Finally going Home!

We finally got to bring home our little man on 12/29/08. That was the longest 2 weeks of my life!
We are cathing every 6 hours during the day, and letting him go 8 house at night. He is so cute even with a bandanged head, back, and casts on both legs.

Now to adjusting with a lot of feedings, and no sleep!

Just happy to be home.

Tanner's first Christmas

Christmas for us this year was way different than the "norm" due to Tanner still being in the NICU. We went & exchanged gifts with family in the morning, and spent the afternoon and early evening with Tanner.

Tanner got his VP shunt put in Yesterday, and the surgery went well. Tanner now cannot lay on his right side for the next 3 days, so he is down to his left side or belly. He can lay on his back for 30 minute intervals every 4 hours now, but that's it until his stiches come out in 2 weeks. It is hard to lay him on his belly due to the position his legs are in, in the casts!

We also found out today that cathing has been started and we will have to learn how to do that as well! Most likely 4 times a day to start. That I have to say, is one of those "presents" that you wish you could exchange but have no way of doing so! I'm actually not as upset about the cathing as I thought I would be, at least not yet. That may change when I actually have to do it myself! Ray is really leary of learning how, but he understands that he has to learn to do it, so he can do it if needed. Like when I am not home and such. We have a meeting with the Urologist tomorrow morning to discuss things.


Tanner got the cutest Christmas outfit, but he can't even wear it! He is still a "diaper baby". So we layed it on top of him and took pictures anyway! It says "Who needs Santa, I've got Grandma"

Days for me are seeming to get better, but I still cry a lot! As the days go on that Tanner is still in the NICU, it gets harder for me to leave him here. I would stay here 24/7 if I could, but I know I have to eat and get some sleep. Why do doctors always say well maybe he can go home this day, or that day? And then that day comes and they say, "Well, looks like he may be able to go home in 48 to 72 hours! UGH! I just want to scream @ them!

Ok, I'm done with my ranting.... at least for now!

Hope everyones Christmas was better than ours was!

Tests.........

Well, the results of the tests came back..... and they weren't as good as I had hoped.

Tanner has neurogenic bladder, and now we have to wait and see if cathing will be envolved. I'm still really scared about that, cause when they cathed him for the VCUG test, he screamed the entire time. I'm afraid of hurting him. I was given a whole big packet to read about it, and its so daunting!

Tanner's head circumference also changed and the size of his ventricles went from mild to moderate. Due to this, his Neuro feels that it is best to place a VP shunt now before the size of the ventricles gets any worse. Deep down I think I knew this would happen due to the fact that his Vents have always been a bit on the larger side. But it is still hard to swallow. I was really hoping that we could get lucky enough not to have to get a shunt.

Tanner is scheduled to have the shunt placed tomorrow (Dec 24th) @ 11 AM. Due to this we ended up not doing the "Nest Day". There didn't seem to be a point since he won't be coming home tomorrow anymore. The come home day has now been moved to maybe the 25th or the 26th. Maybe even later.... just "depends".

I am really starting to hate the word "depends"! It's getting really hard for me to not be upset and stressed out about everything that is going on. I tried so hard to stay strong and positive, but I seem to cry over everything now. Most people say its due to "hormones", but I know its more than that. I'm just so disappointed that everything the doctors said would happen, has happened.

I pray that we will be able to take Tanner home soon!

Can I take him home now?

Tanner might be able to go home tomorrow or Wednesday! Everything is riding on how his tests go today. I'm way nervous and super emotional today, but I'm sure I'll get through it!

Tanner has a head ultrasound, a renal ultrasound and one other test (don't remember what its called). He is also going to be getting his first of I'm sure many casts this afternoon for his club feet.

The hospital is offering us a "Nesting Day". Where he and I would stay in a room here @ the hospital with Tanner to see how things go. That way if something were to happen there would be hospital staff close at hand.

I'm not sure if it is something that we should do or not, and I have to decide if its something we want to do by 5pm, its 1pm now.

Things are moving along, but its getting harder for me to leave him here each night. It also doesn't help that my hormones are still all over the place and I cry over everything!

December 15 2008

Tanner James Winward arrived ealy Monday morning 12-15-08 @ 12:24 AM! I had a csection schedule for 12-18, but Tanner had another idea! Don't mind the date on the pics, the date was off!




My water broke @ around 10 pm, Sunday 12-14-08. Being clueless, at first I though I had just peed my pants. But when it kept coming, I knew it was different....This of course freaked me out, and it was not in "my plan". Didn't even have time to pack my bag, so we went the hospital with nothing but the clothes on our back, my purse, and the camera!

Once there, things moved pretty quickly. Got an IV, pain meds for the many contractions that I was having, and Emergency Csection scheduled for Midnight! I was wheeled down to the OR @ about 11:30 pm, and received my Spinal. I was so nervous about it, but it really didn't hurt at all! The only part that hurt was the local numbing shots that I got before the spinal, those sting! Once the spinal was administed, I was laid down and soon my legs and feet got really warm and tingley. Definitely a weird feeling! They then got me all setup before they brought Ray! Ray actually did a lot better than I thought he would, considering the fact that he hates needles and blood. He was actually only in the OR for about 5 min before Tanner was out. The only "painful" part about the csection was the immense pressure that I felt. It was way more intense than I had thought it would be, but it didn't last long as I was given something to help with it.

