Weekend Update

As you can see, Nathan is gaining weight. Which is a great thing. But they still do not know the cause of his low weight. We talked to GI and they stated that all test have come back fine, and that the probe test came back negative, which means his reflux is gone. So now he is off all meds!!!! Which makes us very happy. GI stated that because all their test came back neg. that means his issue is not gastro related. He REALLY believes that it has to deal with his fast breathing. When they listen to him, his rate is 60 beats a minute, which is SUPER fast. That rate is for someone who has been running on a treadmill. So they believe that he burns most of his calories to breath. So now they are leaning to the pulmonary end. We will see them Monday.

They decided against doing the MRI this weekend, because he would have to be sedated and because of his O2 levels, they are not comfortable doing it. Today the Dr. came in and said his MRI is now scheduled for Friday. SO I asked her "Does that mean we will be here till at least Friday?" To which she said, "Yes" (Great!!!! He gets to be here for another week)

They changed his feeding schedule again. He is on the machine for 7 hours then off an hour, and repeat. So he will get 3 hours of a break throughout the day. And the rate is at 40ml/hr. So far he has tolerated it well. But he does not really eat anything else, cause his belly is always full. This is helping play catch up. It also looks like we will continue this routine when we come home. Which means we cannot take him anywhere, since he will always be attached to the machine. I really hope it will not last long. Cause he can't see his GGma if I can't take him over there.

We are so frustrated that all this is happening, yet we would not change a minute of it. Having Nathan in our lives is such a blessing. And even though it has been SO difficult on him, he keeps the greatest attitude. But now he is afraid of people in a white coat. Anytime a Dr. comes in he freaks out. I hope this won't last forever.

I think that is about it for now. I will keep everyone updated as best as I can. Thanks to everyone who has been helping us out, and to everyone to has kept us in your thoughts and prayers.

Ode to Motherhood

A friend of mine at work sent me this beautiful poem. I even teared up reading it. I think it is just perfect, and I had to share with all. Thanks so much Carol, I love it.

Ode to Motherhood


They say the child chooses

the parent before they

are conceived



God gave me lists

of mothers names

and pictures of them too.



I looked and looked

they all looked the same

and then I saw you.



Who is this woman?

I asked the Lord

She looks quite nice to me.

You have chosen well my child

And He spoke these words to me.



She is kind and gentle

and very wise

and she will hold you

close to her

when you cry.



Her eyes will shine

when you take your first step

and smile at your delight



She will show her pride

when you succeed

and pick you up

when you fail.



She will work hard

to give you the best she can

and rock you to sleep with weary time worn hands.



She will shelter you

on stormy days

and dry your fears away.

She will bask with you

in sunshine on sunny summer days.



And when you are grown

as someday you will be

She will still be there

to comfort thee.



I choose her,

I told the Lord

For none like her

I've seen before



And the day came

when I was born

I had chosen well

of this I am sure



I picked you

above the rest

and because I did

My Life is blessed

A BIG Thank You!!!

Before I forget, I want to send a HUGE thank you to Sarah. She is Nathan's Dietitian at Children's Hospital. Anytime she sees Nathan she tries to bring in a can or two of formula for him. This helps us SO much, since I can only get his formula online and it is $30 a can. (And the can only lasts a few days) Well I emailed her yesterday to let her know Nathan was back in the hospital, and that I needed a little information from her. She replied right back, to say she was sorry to hear that, and gave me a answer to my question. Anywho, when I got up to the hospital Kevin said a lady came up to Nathan's room on Sarah's behalf, and brought Nathan 11 cans of formula for when we go home. WHAT?!?!!? I was in shock. And of course shed a few happy tears. The lady said someone donated the formula and told Sarah to give them out how she saw fit. Well she said right away, I know who to give these too. She picked Nathan. She didn't have to, but she did. We are SO grateful for her, and to everyone who is here for us.
SO....

Thank you, Thank you, Thank you, Sarah!!!!

Quick Update

03/03/09

Last night I got up to the hospital around 5:45pm. Nathan was so happy to see me. Kevin left for a little while, to get a change of scenery. Nathan was so tired he laid down for a bit. They did change his nasal tube to the mask, because the nasal tube was not working too well. He really hated the mask. But he did sleep through most of the night. However every time he would turn the machine would go off, because the mask would fall down. So about every 30 minutes, I was up trying to fix it.

03/04/09

Kevin said they took out the lead thing that was monitoring his reflux around 1:15pm. He hated it coming out, but felt better once it was out. The doctor said that they are going to keep him until they figure out what is going on. They are also starting him on 24hr feeding. He will be getting 45ml/hr for 24 hrs. And if he is hungry he can have his jar food. Looks like he will be in for another week. GREAT!!!!! Just what we all need. This poor little boy has gone through hell and back, and it's still not over. Sorry to keep this short. I am getting ready to head to the hospital. I will keep everyone update as best as I can.

