No more Teeth

We took Callie in for a dental check up yesterday. Our pediatrician has been watching her two bottom teeth pretty close. They came in at 4 months old and since she was early they consider her 3 months when she got them.. too early. They just have not really looked right. So we went in to our dentist again and he said they need to pull them before they get worse. So we went in today to have them pulled. It took about 5 minutes and come to find out one was already abscessed..so it was a good thing we got it taken care of.

Also, I talked to the heart doctor. The good news is no surgery for 8 weeks. However the doctors in Milwaukee do think she will need it at some time, but are hoping time will help us. Either she will get bigger which makes surgery easier... or as she grows maybe it will just get better and surgery will not be needed. We continue to say our prayers for her health.

Christmas

We had a good Christmas this year! Christmas eve was spent running around during the day and visiting with some good friends! Then off to Church - I can honestly say we really have the best Christmas service around. I just love our Church service on Christmas (and of course the rest of the year when the kids are healthy enough, and we got some sleep to get up and go). We have the two best pastors around. Yes I do speak highly of them :) Then Chris's family came to our house for appetizers and gifts. Zak is so much fun this year to watch him open gifts. It brought such a huge smile to my face to watch him open gifts. His tongue sticking out in concentration. Paper all over and boxes and bows on the head. I am such a proud mama!


Christmas day was spent at the nursing home with Grandpa and Chris's Family. Crock pots of food were hauled up and a room reserved. It was nice to be with Grandpa for the holidays. It was convenient to have it at the nursing home so we could be with Grandpa for the day.
The weekend was spent trying to recoup and clean up. Then Sunday my Mom and Brother came to celebrate we us.. It doesn't get any better than a week to celebrate!
This year was truly a year to celebrate and be thankful! It was nice to have an opportunity to give back. At work I help head up "Santa's Stocking" We adopted 2 families and several women. Employees donated 150+ gifts, we raised money with a bake Sale and BBQ lunch and donated to local organizations. It all ended with a wrapping party. The part that really touched me was to see how generous everyone was. If a person asked for socks they got 2 huge packages, if it was a pan for brownies they got 2 pans and brownie mix. It was nice to see all the excitement.
We also have so much to be thankful with the kids. They really are miracles. All of the "little" things are such huge accomplishments. It is fun to see them grow and change. Every day it seems like we notice something new. We also have our family and friends to thank for all of the support and prayers. We have some very close friends and family that have supported us through everything. Just an e-mail to say we are thinking of you when you feel alone or a call to just say I have a funny story to make us smile. And of course the many of meals this year when things were tough. We would come home and have a meal on our table - anything we did not need to cook and was not hospital food or out of a box.. except for the Chicken Marsala we were introduced to :) LOL. My new favorite easy meal to make. So a BIG thank you to everyone!

Callie's Heart

We did not get the best news today. Callie had another heart follow up. We really were expecting to hear good news. The pediatrician thought her heart was sounding a little better. She is finally growing, which in Zak's case was when he turned around and things got better. Unfortunately that has not been the case with Callie. Her heart continues to get worse. This time the doctor is sending her images to the Milwaukee team since they are the surgeons. At this point out doctor is hoping we have a little more time and we can wait another 6-8 weeks for another check up but she wants there opinion. With the path that she is going there are 2 different surgeries she could potentially have. One that is just a one day in and out that would be like a balloon stint to just stretch out the pulmonary valve - the problem with this is we don't know if it will work. It might just buy us a little time and that would mean another heart surgery. The other is an open heart surgery that would put us in the hospital for about 5 days, but hopefully that would be it and we would be done. So we just wait now for the Milwaukee team to review the images and discuss what they want to do.
We ask everyone to say for an extra prayer this Christmas for Callie's heart to get better. Both Callie and Zak are truly our little Miracles and we are so thankful to have them. It is in Gods hands now and either way we know she will be ok as God is looking over her.

Christmas Concert

Zak had his Christmas concert last night at school. The kids in his class did well! It is always fun to watch the 3 and 4 year olds sing.

Success

It was a success.. Callie’s Mickey button (g-tube) went in very well on Friday. She has been doing well with it. She does not like us to touch it yet, but I don’t blame her one bit! So She laid low most of the weekend.

Santa came to visit us on Saturday. The kids had a few other friends over as well to see Santa. It was great to see all the excitement and fun with all the kids playing together and parents socializing. They all heard Santa bells and it was silent. Waiting to see who would sit on Santa’s lap first. I just love having everyone over as we had some friends over that we have not seen in over 6 months. I just wish our house was bigger so we were not all squished in. Either way it was Great!!

I think with all the excitement on Saturday Zak was wiped out. He slept most of Sunday away, he even slept fairly well through the night. This morning at 5am he was up and ready to go!

This week we will finish up any last minute shopping. For the most part it is all done and wrapped. Christmas Eve will be at our house this year with Chris’s Family. Only 1 week and 1 day and I am off work until the new year. I am so excited to just spend some time at home with the kids. Chris was out in the woods again this weekend. Only for a few hours on Saturday and Sunday afternoon. He saw a few deer, but decided not to shoot anything yet.

No Go..Trying again

Callie went in yesterday to have her tube (mickey button) changed to a new one yesterday. She still had a long tube that was stitched into her tummy from surgery. This is how we have been able to get additional food into her and chunk her up a little. It was supposed to be taken out yesterday and a new one placed. This would be the same thing Zak currently has in his tummy. However, the surgeon put a small tube in.. so small we are not able to get that size in a more permanent mickey button. So we had to order a Mickey the next size up. Our GI doctor was going to try and change it out in the clinic, however it was just too big for the tiny hole. Bummer. So needless to say Callie did not get her new mickey button yesterday. She is scheduled to go in again today. This time it will be with sedation so she won't feel the pain. Seriously why didn't the surgeon think ahead a little. He knew we wanted to keep the feeding in as a permanent thing after the surgery. Now our GI doctor is left to pick up the pieces. He is absolutely amazing - we know we are in great hands now.

Let it Snow!

It is the first big snow fall of the year!! How wonderful! I love it. Ok, well I love it more when it is all cleaned up. I love having a white Christmas, I just hate driving in it. We got 11.5 inches and now the winds are blowing. Chris was out at 4:30am helping his dad plow. Then he worked this afternoon and is heading out again this evening to plow. I on the other hand worked from home and enjoyed the view! Actually I did get up early to shovel a bit and play with Sammi. She just loves having snow kicked in her face. I don't get it, but she will bark at you until you kick it into her face. Here is the view from the house!
Also Callie went to the clinic today for her weight check. 9lb 13oz!! Way to go Callie. It is great she is putting on the pounds, however she is not growing the best in length. They are watching that closely. Nothing to worry about now, but as she gets older they may need to start her on growth hormones. Only time will tell. I love to give her a bath and actually see a little meat on her bones. It is so cute. Today's Bath - She loves to cover up with the wash cloth.

