Sunday, May 17, 2009

The boys joined us in CH last night and were hoping to keep them as long as we can. It's been so good to have our favorite people around. As you can clearly see, they are just fun little people. Wether sharing raisins, or making their funniest faces, they just make me smile- a lot. The above picture is after mama gave them hair cuts and baths. It felt so good just to take care of them.
Have I mentioned that the walls in RMH are paper-thin? Do you think the above picture and paper-thin walls are a good combo? Adventurous, aren't we?
Speaking of adventures- going to the movies and getting the LARGE AND REFILLABLE popcorn and drink combo. NOW THATS ADVENTURE! We went to the movies the other day, as a fun distraction. I love going to the movies. Isn't it generous of them to give us such a large amount and THEN offer to refill it for us for free?! And they say everyone is cutting down in this economy! I was shocked! And they only charged us $8.00 for popcorn (oh, but remember, it's refillable) and $5.00 for a drink (I know, but it's refillable, too!). Did I mention that the popcorn was drizzled with gold instead of butter and the drink was filled with rubies instead of ice. At least, I'm sure it must have been. That would explain the exorbatant cost. At least, Noah is really eager and somewhat frivilous when it comes to spending fantastic amounts of money for something we will later flush down a toilet, literally. Aren't I lucky? Look at how excited he is in the picture. Oh, he must love me. Did I mention I am on a diet?
So those are just some ways we've spent some "free time." Now, to my boy. The above pic displays his new and very adorable frog baby legs.  I got to help give him a bath and get him smeeling good and all dressed up. Those are some of my favorite moments. It's really hard to know when to do it, though. Lately, I have noticed him getting stressed out easily. His little body has just been through so much, the simplest things are stressors for him. His heart rate begins to rise, his respirator rate rises, and the most unfortunate thing is he usually throws up. He only throws up about once a day, during a kind of stressful moment, but it's enough to have given him an oral aversion.  This is NOT good.
 Since his first bottle, they have tried once more, but now he's not even wanting a paci without gagging.  Please pray for his feeding. That will be his next big hurdle.  Now that he doesn't want stuff in his mouth, I'm worried that he won't be able to get enough calories through a bottle. Especially for heart babies, they need to get extra calories. Becasue their hearts are working so hard, they burn extra calories, therefore needing more calories. This is especially true about Shepherd because he is facing a major surgery in the near future. His major goal is to get bigger and stronger. Please pray he is miraculously able to do that without getting feeding tube put in.
I don't think we'll spend too much time trying because we don't have much time. So far, it looks like the cath procedure continues to be fairly successful for him. His blood pressure has been all over the place, but they think that is just the blood pressure cuff malfunctioning. I don't know if it's just me being fearful or being intuitive (there is often a very fine line between the two) but I just don't think he feels well.  It is probably just the fact that he's been through so much and now he's moving quickly with eating and feeling well enough to "complain" about his circumstances. It is just difficult, as with regular newborns. but WAY worse. When he is discontent or it seems something is a little "off." I think, it could be gas. Could be something way worse. Little but stressful, I must say. 
So that's where I've been at the past couple days. Just watching monitors, holding my boy, and hoping he gets better. There isn't much major for him. Were waiting around in the PICU till there's a bed available on the CICU(cardian intermediate care unit). Once there, were hoping the boys can see him! The staff has been so sweet. SO far, at least 5 nurses from the PICU are going to come home with us and do home health care for Shepherd. We are so blessed to be so well loved and cared for by these folks. We will really miss them when we move floors.
Were off to the museum with the boys and then a visit with some of our family. Pictures to come. 
                                         HAPPY BIRTHDAY ADRIANNA FAITH!!!!!!!!!


Betharoo said...

We'll pray that he starts to take a bottle again. And grows strong quickly. I have to say, he looks so much better in his "frog legs" pic. He looks like he's put on a little weight and his color looks good. Enjoy your little outings!

Anonymous said...

I have been keeping up with Noah through the link on your site and you have removed it. I had not remember to save the link to my favorites. Would you please return the link or list the site in your blog? Thank you.

I want you to know that your blog is such a blessing. Your strength and faith are amazing. I know your strength comes from the Holy Spirit and His grace. My prayers are with you and your precious family. You have helped to teach me to appreciate my three healthy children and not take one day for granted. Noah's mother has also taught me never to take my healthy 6 month old baby girl for granted or to get overly frustrated when big brother(7) and big sister(4) are too goofy and not always as obedient as they should be. They are healthy and happy. I am SO sorry that your angel has struggled so much.

Thank you for sharing your story. God bless you. Stephanie

Julia said...

Our daughter did the same thing with the bottles and paci after ecmo. We ended up buying every bottle made along with the paci that was shaped just like them. We finally found one. Maybe they would try that. We will be praying. Brentwood,TN

Jerri-Anne said...

I cannot tell you how nuch it blessed me to hold our little man yesterday! I know that it was Anna's birthday, but I feel like I am the one who got the present! Love you guys and can't wait for the day you bring him home!

Sylvia Goode Basham said...

Great to hear the progress. I'm glad you got to go to a movie...which one? If we get food at the theater, we do the same thing with the refillables, but we usually only get the food when it's the family...makes it even more economical :-)

Love and prayers,
The Bashams

Melissa Illig said...

Stephanie and Noah..I know that it is a great thing that Shepard does not need to be here in the PICU anymore..BUT I am going to be VERY selfish and say I wish you all didnt have to go!! You both are absolutely incredible and are an inspiration to myself and all the nurses here. You are always in my prayers. Please come and visit..I'll have a rootbeer waiting for you Steph ;)..Melissa