Friday, April 30, 2010

Dear Addison,

I can't begin to tell you how much of a joy you are to us. There was a time that we worried about how you would change us and now we can't imagine life without you. As I held and cuddled with you on the couch today, here are a few thoughts I wanted to share with you:

1. I love the way you are so content. Oftentimes if you are not ready to go to bed, you will just lie in your crib and stare around your nursery until you fall asleep- sometimes for hours- all the while not making a sound.

2. You are so patient with us. As new parents, we are learning every day. You tolerate all of our fumbles and mistakes so graciously.

3. You are such an active baby- but you have spurts of activity, take a snooze, and then wake up to wiggle again. Your body can't quite yet handle your activity level. Your therapist is impressed by your head/upper body control, and you are getting good at flinging your body around-almost to the point of rolling over.

4. You sleep great at night and you are starting to let us know more and more when you are ready to eat so we can feed you by bottle instead of dumping food in your stomach every 3 hours using your Mic-Key button.

5. I love to listen to you smack your lips as you eat. There was a time in the NICU that the doctors told me that it might take a really, really long time and maybe never that you would eat from a bottle and now you eat all day long from the bottle....and if the smacks are any indication- you really enjoy it...(-:

6. I wish you didn't have to be on frustrates you so much to have the tube taped to your face.....

7. I wish you didn't have to have heart surgery and have so many doctor's appointments. You are such an amazing baby and so extremely strong and brave. You challenge me to be a better person and mom

8. I love to hold you and kiss your head. You snuggle your face in my neck- almost as if you smell that I am your Mommy and you feel safe and loved- one of my favorite things ever.

9. I love watching Daddy play with you and hold you- although I do warn him to not throw you around quite so much after you have eaten. I keep waiting for you to throw up on him...maybe that will help him remember. He is such a good dad- don't you think?

10. I wish I knew if you could see and hear me as much as I imagine you can. I play music for you all day because I love music and I know that if you can hear it you will love it too.

11. I love when we bring you to our bed for a family nap/cuddle time. You love to be near Mommy and fall asleep almost instantly.

12. You are so beautiful. It is almost not fair to the other babies. I love to dress you in beautiful clothes and show you off. I can't believe how blessed and lucky I am to be your mom.

13. I never dreamed that I would love motherhood so much. You really make it easy to love. I look forward to watching you grow up- your first steps, your first words, your first ski lesson (-: Sometimes when I worry about what to expect, I look into your vividly blue eyes and know that whatever path you take us down, we will enjoy it because it is with you.

14. You are starting to really like bath time. You used to scream and scream, but now the warm water soothes and calms you. I can't wait to take you swimming this summer.

15. Your hair is out of control. Every day it turns more blonde and sticks out more. Secretly I hope it will turn out like Daddy's hair. (-:

16. I love that you are starting to get rolls of fat on your arms and legs. Your Dad has started calling you Chubs McPhee. Not sure where that came from, but it sure is catchy.

17. Next week we are going to Boston to have your heart operated on. I know this will be hard on you, but I want you to know that I will be there with you every step of the way. I know I can't take the pain away. Sometimes I wish that my love could protect you from all of this, but I promise after your surgery, as soon as we are able, we will have a long Mommy/daughter holding time that you love so much and that instantly calms you no matter what just happened.

18. I don't mind it when you cry, because to me it represents health. You used to not be able to cry. Now I welcome the baby sounds filling my house. You make the cutest little noises along with a poochy lip if the mood hits you. (-:

I love you, Addison!

Thursday, April 29, 2010

Volcano Addison

Pretty pleased with herself after today's activities....