Zak has also put on some good weight. He has hit the big 30!!! Both of us this year. (of course mine was age). WAY TO GO ZAK!! He was 30 exactly. I was so happy. He has been eating great lately. He still does not stop moving. He has started to take 2 steps crawling and when he really wants something he goes for it and just pounces on it. He is not afraid to fall at all. Last night he slept in his bed the whole night! What a big boy! It was so nice. The night before on the other hand. Well he gave Callie's nurse a big scare! He did not want to go to sleep so we put him in the jumpy as usual when he won't sleep (which is is way to big for, but have no clue what to do). At about 10:30pm she came running into the room to let us know Zak feel out (which he has learned to get out now). Feel on the floor and puled out his mickey (feeding tube). We put it back in, but he was a little fussy. An hour later he still did not want to sleep. Nothing was working. So he played on the floor and bit. It was 4am before he decided sleep would be a good thing. Up at 7 for school! It made for a long day.
Zak did not have school today with all the snow so he got to spend the day at home. Here he is in the gait trainer

And more pictures just because they are so cute I could not resist. Zak loves the camera. Every time I take it out he sits up and smiles

Big Smiles from Callie

All Ready to go to the clinic in the cold.. SO CUTE

And we can not forget Sammi. All tucked in with her buddy pound puppy

Putting on the pounds!

We are no longer talking ounces.. Callie is gaining pounds! Last Wednesday we were into the Clinic for her 9 month appointment. It was also 5 weeks post opp. She was 7lb 13 ounces going into surgery.. she got back up to that weight 11 days post opp. 5 weeks after surgery she was 8lb 15oz. We took bets on how much she would weight. Chris won, he was the closest. Then today she was in to meet her GI doctor to figure out the plans of changing out her g-tube to a mickey button. in 7 days she was up to 9lb 6oz. As much as I hate to see my kids grow up it is so exciting to see her finally gaining weight. Everyone has been commenting on how her little cheeks are filling out.

We just ordered her mickey button. We are hoping towards the end of December beginning of January we will change it out. The current tube she has is stitched into the inside of her tummy and is a long tube that hangs out. The new one will look just like Zak's. Just a little button that sits on the tummy. We have to weight to get thew new one in since it is a custom order as she is so tiny.

Zak has started to make new noises. Last night he saw a book he wanted on the couch and stood up to get it with no one around.. so exciting and so scary! He doesn't really know how to fall other then with a big boom, however it was so exciting to see him get up on his own. He sure is a man with a mission!

Chris had good luck hunting this year. There was no deer up North this year, however he was lucky enough to get one close to home. Thanksgiving Morning! He got an 8 pointer!! Zak even liked it too. We spend Saturday cutting, canning and grinding. We are all done now. He is really looking forward to going on bow hunting. Hoping to shoot one more. Then we will be set for the year.

Cutest Kids on the Block

We just got our Christmas pictures and Callie's 9mo pictures back. Our photographer Nicole did a great job.. I just cannot say enough Great things about her! She does a great job with the kids. The were both very craby that day too. You wouldn't even know it!

I like to play with my feet!

Big boy standing Tall!!

So happy!!

What a great weekend! Both kids have been so happy for a week now. This weekend was absolutely amazing. I was able to spend time with both kids and just play - it was so much fun. I did not want the weekend to end. Chris left to go Hunting on Thursday. I was a bit nervous they would be a handful. God was watching out for us! Callie has been full of smiles and Zak just laughs ( I think to hear himself make noise). They really are such a blessing. Also, both of my kids have taken up a new love.. eating! I really am not used to feeding kids so much. Not to mention diaper changes come along with that. I have had 4 people in the last week comment how Callie's face is filling out. We are already taking bets on what her weight will be on Wednesday. 2 weeks prior she was 8lb 2oz. As much as I hate to see my little baby grow up it is so exciting that she is putting on weight and looks so much healthier. Zak is also begging for food every chance he gets. We will feed him dinner sit down to eat and he is right at our feet.. along with the puppy. It just makes me laugh.. then he laughs and we just giggle back and forth. Last night he thought sleep was over rated. He went to bed at midnight.. got up at 4am. WOW. Where they get there energy I will never know.
I also got my tree up this weekend. Zak was interested in it at first. Then when I put on the ornaments.. he loved it! All of his special ornaments are on the bottom. He likes to hide under the tree and pull on his ornaments. We even had to tie it to the wall.
Chris got home today.. no deer. Seems to be the story with everyone. What the heck is going on? He hopes to get out latter in the week.

Picture Night

Both Kids are in a great Mood tonight! I LOVE IT!! Zak and Callie - Happy as can be

I love to Eat!

We are discovering quickly that some of Callie's fussiness might just be a BIG appetite. We started feeding her more cereal yesterday and she started eating Stage 2 Baby foods today. She ate 4 meals today and still took her normal tube feeds.. what a little piggy.. way to go Callie! She also started her twitches again this weekend. Very mild this time - Thank God! When they happen she does not sleep much. Yesterday she was up for over 13 hours and then only slept for 1 1/2 hours. She sure does not take after me.. I like my sleep way to much.

We also had family pictures yesterday. We should get them later this week. Zak cried through most of the pictures, so the majority of them are of Callie. She was not all that happy either. Oh well.. the photographer we have is amazing and very patient. She does it out of her home so it is much more relaxed for them.

Chris was hoping to get out bow hunting this weekend, although he never made it out in the woods. He spent some time today getting ready for next weekend - OPENER! He will be at the cabin with the relatives starting Thursday. Thankfully we have nursing on to help me or I don't think I would be sleeping at all.

Today I went out to breakfast with one of my closest friends. The food was on the table with in 10 minutes however breakfast took us 2 hours. It was so nice just to catch up and get out for a while. Much needed.

Good Reports!

We had Zak's conferences today. I am so proud of him. The teacher and therapists all had great things to say about him. They think he is really starting to understand basic tasks and is doing a good job interacting with the kids. I always love to hear stories about how they all interact together. I just have to laugh when they say he would rather play ball with kids his size instead of the adults. Then tonight Grandpa stopped over and played with Zak. Daddy and Grandpa are always good for a few tosses in the air. Zak was laughing and giggling so hard I could not help but laugh. I actually remembered to grab the video camera for a change.

Callie to had a great report! We finally made it to 8 pounds!!! She was 8lb 2 oz.. YIPPIE!! Granted I wish she could stay tiny forever, however reality is she is much healthier when she grows. I let our pediatrician know we would be going for a second opinion with a neurologist. She was ok with this, also said she is going to talk with our current neurologist and see if there are any medications she thinks we can try when Callie has her twitching. Hopefully they can come up with a plan. At this point I am willing to try anything.

Happy Day!

