Monday, May 31, 2010

Memorial Day

What a lovely, relaxing Memorial Day! We spent time with friends, spent time as a family and Addison got her first mower ride! As Aaron runs a landscaping business, this will be a pretty big part of her life...so might as well start early. (-:

Addison sitting solo on the mower. She can hold herself up, but the seat is rather slippery, so we had to give her an assist to stay up....as you can see, we outfitted her with safety glasses and protective footwear (even though her foot only takes up half of the shoe...which are newborns)

Here she is pre- mower ride

Pre-mower ride with Aunt Andi...not sure what she's trying to say...

Getting her all set up on Daddy's mower...

Family photo op...

Addison's first mower ride around the house....



Had to include a pic of this- I was rather frustrated at the beginning of this weekend, so I channeled my frustration into some entertaining. Had a blast! This is one of the new cake recipes that I tried. It is now one of my favorites! As a black and white fan, you can see why this cake captured my interest...Note to self: it is a good idea to get a dessert calendar for the wall in the kitchen. This way you have a new dessert recipe to try every month. Note to self: it is a bad idea to get a dessert calendar for the wall in the kitchen when you are trying to lose the last of that baby weight...haha...oh well, i enjoyed making this cake!

Saturday, May 29, 2010

frustrated

There are the really good days of parenting....days where you just marvel in your beautiful baby and think how lucky and blessed you are. And then there are bad/frustrating/discouraging days where you wonder how much more you are going to have to deal with. Days like yesterday...for example. It all started on Monday. We had a cardiac appointment in the afternoon- her surgery follow up. She got her stitch removed, was weighed etc and had an echo done. We took her to the appointment without oxygen. In Boston, they had all told us that we would see her local cardiologist who had originally put her on oxygen and he would be in charge of starting the weaning process. It would probably be a few weeks, they said, that she would still need to be on oxygen. I was disappointed that we weren't taking her away from Boston without oxygen, but I understood that it would take time for her to be fully healed and I figured that we had already dealt with it for almost four months- what's a few weeks more? Well, we went to her appointment on Monday, ready to discuss the oxygen weaning process. I asked Dr. Yeager how we would go about it and when we could starting having her on the O2 just at night, and he got rather short with me and replied that we would have to wait to hear from Boston- when they thought that we should start to wean. I told him that they had told me that they were leaving that call up to him since he was her cardiologist. He got pretty curt as he replied that he would have to hear that from Boston himself. I left the appointment rather frustrated, not sure what the next step was. Well, I get a call from Dr. Yeager's nurse yesterday afternoon. She said that they just spoke with Addison's team in Boston, and they have decided that they will do a heart catherization six months from the surgery (November) and that we will discuss starting to change her oxygen useage then. I am just devastated. They really led me to believe that we were weeks away from being done with the whole oxygen thing. I am just so tired of dealing with all of these extra medical things. Especially since I watch Addison very closely and I know that she is already ten times better than she was with her breathing...and her surgery was only three weeks ago. Why do we need to wait until November to reassess? It feels a bit like they don't really know what to do with her, so they are waiting for someone else to make the call, but no one will actually step forward and say it is OK to stop using the nasal cannula. I am just so extremely frustrated. November- that means that she will be nine months old before I can actually stop taping up her face every day and can carry her around my house without tripping over her O2 cords and that I can't just snap a picture of her doing something cute without her nasal cannula blocking half of her face. I can't put her to bed at night without worrying about her pulling it off her face (she does this frequently) and then getting caught up in the cords as she wiggles her away around her crib. It is so easy for the doctors to just put this off...but for me it is very hard to think about doing this all for another five months. Yesterday, I was thinking. I really have made my peace with the fact that my daughter has Down Syndrome. But the fact that I have to keep her on almost 24 hours of oxygen for the first nine months of her life- to me that doesn't seem fair. Why can't I just enjoy my baby? Surely there is another way. Why are they so afraid to take her off the O2? Addison was born with TAM, which means that she has a one in three chance of developing leukemia before she turns 3. I am now imagining that when she finally is allowed to come off of oxygen, maybe we will have to start dealing with that. I am just so extremely frustrated, and I don't know how to solve this or where to direct my frustration.