It's amazing how one appointment can take up the entire day. Addison and I had an appointment at 1:15 and it pretty much took all afternoon. Not only did it take up the entire afternoon, but it was quite rough. Here is how it went down. We arrived about 15 minutes early so that I could give Addison her bottle before going in. She made a good start on it while we were in the car and then I decided to have her finish it in the waiting room. The only problem was, the appointment was upstairs with no visible elevator, so my usual stroller trick (putting the oxygen cylinder in the cart and snapping in her car seat) wouldn't work. I decided that it probably wouldn't be that long of an appointment, so I left her diaper bag in the car, taking my purse with some papers that we needed, a blanket, her bottle, her oxygen and one burp cloth. It was a bit of a struggle to carry the car seat and the O2 bottle at the same time, so I threw all of the stuff in her car seat and carried Addison over my shoulder. Once in the waiting room, I had a whole mess of papers I was supposed to fill out, but I was still holding Addison so the lady next to me offered to help me. While waiting and filling out papers, Addison managed to take down almost the rest of the bottle. I was busy trying juggle her things, fill out the paperwork, talk to the lady helping me and continue to feed Addison that I forgot something essential- burping Addison. We finally got called back, and I continued to carry Addison over my shoulder while carrying all of her stuff in the seat. We got back to the exam room and the initial nurse was brand new to the job, so she was paying a lot of attention to paperwork and such and not a whole lot to us. All was going well, until about two minutes into the appointment. I looked down at Addison and she had a very familiar look on her face. About the time I diagnosed the face- it happened. Addison opened her cute little mouth and the contents of the entire bottle that she had just scarfed down came out in a fountain of milky eruption- all over me. all over her. all over the chair. When Addison spits up- it is everything or nothing and this was definitely everything. I looked over at the nurse to see what she would say. She had not even noticed and just continued asking me a million questions. I said...."Oops, Addison just threw up" and we still didn't get a glance from the nurse....hmmmm. At this point, I was regretting leaving her diaper bag with a change of outfit in the car, but thought, how much longer could this appointment actually be? I stripped her down to her onesie and thought we would just ride out the rest of the visit. The nurse directed me back to the waiting room and told me to wait for the next part of the visit. The waiting room was full except for one seat and I was covered in vomit so I silently apologized to all of those sitting around me since I knew the smells radiating from my sweater were pretty bad. I sat down and not thirty seconds later, I look down at Addison and realize that she has turned bright red and is grunting. Just then, a wave of silence fell over the waiting room....just in time for the "thunder from down under" coming from under Addison's onesie.....the smell that then hit the room was almost immediate. People started to stare as soon as they heard her very loud gas noises and even more so when they started to catch a whiff of what she had produced. I looked down at the white onesie and realized that there was brown stuff oozing out and that I was going to have to make a trip out to the car. I juggled all of the stuff and a now oozing Addison back out to the car to get the diaper bag and back inside to do a diaper change as well as put a new outfit on Addison. Unfortunately, I didn't have a new outfit and the appointment was far from over. Ahhh, the special Mommy perfume, accompanied by dark wet blotches all over my clothing....A couple of notes to self: 1. never leave the diaper bag behind. that is the time that you will need it the most. 2. always pack a spare shirt for Mommy in the diaper bag. Anyway, all of that to say- stressful afternoon.

After we got home, we got a call from the nurse practitioner in Boston who had more details about Addison's heart surgery. They have decided to just close up one hole for now. They will then reevaluate if that is enough to cure the pulmonary hypertension and if she will no longer need O2. If it doesn't help, they will go back in later to close up the second hole. They seemed pretty optimistic that this first surgery will solve most of the problem, but obviously they can't promise anything. I am feeling a bit better about this now. They will go in through her side (behind her arm) instead of having to do bypass and go in through the middle. I do not speak medical jargon, so please excuse the extremely simplistic explanation. So thankful that they chose the less risky surgery. I really hope that this will take care of her need for O2. I would really like to see her beautiful face without having it covered in tape and a nasal cannula...although she is getting great coordination practice as she continues to pull it out of her nose and attempts to pull it off of her face. (-:

Spinach and cheese calzones in the oven. Hoping for a nice, quiet evening with some laundry folding to recover from the afternoon. Also still working on getting my house put back together after our painting venture this week....there just aren't enough hours in the day.