Both of the kids had such a great day. Zak finally went back to school for the first time in 3 weeks. We just could not take a chance with his weakened immune system from surgery. His eyes are looking good and he has so much energy. I know I say this all of the time, but he really is such a happy boy. I to just watch him play and wonder what is he thinking. He is an amazing boy. He has taught me so much about patience and just being grateful for life.
Callie too had a good day. She has been off all pain meds now for a few days. Today she rolled over to look at Zak in the jumpy. She also enjoyed standing for a while. It was the first day she really liked doing her therapy again. Also, great news. I got her in for a second opinion in Madison. Not until January 6th, however it is on the books and we were able to get in. I hope this doctor has some ideas. I just do not like to see Callie in pain.
Chris is out of town on business so it has just been the kids and me. It is very strange with two kids and just me. I am still getting used to it. He will be home tomorrow thankfully. The house just seems so empty when he is gone.

Ups and Downs

We all have our ups and downs so I know everyone can understand exactly what I am talking about when I say I don't even know what emotion I am feeling anymore. The last week has been a bit of everything. Last Thursday Callie came off of oxygen for the first time since coming home. I was so excited, yet so stressed out. I was finally able to take a breath full of joy and excitement that finally our little baby girl is pulling through everything she has been through the last few weeks. We were making huge progress. I was so excited to tell everyone I knew how great she was doing. Even tolerating her feeds. Half way through the day I got a phone call from our nurse who was taking care of Callie while we were both at work. Only to find her twitches were back. I wanted to cry.. right there at my desk. I still had one last bit of hope it would just go away with the surgery. I always thought there could be nothing worse than watching your child suffer. When these happen she twitches and screams non stop. It breaks your heart. I think I have learned 1 more thing worse than watching your child suffer...it is watching them suffer and having a doctor look at you in the face and tell you just to document it. Honestly, that is what we are told. She has had seizure tests and they are fine, so we are told just write it down. If I knew why she was crying and if it hurt her or just scared her I would feel better. Most of you that know me well know what I have been doing in any free time I manage to find.. yes searching the Internet for anything that makes sense. We are working on getting another opinion..starting with Madison. Someone has to have an idea. Typically these episodes last 36 hours and suddenly she just snaps out of them. This time about 60 hours... She is still moody, but today is the first day since Thursday that she seems better.
On a better note. I went to a seminar last Thursday on Special Needs trust funds. It was given by a local lawyer.. completely Free! It was so amazing. Great information. Even if you do not have a special needs family member it was a must listen too. It gave me a lot to think about it caring for our children's future. Also this weekend was nice to lay low and enjoy the weather. My dad and his friend came to visit on Sat to visit and see the kids. Then Sunday we just got the regular house work done - laundry and cleaning as the kids would let us.
Zak is doing good.. he will be going back to school again this week. First time in 3 weeks. They have the class field trip to the school forest on Wednesday. Then conferences on Thursday. The teacher told me we need to start talking about kindergarten.. I nearly feel off my chair. I know we like to think they will stay small for every, but reality is they do grow up.. our little baby boy going to a big boy school. Pre-K or early childhood did not seem like such a big step. I wish we could just take his teacher with. I am sure there are plenty of great teachers out there, but his current teacher is amazing. She does a great job with him.

Doing good

Finally things are calming down a bit. Yes, there is still plenty of excitement though. Last night we saw a big difference in Callie. We were able to turn her oxygen down even more finally. She is now on the lowest setting and her oxygen levels are staying at 95. (anything above 90 is good). When we turn it off she drops to 85-88 though. Hopefully all we need is a little more time. She drank juice for her first time today and actually liked it. She has not wanted much in her mouth since surgery so it was nice for a change. Last night she liked laying on my shoulder. It was so nice just to cuddle with her again. She is almost off pain meds too. We just want our little baby girl all back and feeling good again. We are almost there!

Zak is so funny. He just starts laughing for no reason. I only wish I had half the energy he does some times. He is learning more each day..becoming such a big boy. His new thing is to push down your chin so you open your mouth. You would think he is going to jump on in. He gets so close just looking in your mouth. If you shut it he pushes on your chin again until you open. We did this for nearly 10 minutes. Wow, your mouth can get soar. At least at the dentist you get a little break and can shut your mouth.

Plugged up

Callie did ok this weekend...until her newly placed tube got plugged up. No food in, no gas out. After trying to get it cleared for 10 hours we ended up at the clinic to find out her prevacid medicine to treat her acid plugged it. Then while the doctor was working on the tube I looked down to notice.. an ear infection! Thank god for ear tubes. To think the standard is 6 ear infections in a year. We are on number 4 in 2 months. I am very thankful the doctor decided to put the standard aside in Callie's case and put in ear tubes.

Callie has been very cranky today. We are trying to get her off of pain medication and the tummy pain from being plugged has not helped the cause. Not much will sooth her. She is still on oxygen, but seems to be doing better. We tried to give her a bath since she is able to get her incision wet again. She was not even happy sitting in the bath water, which usually she is.

Zak is going to be out of school for his third week. Our doctor thinks it is best with everything going around and Callie still healing. It is getting hard to figure out the schedules though. Zak's eyes are starting to heal and he is feeling good!

Settled back in

It is so nice to be home! Callie is doing ok. We have not been able to get her off the oxygen yet. She still has a nasty cough, but her lungs are clear. No one in the hospital even knew what it was about. We dropped her feeds down 10ml (1/3 of an ounce). She seems do be doing much better. When they did the surgery they used 1/3 of her stomach to wrap around the esophagus yet we are feeding her 1/3 more. Think of overeating for 5 meals a day and being told you need to eat all night. I cannot even imagine the feeling, yet that is basically what we are making our daughter do. We need to get her stomach to stretch out so she can handle the larger volumes and put on some weight. We go to the clinic on Monday for a check up. It will be interesting to see if she has gained some weight yet.

We took Zak out trick-or-treating today. Not Callie, she stayed home with our nurse. Originally she was going to be a caterpillar and Zak a bug catcher. Chris thought of that one. I cannot even take the credit. Needless to say we cannot be taking Callie out and we did not have time to make Zak's costume. Plus the sound of a bug catcher with out any bugs did not sound right. So Grandma bought him an itsy bitsy spider costume. He did not like the gloves or hat, but it was cute! When Callie is feeling better we will put her in the caterpillar costume just to take pictures.

HOME!

Callie is going home today!! She will be on oxygen. We still have a long road ahead of healing and hopefully getting off oxygen. Now she should be able to grow and get some rest when she wants!

Zak is doing good. The swelling has gone down a lot where we can actually see his eyes now. We kept him out of school again on Tuesday and Wednesday to heal and rest. Today and Tomorrow they are off for Fall break.

I cannot wait for the weekend to come to get back to normal as we know it. Not to mention to see my husband longer than the 30 min pass by and report of Callie. One of my close friends is bringing us dinner and a pumpkin pie tonight – YUMMY! Ma has made us some meals throughout the week so we have food to come home too. It is so nice to eat some good home cooked food instead of hospital food and Subway. Thank you both!

When are we going home?