In the Hospital Again!

Yesterday Nathan had his surgery to change his tube to the mic-key button, and to take more biopsies to compare with the ones they took in December. He did great!!!! I went with him to the OR so I can be there for him until he fell asleep. When we got in El-baba was already in his scrubs getting ready for Nathan. I laid Nathan on the table and they put the mask over him to put him to sleep. He fought that tooth and nail. He screamed and cried, but was out in seconds. After he was asleep I was escorted back to the room. Then Kevin and I went to the waiting room. About 45 min later El-baba came out and said it went VERY well, and we can see him soon. About 30 minutes after that we were taken back to a room to await Naters. They carried him in and handed him to me. Oh, it was SO good to have him back in my arms. He looked good. They said he would be here for a bit, then we can go home. Well that turned into hours. Nathan could not keep his oxygen levels up. They went back and forth on whether to keep him or send him home. They went ahead and had an x-ray done just to make sure it was clear. If it was then they were gonna send him home. The x-ray came back clear, but to be on the safe side they finally decided at about 9:00pm to admit him. He was holding his oxygen at about 93-94% which I believe is his normal, but they wanted to monitor it. So we went to the observation unit (3rd floor) I really did not like it. It was SO loud. It's just a big room with curtains around each bed. Kevin stayed with him because I had to work today. (My first time ever overnight without him, it killed me) Before I left I gave lil man a kiss and his poor eyes were just beat red, he was so exhausted.

Well we thought they were releasing him today, but now they are not. They don't like how is levels keep dropping a lot. They did another stomach ultrasound, and have decided that maybe the breathing has to do with the low weight gain. They think he is using too much of his energy to breath. SO they are putting a tube or scope thing down his nose to check his lungs. It has to stay in for 20 hours. So needless to say he is staying at least another day, if not longer. I asked Kevin if they are getting him an actual room and he said yes, but there are 4 other kids who are ahead of him. They have nothing available at the moment.

OMG!!!! How much more can he take???? He is ONLY 9 months, and should not have to go through this stuff. I don't understand. WHY????? And it is killing me that I am not there for him. Yeah, I know Kevin is there, but I want to be there. At least Kevin is on vacation this week. So after I get off, I am heading home to pickup a few items, and then heading back to our second home: Lovely Children's Hospital. I will keep everyone updated.

Nathan's favorite show is SpongeBob Square Pants

Nathan has another new Favorite show. He still loves Diego, but is now in love with Sponge bob square pants. They even have all day marathons on the weekends!!

He also enjoys:

And:

But I really think daddy loves the backyardigans more. Daddy's favorite is:

9 Months

Happy 9 month birthday sweetheart!!!!

Nathan is doing fairly well. Still having his weight issue, but I think it will get better soon. He has his surgery tomorrow, to change his tube to the mic-key button. This should be so much more comfy for him.

What can I say about the last month? We are truly blessed having Nathan in our lives. He makes everyday worth living. I can't imagine being away from him, even for 1 night.

Nathan tried, and learned new things this past month. He tried a Ritz cracker, Nilla wafers, bread roll and a real banana and just loved them. He is SO hooked on those wafers. He knows what the box is, and he will tell you, when he wants one. And don't you dare take away his bread roll. He gets very angry when you do. It is so cute. He also tried Gerber, banana plum grape, and oatmeal w/banana & applesauce. He really likes these too.

His 4th and 5th tooth emerged. They are on the top of his mouth. He looks so adorable with the 3 on the lower, and the 2 on top. He is really growing up.

He is getting stronger, he can bounce like crazy in his jumperoo, and we even got him to hold himself up for a minute or two in the crawl position. He didn't like it, cause he didn't know what to do, but he still held himself up. He also got his first boo-boo. I am sure there will be many more, once he starts to become mobile.

He still loves Diego, but now he loves Spongebob Square Pants, Fairly Oddparents, and the Backyardigans. Even though I think daddy likes the Backyardigans more.~Lol

Still hate being a working mom, but we have to do what is best for all of us. I still rush home everyday so I can spend as much time as I can with him. He goes to bed anywhere between 6:45-8pm. I try to keep him up till at least 8pm, but you can tell when he is ready for bed.

I can't believe that Nathan will be 1 year old in 3 months. 3 MONTHS ~ the time is just flying by. I have already started planning his party a little bit. It will be at our house on June 6th. I am thinking it will start around noon. But I will be sending out invites when the date gets closer. The theme will be Diego. I'm excited too, cause I have a friend that is going to make a Diego cake. She does great work. I can't wait to see what it will look like.