Tuesday, April 27, 2010

A Scheduling Change

"Your daughter will need to have heart surgery this summer in Boston". This is what Addison's cardiologist told us at her last echo. This summer. That seemed far off and somewhat elusive, so I tucked this horrifying thought away....a problem for future Deanna to handle. Until today. This afternoon. When my phone rang with a Boston area code and I was told that her surgery would be happening a lot sooner-two weeks from today. The person on the other end of the phone really knew nothing about the surgery. She was just told that she needed to schedule it. We were told before that Addison has two holes in her heart that are not closing up. They hadn't decided if they would be closing both holes or just one. If they close both of them, they have to go in through the middle- breaking a bone and we are talking heart/lung machine and a big deal surgery. If they just close up one- it is still a surgery and still a big deal, but not as risky. They still have not told us which one will be occurring. When I asked the scheduler about this, she gave me a doctor's number who would supposedly answer all of my questions. However, I called the number and got the doctor's assistant's assistant who knew nothing and transferred me to a dead end. I will be calling back again tomorrow. They said that we will need to be there one full day before the surgery for tests and registration, and that they would only keep her overnight for one night after the surgery and then she can come home. This leads me to believe that they are choosing the smaller surgery- but I can't be sure until someone will actually tell me that for frustrating. One good thing is- my mother will be visiting as well as my sister. So, I will have company for the entire trip as this is Aaron's busy season and he will probably only be able to come down for the day of the surgery.

On a totally different note, these last two days have been pretty crazy and filled with painting as I set out to redo my Living Room over Spring Break. I am happy to report that all of the painting is pretty much done. All that is left is painting the closet doors which are detached and set up in the basement ready for me to roller paint. Tomorrow I will scrub the floor and put my furniture all back in the right places. So excited. It was nice to finally get this project done- it has been bugging me since the day we moved in. It has also been wonderful to have the help of family to help get this done quickly- Mom and Dad Smith, Nano, and Poppy- so grateful for their help. I am so pleased with the outcome. Only problem is now, the paint job looks so awesome...I am going to have to go buy some new furniture....(-:

Here are some pictures for the last couple of days that I have not previously posted since I have been busy painting...

A little father/daughter time. I think she has his eyes...

My beautiful daughter

All snuggled up in her swing watching Mommy paint. I'm pretty sure that this face is saying- "Hey Mom, you missed a spot..."

Nano took a painting break to hold Addison. She was originally going to watch Addison so that I could focus on painting, but Addison was such an angel and slept pretty much all day so we were all able to paint.

She is very coordinated. Look at the evil that she is performing with her talented hand and the very pleased expression on her face...

I came in one night and found in the world did she get throw up in both eyes????

Just wanted to report that her feet are getting bigger....these shoes almost fit. They actually stayed on for a picture!

"It's my party and I'll cry if I want to" Yes Addison, sometimes being beautiful is hard work...

Saturday, April 24, 2010

Sunglasses and Wood Paneling

A mother/daughter shot with new sunglasses before heading out for a family trip to Lowes

I have declared war on the wood paneling in my Living Room. I spent the majority of today prepping my LR...this picture is the current state of my LR....after pictures (hopefully) soon to follow...
We have been in our house for a little over one year, and we have a pretty decent start on the number of improvements that need to be made. But, the one thing that bugs me the most is the wood paneling that is/was present in almost every room on one wall. We have replaced the Dining Room and Addison's room wood paneling with drywall, and the Living Room has been "next" for quite some time. Because it is such a huge project (we replace the ceiling at the same time) and because I cannot possibly do it myself and because our ultimate goal is to rip that wall down anyway as we turn the garage behind it into a sunken family room....I have decided that I am going to paint this wood paneling and the rest of the Living Room with my Spring Break this next week. Well, I was originally going to wallpaper the wood paneling, but after consulting with my decorating specialist, AKA my mother-in-law, we have decided that painting is the better option. I am so excited to finally get this done and modernize my Living Room. Wood Paneling- you have met your match....hope this turns out well. Anyone have any experience painting wood paneling?

