"God doesn't give children with special needs to strong people; He gives children with special needs to ordinary, weak people and then gives them strength. Raising a child with special needs doesn't take a special family, it makes a special family."
" Faith makes life possible. Hope makes life workable. Love makes life beautiful."

The Winwards

The Winwards

Saturday, March 14, 2009

Tanner Update 3/14/09



Tanner is doing so good! He is 3 months old already, weighs 13 1/2 lbs, and is 26 inches long! He is headed to be tall like his Daddy!

He had a hip ultrasound & a ortho appointment Thursday 3/12. His right hip has improved alot. The doc was very pleased. He now only has to wear the hip abduction brace at night! I am so happy about that, as it makes things easier during the day, he fits into his car seat way better, and he can move his legs up and down all he wants! Tanner goes back in for a hip xray in 1 month to see if we can get rid of the brace. There really is a light at the end of the tunnel!

He has had the ponsetti afo's for 1 week now. This is one of those braces with the shoes, and the bar inbetween. His left heel is starting to move down, but the right heel has not moved. The doc is concerned about that. He already had his achilles tendons clipped which should have helped that. The doc is thinking that the muscle in the heel is too tight as well. He advised me to keep stretching his feet, and Tanner's feet will be checked again the same day as the hip xray next month. If his right heel doesn't improve, we may be looking at another outpatient surgery.

Tanner's gets his shunt checked on Monday, 3/16. That appointment will determine if he still needs the shunt or not! I am hoping for not, but know that he may still need it. I just want the very best for him.

Saturday, March 7, 2009

Winward Family update 3/7/2009

Wow! Okay, I'm going to start trying to do updates every now and then! It's hard to find time to do much of anything these days! I'm sure you all can relate!

We are in the process of purchasing a new house! It's one level, 3 bedroom, and 2 full bath. It's about 1400 sq feet, and has a big back yard! We are excited about it! It will be a great place for Tanner to grow!

I go back to work next week, something I am totally not looking forward too! I've enjoyed these past weeks getting to know my son! It's been hard and stressful at times, but worth it in the end.

Ray is still working harder than ever. He is always busy. I think he is still a bit overwhelmed about being a Dad. He needs nudging every now and then. But he is getting it slowly but surely.

Tanner is excellent! He is getting so big, almost 3 months old already! Growing like a weed, weighing in at 13 pounds now and 25 inches long! Such a strong little man! He had his 3rd surgery on 2/6, which was to clip and stretch his achilles tendons on his feet, so his toes wouldn't point down so much. He had his 4th surgery this past Tuesday, 3/3. His shunt malfunctioned and it had to be revised. There was also a cyst growing by his shunt which is very rare. His neuro surgeon told me he had never seen anything quite like it, but not to worry. Yeah right!

Basically what they decided to do was remove the shunt from his vents and put it into the cyst to drain it. From the MRI done last week, his vents show to be draining on their own the "normal" way. His surgery went well, and we were in the PICU overnight! I stayed with him, as I breastfeed. Sleeping on that couch was not comfortable! He was a bit groggy and very grumpy, but I would be too! Poor little guy! He is such a tough little trooper!
In 2 weeks, he is supposed to have another MRI as a follow up. If his vents remain low and the cyst has drained completely... there is a chance that he will no longer need the shunt! I am hopeful of this, but also a bit annoyed! I really wish that they would have waited longer in the first place, before putting the shunt in! The shunt was placed when he was 9 days old and his vents measured only 13 mm.
He got his casts off Thursday, 3/5 and has braces now. You know the ones with the bar inbetween his feet! Makes holding him interesting! He smiles now and gabs a lot! He is so cute! & such a joy!

Our little dog, Maple is doing well adjusting to having Tanner in the house! She was a bit leary at first, but now protects him with a vengence! It is too cute!

Tuesday, December 30, 2008

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.

Friday, December 26, 2008

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!

Wednesday, December 24, 2008

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!

Tuesday, December 23, 2008

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!

Tuesday, December 16, 2008

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