joey. I've met so many people in the past few months its hard to keep them all straight! I'll be talking to this Dr. also to get the name of a pediatric neuroseurgeon who will be doing the shunt surgery on Joey.

I'll just be so glad when Joey is finally here, because at least that way I'll be able to see him and touch him and know that he is ok, and I can get the words "spontaneous stillbirth" out of my head. Right now that's my main worry. Since there's nothing we can do right now about any of the issues, that's about all I have left to worry about. We are getting there! I'm 29 weeks right now, and usually based on the blogs i've been reading, 32 weeks is about when the births started. Of course I don't want Joey to be born until he's as ready as he can be.

Well, that's about all for now. I'll update again after the appointment Monday.

Hurry up and wait...

2009-02-11T09:19:00.000-08:00

It's the worst part. Sitting and waiting and worrying about what could be. But at the same time trying to think positive. It's the toughest thing I've ever had to do. But I definitely couldn't do it without all the love and support i've been getting. To all my friends and family, thank you! Here is a wonderful poem that a friend of my hubby sent him. It helps me to feel a lot better.

The Special Child---

The child, yet unborn, spoke with the Father.
"Lord, how will I survive in the world?
My walk may be slower,
my speech hard to understand.
I may look different.
What is to become of me?"
The Lord replied to the child,
"My precious one, have no fear.
I will give you exceptional parents.
They will love you because you are special,
not in spite of it. Though your path through life
will be difficult, your reward will be greater.
You have been blessed with
a special ability to love, and those whose lives you
touchwill be blessed because you are special."

author unknown

We're home!

2009-02-02T16:12:00.000-08:00

And that was about the longest day of my life. We learned quite a lot but didn't really get any good news. Nothing has improved really but since we found out the cause now for the fluid buildup it won't get any better until after he's born and can get a shunt put in. Its just a matter of how fast the fluid builds up as to when he's born. They also found some new issues...He has a small hole in his heart between the two major valves. The cardiologist wasn't really concerned about it though. He said most of those end up closing up on their own. The other thing was that there might be a problem with his bowels. You could see on the MRI picture the bladder and the rectum behind it, and the meconium in there. It didn't go all the way down to the anus (gotta love the technical terms) and they are concerned that there might be a blockage or some malformation that will have to be fixed after birth. Neither of those things are something to be really concerned about at this point though. The other things that showed up were a shortened chin bone and widely spaced eyes. Both of these things can be an indicator of something genetic that wouldn't necessarliy show up on the amnio, so we may have to do some blood tests on him once he is born. So ya. I feel a bit better because I am more educated on everything and all possible tests that can be run at this point have been done. But bummed because there was no good news.

I'm getting nervous...

2009-01-29T09:37:00.000-08:00

It's almost Monday and I'm getting nervous about the appointment! But I'm also kind of looking forward to it at the same time. I found a neat video on the website for the Fetal Care Center and it pretty much explained everything I'm going to be doing while I'm there. I should definitely know more once we get it over with. I'm just nervous though because I'm afraid they are going to tell me something bad... because each appointment we've had things have gotten worse. Ugh... oh well. Better to be informed and prepared for all possibilities.

Schedule for Feb. 2nd

2009-01-22T09:58:00.001-08:00

We've got an EARLY start. We will have to leave the house between 4:30 and 5:00 to get there on time.

MRI at 6:30 a.m.
Ultrasound at 8:00 a.m.
ECHO at 10:30 a.m.
Meeting with a Family Support person at Noon
Fill out Medical Forms at 12:30
Meeting with Social Services person at 1:00
Meeting with Genetics person at 1:30
Meeting with all the doctors at 3:00

Then we are done! Wow what a long day that will be...

Reality

2009-01-21T11:00:00.000-08:00

It's all sinking in today. I don't know what's with the delayed reaction, but now that we finally have the appointment in Cincinnati, I'm kind of freaking out now. This is going to be a major life change. There are still so many unknowns, it's hard to know what to prepare for. I know we will get through it, but it's not easy right now. Once I get all the freaking out from my system, I'll feel a lot better, but right now its tough.

Finally!

2009-01-21T07:32:00.000-08:00

We have an appointment! February 2nd. Not sure of the time yet, i'll update when I know. But at least we have a date!

Found a cute layout!!