When I have a hard time getting Addison to nap, I have found that the swing helps put her to sleep...

New sunglasses from Grandma Smith....apparently the jury is still out where Addison is concerned...

She has recovered well from her Mic-key button procedure. The next day she had already forgotten about it. I was talking to the therapist about the tramatic event and she said that doctors feel that babies have no memory of pain. I know that she doesn't remember it....but I sure do. The site is also healing up very nicely. In the picture I posted before, the brown stuff is actually the medicine to help the irritation disappear. The button is already causing less irritation than the g-tube was. I'm glad we made the change. I just wish it had been a little easier to switch.

Wednesday, April 21, 2010


So today was supposed to be a light day. Teach one class, do some baking, maybe some cleaning. Little did I know... At 9:00, the hospital calls and says that they can replace her g-tube with a mic-key button today at 2 or we will have to wait until May 3rd. Her g-tube has been oozing all sorts of nastiness and bleeding if bumped the wrong way, and we have been very anxious to have it replaced with the button which is much easier to take care of. We definitely wanted this replaced as soon as possible. However, my class went until 1:30 and there was no way that I could get home from school, load up Addison, and make it to the hospital in time for a 2:00 appointment. So, my extremely graciously mother-in-law, who was watching Addison at my house today, met me at the hospital with Addison. This appointment was nothing like I imagined. They said that it could be done as an outpatient procedure, but I still imagined it as a surgery where they would give her some sort of painkiller and work in a somewhat sterile environment. This is what happened: I ran to the hospital as fast as I could, releasing my class a few minutes early so that I could for sure get there in time. I got there just a few minutes before they called Addison back. They first weighed her, and said that she weighed 10 lbs, 4 ozs (she weighed 9 lbs 10 ozs on Friday). On that positive note, we headed to the room where they would perform the procedure. The doctor headed in a few minutes later with a resident and a medical student in tow. I asked if he wanted her onesie to be taken off and he said that I could merely raise it over the g-tube spot , but she could keep her onesie "on". I complied, wondering how this was going to go down. I backed away from the table so the surgeon could do his thing, and the resident suggested that maybe I wanted to wait outside. I said that I wouldn't directly look, but I wanted to be there for Addison. What happened next shocked and surprised me. The surgeon merely reached to the base of the g-tube, ripped it out of her stomach (with no painkillers) and quickly replaced it with the button. Addison immediately started screaming, a scream I had not heard before today. Normally when she screams, her eyes are shut and kind of scrunched up, but today her eyes were wide open while she was crying. It really broke my heart. The surgeon then gave me a users manual for the button, said if it fell out we should go to the emergency room, and left the room. The appointment took maybe 5 minutes. Probably the worst five minutes of her life so far. Thankfully, as soon as I started putting her in the stroller and in the car, the motion managed to lull her to sleep. But, as soon as we got home, she woke up and has been intermittently crying and fussing ever since. Can you really blame her? The surgeon said that if she was in pain we could give her a bit of tylenol, but our pediatrician told us not to give her any tylenol because of her enlarged liver. Thankfully, we can pick her up and comfort her, but she is now in bed, still a bit fussy and fighting sleep.

The swing helped to comfort her. Whenever she is really upset, she grabs onto her oxygen tube to soothe herself.

This is a picture of her new button- supposedly much easier to use. At the very least, it will be easier to dress her.
Overall- rough day. Wish that I could take my baby's pain away...)-:

Monday, April 19, 2010

Monday morning

When I woke up this beautiful Monday morning, I looked around at the disaster that I call home and briefly wondered....exactly what did I do all weekend? I remember being pretty tired from my first week back at work....I remember holding my sweet little girl....feeding my sweet little girl...changing my sweet little girl...bathing my sweet little girl...but other than that, nothing really got done. Man, it is exhausting being a Mom...but I wouldn't trade it for the world. While I am teaching a class, I forget about life outside the classroom as I focus on teaching, but as soon as I am in my car driving home, I remember that I have the most beautiful daughter waiting for me at home and I start smiling and can't seem to stop.