Thursday, May 27, 2010

Picture catch up

So, I have been rather silent this week as I have been a bit preoccupied with work and such. End of the year means end of the year concerts, and as I have been out most of the semester for maternity leave/Boston surgery, these surgeries were extra stressful for me this year. One of them is now over, and thankfully was not a total disaster. (-: Now I am prepping for some Memorial weekend entertaining and then another concert on Tuesday night. Really looking forward to school being over for the summer so that I can spend more time with my beautiful baby! Speaking of which- here are some pics from random moments over the past week. She has started rolling up on one side and just hangs out. I'm not sure that she is trying to roll over...hard to tell. Her head is in a weird position if she is trying to roll. Anyway, she is so super wiggly and full of energy now that her heart hole is repaired, she is much harder to keep up with. She has also started "moving" by wiggling her butt. If I put her on a pillow, within minutes she has wiggled off the pillow and is then lying parallel to it. Love this!
Next week she will be hitting the four month mark, and I am considering trying to introduce some solid foods such as rice cereal. My therapist says that we can introduce anytime between four months and a year, and I have heard if a baby struggles with bottle eating they often take better to eating solid foods. She is doing much better with her bottle, but I still feel like she would really enjoy the solid foods. Thoughts on this? Is four months too early to start trying?

She is in a phase where she grabs on to her skirt and lifts it over her head....we are working on the modesty issue...(-:


On a different note, we planted our garden this week...hoping that I will be able to keep up with it all summer....anyone want to come help me weed?

Here she is halfway up on her side...



hmmm, so the pic is kind of a weird angle, but you get the idea...


Can anyone say...milk bong? That is her Mic-Key tube. For a while she was trying to put the end in her mouth. By the time I got my camera, she was asleep and just holding on.


Her first pedicure....for those who are critically looking at the less than perfect paint job...this is soooo much harder than it looks.

Now when she is hungry, she starts to lick her arm. So cute.

Friday, May 21, 2010

Dear Chubs,

Your Dad and I went on a date tonight and we talked about everything and nothing....and about you. Whenever your name was mentioned, we both got goofy smiles as we thought about your beautiful face- your mischievous ways. For some reason tonight, I can't help but think of a very dark time in my life- when I was 19 weeks pregnant with you- and I got a call from Dr. Brown (delayed by two hours because he was at a dentists appointment) saying that he was very, very sorry. "Your baby has tested positive for Trisomy 21". The very tone in which he said this was dripping with sorrow and grief- almost as if to call and tell me that you had died. I was home alone when I received this call, Dr. Brown was so extremely negative, and I knew next to nothing about Down Syndrome, so I really thought my life was over. I cried myself to sleep every night for the next two months while you grew inside of me. It was a dark time. I had failed you as a Mother even before I got a chance to begin. I am extremely competitive (which I secretly hope you will inherit from me), and I wanted to be the best mother possible for you. I was brokenhearted thinking about how I didn't give you the proper number of chromosomes. There was a time that I resented feeling you move inside of me. I had no control over this and I wanted to just fix the problem, but instead I had to trust and wait. I would hear of other people announce their pregnancies, and I would be so jealous that they were having "easy" pregnancies and "normal" babies. Life seemed very unfair. There finally came a point when I was still pregnant with you and you threatened to come early that I started realizing that in spite of all that the doctors were telling me- you were my baby. When people start tossing around labels and assumptions- it diminishes the fact that you are a baby perfectly formed by God. I realized that God had a perfect plan for my life, and that plan included you and your extra chromosome. As much as I struggled with your diagnosis, I began to see that God was at work in my life in a way that I couldn't even begin to understand at the time. He was trusting me with a very precious gift. "You are making a mistake. You picked the wrong person for this" I told God over and over again. I was reminded every time- God never, ever makes mistakes. This was His plan from the beginning of time for me and my husband. That thought was so extremely comforting to me. Why am I reminded of all of this tonight? Because here it is, almost four months after your birth, and I am tempted again to question God's working in my life. He has time and time again proved to be faithful to us. Why do I always forget and question Him again? I am writing this out for myself (and you) to remind me. There was a time a few short months ago that I thought I would never be happy again- and God has shown me over and over again how wrong I was. I have never been happier than I am right now as your mother. He has brought us so far as a family. He will continue to lead and direct us. Chubs, thank you for brightening our lives. Your Dad and I just said tonight- how did we live before Addison came along? Right now you are sleeping so soundly, and I am so thankful for what a wonderful sleeper you are. I just want you to know- I am working hard to learn this lesson of trusting God so that when you get old enough to understand, I can guide and teach you as you have your own struggles in life. I love you Addison, and I wouldn't change a thing about you. When you read this letter someday, I want you to know that we serve an Almighty God who is in control of every "happening" in our lives. You can trust Him. He has never let us down, and He will never let you down. We may not have an easy road ahead of us, but it doesn't matter because we are perfectly in the center of God's will, and that is the most peaceful, serene, happy place to be.

