Surprise, Surpise!

Things have been so busy around here. My semester is about over, the holidays are rapidly aproaching and things are moving so fast that my head is spinning. I hate curve balls, but when you have a child like Addy, you learn to take them. I can't believe how far we have come in the past year. Addisyn is 13 months now and 26 lbs! She is such a happy kid. By looking at her today, you would never know that she was ever so tiny.

So, we got some "news" about a week ago at her ENT appointment. Her ENT wants to do another broncoscopy- she wasn't supposed to have on until february. if all looks well he wants to cap and decannulate her- for you lay people, that means pulling out the trach. I was shocked to hear this as after her last bronch, he said it would be a while. Her pulmonologist is positive and thinks she can do this. I, however am not so sure. Maybe it is because I have become accustomed to believing that the trach would not come out until the spring, or even a year later. I had just accepted the trach as a long term part of our lives and that she would have it "indefinitely". I can't imagine life without it. I just can't grasp a reality of the trach not being a part of our lives- or maybe I just don't want to just yet. It has become a security blanket for me. I know her like the back of my hand. With the trach gone, I will be entering into a whole new world with her. Her bronch is scheduled for Dec 7, however she hasn't been feeling well for a couple of days so if she doesn't return to 100% well soon, it will be postponed. So far, she is rapidly recovering from her illness, so I am optimistic that she will be fine. Only Addy can tell us what she is ready for.

Almost 1 and HAPPY FALL!

I am so excited that fall is underway. The mornings have been beautiful. School is going well. It is week 6 already and I can't believe it. Addisyn is growing like a weed. She is over 23 lbs now! She started sitting a couple of weeks ago and now she is beginning to "Army crawl." Her birthday is in 2 weeks and I have to get ready for that. I really want to try to make her a fondant cake. I am thinking about giving it a try this weekend to see how it works out. Other than that, everything is going as it should. Everyone is healthy. On a sad note. I have to start going back to my Air Force drills in November. I am not really looking forward to it. My unit is going back to the Middle East in 2011. Lucky for me, I will be getting out of the reserves in April.

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.

Look Ma, No O's!

That's right no O's! We ha ve been weaning Addisyn from her oxygen and it has been going pretty well. She went a good part of the day with no supplemental oxygen yesterday and the majority of the day today. She was satting 95 on room air. I have had to put her on a little while napping today, but we are off to a start.

A Trip to Visit Some Friends

We took a trip back to Chandler Regional to visit some friends. Addisyn and I walked through the same doors that I walked through 5 months ago when she was born. The last time I walked through those doors, we were taking Addisyn to Banner Desert. She was very sick and intubated on a vent. I will never forget that day. Everything is pretty much the same, but this time Addisyn was mine. She was coming and leaving with me. It was such a great feeling. They gave me some supplies because I was running out on some things. We got to see a lot of her nurses and they were of course happy to see her. Dr Z kept rubbing her head. Things have fallen into place. We have a system down and life is much easier. It isn't much different than taking care of any other baby.

Cootie Season is Coming to an End

First Pulmonologist appt & almost there

We finally made it to the pulmonologists office yesterday. We changed about everything. He had us downsize her trach back to a 3.5 to give her a leak, he DC'ed one dose of pumicourt, DC'ed er Xopenex and increased her Aldactone. We are now trying to wean her from her O2. He told us to keep her sats at 92 and we are hoping the aldactone will help with the weaning process. Yesterday was A's first trip to the zoo. Unfortunately, mom forgot the camera- and her bottle.

New Goal and Update

We have had an eventful few weeks. Addisyn was back in the hospital for pnuemonia and I think that was the hardest 2 weeks so far. It was rough in the NICU, but when you bring your baby home, she is yours. To have to bring her back there and watch as they put a central line in and paralyze and sedate your baby was horrible.

Now onto better news. We are WITHOUT the feeding tube and nippling 4 oz feeds. Yay! She got to try her Passey Muir Valve (speaking valve) and it didn't work so well, so we have to wait until she is bigger.

Now for my goal. My goal is to get people from as many states as I can to form a March of Dimes team for Addisyn next year.

Been Too Long

Wow, have we been busy! I need to learn to keep this stuff up. So much has happened since Nov 12, so here is a timeline.

December 16- transferred to Banner Desert due to Acute life threatening episode on a vent.

December 22- Addisyn had her first bronch that revealed distal tracheomalacia. This resulted in a trach.

January 12- Addisyn was finally discharged from the NICU

January 23- Addisyn ends up back in the hospital for RSV

February 2-Addisyn back in the hospital with pneumonia and on the vent

February 16- Addisyn is finally home again. Here are some pictures from the past few months.