We are ready to go home.. Callie is not sure if she wants to yet. Of course she needs to make sure she has seen all of her favorite nurses before we go home. Monday night she was taken off all oxygen and did fairly well until this afternoon. She was put back on oxygen. Just a small amount, but another small set back. We want her to come home so bad, but her safety is much more important. It is hard running back and forth and not spending much time with Zak and little to none with Chris. Every time I get my hopes up we are going home her stats (oxygen levels) drop the slightest. The doctors talked to us tonight about everything. We now have a feeding plan in place and it has been communicated to our general pediatrician. I had to laugh. The surgeon (who is filling in from another hospital and does not know us at all) thought we might be a bit aggressive on the feeds. The ICU doctor thinks we are fine and since she is monitored in the ICU wants to push her a little. After all the goal is to gain weight! It is possible she is just so full everything is pushing on her tummy and that is why her stats are dropping. All of her tests come back fine which is a really good sign. We finally got oxygen ordered to Have at home.. I am so excited! No, I don't want her to be on oxygen obviously, but to have it as a back up and know we are fully prepared if either one of the kids stats drop.
It has been busy the last 2 days at the hospital. They have been full in the PICU which means the nurses are very busy. We had neurology in to do a follow up and make sure everything is good, ENT stopped for a post surgical visit and our Pastor came to visit! We had a great visit... thanks for stopping by!
Chris and I are both holding up as best as we can. We still are rotating shifts every 24 hours or so. Trying to work, take care of Zak and be at the hospital for Callie. It truly is a juggling act. We all do what is necessary for our family and children though.
Finally off to bed for a few hours anyway.

Long Night

We were hoping Callie would come home today.. unfortunately she is not. We got the ok from surgery, however yesterday she started to have periodic breathing. Kinda like an apnea spell. At first when it started she would recover quickly. As yesterday progressed she was not recovering as quickly.
Chris spent the day at home doing laundry, cleaning and taking care of Zak. He came to the hospital around 6:30 and even picked us up dinner... No hospital food - Yippie! It was nice to see him and have a meal together. The hardest part of all this is just being away from him. I left around 7:30, her stats seemed to be dropping more. As the evening progressed they became more worried and ending up putting her on oxygen. When they took her temp she spiked a fever of 102. The x-ray was clear and nothing obvious showed up in the blood work. Chris hung out in the PCIU with her until 2am when she had been stable for a while. She has been monitored all day, we still have no ideas what is going on. She is still on oxygen and having the periodic breathing episodes. Hopefully she will just get better or we can find our some more tomorrow.

I got to spend the night with Zak last night and all day today. It was so nice to be around him again and not in a hospital. He has to wonder what is going on. Why it is so quiet with out Callie home and why he only gets to see Mom or Dad. He was a little cling on today. Actually it was kinda cute to know he wanted to be by me. He has started to try and follow us around the house. He rolls everywhere he wants to get. He helped me fold laundry by pulling out my bottom dresser drawer and empty it. Then he went to his bedroom and made a mess too. It is fun to see him get into things.

Thank you to everyone for your prayers. We love to hear from you. We hope to be home soon, but know Callie is best in the hospital right now.

Surgery is a Sucess

Zak's surgery went well today. He had a hard time waking up - Just crabby. I went down before the surgery. Chris stayed there during and after the surgery. I went back to be with Callie and Chris brought Zak up when they let him go from recovery. Zak and I got to snuggle for a while until he woke up more.. and then went potty on me :) Chris and Zak went home for the night. We were both commenting today how big he is getting. Granted he is only 28 pounds, however he is getting hard to move him around since he is so strong and really does not know how to hold on and help. No wonder our backs hurt. I must say we make a great team and Chris is a great father. I always hear stories of how the dad is not as involved as the mom would like. I am so thankful he is so involved and does such a great job. We truly are a team. That is the only way we could do it with both of the kids.

Callie is also doing well today. She started her tube feedings today with Pedilite. She has been tolerating it well so we just changed her over to breast milk. She is just on maintenance, the same amount she would get through an IV. Throughout the night we will add more depending on how she feels. Later tonight or tomorrow we will start her on the bottle as well. She is such a strong little girl. We are hopping to have her home Sunday, but we will see how things go.

Don't forget to write a comment or send an e-mail - we love to hear from everyone.

Quick Note

Just a quick note. Callie is doing well today. We have been able to keep her pain under control. The cardiologist stopped by and did an echo on her heart since we were here. We have not got the results yet. Hopefully tomorrow. Neurosurgery also stopped by. He feels everything looks good with the shunt. He does not think her twitching episodes have anything to do with the shunt. Now we just need to wait for the neurologist to evaluate her again. It is nice to get some things taken care of while we sit and recover.

Tomorrow is Zak's surgery. Him and Daddy and spending some time together tonight. I am here with Callie. Chris will bring him down for the surgery tomorrow.

I will try to post again tomorrow after Zak's surgery and when Callie gets to start her feeds!

One down - One to Go

Callie's surgeries went well today. The ENT said she did have a lot of thick fluid in one of her ears. Good thing we got tubes, now it can just drain on its own. The General surgeon said the Nissen fundoplication (wrapping the stomach around the esophagus) went well. As well as he would expect anyways. She was admitted to the PICU where she was still intubated until she stabilized. Once she started to breath on her own and started to move they removed the tube. Her pain got away from her a bit today. The nurse did a good job of staying on top of it and talking with the doctor. It was nice to have a good nurse in the hospital - but we usually do in the PICU. We know the nurse that is on tonight which makes it easier to go to Ron's house to sleep. They told us who was all on tonight and we asked for her. Thankfully we were able to get her. I don't know if it is a good or bad thing when you know so many of the nurses. Good - then you know who you work well with or Bad - means we spent to much time there?? Chris is staying in Marshfield tonight. I came home to be with Zak. We will swap out tomorrow afternoon.
We are hoping neurosurgery and neurology will stop by tomorrow to address Callie's twitching episodes. Other than that it is time to rest and heal so we can come home. The doctors thinks we will start feedings on Friday. Depending on how she is doing we hope to be home Sunday or Monday according to the Dr.

Big Smiles :)

Callie had Huge smiles on Friday! We have been able to get her to smile lots now. Of course you have to bounce on a yoga ball and talk silly! She just loves it. Then we laugh and she smiles more. So exciting. I love these days. They are so special

It was a long weekend again. Callie was having another one of her episodes of twitching. It has been about a month since the last major episode. She has had a few small ones, but nothing over concerning. I just feel so bad for her when she gets them. She will twitch and cry. 36 hours later she snapped out of it and had no voice from screaming so much. It breaks our hearts.
Zak did great. He played by himself staying entertained with all his toys. By Sunday afternoon we could tell he just wanted his turn of all the attention. He is such a good boy. He sure loves to kiss now. He still kisses like the puppy dog. Maggie (Grandma and Bumpa's Dog) loves to kiss him. I still think that is where he learned to kiss from. When we ask for kisses he will give a little one on the chin and when you say thank you he gets all excited and licks your whole cheek. I got a good face wash this weekend. All I could do was smile, Laugh and give him a huge hug!