I love you!
Your Mother

p.s. we can talk more about that competitive thing when you get a bit older. i might be convinced to let you win a few games...because i just love you that much...(-:

Tuesday, May 18, 2010

It seems like Monday

Yes, this is what today was like....Addison and I just have different ways of expressing it...(-:
To start off, I approached my early band rehearsal, freaking out a little because I have had to miss so many extra rehearsals due to the extra maternity leave I had to take because of bedrest and the NICU stay and the Boston surgery trip. Our concert is one week from tonight. I stood in front of my class and informed them that we only had three short little rehearsals left before our concert and we had soooo much work to do. Half of the class raised their hand and informed me that pretty much 98 percent of the class would be on a field trip during our rehearsal on Thursday. I quickly amended the numbers- two rehearsals (counting today's) before our concert. Yikes. No pressure or anything. As I stood in front of the afternoon class explaining this same thing, the fire alarm then rang eating even more into our class time. All of this to say- stressful day at work.

I arrived home just in time for Addison's physical therapy appointment. Addison had a good day with Aunt Andi (who is doing a great job) and seemed in good spirits for her appointment. The therapists said that we would just see what would bother her, so we did her regular appointment. After the therapist left, Addison started getting extremely fussy to the point that she couldn't be comforted and I know that we overdid it in her appointment, so I gave her some Ibuprofen to help her with the pain. There is nothing quite as heartbreaking as seeing a baby in pain. It is so hard to know how best to help her. She is sleeping quietly now, but she was quite unhappy there for a while. The picture above was taken during this time. I was trying to get a pic of her cute outfit, but she wouldn't calm down long enough....poor baby.

Also, I took my sister Andi to my Zumba class tonight. I was so excited not only to burn some stress from my day, but also to share the class experience with my sister. We waited with a roomful of other women for about fifteen minutes and then were told that the instructor was a no show and that we should just go home. How disappointing.

While I had my camera out today, I just had to snap a picture of my new hanging flower baskets. These were my Mother's Day gift from Aaron. Aren't they beautiful? Trust the landscaper to have the best taste in flowers! They aren't hung yet, but I am enjoying them even while they are still on the front porch. (-:




Also, while I was outside, I took a picture of Aaron working on our garden....most people use hand tools for a home garden, but if my husband can use a large piece of machinery, he will. Also, if you will notice the swimming pool across the street. Still trying to figure out how I can get access to this pool. It is simply cruel that I can see it from my house, but I can't even pay to use it.....

Monday, May 17, 2010

Supermom Potion

I just finished whipping up what I have affectionately dubbed my "supermom potion" to drip down into Addison's stomach through her Mic-Key button while she sleeps. Because of her hard work and increased energy, this late night feed is the only one that we use the Mic-Key for. Because of this, I try to load it full of all of the medicines and vitamins that she won't take by mouth earlier in the day. As a result, it is a rather "tasty" snack that ends up smelling a bit like sewer water. Yuck. This supermom potion includes (but is not limited to) three ounces breast milk, one ounce formula, an extra ounce of dry formula to add calories, .5 ml Lasik, 1.4 ml Viagra (yes, my daughter is on Viagra. This is actually what it was originally invented for), .5 multi vitamin and if she is particularly fussy right before bed I will add 1 ml of ibuprofen to help her cope with the muscle pain around her incision. I used to add an iron supplement as well, but have stopped using that as formula includes iron and I don't want to constipate her. I think back to before I had her and to how little experience I had with babies and marvel at how far I have come. A year ago if you had told me that I would be measuring out medicines and dripping potions directly into my daughter's stomach all the while working around oxygen and so many other things that accompany parenting- I would have laughed at you saying that I could never handle all of that. It is amazing- "The Lord will never lead you where His grace can't keep you" or something like that. It is true.

