Surgery!

Okay so can we say I am a little behind on this blog, oh goodness! So this will be the first of many posts to come so keep your eyes open for new ones :)

Seth had his g-tube surgery on June 16th.

Wednesday night I took Sydney over to the MacCallum's because they were amazing and totally willing to keep her for the few nights. That night I decided to try and keep Seth up a little later because after 3am he could not have any pediasure so I think I got him to last until 9:30pm and he was ready for bed. I set my alarm for 3am to try and get Seth up and eat a little bit but of course he wanted nothing to do with it and went right back to bed. We woke up and got Emmy to my moms house by 8:00am so that we could give her any instructions and went on our way to Phoenix Children's. We got there at 9:30am so guess what we waited and waited for what seemed like forever. We finally got into a room and got him in his gown around 11am and then we waited some more. Let me remind you that Seth has not eaten anything since 9:30pm the night before and he was hungry. He was allowed to have clear liquids up until 8am and guess what SETH does not drink anything but his pediasure but man I had to try and he refused. So around 12:45pm the nurse came in again and said that the surgeon had to go into an emergency heart surgery so when she is done she will come and do Seth. But let me tell you Seth was such a happy boy playing on the hospital bed and you know whats even better...........HE CRAWLED for the first time ever. I had to sneeze so as I was getting a kleenex Mike was yelling at me to look at Seth cause he crawled but I did not believe it at all, but then all of a sudden I caught a little glimpse of what he was talking about. So I told Mike that he had to have his phone on video and have it in the ready position. I got the little piano he was playing with earlier and started moving it away from him and he decided to get up on all fours and just decided to camp out there for a little bit and then all of a sudden he was off and he decided he was just going to crawl across the entire bed! It was so AMAZING! For a while I always had expectations for Seth and then I decided to always fight for him and try my best to not set high expectations that can not be met so that I will not get disappointed so that is what I did and you know what when he crawled it was so amazing because I never knew if he was going to be able to do it and he proved that HE can and he does it so well. Mike and I at that moment actually wanted to pack up our things and leave because we were afraid that after his surgery he was not going to start crawling again because it will be on his stomach. But since then he has done it a couple times. He does not do it all the time and not even every day but he can crawl and that is enough for me.

Okay back to the surgery. So finally about 1:45pm they took him back and every time he goes back you would think it would get easier but it never is. The surgery itself was about a half hour but it took more like an hour until we could go back and see him. He stayed sleeping for a while with oxygen and finally we got a room around 4:30pm. He was in quite a bit of pain and was on morphine right when we got in the room and went back to sleep. Around 8:00pm Seth got a roommate and can I just say NEVER put an older kid with a little one. I honestly do not get that at all. The surgery was done at the new hospital but he had to be at the old one for the stay and that means sharing a room. I can not wait until everything is at the new one and then we wont have to share rooms anymore. Anyways this boy was 15 years old with a really bad kidney infection and horrible headaches and then you have Seth crying during the night and I did not get much sleep I am thinking about 2 hours at the max. I had a night nurse that I could barely understand and she wanted to wake him up to change his diaper and I just wanted to smack her because why would you wake up a sleeping "baby" toddler to change the diaper, who just had surgery and needs to sleep not wake up? I told her no and we can change it when he wakes up. He woke up at about 3am and I was asked again to change his diaper which I did even though it was totally dry! We then got a talk from her and from what I understood he needs to have wet diapers or we were not going to be able to go home. Sure enough by 6:45am he had 3 very full diapers and she left me alone. Around 10am on Friday we had the dr come in and she told us that we would be able to go home if Seth could keep his normal feeding amounts down so we had to wait for the nutritionist to come in and talk to us and figure out what his feeding schedule was going to be. I know for a simple fact that I did not want to have feedings at night because he already knows how to sleep through the night and I really do not want him to be so different than other kids and eat at night and only a little bit during the day. If he was totally not gaining weight and actually losing weight than I would do night feedings but I just did not see the point as of right now and I was so glad that she agreed with me. And since he does take a bottle and about 8oz each time we did not have to get a pump. Everything is gravity which is really nice. So by this time it is about 1:45pm and He has not eaten for over 24 hours and they decided to try some food. So at about 2 we gave him 6oz of food and kept it down just fine!!!!!! YAY we were going to go home and then we both looked at each other and had no idea how to do any of this and we knew that we needed to be able to because whatever food he does not finish from the bottle goes straight into the tube and that mean in a few hours he was going to eat again and we had no idea what we were doing. So when the nurse released us we asked her to show us how and she did but apparently there were some other things that we needed to know that we found out 2 weeks later. So we got to go home...and after we got home I went and got Sydney for the wonderful MacCallums and my dad brought Emmy home for us. The first 3 nights were pretty rough cause all he wants to do is sleep on his belly and it really hurt him to do so. But can I say he slept a lot and I loved it. I think the first three mornings home he did not wake up until 10am and Mike and I were able to sleep in until about 8:30am which was AMAZING! The next few days took a while to get use to and you always realize when you do something wrong because you will either have food or medicine all over you! I think I have done that about twice already! Giving him is medicine is about a million times better...what use to take us about 30-45min to give meds now takes us about 2 minutes so that is a major blessing and benefit to having the g-tube! Thank you all who were praying for Seth and those that continue to do so we are so blessed to have prayers going for our special little boy.