Thank you everyone for Keeping us in your prayers. This will be a big week at our house. We have to be in Marshfield Wednesday morning at 6:00am. Surgery is scheduled to start at 8am. The doctors have agreed to put Callie in the PICU for recovery with her history. We are expected to stay in the hospital 3-5 days. Hopefully she will recover quickly and we can get home sooner rather than later.

Answered Prayers

I am always saying my prayers that the kids stay healthy and away from all the major illnesses going around. Surgery is next week and they both need to stay healthy. Zak's sitter called on Tuesday saying she had strep so she was not at the house. Wednesday she was suppose to come again and her daughter was sick. Later she called and was diagnosed with H1N1. Thank God she did not come over on Tuesday. The last time she was here was Thursday so we have not been exposed. I pray her daughter recovers quickly and starts feeling better.

Pumpkin Patch

Zak went on a field trip today with school, Daddy and Grandma also went with. They went to a local pumpkin patch and took a hay ride. Then they got to pick out a pumpkin. Chris said they had a good time, although it was darn cold out! We had to get out the winter coat, hat and gloves.
We got our first snow of the season yesterday. It stayed in the trees and on the grass, but not on the road. That is the best kind, I love how the trees looked - so relaxing. I wish I would have taken a picture. Now all we need is a fire place to curl up in front of on those days.

We lost a fishy today. We did not even know it was sick. Chris went to feed them and one was floating. I don't know what my deal is I cannot seem to keep fish alive. Any tips?? There are still 4 left. Hopefully they are not all sick.

Somthing to share I received today:

To get something you never had, you have to do something you never did. When God takes something from your grasp, He's not punishing you, but merely opening your hands to receive something better. Concentrate on this sentence.... 'The will of God will never take you where the Grace of God will not protect you.'

Who matters,Who never did,Who won't anymore....And who always will.
So, don't worry about people from your past,there's a reason why they didn't make it to your future.

What a great weekend

It was nice to relax this weekend and also get something done around the house!
Friday Chris and his dad went duck hunting again and were in by 7. One of my close friends came over for dinner. The kids were even good so we could relax and sit down to eat. When the boys got in from hunting the girls went to get a pedicure and to a local restaurant for desert and drinks. It was so nice to get out of the house and just catch up. She is one of those friends we can talk about the kids, work and most importantly a lot of nothing, but it is all very important. We decided at dessert we were not going to talk about the kids at all. We had so much to say it was not even hard to think of things to catch up. I just love those types of friends! Thanks for a great night out!

Sat I was able to finally clean the bedrooms. They are the last to always get cleaned. It is so nice to walk down the hall and see a clean rooms! Then Sat night we had a nurse on that got here at 6:30. We went out shopping.. nothing fun just the necessities, TP, soap, paper towels you know how that goes when you are almost out of it all. We took Zak with. It was just like the old days when we shopped as a family. We still don't like to take Callie out, especially with her surgery coming up. We just cannot take the chance of her getting sick. Soon we will be going out as a family of 4.

Callie turend 8mo old on Sunday!

A decision has been Made

We finally made a decision regarding Callie's surgery. After many conversations with the doctors we decided to do the nissin fundoplication (Where they wrap the stomach around the esophagus). It was such a hard decision, but it will be best for Callie. Surgery has been scheduled for October 21. We will be in the hospital for 3-4 days assuming all goes as planned.
Zak will have his eyes fixed on he 23rd. It will be another busy week at the hospital.

Decisions

It is defiantly Cold season.. not only outside, but at our house. Today it is much cooler outside. I am sure the nice weather will be back soon. Zak came down with his first cold of the school year. I am sure it is from getting his flu shot on Friday. It seems like every year this happens. He was so nice to share with Mommy too. Poor guy when he is sick he gets so much gas and just gags from the flem with his Nissan (stomach surgery he had for GERD). He is quite the trooper though. We are hopping Callie does not get it.

Zak is up to 28 pounds again. He likes to eat now that he is fully recovered from his tonsil surgery. Keep it up big boy! What a difference that has made is his sleeping too. Callie is still around 7lb11oz. The poor girl is getting plenty of calories but just burns so much trying to eat. She is also getting more playful since she has been feeling good.

We now have a big decision to make about Callie’s weight. We have been putting off a feeding tube, playing the waiting game. We are finally to that point. Several doctors have asked If we have considered it. Of course we have, we just are not ready. We have had some very long talks with our GI doctor. He has even called us at home on several occasions. He is one of the most amazing people I have ever met. He truly takes everything into consideration. Last week Chris and I finally agreed to move forward with a feeding tube. Callie had a rough week with an ear infection, antibiotics which lead to lots of stools and reflux. Now we need to determine if the reflux was more because the antibiotics or just because she is finally eating more.. or just because that is her and that is the way it is. Unfortunately no one knows the answer. Where is the magic ball when we really need one. So now we have begun the discussion if she needs the Nissin.. after even more discussions (yes all in one week) we said fine, go ahead. Our GI doctor said we should meet with the surgeon and himself again before we move forward. I just wish this was a simple decision like it was for Zak. This time it is not a cut and dry decision. I think this is one of the hardest choices we have had to make regarding our kids medical care. Thankfully our doctor is amazing and we trust his judgment. It is in God’s hands to guide us and I know it will work out in the end.

On a good note.. Chris and his Dad went out on Duck opener this weekend. They each got a Duck and were home in time to enjoy the afternoon. I love that they can go out and bond and just get away for a bit. Then Chris went up north on Sunday with some Friends and they got 2 more after getting stuck in the mud. There is always a good story that comes out of every season. So needless to say, thanks to Kathy cooking we had duck on Sunday. I still cannot stand the smell of it cooking in the house. I am sure there will be plenty more weekends of hunting.. tis the season. Also, Sat night we got out with the whole Family. Chris’s cousin and wife were in town from CA for the weekend. It was nice to see everyone and get out of the house for a while. Both kids did good, but were defiantly ready to come home.

So much for a quiet week

It was supposed to be a nice quiet week. Back to "normal" only 2 scheduled appointments for the whole family - 2 therapy sessions. A full week of work. I knew it was too good to be true!