Tonight, before my sister Andria and I left the room to fix dinner, we set Addison up on her boppy throne with the TV making noise up on the wall behind her. She usually is just very content entertaining herself.
Tonight, however, she wanted to be entertained by whatever that noise was that she heard behind her. She pushed her little self up with her very strong legs until her head was hanging off the end of the boppy (pictured above) and she was watching TV upside down. We don't let her watch TV, so this was short lived. But, I found it impressive that she worked herself into this position. Especially considering the fact that she has a healing, rather new incision on her side that includes healing muscles that were cut through. It leads me to think that perhaps it did hurt her, but she didn't allow pain to stand in the way of something she was determined to get....I think we have a stubborn one on our hands....(-:
You know, maybe I am just naive or maybe just blinded by the glasses of new motherhood and each one thinking that her child is a prodigy and a genius, but I just don't see "slowness" in my daughter. I am told that because of my daughter's extra chromosome, she will be slower, but she has exhibited to me a beautiful, unique personality, full of curiosity and brightness. Yes, she has struggled with some physical things related to this extra chromosome, but mentally, I feel that Addison is quite smart. I know that however this plays out in her development, she will have areas that she excels in and areas that she will have to work harder in- just like any other child. Sometimes I just sit and stare and try to "see" the Down Syndrome in her, and I can't. All I see is this beautiful baby girl who smiles at me because she knows that I am her Mommy, repositions her body so that she can watch TV when she knows she isn't supposed to, pulls out her nasal cannula off her face when she has just had enough, reaches out and puts one hand on Mommy and one hand on Daddy when she joins us in bed some early mornings, grabs onto her sleeves when I start to change her clothes as if to stop me from undressing her, gulps down her bottles with both chubby hands on top of it so that I won't pull it away until she is ready, has heart surgery and rallies just days later- enduring a 4 hour car ride home in her car seat while all stitched up down her side......this list could go on and on. She is amazing, smart, beautiful, and she is my daughter. I don't believe in stereotyping.

Saturday, May 15, 2010

Pictures by Aunt Andi


So much has happened this week. It is all rather fuzzy now. Just thankful to have made it through the Boston trip and am now back home. It is amazing. On Tuesday, Addison had heart surgery and looked a bit like she had been hit by a truck. Today, Addison was smiling and happy and you really couldn't tell by looking at her that she had been through something so tramatic. I guess it is true that babies bounce by amazingly fast. She was feeling well enough that we decided to do a bit of a photography session this morning to celebrate being able to take off the nasal cannula for a few hours at a time. These are the first pictures that we have of her face not covered by some sort of breathing apparatus. You can't imagine how excited I was to do these pictures. I have literally looked through them over and over again almost all afternoon. I love my little girl so much!













Thank you everyone for praying for us this week. By no means was it easy, but I am so thankful that we were able to have this surgery done. The improvement in Addison has been so noticeable! Eating better, smiling more, more alert, can cry longer (-:. So, so thankful for the huge change that we see now in Addison. Hoping to see even more improvement as she continues to grow and we can wean her off of oxygen entirely.

Mother goes back to Wisconsin tomorrow. I have been so thankful for her help these past two weeks. Especially with the trip to Boston- could not have done this without her. Addison loves her Grandma Ruth!

Tuesday, May 11, 2010

Heart Surgery Day

Yep, this is my daughter....lol,,.(-:


5:30 am this morning: I was lying in bed, hearing Addison begin to stir, and knew I needed to get up. After getting very little sleep since arriving in Boston two days ago, I thought how unfair it was that not only did I have to leave my warm bed, I also had to leave my warm bed to take my baby to surgery. She had the first surgery slot of the day which meant that not only did we have to be there at 7am, I also had to get up at 2am to do her last feed. I'm not complaining, mind you. I was glad to get this started as early as possible so that we could go home as early as possible. I just am not a morning person. There isn't enough coffee in the world.

We arrived at 7am, checked in and began to wait. While we waited, we were sitting next to a lady dressed a lot like an Orthodox Jew, and as we talked, I found out that she was one. She had come from Israel, bringing her six month old (who was about the same size as Addison) to have some holes closed up in her heart. We chatted, and I thought that she couldn't be that much older than me, and then I found out that she has eleven other children waiting at home for her, 15 and under (with two sets of twins in there somewhere), and I thought...she must be a lot older than me...still not sure of her age. When we finally got called to go up to surgery (closer to 8am), they called us up together. It was nice because Aaron wasn't there yet (he was stuck in horrible traffic coming in from Vermont) and her husband for some reason wasn't there either, so we walked up to surgery together, finding some comfort in the company.

