Hate it...

Not a good night...It has been a really really hard night and then to have my little boy have a big enough seizure that he starts bleeding from his mouth and I can not figure out where the blood is coming from. Once he calms down I wipe him and find he has bitten his cheek. I HATE CMV!!!! I wish there was a cure for this horrible virus. I hate that he has to suffer for no reason. I hate worrying that I might one day wake up and he be gone. This virus has turned my world upside down to the point where sometimes I do not even know which way is up. It is hard and it is a battle that I have to fight every day but I just have to trust in Gods promises that there is good and good will come out of this. But I am not going to lie when I say this is hard every day it is hard, some not as hard as others but it is hard.

Tonight there were a lot of things that I wish I could go back and change but this is what God has in store for me and I have to try and keep my head up and keep moving.

HERE SHE IS...

Ember Noelle Marinello

We went into the hospital Tuesday night at 9:00pm for an induction mainly because we wanted to make sure we would make it to the hospital. I have such irregular contractions and once my body is ready to go it just goes and we really learned that this time. From 9pm-2am I was just on antibiotics because I was group B positive and they would not start the pit until I had two full doses of penicillin and then I would continue to get It every 3 hours until delivery. Around 2am they started the pit and The nurse just checked me once around 5am and I still had not progressed at all I was still 4cm. We got a new nurse at 6am and she was amazing! She came in at 7 and checked me and again I was still just 4cm and within 30 minutes my doctor came in and decided to break my water hoping that would speed things along. At about 8:30 when I was still just a 4 I decided to just go ahead and get the epidural and save myself the pain and what I thought was going to be a long labor. At about 10:03am the baby started showing signs of distress and heart rate going in the low 70 and 80's so I was moved back and forth from side to side and then checked and only a 5! At this point I was frustrated and a little worried because we had cord issues with Sydney and it was so similar to Sydney's birth. They gave me some oxygen and had me keep switching sides to get her heart rate up. The nurse left the room and all of a sudden I got so tired and wanted to sleep but Mike wanted to talk about something and I honestly do not remember what it was we were talking about but I remember mike standing up and I asked him to hand me the computer when all of a sudden I needed to push. I told him to go and get the nurse and in she came. She checked me at 10:31am and I was 10cm and the baby was ready to come out. She ran out and called Dr Seymann and said that he should be here in 10 minutes. I wasn't sure I was going to be able to wait...the epidural was so good in that I could not feel pain could move my feet but completely felt the urge to push. I was trying so hard not to and the nurse did not want to deliver her either so she made me keep my legs closed which I though was the funniest thing. When Dr. seymann got in the room they could not find a heart beat at all so I was moved back on my side but still nothing so he put my legs up and said push with the next contraction. I pushed once and they made me stop. Her cord was around her neck and we were told if this happens then Mike couldn't cut the cord but as soon as Dr Seymann got it off she started crying and I didn't even have to push again he just pulled her out. Because she was crying and looking good Mike was able to cut the cord.

Ember Noelle Marinello

12-1-10 @ 10:58am

7 pounds 13 ounces

20.5 inches

She is completely perfect and absolutely gorgeous and by far my smallest baby. I actually need to have newborn diapers and clothes! She passed her hearing test and has no enlarged liver or spleen so they decided that she was in the clear and no need to test for cCMV which is fine with me for right now. If something comes up and I get worried her pediatrician said he would test her. We had to stay an extra day because she was jaundice and majority of the reason was because of my blood type and hers being different. 

We got to come home Dec 3rd at night as long as the following morning I would take her in to get her billi levels checked again and of course we said we would. She had a great night slept amazing and also slept a little too well on Saturday. I took her to get her blood work done and then just hung out at home. I had to wake her to eat and she would go right back to sleep. About 4:30pm we got a call from the pediatrician that we needed to take her back to the hospital NICU and get her under the lights because her levels were at a 15. So I was a wreck I did not want to take her back into the hospital and deal with the NICU again but in my head it is just jaundice she will be fine. I got to the hospital around 6:30pm and they got her all hooked up to the lights and within 15 minutes all hell broke lose and she was having breathing issues. They gave her about 10 minutes to see if she would come out of it but she didn't so they decided to get her on some oxygen-antibiotics-check her urine-and check for cCMV or any other infections. By this time dear Rachel made her way to the hospital and hung out for a while with me. She got to take a tour of the NICU because it is where she will be in a few weeks and we just talked and also talked a lot to the doctors. Ember ended up being on oxygen until Monday morning and I thought I was going to be able to take her home Tuesday but they wanted her to remain off oxygen for at least 48 hours before letting her leave and I tried to fight it but gave in a bit my tongue cause there was no way they were going to release her. 