I cried when I heard Tanner cry. It was the sweetest sound I've ever heard! He was born @12:24 AM, weighed in @ 7lbs 3oz and 20 inches long! And does he ever have some lungs on him! I got to see him briefly before he was whisked away to the NICU. As many of you know, he was born with spina bifida. Below is a picture of his defect before surgery. He was also born with club feet. I only have 1 picture showing them, I didn't want a lot of pics showing his defects because I don't want them "defining" who he really is!





After recovery I was taken to my room, disappointed and afraid that I wasn't going to get to see Tanner again before he was transported to Phoenix Childrens Hospital. I talked to my nurse about it, and she was not happy about that! She said that they were supposed to take me by the NICU before they brought me to my room for post partum screening. She was able to pull some strings, and I was wheeled down on a gurney down to the NICU. I got to spend 2 hours with my little man before the transport came for him. I got to hold him for a few minutes and touch him! Greatest moment of my life! It amazes me how much I love him! And he is just so darn cute!



Tanner had his back closure surgery later that day (12-15-08) @ 1pm. It lasted about 45 minutes and went well. His head size is currently normal, but they think that is due to the fact that the myleo(sack over opening) was open @ birth. There are some advantages to that, as his brain was able to develop normally, but it increases the chance of infection. His first bowel movement was also in the fluid @ birth, so he is on antiboitics for both to eliminate the chance of infection. He has another head ultrasound scheduled for Today, to check on the fluid in his head. The neuro is anticipating a shunt, but he is all about the "wait and see" method, so I'm happy about that. The neuro said he won't put in a shunt, unless its absolutely necessary. The feeling in his legs seems to for sure go down to the middle of his calf, and possibly further. The neuro says he will definitely walk! Most likely he will have AFO's, but I'm totally fine with that!

Tanner has bilateral club feet, and they are going to be addressing those once he is able to lay on his back, which will be approx Thurs or Fri this week! He will also have a renal ultrasound to determine what his bladder and bowel capabilities are. Which currently seem to be working on their own! He has already peed on 3 nurses!

It is currently estimated that Tanner should be ready to come home Monday or Tuesday next week! Just in time for Christmas! I am so excited that I am finally a Mom!

I have been pumping, and the first time Tanner ate.... he got my milk! I'm not able to get enough to sustain him yet, so my milk is being given along with some formula. I am praying for my milk to come in by the time he is able to come home!

Things really couldn't have worked out better for us, and I feel so blessed! Ray, adores Tanner!

I would like to thank all my family and friends for your constant support & advice as I struggled through my pregnancy. You are all right, the pregnancy is the hard part! All my apprehensions and fears melted away once I saw Tanner!

I'm sure I'll have good days and bad days as things start to unfold, but I'll handle it one way or another

C - section scheduled

Tanner was scheduled to be born via C-Section on Thursday, Dec 18th! He is to have the same birthday as my sister Emily!

I'm sitting here thinking wow, it really has gone fast! 6 more weeks and I'll have a little one. I'm excited, yet anxious. But am also way happy!

I'm nervous about the c-section, but have hope that everything will be as ok as it can be. I found out that depending on how the c-section goes and how well I do, I might be able to leave the hospital after 1 night to go be with Tanner @ the children's hospital in Phoenix. 1 night is way better than the 3 days I had anticipated!

But in the end, my water broke on 12/14 around 10pm, and Tanner was born 12:24am on 12/15. Guess he wanted to have his own birthday!

Feeling a bit of hope...

The more I think about what my new son will be like, the more excited/nervous I get. I'm excieted to see him, and get to know his personality, but I am nervous about the disabilities and pain he will have to encounter as he grows.

I do have better feelings now that I have talked to a neuro sugeon and gotten more of an idea what spina bifida can "really entail". I still need to see an orthopedic doctor about his club feet.

I think the biggest hump for us is the financial one. I'm hoping that I can find the time between work, dr appts, and family to explore any and/or all avenues that may be of some help.

I know that no one plans on having a special needs child, but God apparantly chooses who he thinks will do the best job. Now that I am over most of the anger, I still wonder what in the world God is thinking somtimes. Because at times I really wonder if I am going to be able to do this. It's a big leap of faith for me!

I admire all of the strong Moms who have gone through this before me! They have all helped me so much in being understanding, loving, and supportive in any questions I come up with. And by also just being a friend!

I found a couple of great support groups online. The spina bifida support group on www.babycenter.com (my favorite) & www.dailystrength.org
Both have been the best thing for me! I have been shown through others experiences that it will be hard, but it really isn't impossible!

Getting past the emotional stress.....

As I think about things from day to day, some days are better than others. In some ways I still blame myself for this, and in other ways I know I didn't do anything to cause this. Today is one of those days that I just feel like there is no way that I can do this!