It was now closer to 8:30 when we got to pre-op holding area. My Israelite friend and her baby were placed in the holding area right next to ours. Addison and I were then descended upon by a team of anesthesiologists who gave me a grape flavored sedative that I was to feed to Addison. Since she was smacking her lips by this point, she eagerly took the substance, stopping only slightly to make a face when she recognized that this was a foreign taste. I then held her, and she was very responsive....cooing and smiling. As the sedative began to take effect, these actions became a bit drunken. I was laughing at her and enjoying her being so transparent with how she was feeling. One of the anesthesiologists held out her arms and one of the others grabbed her oxygen tank. As I handed over Addison, she decided that the cooing time was over and that she did not like this sensation. She began to scream, and instead of being able to comfort her, I had to watch as they began to walk through double doors to an unknown area where the surgery would take place. One of the team had stayed behind and she immediately pushed a kleenex box in my hands. I hadn't begun to cry, so I was surprised by her anticipatory act. She then took me to a surgery waiting area where I would then wait until 10:15 before I heard anything. All this time, Aaron was still stuck in traffic, so I was all alone. But, I didn't really feel alone. I pumped, found out where to take my milk, found some coffee and an amazing cranberry orange muffin, and took the time to catch up on all of the supportive facebook posts. I could really feel the support of all of you praying for me because normally I would have been a bit of a basket case, especially since she was so upset when I left her, but I was pretty calm and confident that the Lord was at work here- who was I to worry and fret?

Aaron arrived a little before the surgeon came to give us a report. Everything went well, he said. Her hole was quite a bit larger than they had anticipated, but was now closed with a titanium clip. They were hoping that this would help dramatically reduce her pulmonary hypertension, but we would only know by waiting.

At this point, we were able to go to the Cardiac Intensive Care Unit floor and wait now in their waiting room for at least another two hours. They had to bring Addison up to the floor and then they took a while to clean her up before they would let us see her. It was funny because the waiting room was so crowded and I so desperately wanted to talk to my husband. So, we both logged on to our laptops and chatted on facebook. I'm sure we looked super dorky, but it was so nice to be able to just talk honestly with each other without people overhearing. When they finally called us in, we went in together to see our daughter who now has one fewer hole in her heart. This is how we found her: It was a bit of a shock, since she was looking so great before the surgery. I had a NICU flashback. It was really great at this point that Aaron was there. She was still out cold, so we assured ourselves that she was indeed OK and then finally went to find something to eat.

It was later in the day, after waiting by her side for hours, that she started to wake up. I had some lovely classical music playing for her and we kept talking to her- assuring her that we were here for her and that we loved her. While she was sleeping, she managed to get her hand out of her restraints four times....the nurses were as baffled as we were as to how she managed this....we were reminded once again of her escape artist tendencies. Also, when she was waking up, she started to choke out her intubation tube. At that point, they decided to take it out. (-:

Now, Aaron has gone back to Vermont- Mother is holding down the fort at the hotel, and I am spending the night by Addison's side. Her throat is pretty sore- she sounds a bit like a frog with a cold when she cries or tries to make any noise. They allowed me to give her a bottle at 8:00, and she all but inhaled it. I think it felt good on her throat, and she had been smacking her lips since 5:00 when the intubation was taken out.

Hoping she continues to improve throughout the night and tomorrow. We are looking at coming home on Thursday if all goes well.

I put her friend up against her in bed, so she wouldn't feel alone when I had to leave to pump and such...

This was this morning before the surgery...she was so happy and alert...hope she returns to this state soon.
This was yesterday, all dressed up for a day of appointments. She had a chest x-ray; blood work; an echo, an EKG; was weighed, measured, monitored etc; met with her surgeon, cardiologist and anesthesiologist; and had all sorts of questions and information and "what ifs" thrown her way; settled out insurance information; and it seems like other things that I can't even remember. Hardly even time to eat lunch. It was such an exhausting day. So glad to have my mother there for a second pair of hands. We also met lots of kindred spirits. One mom had a baby who only had half a heart. One mom had identical twin boys that were two weeks older than Addison. Both had Down Syndrome and both were having heart surgery today. One mom had a baby who was only able to use one lung. The more we talked to the other parents, the more confident we felt in the surgeons here at Boston's Children Hospital.



Snug as a bug in a rug...all bundled up in her makeshift bed in the hotel room. She seemed to love it!