Under the lights with oxygen

 Little Peanut

Where they blew out her vein

After she got off oxygen and able to be held

Wednesday morning a week after she was born I was finally able to take her home for good. I did not get out of the hospital until 1pm and she was able to get her picture taken with Santa before we left. (I guess every Dec they have a santa come to the NICU and take pictures with all the babies) They turned out really cute. 

 The scanner did not do a good job the actual picture is so much better...and this guy really looked like Santa he was amazing and super nice!

Coming HOME!

It was so nice to be able to bring her home and start to enjoy our family of 5. We went into the doctor that friday the 10th and just had a check up and then wanted to see her again when she is two weeks. So we went back to the doctor on the 16th and she was still YELLOW so he had us go on Friday to get her blood work done again. (I took all 3 kids with me for the first time and that alone is another blog post) Her levels came back at 11.9 so Dr. Jones told me to giver her as much formula as I could because the breast milk was actually holding in the jaundice and so we did and by Monday she no longer looked yellow and he said I do not need to get her blood checked again unless she starts to look yellow again.

Things have been quite crazy since she was born but Sydney is in love with her and Seth he is just a happy boy so I can't complain :) We had a great Christmas Party for Mike's work at the zoo and my parents kept the two little ones and we had some fun with Sydney. Tomorrow is Christmas Eve and I do not even feel ready for Christmas but its coming FAST! 

Seth UPDATE!

Here is an update on Seth if you want to read it!

http://gloriouslywoven.blogspot.com/2010/12/seth-update-and-haircut.html

Seth update and HAIRCUT!

About a month ago Seth got another ear infection and it was a bad one so he had to get on drops and antibiotics. Well of course a week later it went to the other ear. He has not had good luck with his ears and I totally thought that the tubes in the ears would help. His doctor explained to me that it does help a lot especially in the area of pain and drainage. The problem we have is Seth really does not complain about things if he is in pain. He probably had the ear infection well over a week before I took him in because he was still snotty and I could not figure out why.

The week of the November 16th Seth had a few appointments that were pretty important. He had a swallow study done, a urologist appointment, and he also saw a gastro doc.

Swallow Study

So the swallow study was first and of course it really was not the news that I wanted to hear. They gave him a different levels of thickness and watched on the x-ray how he swallows. The barium that they give him shows up black on the screen so it was pretty cool to watch. Anyways so what happens is when he has very thin stuff (like medicine) he does a really good job pushing it back with his tongue cause there is not much work involved but he does not have all the muscle control to move and swallow all at the same time so it actually pools in the back of his throat right where the flap closes off the lungs when you go and swallow so you do not aspirate. Well since it pools right there he tries and swallows and then the flap closes so some splashes into his lungs. Not all of it goes in there so it is not called full penetration but rather a "splash" (This can be the reason he gets so many respiratory infections and also the problem with his ear infections) The thicker foods he was not able to work his tongue very well so it took him a long time to try and get it down his throat but he did a lot better a swallowing it and none went into his lungs. So that was a good thing but the problem we are having is that there is not much we can do in this area, basically we wait and let him develop and in the meantime we have to start thickening his bottle. We have already had one bad time when we know for a fact that he aspirated because he was not breathing and trying to cough and couldn't but finally started to cough and he coughed for about 20 minutes until he threw-up whatever the medicine was and a lot of mucus. That kind of stuff scares me and it is the worst with medicine and that is the most important thing for him right now. The worst medicine we have to give him is his sabril and that is simply because it is 15ml morning and night and it literally takes us 15-20 minutes to give it to him and he at least chokes 2 times.

Urologist

I took him for a 6 week check up after his surgery and they did an ultrasound and then met with us after to check his incision and talk to us about the results. The right side (grade 4) was completely back to normal and completely perfect. The left side (grade 5) was still swollen and not quite back to normal yet and he said this could take a while so we have to keep him on his antibiotics and come back in 3 months for another ultrasound. He said that after a surgery like that he expects swelling and he used an example of if you blow up a balloon and release the air it take a while for the balloon to go back to its original size, he said that is the same thing with Seth's kidney. He also said with how bad it reflux was it might take a while. He said they only grade kidney reflux to a 5 if he could really pick what Seth's was he said it would have been a 12. I asked if there was any kidney damage and he said none on the right side but the left side could have quite a bit of scaring but everything should be fine.

