Thursday, April 10, 2008

In my sons' eyes I am a hero
I am strong and wise and I know no fear

But the truth is plain to see

They were sent to rescue me

I see who I wanna be
In my sons' eyes

In my sons' eyes everyone is equal
Darkness turns to light and the
world is at peace
This miracle God gave to me
gives me strength when I am weak
I find reason to believe

In my sons' eyes

It's hangin' on when your heart has had enough
It's giving more when you feel like giving up

I've seen the light
It's in my sons' eyes

-Martina McBride-

I am sitting here seriously crying after reading the lyrics to this song. I love Martina McBride and I wanted to include a special thought at the first of this posting (of course I modified this song as she wrote it for her daughter).

Well, the adjustment stage for Noah has proven to be every bit as difficult as it was for Jonah. Poor Noah is actually a worse eater than Jonah and spits up so frequently. I often think they should have done some swallow studies in the hospital with Noah. He is on two reflux medications as well as the thickening agent in all his bottles and he still manages to spit up 10-15 cc's with several of his feedings. Right now his Sodium Chloride is giving him a lot of problems. We were waiting on the pharmacy to get it filled and the first dose yesterday made him throw up. Last night he cried the entire dosage and REFUSED to eat for nearly 4 hours afterward! Plus he coughed and coughed. His oxygen requirements went up to 3/4 a liter yesterday and we've had to keep him there pretty much since we switched him. Now when we feed him we even up him to 1 liter just so he'll have that extra boost. Yesterday afternoon we gave one more dose of the Sodium Chloride and he coughed for over an hour and again, refused to eat anything for several hours. I talked to two nurses yesterday. Of course, conveniently, his pediatrician wasn't in yesterday. The first nurse said just to watch him and if he started to show respiratory distress or needed even more oxygen then what we gave him to call back. Last night the nurse said it sounded all related to his medication (um, yeah!) but she was worried about the whole oxygen increase. She suggested late at night maybe going to the ER because the urgent care our insurance covers was closed but I told her we'd been monitoring his respiration rate and he was within his range, etc. I was also worried he might be dehydrated but we were able to get in enough ounces for the day to avoid that (minimum of 12). I told her how sick he was as a baby and that if I went to an ER I'd sit for 4 hours and expose him to all kinds of infections and I'd rather monitor him at home and call his doctor first thing in the morning. She said she understood why I wouldn't want him there and seemed ok after I explained that we were watching his respiratory rate, etc. Plus I gave him some extra nebulizer treatments too, just in case.

So I guess we may be spending another several hours at the pediatrician's this morning. Good grief, I think we'll need our own private room shortly. I hate the fact that this office hasn't seen many preemies, especially ones as small as Noah and Jonah. I always check them in at the isolation door and the nurses always ask why and I always have to explain to them they were extremely early and can get sick quickly, etc.,etc. "Oh, just throw a blanket over their carrier......" Hello, that is not enough.

Thank goodness our pediatrician spent his residency in Los Angeles so he has seen cases like Noah and Jonah and he is very, very careful with them. I really like him a lot. I just don't care for some of his nursing staff. Of course, some just gawk at Jonah's shunt and say things like, "Now, will he always need that? What happened? Why did he need the shunt?" I know I shouldn't be so sensitive but I just feel like some of these nurses need to get out a little more and get some broader experience. Plus some people can be so insensitive and make comments like, "Oh that just must be so hard. I just don't know how you do it, I could never do it." Or one of my favorites, "I used to want twins but know I now how hard that would be." It is so funny, I am sure people don't mean to be trite and rude but seriously I just want to say sometimes, "Did you really think that through? Do you really think that benefits me to be reminded of how difficult this is?"

Anyways, off my soap box now. I just had to take a moment and vent.

So Noah is a bit more settled tonight. We didn't give him the Sodium Chloride (it isn't life or death, just an electrolyte replacement so one missed dose won't hurt him) tonight and he is much happier and sleeping better.

I can say life is definitely crazy right now. Between these two kids we have every issue covered in way of preemie life and yeah, I'll admit that often it is really hard and I have to remind myself that I didn't do something wrong in a former life and this is my form of punishment or something. =) Obviously I think that in my most irrational moments, mostly at night when I am exhausted and both boys are crying for one reason or another or both are giving me difficulties with eating and I am waiting for morning/early afternoon for a shift change with Linda (or come Friday my parents) so I can get in a few hours of sleep.

I thought you would love the below photos of Noah and Jonah. Aren't they precious? I also included an adorable photo of Noah. I've had a chance to post so many photos of Jonah that I wanted to put something up of Noah. You would never believe how sick he really is, he smiles and coos and giggles like any normal baby would do.

Looking at these photos you can't help but think, this is what it is all about. As hard as this journey is, as much as I mourn never having the normal birthing experience or even normal infant experience I look at these beautiful angels and I know just what it's all about. Just like the song above, I am reminded of a more eternal perspective.

Keep praying for our babies.

Shane and Michelle


chantel said...

Hi Bless you... Im not surprised that people especially nurses who make such stupid comments annoy you I think I would be the same... Give Noah and Jonah a kiss from me.. Ive been thinking of you both... could you split the sodim up into a smaller dose into more feeds in more milk so maybe just maybe..... !!!! Noah wont realise (even though we know hes probably toooooo clever and he will realise anyway!!)... Take care and speak soon chantel xxx Quess where I am?

Brandon and Wizzy said...

Michelle -

I will try not to offer too many words of meaningless comfort. I just wanted to let you know your boys, and you, continue to be in my prayers.

I remember when I was kid and got sick or had to go through something I didn't like very much, it really felt awful and it felt as if it would never end. I kind of felt that way after Patrick was born, but fortunately God has given me the mind of an adult where I can see my way out of things. I tell you all this because I know sometimes these moments feel like the worst in our lives, and lack of sleep and fear for the welfare of your children adds nothing to it, but if I could say one thing to you, it would be that this too shall pass. I hope that doesn't seem overly insensitive of me. I just want you to know that even in the depths of your frustrations there are SOOOO many people out there praying for your family. And my special prayer for you today is that God will give you peace that passes all understanding and that VERY soon you will be able to look at your boys and shake your head remembering all you went through with them to get them to where they are at. Hang in there! Lots of people love you, even one's from your distant past :)

rodrigoa said...

Michelle and Shane,

I am grateful that you let us stay connected by posting. I love to see the pictures and the progress they have made throughout their journey. They are two very beautiful boys. Always in our prayers. God Bless.