I think in the long run I am just plain overwhelmed. Overwhelmed about where to start, who to contact first for help financially and/or emotionally. I've had a lot of suggestions, and have done a lot of research on the net. A lot of it is encouraging and helpfull in understanding what may be coming up for me, but it also seems to be such a daunting task.

At times I still think that I must have done something wrong to deserve this, or maybe I'm just being tested by God.

I guess what I really need to figure out first is how to get out out the emotion stressing rut that I can't seem to get myself out of.

Official Diagnosis - But still a child

On Thursday 8/21/08, my husband & I found out for sure that our little boy has spina bifida and club feet. He is also borderline for the Hydocefelus (spelling?), the fluid in the brain one.

The estimated location of the spina bifida as far as they can tell on the ultrasound is L4-L5. I'm trying to study what that location entails, but feel very overwhelmed. I know that every child is different, and they all do things in their own time. This may turn out to be minor, but I am really nervous about caterizing my son. I'm not sure I can do that.

We now have to do monthly ultrasounds and blood tests. In the next couple of months we also have to go see the surgeon that will do the back closure surgery, and go from there. Once I hit 8 months, I'll have to go into the doctors office 1-2 times per week to monitor the babies heart rate. Is that normal? We were told that the club feet can be fix via surgery, and there are remedies for the fluid, such as a shunt. It just depends on if he has issues with the fluid.

I also found out that I will definitely being giving birth via c-section. I am a bit disappointed, cause this being my first child, I really wanted to try it the other way. But I know that the c-section is best for my baby.

My husband is very upset about it, and refuses to talk about it. When I asked him about it, he said, "What should I think about it?" "It sucks" "Leave me alone". He also told me that I would be the one researching it all, cause he is preparing the babies room. I guess that's "fair".

I am scared, but deep down I know I can handle it. Otherwise why would my father in heaven send me such a special child?

As of yest we have not decided what to name him. We really want a name that means something to us. A name that is strong.

Things for me are hard right now as I try to come to terms with all this, and what is means for the start of my family. The feeling and sadness sit right under the surface, and its amazing how the smallest things can bring them out.

We have not told all of our family yet, and I am wary of what the reaction will be. Does anyone have any suggestions? I just don't want to keep explaining it over and over.

The day we found out about SB

On Thursday 8/21/08, Ray & I found out for sure that our little boy has spina bifida and club feet. He is also borderline for the Hydrocefelus, where the fluid does not drain properly in the spine, and is collecting in his head.
The estimated location of the spina bifida as far as they can tell on the ultrasound is L4-L5. I'm trying to study what that location entails, but feel very overwhelmed. I know that every child is different, and they all do things in their own time. This may turn out to be minor, but I am really nervous about all the extra challenges with my son. I'm not sure I can handle all that is to come.

I now have to do monthly ultrasounds and blood tests. In the next couple of months we have to go see the surgeon that will do the back closure surgery, and go from there. Once I hit 8 months, I'll have to go into the doctors office 1-2 times per week to monitor the babies heart rate. I'm wondering if that is normal, but I guess its for the good of the bab. We were told that the club feet can be fix via surgery, and there are remedies for the fluid, such as a shunt. It just depends on if he has issues with the fluid after he is born.

I also found out that I will definitely being giving birth via c-section. I am a bit disappointed, cause this being my first child, I really wanted to try it the other way. But I know that the c-section is best for my baby.

Ray really doesn't say much about it. He told me that I would be the one researching it all, cause he is preparing the babies room. I guess that's "fair".

I am so scared, sad, angry, and am not sure where I am going to find the strenth to handle this. I'll just have to handle it. Otherwise why would my father in heaven send me such a special child?

As of yet we have not decided what to name him. We really want a name that means something to us. A name that is strong.

Things for me are hard right now as I try to come to terms with all this, and what is means for the start of my family. The feeling and sadness sit right under the surface, and its amazing how the smallest things can bring them out.

This Blog

This blog was created to celebrate the life and challenges of raising a child with special needs. Also to allow family and friends a glimpse into our crazy life!

Bad News - but still a Miracle

I found out on 7/24/08 that my new baby boy growing inside me has spina bifida. I first felt shock, and disbelief. But the disbelief soon turned into massive sorrow. I don't think I've ever cried so hard or long in my life! He is my first child, so I was already scared, but now I'm terrified.

It's been 3 weeks since I found out, but I still wonder if I could have done anything to help prevent it. Sometimes I blame myself, or think God must be punishing me for something.

I've been trying to put up a strong front and tell myself that there are worse things that could happen to my son. Trying to convince myself that I can do it, and it won't be as hard as the doctor's say it is. Or at least I'm hoping that it won't be.

I have a follow up ultrasound next Thursday 8/21, to try to find out the extent of the spina bifida and where in the spine it is located. I'll be 23 weeks, so they said that should help, cause he will be bigger.

I just have so many questions. I'm not sure where to begin or where to ground myself. I need some stable information so I can start preparing myself. I'm hoping the follow up ultrasound will give me that.

I know that every child is a miracle. I just wanted my child to be perfect.