Gastro

We had a gastro appt the following day and we got thickening gel for his bottles so that he does not aspirate into his lungs and also they mentioned a feeding tube which I really do not want. I have been trying really hard to avoid that and since he is taking in some solids I am praying we can hold off in that area. He will go back in two months and then we will discuss the feeding tube again depending on his weight and what he is actually getting calorie wise. The doc has us increasing his formula and pediasure intake to 8 ounces every feeding to try and get him up to 1000 calories a day but it is really hard to force him to eat that many ounces a feeding. He normally can take 7 but sometimes he goes as little as 4 so it is a tough thing to do. 

We also were able to go and get his AFO's which can be a pain to put on. He is suppose to wear them all the time except for sleeping. I have been slacking in the area of working him up to all day but we are getting there and he seems to not mind them at all.

He also got a hair cut finally and let me just tell you it is so adorable!

Random Pictures...

Back on September 2 it was Michael's birthday and we took him to his favorite place...Joe's Crab Shack. If anyone knows me they know that I HATE fish of any kind and pretty much anything from the sea. But I can handle this place because they have chicken that I will eat :) Here are a few pictures of our fun night!

Sydney got a lemonade that they give with pop rocks and you put them in your drink, she thought it was the best thing ever!

Michael being a goof with the monk-monk and of course his bib.

 She actually looks very innocent here....so not the case :)

She thought it was so funny to hear them pop

Way too excited!

Michael with his entire pot of food!

 The cutest little muffin in the world!

Oh his "Hippo" teeth as we call them :) He is so precious I can't stand it!

Sydney Turns 4!

On November 12, 2006 my precious little girl was born and now she is 4 years old! I can not believe that I have a 4 year old. She can make me laugh, cry, want to pull my hair out, scream, and kiss her all at once. She something else but man do we love her with everything we have!

On her birthday I took Seth to my moms around 11 so that I could just have some one on one time with my birthday girl. We headed out to the Phoenix Children's Museum where daddy met up with us when he was done with all of his work appointments. She loved the place. She has been there one time before but she was only 2 so this time she actually could do things and had a great time. Her favorite part was the grocery store and the kitchen. She was able to walk around and put groceries into her cart and then check out and pay for them and she also got to make us food. She also got to play with the race cars, make us fake ice-cream cones, run through the noodle forest, and play with some sand art table thing :) She would have stayed all day long if we did have to go get a late lunch. She had so much fun and I think I really need to take her back when it is not a Friday because there were at least 3 different schools there doing field trips.

We then let her pick where she wanted to eat lunch and of course she wanted to go to the WONDERFUL Red Robin! I love that place and as so does she. She loves the freckled lemonade and especially the strawberries inside and of course she gets a balloon when we eat there so thats enough for her :)

We then headed over to build a bear and let her build her own something and we also had a 10 dollar off coupon so it worked out pretty good and she didnt want any clothes so that was even better :) She picked out the girl reindeer and the heart lights up when you press the foot. Mike and I recorded our voice and stuck it in there as well :)

Then off to get her some cotton candy and man was she in heaven. She loves this stuff but yet will never eat it all. Maybe 6 bites and then she is done but it was so funny watching her eat it all by herself. We have only gotten her cotton candy from Disneyland and I HAVE to eat majority of it so I normally just pull pieces off for her but this time she got the whole thing to her self.

I would have to say that she had a great birthday! I have some other pictures from my camera not my phone that for some reason were not uploaded in the computer of her opening her birthday gifts. She got some books, a movie, and of course the white walking dog that she has wanted for her birthday for the past 2 months. We let her open all her gifts and when she had nothing else she was so sad that she did not have the one thing she wanted...then out came daddy with the LAST gift and she could not contain herself she was so excited. I wish I would have gotten it on video she was so cute. 

Sydney Nevaeh Marinello

November 12, 2006 @ 5:59pm

4 crazy years later!