In recovery a little longer than planned cause he needed a little help breathing

What is stomach looks like now...thats his new little friend.

Blog Posts up next:
Seths First Birthday
Ear Tube surgery
Wheelchair and appointments
Palm Springs

CMV awareness month!

June is national cmv awareness month. I have a hard time with this one and I will try to explain it the best way I can but I can not promise that it will make any sense.

CMV has changed my world upside down. I hate the virus with a passion! It has done horrible things to innocent little babies and yet there is nothing to stop it and very little people know about it.

I will never stop a pregnant person and tell them about cmv and what it can do to the baby. If they ask that is a different story but I am not going to scare them and freak them out for no reason and yet at the same time I think people need to know about it so we can STOP it with a vaccine! There is no other way to stop cmv unless there is a vaccine. It is such a fragile virus and it can be passed in so many different ways and even doctors do not understand the virus completely! I want more than anything to have a vaccine so that no one else has to go through what we go through as a family but more importantly what Seth has to go through every day! I wish that there was cmv testing on all babies that were born and failed their hearing test so that we really know how many babies this effects and so we can find a vaccine.

I have a hard time when people say this can be stopped with simple hand washing...it's not that easy. I'm not a dirty person I wash my hand very often I most likely did not get it from not washing my hands but rather kissing my own daughter, sharing her drink, kissing my husband, watching a friends kids, working at the church. And to be honest so very few women who even get cmv even transfer it in utero, that is why its so rare. As of right now there is nothing we can do to stop cmv except eliminate it with a vaccine and I'm all for finding one! I'm all for raising awareness but in a tactful way. I will share everything I know about it to whoever wants to listen but I do not want to scare you for no reason either because most likely you have already had it and if you don't you probably will not transfer it.

It's hard for me to live with the guilt and the everyday heartache that I could not keep my little boy healthy inside of me which is suppose to be the best place for him and in the end it caused more damage than being out of the womb. But God knows what He is doing and I have to keep asking Him to show me the way! He is the healer of all things and He will be glorified and who knows Seth could be here to change the world cause He truly is that special!

Thoughts, Fears, and Eternity.

I see little boys that are Seth's age and I have a hard time. They are running around at the park, fighting with their siblings, eating solid foods without gagging, talking all the time, coloring on walls with markers, cutting their own hair, making a huge mess while they play in the sink, or saying "mommy I love you." I'm sure it's jealously cause it is wanting something that I do not have or can't have but yet at the same time it hurts and it is hard. Life is hard!

It is hard to think that I might not see Seth stand up on his own, or walk down the hallway, or eat food off his plate, or say "I love you", or play sports. I try not to focus on these thoughts but at night when everyone else is asleep I have these thoughts. The worst one I have is that if I go to sleep and I miss something happening to my little boy and I wake up in the morning and something happened. That's what keeps me awake.

I know God is in control and He has our days already numbered and everything is for His glory...I just need to constantly remind myself that what I know trumps what I feel and that God is glorified and God will take care of my family and my little boy! God is the most perfect Father and I am just blessed that He calls me his daughter. I didn't do anything to deserve His grace but He gave it to me. God Has Seth right where He needs to be and He has me where I'm suppose to be. I'm not going to lie, it's hard and sometimes it sucks, but eternity FOREVER awaits for me and one day I can call that my home!

GI Appointment

So it has been a while since I have posted. We have gone to the urgent care again with Seth last Monday and he got a new steroid and an inhaler with a chamber. He does okay with it but he really hates it. He has been hitting his head a lot lately and only on one side and the tantrums that he has been throwing are CRAZY so we have an appointment with his neurologist on May 6th so maybe we will get a few things answered. 