2009-01-20T08:53:00.001-08:00

Now I'm blogging in style! :)

Impatient

2009-01-16T08:15:00.000-08:00

Well I've called my doctor several times telling them that I haven't heard from Cincinnati yet, and they keep calling up there to check, and still they don't have an appointment for me. Apparently some doctors took time off (How dare they!) so they are still trying to coordinate all the appointments and tests so I can spend the whole day there instead of having to go several times. Ugh. I'm just ready to get this over with!

First things first... the diagnosis

2009-01-12T08:18:00.001-08:00

I haven't really blogged before, but I felt like now is the time so I can have an outlet to express my feelings and keep my friends up to date on whats going on during this difficult time. So here we go...

Lee and I were thrilled to find out that we were pregnant with number two! We were trying, but I hadn't really thought much about it because it was the busy time at work. So I was totally surprised because I hadn't been expecting to get a positive test! He was half asleep when I showed him the test, so I think it didn't really register with him right away until after he fully woke up. LOL My parents were visiting too because it was my grandma's 90th birthday and the family was getting together for a big celebration. So I showed my mom the test when I came downstairs with Emmy and she thought it was a thermometer! Haha - no Mom, thermometers don't have two pink lines on them. I didn't tell anyone else for the rest of the day except for my brother and sister-in-law, who sort of guessed on her own. From then until recently I went through pretty much the same thing as I did with Emmy, nausea, headaches, and tiredness. But it was approaching the time for our 20 week ultrasound, and I was praying and praying that Lee was getting his first son. I know how badly he wanted it, so we were super thrilled to find out that it was indeed a boy!! The rest of the ultrasound went fairly routine - the tech asked us if we were seeing the doctor after and we said yes, so she said, "ok, ill just send these to her and she will talk to you about them" which didn't initially register as odd until after we got home. We sat in the waiting room texting and calling everyone we knew to tell the good news, and then the nurse called us back. We sat in the exam room waiting, still just on cloud nine! Not long after, Dr. James came in and said ok well lets talk about these. She then went on to explain that something didn't look right with the baby's brain, that there was an excess of fluid. I was in shock, I couldn't even say anything. She then said that she couldn't really tell me anymore than that, so she was sending us right over to a high-risk OB so we could get more information. She left then, to give us a second to let it sink in, and then she came back with an address and a phone number, and said to go right over, and we would get right in. She was even nice enough to let us go out the back way so we didn't have to walk through the waiting room while crying. So we went out and walked right over to the new doctor, which was right across the street from my regular OB. We got in and went back for another ultrasound, and the tech and Dr. Campbell were very very nice. They explained every little thing they looked at showed me exactly what they were concerned about. They asked if I wanted to do an amnio, and I said yes, because I wanted to rule out everything possible, and that came back normal thankfully. The waiting was really hard, but we made it through. I went back this past Friday (at almost 24 weeks) for another ultrasound to check the fluid levels and they had unfortunately gotten worse. Joey is measuring about 2 weeks ahead, which isn't bad because Emmy measured big too, but his head measurements were at about 30 weeks along, which scared me to death. Not to mention when tihe doctor told me that this increases the risk of stillbirth. The fluid is pressing on the brain so much that all we saw on the ultrasound was black. The brain is still there, but there is so much fluid that its pressing the brain tissue back to his skull. The brain is like a sponge, and when he's born and a shunt is put in the tissue will expand again, but its just a question of how much. And of course, with all that pressing, the question comes up whether or not he will have a lot of brain damage. I am so afraid he will not be able to have any quality of life. I've been trying to keep myself from reading too much on the internet, but one site I found that give me tons of hope is http://www.fetalhydrocephalus.com/. The mother that created that site did so to tell her story of her son's diagnosis and story. Other mothers have told their stories on that site too, and I'll post this over there as well. There are quite a few stories on there of babies just like mine who were diagnosed with Hydrocephalus and were born with some developmental delays, but have grown to become happy, healthy babies. I just have to rely on God and my family and friends to get me through this. We need all the prayers we can get, so if any of you reading this are willing to spare a few, we would very much appreciate it. The latest is that we are waiting on a call from the Fetal Care Center at the University of Cincinnati to call me back, we will be going there for a second opinion and for high level tests to see what exactly is causing this buildup of fluid, and what are his chances for a future.

I'll keep this updated as best as I can. Thanks for reading.