Today, Addison's feeding therapist came by and Addison performed admirably with her bottle. She also did a couple of good sized burps...Daddy's tutelage seems to be paying off. (-: The last time the therapist came, Addison scarfed down her bottle in 15 minutes and as we were bragging about her, she vomited the entire thing on me. Ahhh, the special Mommy perfume. The big improvement eating wise this week is that we have switched from the low flow bottle nipple to a regular flow bottle. Her breathe, suck, swallow ratio is much better than it used to be. When a baby eats, they are supposed to have one suck to one swallow to one breath. Addison at first would take 12 sucks before taking a breath. It is good to see her becoming much more coordinated with her eating.

I taught my first clarinet lesson tonight since returning from maternity leave. While teaching, I had a flash back to a clarinet lesson when I was in junior high. My clarinet teacher had just had a baby, and she brought the baby to all of my lessons. During one lesson, her baby had a big messy diaper, so she changed the baby right in front of me and then picked up her clarinet to resume things without washing her hands or anything. I always thought that was the grossest thing. Tonight I changed Addison before my student arrived and washed my hands before picking up my clarinet....this is something I vowed I would do ever since junior high. It is weird that I still remember that story in such vivid detail.

Not sure how she managed to get the oxygen tube around her head like that, but this is how I found her....desperately trying to grab onto it with her mouth...(-:

The view out my front door. I love Vermont!

The sunlight enthralled her...

Saturday, April 17, 2010

A picture update

Addison loves her Daddy...

She tries to put everything in her mouth. Apparently after her dinner of milk, she wanted a dessert of boppy...

Chillin' on her boppy throne...guess where the TV is...she found it!..time for a position change.

"Daddy, it's so easy to keep your eyes open for the picture...let me show you how..."

Helping Mommy fold laundry....such a nice and warm spot...

Contemplating and sleeping at the same time...what a talented child...

Falling asleep on Mommy...started up on Mommy's shoulder and through flailing and squirming re-positioned herself this way....

Daddy gave Addison her bottle and decided that she needed a cookie to go along with it.....hmmm...

Thursday, April 15, 2010

so close....

just shy of ten weeks and almost rolling proud of Addison!

A look back...

She hasn't always been this cool and sophisticated...

As I returned back to work this week, I guess I didn't anticipate how much I would be traveling down memory lane. When I first stood in front of my high school students, I had a couple of choices. One, pretend that I had had a normal maternity leave and that nothing was wrong so that I could continue to work toward "perfect teacher" who's life everything is wonderful and doesn't seem to be touched by the ugliness in the world and therefore, not very human. Or two (this is the option I went with), I could use this as a "teachable moment", being totally honest with my students and hopefully allowing them to learn a life lesson by hearing a first hand account of a mom who was told that her baby was going to be less than "perfect" and that the doctors would totally understand and support if abortion was chosen. I did not choose to abort my child because I believe that God created her just the way He wanted her-perfect in His eyes. Who am I to question that? I can't lie and say that it wasn't a struggle while I was pregnant to always accept the Down Syndrome diagnosis graciously. There were times when I wondered if I would love my baby- this terrified me. But now that I'm on the other side of this experience, I am overwhelmed by how much I love my beautiful baby girl. And, I told my students, that I hope that parenthood is a ways off for them yet, but when it comes their turn that they should never let someone tell them that their baby is "worth less" because of some sort of variation from the normal. Because no matter what, they will love that baby with such strong emotions that it will scare them at times.

Anyway, I allowed myself to be more vulnerable in front of my students than perhaps ever before, but God brought me through all of this and if I didn't share with my students the miracles that I have seen and help them learn from it as well- I would be failing in my job as their teacher. All of this to say, as I stood before them and told them what has been going on in my life, I really started to look back and marvel at how far we have come in the last almost 10 weeks. So, I have posted some pictures to help dictate the journey that we have been through:

This is a 3D ultrasound we got of Addison around 33 weeks.