Halloween & Baby Connery

First I am going to start with Halloween. Sydney had her school Halloween party the Friday before Halloween and this was actually the ONLY day she went to school the whole month of Oct. We had a crazy month. Seth had surgery Oct 4th so that week she did not make it to school. The following week she got the stomach flu and then the following week she got a strep rash so we kept her home for one day which was Tuesday so Thursday I go and take her to school and my car battery is DEAD so once again no school for her cause I could not get anywhere. So anyways she went for the last day of the month and then we decided that we are going to wait until we move and find a school close by that will hopefully not interrupt with Seth's therapy. She wanted to be a unicorn for Halloween this year and I tried everything to get her to change it but can I just say that my daughter is incredibly stubborn. Here are a few pictures from her school party:

On Sunday Halloween we were suppose to go over to the MacCallums and have some Halloween fun like we did last year but Seth decided he would wake up with a cold and it was pretty nasty and I did not want to get Lisa sick or the kids sick so close to when baby Connery was due. So we just stayed home and went trick or treating in the neighborhood and let me just say our neighborhood was DEAD. Here are a few pictures before we headed out and she was only out for 30 minutes and was ready to come home. She kept telling us that her basket was full even though it barely had candy in it. I tried to get her to stay out longer but she really wanted to come home so that is exactly what we did. 

So Lisa finally had her BABY! I got to be there which was an amazing experience and of course Connery is a gorgeous baby GIRL! Connery Mae MacCallum was born on November 2nd at 4:38pm and she weighed 8 pounds 6 ounces. She has the most adorable head of hair!

For some reason I did not get the scale at the right amount I am not sure what happened.

What a doll!

Love the hair!

Thanks so much for Lisa for having me there and what a beautiful perfect little girl she is!

Oh Goodness!

Okay so I am a little behind. My next few posts are going to be catch up.

-Halloween
-Baby Connery MacCallum
-Seth and his leg braces
-Sydney Turns 4
-Double ear infections for Seth
-37 week appointment for me
-Seth and his swallow study
-Seth and his GI appointment

There is a lot and I will start on it this morning :)

Service Dog.

After Seth's surgery he started having a lot of seizures and a ton more spasms. We have been working with the neurologist and changing up his meds to figure out something that will work. Last Monday we got into Dr. Bernes and we decided to put him on the Vigabatrin (Sabril). We spent the next two days filling out the paper work and faxing it back to his office so that we could get the meds shipped to our house. Thursday S.H.A.R.E (Support, Help And Resources for Epilepsy) called us and verified some information and then told us we should have it Friday by 4:30pm. We got it pretty early on Friday and it came with a lot of information especially how to make it every day. For the first 5 days he gets 5ml-the second week he gets 10ml-and the third week he gets 15ml. We just started giving him 10 ml and if you know Seth at all he is not a fan of taking anything other than his bottle so getting 10ml down him takes about 15 minutes. I can not imagine what it is going to take to get him to swallow 15ml. That should be fun! We have noticed some changes. There are days when he has as little as 2 spasms and then there are days when we notice 10 or more. As soon as he no longer have any we are to call Dr Bernes and keep seth on the dose that stopped them. We will do it for 6 months and then take him off. If he never stops having the spasms then after 3 months we HAVE to take him off of it according to (SHARE)

So after all of his seizures I spent a lot of time online looking a seizure alarm that would beep if he started having one. The problem I was having was A. they are really expensive and insurance is hard to get it covered and B. The person using the alarm needs to be at least 56 pounds. Seth has been 21 pounds since he was 9 months old and if he continues on this pattern it will take him a really LONG time to get to 56 pounds. Sydney is a big girl and she is just now 40 pounds so I am thinking it will be a while before he gets to that weight. Then I heard about the service dogs. They have dogs for people who just need help in everyday life, Guide dogs, dogs for the deaf, Autism dogs, and seizure alert dogs. So I really started looking into this. A lot of sites will not give dogs until you are a certain age. (for example to get an autism dog you need to be at least 4 and for a service dog you need to be 18 and for a guide dog at least 14) and each site has slightly different ages for each of their dogs. Well I finally found a site that does not have an age limit on it. They believe that the younger the better. Now it also is really expensive to get a service dog. I am talking about 22,000-26,000 dollars depending on which company. The company I found is 22,000 dollars but they only require you to raise 13,000 of it and they cover the rest. So today I printed out the application and I will send it in and start thinking of ways to raise this kind of money so that we can get him a dog that could help us in so many ways and also a dog that will be his and his best companion. 