Last Wednesday we had an appointment with our GI doctor and they decided that my precious little muffin needs a g-tube. When we got there they weighed him and he gained 2 POUNDS in 3 months!!! That is HUGE and awesome...but it did not solve the g-tube issue because he still has trouble with the whole swallowing/aspirating. The doctor thinking that the pneumonia eventually will take him and would rather get the g-tube and use that as a safety net.  We have an appointment with the surgeon on May 11th and we also need to do another barium swallow study. It will tell us what he is able to handle and what we will have to put in the g-tube. We know for sure all his meds will have to go into the g-tube but we are not sure about his bottles. I would LOVE to still be able to feed him and only use the g-tube for meds and if he gets sicks just some extra fluids. So if you think of it you could pray that we would still be able to feed him his pediasure through the bottle and not a g-tube. 

This whole g-tube has been really hard on me. I really do not want him to have to go through this and another surgery. Seth does not deserve this...he deserves way better than this. Watching him in feeding therapy and how much he really does not enjoy eating food and just how hard it is for him to just even figure it out and swallow the food and breathe at the same time. I hate what CMV did it him. I know that I should not think this way but sometimes my thoughts just go there. I wish I could take away all that he has to go through. I would get a g-tube and never swallow food again so that my little boy could. 

Seth has been really cranky lately and normally he is such a happy boy. I hate seeing him not happy and that something is bothering him. We have an appointment with his neurologist May 6th so praying that we might get some answers as to what is going on.

We had a great Easter and I need to get the pictures off my camera and onto my computer so the next post will be Easter and family fun. I hope that everyone had an amazing Easter!

ARISE MY LOVE

Not a word was heard at the tomb that day.

Just shuffling of soldiers feet as they guarded the grave.

One day, two days, three days had past.

Could it be that Jesus breathed his last?

Could it be that his Father had forsaken him?

Turned his back on his son, dispising our sin.

Oh hell seemed to whisper, "Just forget it, He's dead."

Then the Father looked down to his son and he said..

Arise, My love.

Arise, My love.

The grave no longer has a hold on you

No more death sting

No more suffering

Arise...Arise...my love.

The Earth trembled and the tomb began to shake, and like lightening from Heaven

The stone was rolled away. 

And this dead man the guards they all stood there in fright

As the power of love displayed its might

And suddenly a melody filled the air

Riding wings of wind, it was everywhere

The words of creation had been longing to hear.

The sweet sound of victory, so loud and clear.

Arise, my love. 

Arise, my love.

The grave no longer has a hold on you.

No more death sting no more suffering

Arise...arise....

Sin, where are your shackles?

Death, where is your sting?

Hell; has been defeated. The grave will not hold, the king.

Arise, my love.

Arise, my love.

Arise....Arise....Arise 

FUNDS FOR SETH!

So we have a new blog for our little muffin Seth. It is a blog for fund raising and to also let everyone know how things are coming along and of course how Seth is doing. Please if you get a chance go and check it out and follow us as we travel on this journey to do the very best for our little boy. Seth is a precious gift from God and deserves the best so please check it out!

http://fundsforseth.blogspot.com/

The kiddos.

Its been a while since I have uploaded some pictures from my camera onto my computer so I decided I would put some on the blog. These are from February and March, enjoy :)

She is the craziest girl I know but man I love her!

Ember trying out the bumbo

Sydney LOVES her sister!

Trying to sit in the bumbo and well she was actually able to get her little bottom in there.

First time with pneumonia (Feb 27th) he was able to keep his o2 stats up so we did not have to get admitted he was able to just come home after some IV antibiotics.

He decided he wanted the play-mat on top of him and he had so much fun doing it!

She is so funny! Only Sydney would walk around the house in just her undies and a helmet!

Sweet girl

We got Sydney some money jars and let her paint them and we have decided that we would start giving her a chance to earn some money and start understanding how it works. So we have decided that she will get 4 dollars every time we get paid and she will keep 2 dollars and 1 dollar will go into savings and 1 dollar with go into giving. Once she builds up enough we will open her up a savings account. She had so much fun painting them and she wanted me to paint one of them so I did but I was really proud of myself in that I did not help her at ALL with the two that she painted!

Ember Noelle @ almost 4 months 

(April 1st she will be 4 months) time sure goes by fast!

How can you not fall in love with this face???

She sure knows how to make us smile!

Out of all her toys on her "fun land" she wanted to play with the cup holders the most. 

Sweet muffin Seth at 21 months (on my gosh he is almost 2 years old)

24 hours...

I hate when doctors say you can't leave until you have been off oxygen for 24 hours. I understand why but I just hate the comment, I've heard it too much in the past 21 months.