This is my last "belly shot" picture as I posed in Addison's room, mostly finished, at the end of my pregnancy.

This is one of Addison's first pictures. Born 2/6/2010 at 10:40pm, weighing in at 7lbs 14 ozs, 19 in long. You'll notice that a lot of her weight is fluid in her head and stomach. I got to hold her very briefly before she was cleaned up while they were cutting the umbilical cord, but, once they cleaned her up, she started to turn a dusky blue. They immediately put her on oxygen and whisked her off to the NICU to determine what was causing her need for oxygen. By the time I was all cleaned up and ready to hold her again, she was gone.

Here I am visiting her in the NICU two days later. After holding her once the morning after she was born, we were told that we couldn't move her anymore since it caused her to need even more oxygen and caused her stats to drop dangerously low. She was in isolation and was hooked up to all kinds of machinery.

One of the night nurses took this picture late at night when she had to change the cpap. For the longest time, this was the only way we could see her face without being covered by the breathing apparatus.

Finally, one morning we came in to see her and they had upgraded her to a nasal cannula. We were sooo excited we could finally see her face! Isn't she beautiful?

Valentines Day. Her first time wearing clothes. (-: This is the onesie that I bought the weekend I found out that something was abnormal with the pregnancy. I determined there was nothing I could do to change things, so I bought her some beautiful clothes because it felt like I was doing something for her.
First family photo
After many weeks in isolation, they finally put her in the room with all of the other babies. Next to all of the premies, she looked a bit like a giant. (-: She got upgraded to an isolette and then to this crib. Each step presented progress!

After 5 weeks of wondering and waiting and praying, she finally got to come home! We first had a care conference with 10 doctors/nurses/therapists gathered together and her pediatrician on conference call to discuss all of her future appointments and her different health needs. It was extremely overwhelming. After that was over, we got to take her home for the very first time. So exciting! Once we finally got her all set up with her carry home oxygen tank and monitor, we started taking her toward the car. The monitor kept beeping and we couldn't figure out how to shut it off, so we ran quickly toward the car with her wagon beeping away. I'm pretty sure it looked like we were stealing a baby. I promise she is ours. (-:
We held a welcome home party for her, inviting Aaron's family to come meet her for the first time. I had high hopes of making a fancy cake decorated like one of the books that Aaron faithfully read to her every night in the NICU, but after cleaning my house and taking care of Addison, I had 30 seconds to throw a few halfhearted decorations on the cake I had shaped like a book. Oh well, it was a delicious cake....better luck next time.
Aaron on the floor with Addison while Mmom Smith was practicing CPR on the blow up baby that came with the DVD. (Sounds like an exciting welcome home party, huh)

One of her first baths at home. I end with this picture so you can see how far she has come. Her skin color is no longer yellow. She has gotten rid of most everything that was attached to her in the NICU. She merely remains on the oxygen. She does have a g-tube, not because she can't eat by mouth, but because she works so hard to breathe, they didn't want eating to be one more thing for her to work at. They wouldn't even let me give her a bottle in the NICU until I finally snuck one in. After yelling at me, they realized that not only was it OK for her to take a bottle, but she seemed to really enjoy it and very shortly after that she really turned a corner and came home much sooner because of it. I'm not saying I know more than the doctors, I'm just saying I know my baby better than they do. We will hopefully be getting rid of the oxygen after she has her heart surgery this summer to close up some holes in her heart. Despite her still lingering physical problems, she gets better and more alert every day. She is such a determined this pictures to her first ones and see for yourself what a fighter she is...she has come so far.

This is a very brief clip of the journey that we have been on the last 10 weeks. So many people have been praying for us and for Addison, and I am here to say that God has been so good to us! I am so excited to continue to see Addison grow even more beautiful every day. I am the most blessed mom ever to have the best baby in the world!