This week and next we have quite a few appointments. Seth has to have a swallow study and a sweat test done, along with getting his feet/legs casted for braces, meeting with his gastro because last week at his 15month check up he went from the 50% to the 10% in weight so we will be talking about his nutrition and feeding tubes which is something that I do NOT want, also an ultrasound and follow up appointment from his surgery to make sure that everything healed okay and that the kidney reflux is resolved. 

If you have any fund raising ideas please comment and let me know cause I am totally new in this area!

UPDATES!!

Okay so a lot has been going on since my last post. Seth on October 4th had his surgery...if you want to read about it click here.

-Seth did great during his surgery the recovery was the hard part! He was in so much pain and the medicine for me was the worst part. He hates taking medicine and he needed to eat to be able to take his tylenol with codeine and of course he is stubborn so he went over 24 hours without eating. He had so many bladder spasms that made his whole body convulse that also at the same time caused so much pain. It is so hard to watch your little baby in pain especially when there is NOTHING you can do for them. The first few nights home were horrible and no sleep was bad but again we got through it and by Monday he started acting like his normal self.

-Saturday the 9th Lisa threw a baby shower for my and our sweet new baby girl and even though there where not a lot of people there it was so great and fun! I loved everything about it...especially that everything was green and black :) Thank you so much Lisa for throwing such a fun and beautiful shower.

-Wednesday morning and when I say morning I mean 1am Sydney comes into our room throwing up. She woke up and threw up in her bed and then down the hallway trying to come get us. I spent the next few hours with her out in the living room having her vomit in a bucket. She has not had the stomach flu since she was 1 so she had no idea what was going on and really did not enjoy the "throwing up" part...not that anyone does but she just did not understand what was going on and why she kept doing it. She finally went back to sleep around 4 am and slept till about 6 am when the vomiting started again. Seth then woke up at about 7 am and my plan was to keep the two kiddos apart until I fed Seth his bottle and within 10 minutes he threw it all up so I had both kids with the flu which in the end I would rather that then different days. Sydney was sick till 11:30 and then she was totally fine and over it. She complained a few times that her tummy hurt but never threw up again. Seth kept going until Thursday morning. The rest of Thursday he was not quite himself just tired and not really wanting to eat but not throwing up until 7:30pm after his last feeding before bed.

-Friday...can I just say I hated this day!!! Around 2:50am I heard Seth crying in his room so I woke up and got him a bottle thinking he would be hungry because he did not eat much the two days before because he had the flu. So I went and made him a bottle and got him out of bed and went back into our room. I sat down on the bed and went to put the bottle in him mouth when he started having a seizure. It was so horrible holding him while he was having one and yet there is nothing that you can do for him. Mike was awake and all we could do was just watch him. I can not describe those two minutes to you except that it was not his normal spasms and the cry that came out of his mouth was just so sad and sounded like he couldn't catch his breath. So after he came out of it I laid him down on the bed and he started having tons of spasms in a row so I threw on some clothes and heading to Cardons. I got there about 3:45 am and not many people where there so after we got checked in we got into a room right away. They came in a started an IV and took some blood and then started all of the questions. It is always a good thing when you get a nurse that knows what CMV is because that means I have to explain less. Around 5:30 am we got his blood back and his depakote level was at a 7. The low level should be 50 so he was really low. This most likely was because of the stomach flu and not being able to keep anything down. We waiting for about 2 more hours until the pharmacy got him his meds and then it took an hour for it to get released through his IV. Finally around 9 am we were down and we were able to go home. He has only had one seizure since then and it was maybe 40 seconds but has had a TON of spasms.

-Monday we got a call from his neurologist and we told him everything was going on and he thinks that yes part of the reason he could have had a big seizure like that was because of the depakote levels but another reason could be that he is starting to have different kinds of seizures. (about 70% of kids that have a reason for infantile spasms will out grow it around 2-4 years old but then can develop another type of seizure disorder) Dr. Bernes decided to have us give him the depakote 3 times a day instead of twice and give it about a week to see if it helps...so far he is still having a lot of spasms so I think on Monday we will be making another phone call to him and will have to go in for an appointment. We did get some emergency medicine so that if he has another seizure lasting longer than 2 minutes or spasms that we can not control we give him this pill that will dissolve on his tongue. I am glad that we got this medicine because that means I do not have to go into the hospital every time unless it is a new type of seizure that he is having. Can I just say that out of everything that he has I think the seizures are the scariest thing for me. I am not sure I will ever get use to it either. It is so hard to watch and not be able to do a single thing for my little boy.

