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.

Welcome To Holland.

Welcome To Holland by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip -to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” ” Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around… and you begin to notice that Holland has windmills… and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very, very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely hings …about Holland.

Lately...

So the past few weeks we have been fighting colds and croup going around. The girls got croup but Seth's cough has not turned into that and I am praying it stays that way.

This past month we have had a few doctors appointments. 

We had a ear appointment where they checked to see if the tubes were still in place and they also cleaned out one of his ears because he has had many ear infections in that ear. They looks at the results from his last ABR and he confirmed that his hearing is perfect and that it should not go away. He will see us back in 4 months. This was a huge thing for me because he has been messing with his ears a lot and I was just worried that something was going on but it is just something that he does.

We had an appointment with CRS at St. Joseph where they did a full body pediatric exam on him to see what services he qualifies for. We were there for a really long time. The doc wanted all of Seth's information from pregnancy to birth to NICU to now. He qualifies for a handicap sign for the car he will have an orthopedic doc here and then all of his other doctors are part of CRS so we will see them all at St Joseph when we need to. They got me a prescription for pediasure which is a huge thing because it was starting to cost a lot of money and since that is the only thing he eats consistently it was getting quite expensive. He will also need to go to a wheelchair clinic and get fitted for one. I still have to call to schedule that one. March 4th he goes back to CRS for an ERG (eternal retinal gram) to check his eyes because of the seizure meds he is on.

We also met with his neurologist because his seizures are still happening quite often. Dr Bernes said to stay on the 4 meds that he is already on because the sabril is helping but we also got the okay to give him an emergency drug if he is having a lot of them during the day. We actually have had to do this about 5 times so far because he maybe had 30 within an hour. 

PT has mentioned getting him a SPIO suit so we got the script from his pediatrician and got it into the ortho and we are just waiting on it. Also we are looking at getting him a stander which could take a while to get because she has to write a letter to the state on why he needs it. I get so frustrated with special needs equipment because of how expensive it is. I would love to get him this rocker that he would fall in LOVE with but it is about 2,000 dollars and we just do not have that kind of money or even special needs beds are anywhere from 1,000-7,000 dollars and thats just for him to sleep on and be safe. You would think for special needs kids they would know that you life is full of expenses that they would help in that area or the state would just make things easier but they don't. 

I have had a hard few days with Seth and just trying to comprehend what our future will look like and there is really no way to do this but if I really think about it we have a long road ahead of us and lots of laughter, tears, and PRAYERS!

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!