Callie started to have her twitching episode again on Wednesday. By 6pm she was screaming and not eating. She took one 15 min nap by 8:30p. We took the bandages off her head from the shunt surgery and her soft spot looked indented. We had no clue if this was normal or not since we were so used to this raised lump. Our nurse assured us it was ok, but we should just call neuro in the morning. The screaming continued so we called the PICU doctor about 10:30p who suggested we bring her to Marshfield. We really did not want to be there knowing what type of care we would get... no help at all due to lack of staffing with all the cuts. It sure makes for some long days and nights when you average 2-4 hours of sleep a night, in 15-30min increments. Not knowing if this was shunt related or one of her episodes it was best to be checked out though. She had a CT scan that confirmed the shut is working properly and everything looked great. She was getting dehydrated from not eating with all the screaming so she was admitted. They adjusted the shunt on Thursday and monitored her. These episodes go for 36 hours and then we are fine. Still no clue what they can be. We kept telling everyone by Friday morning at 6am she will be fine. Really I think they thought we were nuts. Friday morning she started eating again and perking up.. just as we thought. Sometimes I wonder why they just don't listen to parents and accept it is practice and they don't know everything. She had a great day of eating. Her last good bottle was 10pm Friday. We have been fighting with her since to get her to eat. Ahh.. Sometimes she goes in these little spurts, but not an all day thing. Finally at 8:30pm today, of course when there is no walk in. We went to the ER. Sure it was an ear infection. Really - the ER for an ear infection, but what do you do at this time of day when you really don't want her be in pain all night long and have to wait until morning to be seen? So off to the hospital. It was an awesome visit. We went to St. Clare's. No reason for a 45 minute drive to Marshfield. We were in and out quickly. Sure enough it was an ear infection. Her second already. They even filled the prescription there for us so we did not have to figure that out at this time of night. We have had some great experience with that ER. They also took a bunch of wax out of her ear and sure enough, she started to eat again. It was so nice for her not to fight with us, when all she wanted was a full tummy. What a great experience! Thank you.

Zak and I went to Gabe's 4th birthday party today. It was so nice just to get out and do something fun rather than the regular routine. It was so cute, when we got there I told him happy birthday and that Zak brought him a birthday present. He said I hope it is transformers..thankfully it was. I told him I did not know he had to ask Zak. He said Zak does not even talk yet, he is not big like me. I just had to laugh it was so funny. Little does he know Zak is older, yet he is smaller. That is all kids really know age by when they are so young. Kids do say the darnedest things :) I told Gabe's Mom we are coming over more just to eat. Zak ate so well. A half of container yogurt, a whole hot dog, cheese, Cake and Ice Cream.. and Cheetos! A new food for him. He even bit them, I was shocked. I guess we will have to go shopping. Then I set him in the grass to play. Something we cannot really do at home since we have so many bugs being by the woods. He rolled right to his tummy, and stayed there playing in the grass for about 2 min. He never stays on his tummy. Then he sat and pulled the grass. He sure liked it. What a great day he had!

Then to top off the day, we even went to dinner with some good friends of ours. They are busy with 2 little ones as well so it is hard to get sitters and get out. An adult evening just to catch up on life. Something we have not done in a while. It was much needed. So even after a crazy week we had a good day.

Bus Ride!!

Zak rode the bus for the first time this school year! He missed the first week of school since he had pneumonia. Last week Grandma took him to school and picked him up. Now he is taking the bus to school. He is the only student on the bus on the way to school. The babysitter and Grandma pick him up. He would have a 45 min ride home..not an option for him. Every time the bus stops he cries. It would have made for a long ride. I have been getting good reports from school, he seems to like it. He has 5 kids in his class right now. He has an Teacher, Aid and many therapists in and out. It is great to have a routine for him. Then he comes home and is with the baby sitter until we get home from work. She has been working on reading books, art project, Napping in his crib (HUGE step), and therapy.

Zak getting on the bus with the bus driver and school aid helping.

I thought this picture was adorable. Zak is sneaking up on Callie. He still thinks she is an animated doll still. We have been trying to work with him lots so he understands she is fragile. We even bought him a toy doll to see if that would help. We keep telling him someday she will be big and then it will be pay backs. Daddy loves to play the so big game with him. He will say "How big is Zak? So big. How big is Callie? So Small." It always puts a smile on my face. It is so cute.

E-mail

I got this e-mail today and thought it was neat and wanted to share:
Life is too short to wake up with regrets. So love the people who treat you right. Forget about one's who don't. Believe everything happens for a reason. If you get a second chance, grab it with both hands. If it changes your life, let it. Nobody said life would be easy, they just promised it would be worth it. Friends are like balloons; once you let them go, you can't get them back. So tie the good ones to you heart so you never lose them!
Thank you go all of our wonderfully friends and family and all of the support you give us. We are fortunate for each one of you.

Callie is doing better today. She is still a bit tired and not eating the best. She goes in spurts. Hopefully this weekend her feeding will pick up a bit.
Zak also had a good day. His teacher said he is going out side for play time. He even left his hat on! Hopefully the sunglasses will be next. He made hand puppets with the babysitter. She does such an amazing job with Zak.

A little more stress.. we had an aid that was going to help Zak in the mornings. She She quit after 3 days saying Zak is too much work. We are in the search once again.

We are Home

Callie is home from the hospital. We are ready for life to get back to "normal". What ever that means. Hopefully things will slow down and the kids can get healthy.

We had a terrible night in the hospital. I hope we don't ever have to go back any time soon. Callie gets night nursing when we are at home. The team knows her so well that we are finally getting a little sleep. She still gets suctioned from her nose surgery and she is on a strict feeding plan so it can make for some long nights at times. Try adding the pain from surgery and wow, it can make for a long night. By 3am I still had not slept, after asking for help from nursing I was told they could check in, but there was not anyone to stand by her bed and keep her calm or just rock her. I was ready to cry. This same thing happened to Chris one month prior- I now understood the feeling of helplessness he went through. I just thought to my self is there anyway we can just break out of this place and get home where we have help. I was able to catch little cat naps before she would scream again from the gas pains. Partially from surgery, the other part from crying since she was in pain from the surgery. Finally 7am and Neurosurg made the rounds and said from his stand point we are good to go. The surgery is working as her soft spot is going down. It is up to the peds doctors on the floor. I started packing our bags immediately.. we were going home. I did not care what anyone else had to say. Thankfully they were on board and discharge could start. She has been doing well throughout the day at home and finally starting to eat better

Grandma came down early in the morning and brought Zak with. We had his foot x-rayed since we heard a loud pop on Sunday and he still will not bare-weight. Thank god it is not broken. Hopefully soon he will be feeling better.
Yesterday was his first day of school since he missed the first week with his tonsils being removed. We received great report. I know he always love going there to play with his friends, teachers and therapists. He has another great team this year so we are excited to watch his progress.

Surgery is a Success!

Callie had her surgery today. We were up at 4am to be in Marshfield for a 6:15 check in. The neurosurgeon put in a shunt since her first surgery did not work. The original surgery was an attempt to make the natural drain a little larger so the fluid would drain on its own. After our MRI on Friday it was determined the fluid was the same as the last MRI (prior to her previous surgery.) Putting in the shunt was our only option at this point. She has internal tubing that runs just under her skin from her brain to her abdomen. It just feels like a vain under her skin. They used a shunt that has a valve that can be set externally. Any time she would have an MRI it would just need to be reset. We pray this will work. We will always have to watch for infection or blockage of the shunt since it is hardware, however it does not sound like it is extremely common.

One of our Pastors came to visit us this morning while we were waiting for the surgery to be finished. It provided a nice distraction from our typical wait. It was very calming to have him here and say a prayer for Callie and our family. We cannot say enough great things about our Pastors and congregation for the support and prayers for our family.