-This week we also went and saw a pediatric orthopedic surgeon who took a look at his legs and hip and then sent out down the street to another office to get some x-rays and then head back to the office to have the doctor look at the films. I think for the first time in a LONG time we actually got good results. Seth has nothing wrong with his hips at all and for the doctor his legs are tight but it is a good thing that we can stretch them. So we got a script for low profile braces on his feet so that we can actually get him some support when he starts bearing some weight on his feet. He is really tight in his hamstrings which is making it really hard for him to actually sit on his butt. So he actually does not sit up straight because the hamstrings are also connected to his back so it makes him curve his back and therefore leans forward way too far. But I was so glad to hear that he has nothing wrong with his hips. The doctor also said that he sees no physical reason why Seth wont walk. He might need some help to do it but physically he should be able to walk. The problem will be mentally or neurological.

-Thursday Seth decided to sleep in until 8am and therefore did not have a nap before his appointments started. He had his developmental specialist come for a make-up and his scheduled O.T. appointment at 11:00am and then at 1:30pm we had his feeding specialist come. He did two hours of feeding without a nap the whole day and he did so good. He played in cheerios and apple juice and actually got it in his mouth and did not gag. He actually was licking it off his hands so that is a huge thing for him. We are not sure if he will always be the type that has to feed himself or if he will start letting us put a spoon in his mouth and chow down. Either way as long as he eats food I really do not care how he does it. That evening my mom watched the kids while Mike, my dad, and I went and looked at a few houses. My mom kept the kids and then after we went to dinner. It was fun to just go to dinner with Mike and my dad and I really like mexican food so Rubios worked for me even though I really wanted Olive Garden.

-Thursday night we had another seizure around 3am and I HATE them. After this one I have been looking online for seizure monitors that will alarm us if he is having one and or if he falls out of bed while having one. I have found a few but they are quite pricey so I am going to ask his neurologist for a script for one and see what insurance will cover first. But out of everything that he is struggling with or will struggle with I think seizures scare me the most. I know that I need to have complete faith in God and that no matter what happens to my little boy that it was all in God's plan and it is good...but when you talk about children and especially your child it is really hard to keep that perspective. SUDEP scares me and it is something that I have been worrying about since Seth had a different kind of seizure. The risks of SUDEP is higher in kids that have symptomatic epilepsy. It you think about it just pray that I do not worry too much about this and that I keep my faith and trust in God and that everything will work out for the good.

-I had a doctors appointment yesterday (33 weeks 3 days) and at the appointment the baby was head down which is a good thing but doctor says that I am not measuring big so the baby has a chance to move around but hopefully will stay put! Everything else looks good and my weight gain was good as well so I was feeling pretty good after that appointment. I also spent the afternoon at my moms house and Sydney and I went out for lunch while Seth stayed with my mom. We went to Red Robin and she LOVES that place...I think just because she can get a balloon. 

-Today we have just been hanging around the house and around 3 my dads works is having a family picnic so we will head to his work around 2pm. It should be a lot of fun especially for Sydney. They are going to have big slides, bounce houses, cake walks, dunk tanks, food, cotton candy, snow cones, petting zoo and so much more. I am not sure how Seth will do but we will try it anyways :)

Surgery!!!

So Monday morning we headed out at 6:30am to get to Phoenix Children's Hospital for Seth's surgery. We waited for about 20 minutes until they called us back to prep. We got Seth checked out and put him in his little hospital gown which by the way purple is not quite boyish but he still looked cute in it. We had to wait in the room for about an hour and all Seth wanted to do was eat because the last time he ate was 7:30pm on Sunday night and I tried to wake him up at 1am to get some food in him but he just really didn't want it then so needless to say at 8:45am he really wanted food. I finally got him to take a little nap and I think about 9:15am they told us he was ready to go. We walked him to the surgery room where the nurse took him from us. He was so happy at that moment that I wasn't too worried. It was the waiting that was hard! Mike and I went down and got some breakfast and then just hung out in the waiting room. The Doctor came and got us at 1:15 and told us he was out and in recovery and that everything went great. They did NOT have to put the stint in which is great because that means no other surgery. At 1:40pm we got to go back and see him and he was having some breathing issues which kept us down in recovery a little bit longer. He looked so pale and sad but once he was held he was okay. I think we got to our room around 3pm.

