Random Updates

It has been a while since I have updated things. Addisyn is 10 months now and has turned into a hefty little thing. She is now over 20 lbs and has caught up to most kids her size. We are in the process of getting her qualified for DDD and all that stuff because the EI people don't think she will be caught up by age 3. Whatever, is what I say. She is rolling and practicing her sitting. She can't quite sit unnasisted, but she is getting there. She also has 2 teeth and is enjoying being a little kid.

Addisyn had a bronch last week, and it went alright, but her airway is still not ready for her to be decannulated. I really don't mind the trach too much, but I am tired of telling the same story over and over again. I am going to to what another trach mom did and make buisiness cards with her blog on it and just pass it out. I feel like a broken record these days and it seems like everyone is disapointed about the trach but me. Maybe they just feel sorry for us, or her. Now, of course if I had to choose life with the trach as opposed to without, I definitely would choose the latter. However the trach is part out our life and will be for quite some time. As for the the question of the day, or the question of every day, the answer is that the trach will be there indefinitely. It will eventually come out sometime, but looking that far into the future can be just too overwhelming for me and I have learned to focus on the now rather than the future. If I spend too much time worrying about tomorrow, then I will spend the rest of my life regretting missing out on her early years because I wished them away.

As for me, I start school on Monday to continue my education so I can finally earn my nursing degree. I would like to be a NICU nurse, not only to give back to whose who have done so much for us, but also because little babies are so innocent. You are not dealing with some drunk who hit a van full of kids on their way to church or having to patch up any of the other rejects of society. Neonates are completely innocent with their whole lives ahead of them. They also can't tell you no when you have to give them a needle. I cringe at the sound od screaming little children in the children's ER.

Here are some newer pics of Addy. She is pretty cute, isn't she?

When things turn, they turn fast

About 10 days ago Addisyn woke up with a cough and yellow secretions. By the end of the evening, I was taking her to the ER again. She was imediately admitted because she was working to breathe. She spent a few days in the PICU and I was expecting the worst, however this time she did fare rather well. She was home within 3 days and antibiotics. Our pediatrician also gave us a script for Tamiflu in case anyone around here gets sick. Lucky for us, we haven't seen any Swine Flu in the immediate area. We were told that if she were to get sick, she probably wouldn't do well.

Why me?

As I sit here and read some bad news about a little girl I have been following for quite some time, I wonder, "Why me"? Addisyn too was born at 28 weeks, a miracle in itself. Born at a scrawny 3 lbs 3.7 oz, at that time, I wondered "Why me". Well, now this little girl isn't doing so well, like many times before, but now her parents really think they will have to say goodbye this time, and still I wonder, why me? Because of her, I know how fortunate I am to have this precious little gift. I wonder why am I so fortunate to have this little miracle in my life. I wonder why things have went so well and why she always bounces back. I will never know why I have been so fortunate, but I know I will embrace every moment with my daughter. I know the value behind every smile, every bottle, every dr visit and every morning that I am able to wake up and be with her. I even embraced those dreaded nightime feedings, because I know how it could have been me. Most people will ask why me, when blessed with a tiny, helpless baby such as Addisyn, and many more will ask why me, when they have to sign the consent for a life changing surgury, like a tracheostomy. What many people don't know, is that they have been blessed with their very own miracle. Sure, miracles happen and we hear about them, but how wonderful is it to be blessed with your very own miracle and to be able to witness it every day of your life? I will never take for granted a smile, her first steps, her first words, those little brief squeeks of vacalizations. Every day, I wake up and embrace my little girl, because I am lucky to have this day with her.

Another busy week....

Last week, Addisyn had her 6 month appt and shots. It went well, however the redness around her trach was not going away with Nystatin, so her pediatrician did a culture. It came back with a mild staph infection, so we were given an antibiotic gel and all seems to be getting better now. Addisyn is now 14 lbs 4 oz, and in the 10% for her actual age. She is in the 25% for her height and her peanut head still hasn't caught up yet.

Addisyn is discovering her hands this week. She will lie and look at them and then reach out for whatever she wants to touch. Yesterday, she was amused by batting at my face. This week we had pulmonology, GI and speech. Not much changed pulm-wise. Soon we are going to start talking about when the trach comes out. It won't be within the next 6 months and will be a "wait and see." We should have a better idea sometime in early summer. Speech is working with her on her PMV (speaking valve). Today she wore it while she took her bottle and she finished it much quicker than normal. We were also given the recipe to mix baby oatmeal instead of simply thick. Hopefully it will take care of some of her belly troubles.

1/2 Year Old

Addisyn had her 6 month well visit with the pediatrician today. She is 14 lbs 3 oz and getting to be a big girl. She is 10% for her weight and 25% for her height. She is doing well- not too much to report. Dr Y took a culture of her trach to make sure she isn't growing anything other than yeast.

Speech is going great. We just got to OK to do 30 minute trials on her Passy Muir valve.

How Preemie Moms are Chosen

How Preemie Moms Are Chosen (Adapted from Erma Bombeck)

Did you ever wonder how the mothers of premature babies are chosen? Somehow, I visualize God hovering over Earth, selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger. "Beth Armstrong, son. Patron Saint, Matthew. Marjorie Forrest, daughter. Patron Saint, Celia. Carrie Rutledge, twins. Patron Saint... give her Gerard. He's used to profanity." Finally, he passes a name to an angel and smiles. "Give her a preemie." The angel is curious. "Why this one, God? She's so happy." "Exactly," smiles God. "Could I give a premature baby a mother who knows no laughter? That would be cruel." "But does she have the patience?" asks the angel. "I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of its own. She has to make it live in her world, and that's not going to be easy." "But Lord, I don't think she even believes in you." God smiles. "No matter, I can fix that. This one is perfect. She has just the right amount of selfishness." The angel gasps, "Selfishness?! Is that a virtue?" God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says 'mama' for the first time, she will be witness to a miracle and know it. I will permit her to see clearly the things I see – ignorance, cruelty, prejudice – and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side." "And what about her Patron Saint?" asks the angel, his pen poised in the air. God smiles. "A mirror will suffice."

PMV Trial

Today was Addisyn's first PMV (speaking valve) trial.. I didn't expect to do it this week, but we did. In my eyes, I think she did pretty well, however she is unable to exhale all of the air she inhales, so we have to drill a hole through the PMV to help her out. She has been doing well when she's not on her oxygen- actually better each day. I feel like I am doing something wrong when I take her off because I am so used to having it there. Her speech therapist said she is doing what they look for to start working with the PMV. She also said the PMV is one more step toward decannulation (trach out) as it helps her learn to breathe through her nose. I am not used to so many things going well for her because she has had such a rough time in the past.