Once surgery was completed we went to recovery to be with Callie. She was doing well and was admitted to the main Pediatrics floor. She has been sleeping most of the day with a few fussy periods. When she cries the surgical site on the top of her head bleeds more. They are watching it closely. She really has not ate all day. We are hoping that will increase by morning and we can go home tomorrow.

Also, Zak will be getting an x-ray on his ankle tomorrow. We were doing his normal routine stretching and we heard a pop in his ankle. He does not want to stretch it, stand on it or even have it touched. The doctors thought it would be best to have an x-ray just to rule out things. Hopefully it is just a matter of time and it will feel better.

Surgeries Scheduled

Both kids will be having surgeries.. again!

Zak went to the eye doctor on Tuesday. He is going to repair the eye that feel last week. He also decided to repair the other one even though it is ok. Who knows if it will fall the day after surgery or 3 years. With our luck I am sure it would be sooner rather than latter. This way they will both be done at the same time and look the same too. Surgery is scheduled for October 23rd.
We also saw his pediatrician for his pneumonia. She changed his antibiotic since he still had a fever. We are already seeing a difference in him. Also, he gained a half pound since surgery. Way to go buddy. We also followed up with ENT and everything is looking good. Hopefully he will start to eat this weekend.

As for Callie. She had a MRI today and it appears the fluid in her brain is the same as it was just before her last surgery. Therefore the surgery did not work which we knew could happen. She will need to have a shunt place. Surgery will be on Tuesday. She will for sure need to stay one night. Hopefully that is all.
Callie also had a great week in the weight gain. She gained 5oz in 6 days! She is now up to 7lb 8oz. We are finally outgrowing the newborn clothes.

We also got our Nanny back part time!! Our peds doctor was not very excited to know Zak was back in day care. With him just having surgery, one on the way, pneumonia and Callie she did not think that was best. That same day our Nanny called and said she can work part time. We will miss all of Zak's daycare teachers and we know he will miss all of his friends, but we cannot wait to have our nanny back for some 1-1 time while we are at work.

Tonight is movie night in the house. We can all finally sit down and watch a movie. No nurse tonight so hopefully the kids will sleep!

Pneumonia

Pickling is done.. all that is left is the beans. Yesterday Kathy, Dan, Chris and Annie pickled Zucchini. We did not know what to do with all of it in the garden and a guy at Annie's work had pickled some and let us try it. It was awesome. Beans are next weekend and then we are done for the year.

Zak is still under the weather. His oxygen stats were a bit low over night so we took him to walk in this morning. Determined he had pneumonia. The doctor looked at the x-rays and thought they looked fine. He still is not eating but thought that was normal as his throat is still swollen. An hour later they called and the radiologist looked at the x-ray and he does have pneumonia in his right lung. Just as we thought. It is pretty bad when we know he has pheumonia! Now we are on antibiotics and nebulizer treatments. Just after we got home from the clinic he started in with diarrhea. Too much pedisure from not eating. We know it will only get worse from the antibiotics.. poor boy.

Callie had a fairly good day, keeping mom and dad busy feeding her. We won't complain though. We always like the uneventful days.

Chris was busy this afternoon. He joined a football draft and was able to pick his players for his team "no idea". He is hoping to have a good year as this is a nice getaway from all the typical days stress.

What a week

Zak had his tonsils and adenoids removed on Tuesday. Thankfully this time we did not have to be at the hospital at 6am. Check in was at 8:15. It was hard watching him play having a great time and having no clue what was about to happen to him. The next time we see him he will be miserable. They also did an echo on his heart at the same time. We should get the results on Monday as our doctor was out of the office. They believe his heart has gotten better, so this was just to confirm. The surgery was about 15 min and the doctor was happy how everything went. Zak stayed 1 night in the PICU for recovery. Chris hung out at the hospital while Annie went to work on Wednesday and Callie's doctors.

Callie had her follow up with the neurosurgeon and an ultrasound on Wednesday. She will be having an MRI to determine if the surgery worked or not since we could not get enough information from the ultrasound. There is only a 50% success rate with her surgery. If it did not work we will be having a shunt put in. Shortly after her appointment she started to fuss and would not calm again. She started to get her twitching episodes. This lasted until bed time when she finally got a little rest. Only to start acting up again on Thursday. We ending up taking her into the clinic and had and EEG done on her brain to see if it was seizures. She had been tested in the past, however since this was actively going on they wanted to test again. Thankfully it was negative, but still no answers. After screaming from 7a-4p she finally calmed about 15 min to start up again. She was on and off in the evening and throughout the night. Finally Friday morning she stated to eat again and was happy and very tired.

On top of all this.. as if it was not enough for one week. We looked at Zak's eye and thought it was swollen. 2 days after surgery it still did not look better and we realized the eye surgery snapped. AHHH.. seriously, we just need a break. So we called the eye doctor and we go in on Tuesday. We are pretty certain this will mean another surgery to fix it.

Next week will be full of appointments - Zak has eye and follow up with ENT from surgery. Callie has a weight check and MRI. We also meet with Callie's speech therapist. It is one of the same one's Zak had when he was in B-3. This will be Callie's first appointment. Watch for all of our followups.

All About Callie

Callie Elizabeth was born on February 11, 2009 at 11:17am at St. Joseph Hospital in Marshfield. She weighed 4lb 13oz and was 17in long, what a little doll! Mom was only 37 weeks, but defiantly ready to meet her precious daughter. Since she had a c-section prior, Callie was also born by c-section after a night of laboring at home.

At birth Callie was also not able to breath through her nose just like big brother Zak. She was diagnosed immediately with having choanal atresia, the nasal passages did not develop and she would need surgery to correct it. She was admitted directly to the NICU. At 6 days old the surgery was a success; the doctors drilled a new airway and used plastic stints to keep the passage open so it could heal. For three months she had stints in her nose to keep the airway open and allow her to breathe freely. On May 14, 2009 Callie had the stints removed and has been breathing wonderfully since (with a bit of suctioning still). We also learned at birth that Callie had a heart Murmur that the doctors will continue to monitor - several days later she was diagnosed as having Pulmonary stenosis, again just like her big brother. It got slightly worse around 2 months old, at 5 months old it was significantly worse. (about a 60% murmur). The doctors continue to follow her closely. For the first time at 12 months old we were told her heart stabilized at a grade 70 murmur. We pray it will now get better just as Zak's did. Only time will tell.

During Callie's newborn screen she was also diagnosed with a Thyroid disorder. He thyroid is slightly smaller than it should be. She takes a daily medication to monitor this and we continue to be monitored by the doctors.