Okay so I understand the PCH is the best hospital and I can not wait until the new building is done because those rooms are ridiculous! First off the kids have to share rooms and once you pull the curtain the room is the size of a closet. If you have a crib in the room it is huge which leaves you with like 3 inches to walk around and you cant see the TV because the crib is in the way. So once Seth finally started to come back into the world he was in a lot of pain especially every time he would pee. So they got him morphine every 2 hours and he could not have the tylenol with codeine until he ate something. They also had him on anti spasm meds because his bladder will spasms because of the surgery and it is really painful. At about 5:00pm Seth got a room mate who was a boy at about 13 years old. Come on...lets put a teenager with a baby who is in pain and crying. I felt so bad for the boy because after 6:30pm Seth was just uncomfortable and in pain and would not eat so this boy had to listen to Seth cry while trying to watch Sponge Bob.

That night (Monday) was rough. I think I maybe got 2-3 hours of sleep. Seth wanted to be held but at the same time didn't want anyone to touch him. At 11:45pm I had to give him his spasm medicine, typically I give him his night time medicine while he is taking a bath because he is so happy in the tub and he wont cry when I put it in his mouth. If I don't do it in the bathtub he likes to hold it in his mouth and when you think he has swallowed it he turns and spits it out or chokes on it cause it has been in his mouth forever. Well Monday night was different he just screamed when you tried to put anything in his mouth and then he would choke on it because it would go down the wrong way or whatever. It was a PAIN and I felt so bad for him I just didn't want to give it to him but knew that he would feel better if I did. Trying to explain to a 15 month old who is in pain that if they take the horrible medicine they will actually feel better it hard to do but even harder to do with Seth. Also at this point Seth still would not eat so he was just getting morphine and couldn't have Tylenol w/codeine and I was going insane because there was nothing that I could do for the poor guy. If anyone knows Seth they know that he is one of the most stubborn kids (Honestly both my kids are horribly stubborn.) and if he does not want to eat he is not going to eat, the night nurse just did not get this and kept telling me that I needed to get him to eat. I just ignored her every time she came in and said I tried but he didn't want it. She kept bringing in fresh bottles every 3 hours and even if I was going to try I would need warm water because Seth WILL not drink a cold bottle so then if I did want to try and feed him I would have to ask for some warm water to get the bottle warm. It was literally a pain. By 5:45am I gave up on trying to get some sleep and that was a good idea because Seth was up at 6 anyways. Around 8:00am the doctor came and made his rounds. Seth at this point still did not eat a thing and the doctor said it was because he was on fluids so he was going to take him off it and in a few hours he should want to eat a few ounces. I also thought that Seth was having a lot of seizures and they were getting worse than they ever have been because his whole body was shaking and not like his typically startle. I was wrong they were not seizures they were actually his bladder having spasms. That made me feel a little bit better but it is still horrible to watch him have the spasms then try and pee and all that comes out is blood. The Doctor also took out his catheder which he said should help with the spasms and he said that if Seth starts eating we could go home. About 4 hours later Seth decided that it was time to eat and he ate about 4 ounces and he did that one other time on Tuesday!

Since the hospital Seth has still not been back to normal. Tuesday-Wednesday-Thursday nights were the hardest. Tuesday I think he was up at 1:30am until about 6 just crying and not comfortable. And he did the same thing Wednesday and Thursday nights. Friday and Saturday night he went to bed at his normal time but woke up at about 2 and didn't want to eat but giving him his meds made him more unhappy so eventually he fell back asleep but he is just not comfortable at night.

I want to thank Lisa and my mom for watching Sydney for us while we went through all of this with Seth. Also Rachel, thanks so much for coming all the way out to PCH and giving us such a wonderful bag of goodies :) It was so needed and it is such a blessing to have people in your life that know what you are going through and care so much to come all that way just to drop off a bag of stuff for my little muffin and for us as well. So thanks again for everyone who helped out so that I could stay with Seth at the hospital!

Sleeping before his surgery...He did so good for not having anything to eat since 7pm the night before.

Hanging out before the surgery in his purple gown.

Getting some snuggle time with Daddy

After his surgery drugged up on morphine

Tuesday morning still not eating anything but acting a little bit better for not sleeping more than 3 hours at a time.

Here is the stud muffin a few days after we got home from the hospital.

He is such a stud muffin and an amazing little boy. He is so strong for only being 16 months old and he has been through so much. He makes my heart melt and I love him so very much!!!