Our meeting with Dr. Looove went well yesterday. Maddie’s oxygen saturation was back in the 90’s, right where we like it. The blood tests showed that the diuretic hadn’t adversely effected her electrolytes, so we’re keeping her on the steroids and diuretic for the remainder of the prescribed seven days. Dr. Looove also said that she could tell Maddie’s lungs were drier. That is a weird thing to type. Dry lungs? Sounds uncomfortable. We don’t have to put her on oxygen during the day unless she’s fussy. Dr. Looove was, as usual, awesome, and stayed late to talk to us on a day she was planning on leaving early.
You had questions and I have answers.
Q. Why did Dr. Lung think Maddie had cystic fibrosis?
A. To be fair, she wasn’t the only doctor that thought Maddie might have it. She was tested in the NICU for it as well. She had/has a lot of similar symptoms: inability to pass meconium, lung collapse, distended abdomen, slow weight gain, coughing and wheezing. And while I’m glad the doctors were thorough and checked her to rule it out, I’m pretty sure that both parents have to carry the CF gene for a child to get the disease. Neither of us have the gene. Pointless testing? You be the judge.
Q. Are these these difficulties primarily due to her prematurity?
A. Yes. I would say 100%. Her lungs were very underdeveloped because my amniotic fluid was so low the last ten weeks of my pregnancy. One of the NICU doctors said that while Maddie was born at 28 weeks, her lungs were more like those of a 24-weeker – and a very sick one at that. Because she was born so early, she was on a ventilator for four weeks. It was a life-saver, but the pressure and mechanics involved with a respirator did a bit of damage to her lungs.
Q. Has anyone been able to tell you when Maddie’s breathing issues will be over?
A. When she was in the NICU, one of the doctors told us that 50% of kids with Maddie’s issues outgrow them by age two. Fifty percent of the kids that don’t outgrow the issues by age two outgrow them by age seven. And the rest of the kids are screwed. Just kidding! They basically have asthma. I don’t have a crystal ball, but I’m assuming that Maddie probably will have some sort of lung issues her whole life, but hopefully it’s no more serious than asthma.
Q. When will Maddie outgrow her need for oxygen and breathing treatments?
A. Good question. We don’t know. Hopefully she will outgrow her need for oxygen soon, like in the next few months. I have a feeling the breathing treatments will be around for a while – maybe the frequency or dosage will change, though.
Q. What was Maddie fed in the NICU?
A. Maddie wasn’t permitted to take food by mouth until December 15, over a month after she was born. Up until that point, she was fed total parenteral nutrition (TPN) through her IV PICC line. When she was finally cleared to start eating, she was fed breast milk I’d pumped and frozen. That was back during the brief period when my boobs did more than just look pretty.
Q. What are Maddie’s favorite solid foods?
A. Maddie has yet to fully embrace the wonder of solid foods. However, she seems to tolerate apples and carrots the most. We haven’t tried the green foods, yet. Those are coming up this week. Whooo, I can hardly wait. Life is crazy-exciting around here.
Q. What do I do for a job?
A. I work in sales for a professional sports team in Los Angeles. The sport involves sticks and balls, and they actually play in LOS ANGELES and not ANAHEIM. I don’t want to say the team name here for Google protection, but if you can’t figure it out from these hints you can email me. Professionally, I am known by a different last name. Sometimes I get deliveries to Heather Spohr at work and people seriously have no idea who that is.
Q. How old am I?
A. I ask myself that all the time, especially when I’m laughing at the word, “duty.” DOOOODY! HA! But on Friday, I will start the last year of my twenties.
Q. What song did you sing at the Karaoke bar the night you met Mike?
A. “Criminal” by Fiona Apple. I also totally stripped down to my underwear and writhed on the floor. If you haven’t seen that music video, that last sentence probably didn’t make sense. Just like the video.
Q. How do you get so many photos of Maddie smiling?
A. A more appropriate question would be, “Does Maddie ever stop smiling?” Because she smiles all…the…time. She is so happy that sometimes Mike and I are like, “kid, we need to tell you about this really bad earthquake in China.” She needs some perspective.
Q. How did you get such a cute baby, and isn’t it illegal to have a baby that cute?
A. Maddie looks soo much like me when I was her age, except I was way fatter and I had lighter hair. These pictures are the best examples I can find at the moment, but fo’ rillz, she’s my mini me (with some Portuguese flavor from Mike).
Maddie at six months old.
Me at six months old.
I would show a picture of Mike at six months old, but he’s the youngest so his parents were totally over taking baby pictures by the time he came around. Or maybe they didn’t have cameras back then. In fact, I’m not entirely sure that he ever WAS a baby. He might have just been created as a five year old. We’ll never know for sure.
As for the legalities of having a baby this cute, well, if she’s breaking the law, we’re going on the lam.
she’s a clone! (i have two babies that cute and it’s not legal here either)
Black Hockey Jesus says:
I have a question.
Do you & Mike ever talk or do you just Twitter from 2 computers in the same home?
And I’m pretty sure it’s very illegal to have such a cute baby!
I love this post, too.
Do you know any of the scouts for that team? I go to church with one of them, nice guy.
moosh in indy. says:
She really is abnormally cute. I mean, I thought mine was cute, well she was, is, whatever. But yours is freaktastically cute. And I’m not even related.
Wehoo for answers! Love the pics!
I’m glad the doc had good things to report! I have to say I’m liking this doctor. And she is beyond adorable. I love the constant smile – combined with those bright eyes… it’s hard to tear your eyes away
My daughter, Rylie, went through the same thing as Maddie. We were also told that she had CF, and neither myself, nor mu husband carried the gene. We went through one hospitaliztion after another for her first year of life always being told that she was suffering from RSV and CF. I just remember crying daily wondering how I was going to be strong enough to one day have to burry my daughter. Finally. after two sweat tests at Children’s Hospital of Orange County, her pulmonologist found that she does not have CF but BPD (Bronchopulmonary displasia). It was a big relief, I just wish I would have known that much sooner as it was such an aganozing year dealing with the fact that my baby had CF. She is on a lot of meds that she takes daily, most of them steroids, but she is managed and controlled. Every now and then we may end of the in the hospital with an episode, but she gets her RSV shots monthly (Nov-Apr) and takes her meds daily. Rylie is now 3 years old and functions normally. Her breathing problems are still there as we never suffer just a cold, it’s always something that has to do with the lungs like bronchitis or walking pnumonia. We do have to be carefull with her, but it’s not as bad as when she was younger. Thank God we are not in the hospital like we were because my son who was only 1 at the time she was born, really had a hard time without a mommy as I was always with Rylie. We are now pretty normal and Ryan is 4, Rylie is 3, and baby Reagan is now 3 months. It is never easy with a sick child and having to deal with all the meds, but I thank God every time I have to administer her meds, I thank him for the opportunity to do so. She is a blessing and made me the strong mom that I am today.