Callie has also had some feeding issues along the way. She likes to eat, however it does take her a while to get a bottle down. The issue with this is it takes her so long to eat she is actually burning more calories than she is taking in. She is on a very strict feeding regiment now to hopefully allow her to gain weight. Finally at 8 months old we decided she needed a feeding tube to help with the growth - we just needed to make some decisions. Since Callie was also diagnosed with severe GERD at 2 weeks old, which basically meant she had really bad acid reflux or heart burn, she was treated immediately with medication. Although she still spits up once and a while, it seems to be working. She had an endoscopy (a look at her esophagus with a camera) which is normal at a glance, but does show some mild aggravation. We decided she should have the same surgery as Zak where they wrap the stomach around the esophagus to prevent the reflux and place the feeding tube at the same time. Callie showed a significant gain in weight, but not a significant change in length. We will continue to monitor this. At age 2 a decision can be made if she needs growth hormone.

When Callie was 4 months old she had some internal bleeding. She was hospitalized for 4 days to run tests and evaluate. Although we never got an answer we are thinking a bone chip from her nose may have gotten swallowed. This healed on its own. She was anemic for a bit after, but continues to show improvement.

At 5 months old Callie had eye surgery for Ptosis, a condition in which under-developed muscles do not allow her eye lids to raise properly. The surgery connected her eye brow with her eye lids so now she has control over the lids and can see much better. It was a very minor surgery. Callie has also been monitored for additional fluid in the brain. After an MRI it was determined she was need to have a third ventriculostomy to help the fluid drain. This surgeries were done at the same time. The brain surgery was given a 50% success rate. During the surgery she ended up having an external drain put in since there was blood in the fluid. She spent a few nights in the PICU. Callie recently had an ultrasound for her follow up and there is concern about the fluid in her brain. They did another MRI to determine if the surgery was a success or if she would need a shunt. Unfortunately the surgery did not work and Callie needed to have a programmable shunt placed. Thankfully she has been doing great!

Callie has an unbalanced Translocation (46, XX, der(3)t(3;6)(p24.2;p21.1) which we continue to learn about. Doctors believe this will cause Callie to have some mental and physical disabilities, but we are determined to give her the care and education she needs. To date we have only learned of one other family in the world with the similar unbalanced translocation which we have been able to speak with a few times.

Callie is a joy to be around. She loves her attention. She is a feisty little girl.. we know who is going to be running the house! Big Brother Zak likes to check her out and pull on her Arms and legs. We are so thankful to have another little miracle in our life.

All About Zak

Zachary James was born on March 31, 2005 at 11:15am in the Aspirus Hospital in Wausau after a long wait! He weighed 5lb 1oz and was 18in long, what a little peanut! Mom was only 36 weeks, but her water broke 27 hours prior to delivery. Due to failure to progress Zachary was born by c-section.

At birth Zak was not able to breath out of his nose so he was transferred to St. Joseph Hospital in Marshfield, WI. Once in Marshfield the doctors discovered that Zak had choanal atresia, the nasal passages did not develop and he would need surgery to correct it. At 5 days old the surgery was a success; the doctors drilled a new airway and used plastic stints to keep the passage open so it could heal. For three months he had stints in his nose to keep the airway open and allow him to breathe freely. On July 12th, 2005 Zachary had the stints removed and has been breathing wonderfully since!

We also learned at birth that Zak had a heart Murmur that the doctors will continue to monitor. It did get worse around 6 months old, however it has become significantly better since. He currently has a grade 20 murmur and has been stable for a few years. Last week he had another echo since the doctor thought it was even better. We pray as he grows he maintains a low grade murmur. We know he will always have one due to the anatomy of the heart. We are thankful he has been out growing it.

Zachary has also had some feeding issues along the way. At first we thought he was not gaining weight well because of him not breathing at full capacity with the stints in his nose and he had so much drainage from the surgery. Later we found out he had sugar in his stool so we believe he was intolerant to some form of sugar. He was put on special formula which helped a little, but he still would not eat enough and seemed to be in pain. We continued to search for answers. At 9 months Zak was diagnosed with severe GERD, which basically meant he had real bad acid reflux or heart burn. We first started with medicine and tried other options like going to the chiropractor. Nothing seemed to be the answer. After a night in the emergency room and being transferred again to Saint Joseph’s for a possible bowel obstruction (later found to only be sever gas) we finally decided on a solution. Since all of the medicine did not help and he was in so much pain that he would have "blue spells" from holding his breath until he passed our or fainted, it was decided that surgery was the only option. On Dec 16th, 2006 the doctors completed a nissen fundoplication surgery. They surgically wrapped the stomach around the esophagus to create a muscle so acids and gasses could not cause heart burn. They also placed a g-tube (feeding tube) into his stomach to help gasses to escape. The tube is also used to add nutrients directly to his stomach so he is able to gain and maintain weight better. The surgery made a huge difference in his personality. He began to smile and laugh more and started eating better, though he still doesn't eat much at any one time he now eats 4 meals a day.

At 7 1/2 months Zak had eye surgery for Ptosis, a condition in which under-developed muscles do not allow Zak’s eye lids to raise properly. The surgery connected his eye brow with his eye lids so now he has control over the lids and can see much better. It was a very minor surgery and we were home the same day. After surgery he looked like a whole new boy with a whole new outlook on life! On follow up check ups with the eye doctor we were told Zak would need glasses since he was severely nearsighted. After going to a conference held by the state for families with visually impaired children, we learned it may be beneficial to have acuity testing done. We went to UW-Madison, where we were told Zak was considered "legally blind". We continue to have him wear his glasses and work with the doctors to determine how he uses his vision and what this will mean for Zak. They suggested having an MRI to get more answers as to why.
During the MRI we learned the eye health was normal, however we found out that C1 and C2 (the first 2 vertabraes in the neck) were fused together and growing inward causing his spinal cord to be compressed over 50%. After doctoring local we met with a Neurosurgeon in Iowa that was able to perform the seven hour surgery. After 1 year of recovery in a neck brace Zak finally got the OK to be brace free! Zak has gained so much mobility from having the surgery. He is even weight bearing on his arms which he could not do because of the amount of pain.

Zak has also had 2 sleep studies since he has a difficult time breathing. It was determined he has obstructive sleep apnea and he will be fitted for a c-pap mask to wear at night. After further doctoring we learned he needed to have his tonsils and adenoids removed. This was done in August of 09. His sleep apnea has gotten significantly better, when he is healthy we are not to worried, how ever when he is ill we still monitor him closely.

Zak has also had some additional minor surgeries for ear tubes, removing an abscess and cutting his frenulum. As he gets older we spend less time in the hospital. He continues to get stronger and have less episodes of pneumonia.

Zak also has an unbalanced Translocation (46, XY, der(3)t(3;6)(p24.2;p21.1) which we continue to learn about. Doctors believe this will cause Zak to have some mental and physical disabilities, but we are determined to give him the care and education he needs to be all that he is able to be. To date we have only learned of one other family in the world with a similar unbalanced translocation which we have been able to speak with a few times.

Zachary is a very good boy and a joy to be around. He completes us! I don't know what we would do with out our little miracle! He has started life with a few challenges but he has always remained strong as I know he will throughout his life.

With strong family support we are able to give him the care he needs!