Saturday afternoon was totally normal and we all seemed to be on the mend but around 4:30pm we noticed some retraction while Seth as breathing. By 5:30 we decided that I should take him to the urgent care and make sure he's still not struggling with pneumonia. So I headed out to phoenix children's urgent care and before I left the house I called to see how long the wait was and they said only 15 min. And sure enough I only waited 10-15 minutes until I got called back. We first went into the room and after they checked his breathing we had to go to the respiratory room. He was put on the o2 stats monitor and sure enough he was not keeping his o2 saturation high enough. He was keeping it at 88 and they would like it 94 or higher. So they did a breathing treatment then an X-ray and then another treatment and by this time his stats were at 85 so they told us that they were going to have to admit him either to Banner Cardons or PCH. We waited for the ambulance and his X-rays to come back and around 9:30 the ambulance arrived and they picked up Seth and I followed behind because I needed to get my car to the hospital. It was so hard to not ride with Seth. I hate leaving him by himself.
I got to Cardons and went straight to register him and then waited for us to get a triage room. Once we got in triage our nurse came in ( she is a tough one and rude in some ways but you can't help but like her) anyways she hooked him up and I decided to ask if there was anyway we were going home and she laughed and asked is he always on oxygen?" I said no and she replied with a "nope absolutely not." she decided before turning on the o2 to see if he could handle himself and he dropped right away to 87 but she left it for a good few minutes to see if he would bring it back up but he didn't so he was put on the o2. We waited in the triage room till 3:12am until the told us we finally had a room.

After we got the room and I got Seth to sleep I had to head home and get all his meds because one of them they are not allowed to give because of all the FDA rules so I had to make sure I had that to give to him in the morning. I got back to the room around 4:30am and he just woke up so I made him a bottle with some of his meds and then he went back to sleep around 5am and I was able to sleep till about 7am and then the day started. Mike came down around one so that Sydney and I could go and have lunch with my grandma and Archie, my parents, and Steven-Caitie-Averie. My grandma and Archie go back to South Dakota every summer and so we wanted to see them before they go back. After that I went back to the hospital and Mike and I got to spend some time with Seth before he went back and got the girls from my parents. Mike left at about 6:30 and got the girls all ready for bed and I just stayed at the hospital with Seth. He was having a few short seizures before Mike left to go home but around 8:30 I was making his meds and I heard his o2 machine beeping and I walked over to him and saw his whole body just convulsing and then looked at the o2 monitor and say he was at 74 then he went to 48 and thats when I opened the door and called to the nurse that he was seizing and came back in the room and he was at 22. It was so scary he was not breathing and going blue around the lips. At that point there were 5 nurses in the room one ran to get his emergency med and the other putting the o2 mask on him and another one suctioning out his mouth so he does not choke on anything. I have never seen him like that before and I really would never want to see that again if I do not have to. I had no idea what to expect and if things were going to be ok. I have no idea how long the actual seizure was because he was having it before I even looked at him but from the time I noticed it until it stopped was about 4 min. and after he came out of it his o2 levels came back up pretty quickly and I think it helped that he was already on o2.

Monday was pretty uneventful. Mike stayed at the hospital with Seth and I stayed home with the girls and got the house in some order. Tuesday the girls went over to Lisa's and she watched them all day for us! THANKS SO MUCH!!! They had taken him off o2 Tuesday morning and during his nap he kept going down too low like 86 and thats when the doctor came in and put him back on o2 and said that he needs to stay another night. Mike stayed again with Seth another night and finally on Wednesday we were able to bring our boy home as long as we got him into the doc Thursday or Friday. We have to give him breathing treatments every 4 hours even through the night for the next 30 days and then we got a steroid (Pulmicort) and he gets that twice a day for 16 days and then once a day for the next three months. We went into our pediatrician Thursday and got a referral for a pulmonologist for Seth and we see him April 11, he has just been having too many lung issues to not see one. We also have another appointment with our gastro doc on April 20th and sometime in April we have to get another swallow study done.

Monday April 4th we take him to get fitted for his wheelchair so he should be getting one soon and we got in with Foundation for the Blind and have a meeting with them in the next few weeks. I am just waiting for them to schedule a home visit. I have heard great things about the guy that is coming to the house to see him.

If you think of it pray that we can stay out of the hospital with Seth he is still retracting a little and we are still right on track with his treatments so we would just really like to stay out of the hospital if we can.

Here are some pictures from the hospital stay but they are not the best quality because they were taken with my phone and not my actual camera but it was have to work :)

Sunday Morning having some down time.

Hanging with Daddy

Playing in a chair with his favorite piano

He decided he no longer needed his o2 on and took matters into his own hands.