Sunday, June 27, 2010

Mooresville has been incredible this summer. We are in the lake everyday. The big boys are in swim team and tennis. Max is almost completely better. He only takes one medicine, twice a day, and in the next month or two his pulminologist wants me to start weaning him from it. He is truly the best baby in the world. He sleeps great, he's happy and the boys love to play with him.

Josh is wakeboarding, Luke is skiing (but trying the wakeboard every time we're out). Dean swims like a fish in shallow water but still won't get into the water if it's over his head...even with a life jacket and 4 or 5 other flotation devices.

Wednesday, February 3, 2010

Max is doing great. Things immediately got crazy when I returned home. Not only did we have to start right back into school, preschool, sports, work, church....but Max was loosing weight and not getting better as expected. The cough, which all the docs thought was a post RSV cough, was not getting better. I went back to the doctor twice and then to a pediatric pulmonologist. My regular pediatrician tested for Pertussis (whooping cough). She said it was highly unlikely since all children get vaccinated for it at 2 months old. Of course Max had it. To me, it was great news because it was a definitive diagnosis that could be cured via antibiotics. He's finished his antibiotics and although the cough is still lingering it's sooo much better and he can eat!! He finally started gaining weight last Friday and I couldn't be happier. The boys are loving him. They want to take him to show and tell and are saying in their prayers how thankful they are that he's home and that we're together again. It's good to be back, even if we did miss vacationing...anything is better than a sick baby.

Thursday, January 14, 2010

We're home!! We have been here since Saturday, which is also when my mom drove the boys back down from VA. We're finally back together and things are starting to feel normal. Max still has a hacking cough and his appetite is lacking but he's improving each day. He's still a little junkie, but we're weaning him and by the 20th he'll be off all medications.

Friday, January 8, 2010

STILL HERE. Max was up an ounce yesterday and all he had to do was go up one more tiny ounce in 24 hours and they would have let us go home today.....he lost two. He's just so uninterested in food and I think it's because it takes so much effort. For us, I think it's like playing soccer while drinking a milkshake. It's not worth the effort. He's still really congested and uncoordinated with his little suck. Since about 3pm today he seems to be a tiny bit more interested than the day before so maybe tomorrow will be the day. I'm not really worried about Max anymore. He's getting better everyday it's just ridiculously slow. Now that I'm not worried about Max, there's room in the worry part of my head for my other kids. I don't think I've really parented them since I went into the hospital for my c-section on Nov. 13th. I hope they don't come home with parent abandonment issues.
On a good note and a little bit of a pathetic one, Max learned how to smile while in the hospital. He started a couple nights ago and hasn't stopped smiling since. He smiles at the nurses, the doctors, the techs, the respiratory therapist but most often, he smiles at the ceiling.
I think he breaths better with his neck stretched back looking at the ceiling. So if your happy, and that's what you're looking at all day, might as well make friends with it.

Wednesday, January 6, 2010

I can't wait to get back to my other little dudes. We're still at the hospital but today I saw a light at end of this long tunnel. Although the NG tube (nose feeding tube) is still in, it's the first day in three weeks they didn't use it. He received everything orally, medications and food. He nursed exclusively without getting nose feed supplements...YEAH! The nurse said "well we'll weigh him tomorrow and see how it goes". My response was, "see how what goes and if it goes well what then, do I get to go home." She said "well no...I mean maybe the doctor will take the tube out." Tell me that doesn't sound a little prison-ish, early release is based on good behavior. But regardless, I wouldn't dare go home without the doctor having full confidence that I won't be back because of dehydration or his adorable smoker's cough. If he hasn't lost weight tomorrow and if they take out the NG tube, I'm guessing they won't keep me in much longer than one more day. That's the update.

Tuesday, January 5, 2010

I'm still at the hospital with Baby Max but the good news is he learned how to suck! The bad news is he only has the stamina for about one third a regular feeding. Ever since extubation I have been attempting to feed him every three hours for 20-30 minutes with no luck. Finally yesterday he showed interest. About 10 minutes into a feeding he takes six to eight sucks then about 20 seconds to breath. He does this about 4 times, then coughs like a 65 year old smoker and falls into coma like sleep. I've had consults with a speech therapist and lactation specialists and their advice "keep doing what you're'll just have to wait." Their main directive is to not force him to eat, as that can cause a "set back".

The doctor will not say when we'll get to go home, only that Max has to be on full feeds before we leave the hospital or we may end up back due to dehydration. We're getting there. It's a slow process and sitting in this room 24 hours a day is turning me into a crazy person least Max is getting better.

I had to add pictures of my small prison to help better relate the claustrophobia I'm starting to feel. Bright blue formica, bad oak cabinets, machines that beep every 15 minutes, and pages for nurses and doctors 4 times every hour could possibly make the most sane person a little coocoo.

Sunday, January 3, 2010


The first picture is Max now and the second was Max for two weeks over the Christmas and New Year's Break. He got RSV on December 12th. He was hospitalized for 1 night on December 14th, brought home for one night, then sent to a large Pediatric Hospital in Charlotte on December 16th. The night we arrived his lung collapsed. They stabilized then intubated him that night. We are so grateful our pediatrician made the call to send us to Charlotte. Had we not been at the children's hospital when his lung collapsed the doctor said we would have been calling 911 and "it would have been a real mess." That was his way of saying he may not have made it. It's been an emotional roller coaster with our little guy having good days and scary days but he's recovering now. I was so sad I had to miss Christmas with my family in VA but so thankful they were all in town to take care of and distract my other kids. My family did so much driving and babysitting so that we could be by Max's bedside that I will never be able to repay them. Max is still in the hospital but only until he learns how to suck again. I guess after intubation and a couple weeks on heavy sedation, baby's can forget how..I thought it was a reflex but he definitely has no recollection of that skill.