Thursday, November 19, 2009

Don't you just love it when a poem or story can really move you?

On another post I will have to share my experience at the CT Down Syndrome Congress convention. But for now I want to mention that I won the door raffle and picked up several books that I am very excited about. One was "My Sister, Alicia May." For a long time, in the back of my head, I have been wanting to get a sibling with Down syndrome book for Nathaniel, but never got around to it. This book was so good it moved me to tears. Not only is the little darling girl, Alicia May, a spirited strawberry blonde like Penny, but Alicia May also had heart surgery when she was born just like Penny. I just loved the story and Nathaniel loved it too. Thank you Nancy for donating your book of poems, the book "My Sister Alicia May" and the permision to post your poem and for donating your book. I would have missed out for sure on this great read!!!

You can click on Nancy Tupper Ling's name below to link over to her website, or click on the title to link to the poem itself. I highly recommend you check it out!

Our Fragile Emissary
By: Nancy Tupper Ling

With modern screening and such
they wonder why
you're here, on this earth
in our home
and in our arms,
after all, anyone
with any sense would have resolved
this problem of you
pre-birth, pre pain.

Blonde Beauty,
tiny as you are,
you catch their stares,
strangers' second glances
into tender baby blues.
And your young
sweet ears hear whisperings
("Down's," "defects")
words dropped loosely
at extra-chromosomed girls.

With such stinging receptions
how we long to shelter you,
surround you; keep your
gentle smiles to ourselves.
Instead, we hold you
up, for others to see;
let you, our fragile emissary
speak to an imperfect world.

Wednesday, November 18, 2009

Whew! I've been gone a long time

Since I am no longer working behing a computer eight hours a day, I find it hard to sit down and update my blog. Actually I have been a little busy. I took the Praxis II exam for high school math teachers and I have been finishing up my admissions essay. But more importantly, I have been settling in as a stay at home mom. I actually do house work. Imagine that!! I was so spoiled by Scott. But I need to pull my own weight and do stuff so that he wants to keep me around :)

I have Halloween pictures on my facebook account. Unfortunately, after I got the photos uploaded to facebook, but before I got around to uploading them to flicker or to my external hard drive, the device that I use to connect the memory stick to the pc broke so I have to get a new one. It is only $15 a Walmart, it is just a matter of getting over there. The card slot on my pc has been broken for a while and we lost the cord that came with the camera, it is not a typical usb cable. The cost to replace our Sony cord is $80 so I would rather get that other thing. Too bad, our little princess was great!

Penny is doing all kinds of amazing things and I have to say that I love staying home with to be a part of development. She says circle (kirkle lol) and draws a round sort of thing that closely resembles a circle. She started to say "up" on Monday and yesteday I swear she said "yeah." We do a lot of coloring and work with shapes. I sort of dabbled with color recognition, but I don't know if she is ready for that. She does get really engaged with shapes though so I am going to stick witht that.

We hit a museum once sometimes twice a week since we have free admission to practically everywhere. And I still have time set aside for her naps.

Saturday, October 31, 2009

HAPPY HALLOWEEN

Get It Down; 31 for 21What are your pumpkins being for Halloween?

Friday, October 30, 2009

Cardiology Check up.

Get It Down; 31 for 21Penelope had her annual cadiologist check up today. I must admit that I am a little bit nervous going in. I know I shouldn't be because Penny is obviously doing really well, but there is always a little part of me that waits for the bad news.

WELL, today we learned that Penny is really close to 30 lbs, and she is 34 inches. We also learned that everything looks good! The insuffiency in the valve was measured at a trivial amount. Her branch pulomanary areteries have grown as they should!!

Here is hoping that her next surgery can wait until she is 7 or 8 years old. YAY!!!!

Thursday, October 29, 2009

Penelope and CHD - Part VII

Get It Down; 31 for 21
You can read where I left off in Part VI right here.

Sunday night, June 3, 2007 brought a tough decision. At the advice of Penelope's primary care nurse both Scott and I went home that night to get a good night sleep and spend time with Nathaniel. I can't remember the time, but we were asked to come in early the next day for us to say good bye and good luck to Penny.

Of course, we were running late so Scott and I went running to Penelope's NICU alcove so that we could put kisses all over her little body. We prayed that she would be returned to us. Next we had to pack everything up since she would not be returning to the NICU. The plan was that she would go to the PICU (pediatric intensive care unit) and then from there to a regular floor.

Penelope was 6 days old this morning, but she had never eaten anything. All her nutrition had been i.v. up until this point so I had a ton of those 2 oz cylinders with my breast milk which I needed to pack up and ship out. Eventually, the team was ready to transport her, and Scott and I were packed up and the race began. I say race because it was quite a long trip from the NICU in Hartford Hospital to the facilities at CCMC where she was going to be dropped off. There were no less than four professionals walking with us including her primary nurse. They all wanted to rush because they did not want her to crash while en route to the operating room.

We went down an elevator to the bowels of the hospital and then through a long tunnel that ran under ground, under the roads to the parking garage. There were two sets of steel security doors on the Hartford Hospital side and after what felt like an eternity of walking, anther 2 sets of steel doors on the CCMC side. When the first set had been visible, I thought, great we are almost there, but after we passed through those doors, another long corridor loomed ahead. Finally we got to the end and found another elevator on the CCMC side. We turned a corner and it was here that I had to say good bye to my little baby. She looked so helpless in the isolette that she was transported in.

Our hope was that she was going to be a good candidate for the full repair. This meant that the hole between her atriums and the hole between her ventricles would be stitched up. Also, a donor pulmonary artery would be placed where hers was missing. We were warned that Penelope would look quite swollen after the surgery and that the earliest we may not see her until 4pm if the complete repair was done, but maybe earlier if the a shunt procedure was done.

We waited, and waited. I kind of had this feeling that someone would give us hour by hour plays, but that was not accurate at all. We were assigned a family room where we could sleep as long as our child was assigned a room in the PICU. The regular floors in the hospital allow (and accomodate) rooming in for the parents. However, they have a strict policy against parents sleeping in the PICU. That was fine with us, the family room was one of four bedrooms that shared two bathrooms (with shower facilities) and a kichenette. I thought it was great! We didn't have to run back and forth to home and we only lived 15 mintues away. How great was this anemity to those traveling hundreds of miles!

Finally, after waiting in several different waiting rooms looking for someplace to feel comfortable, we retreated to our room. At last, at 1:15 pm, the Dr. himself knocked on our door. We shared a meeting in the hallway to the rooms, and were told that Penny's coronary arteries were not in a good spot and she was outfitted with a BT shunt. He could tell that we were disappointed for this because this meant we would have to come back in 6 months or so, but he said it was definately the best for her. He went on to admit, some doctors are more agressive and perhaps Boston would have done the full repair to avoid having another invasive surgery, but he liked to err on the side of caution to avoid damaging a vitail coronary artery and so he stuck with the shunt. We thanked him for his compassion and his hard work. We knew she had been in good hands!!

After what felt like another eternity, the closing team finished up with Penny, and we were allowed to meet her in the PICU room. I can honestly say about this experience that I walked right in, and then I walked right out. That baby in the bed was not mine. But the name on board clearly placed baby Ringrose to that room. Penelope's ICU nurse came in to explain all of the pumps and the breathing tube (in case we didn't already know about it) as well as the foley catheter, and the chest tubes. She told us that Penny was retaining fluid after the surgery which was more than common and that our baby was being administered lasix to help her heart in getting the fluid off of her. It was scary to go in there an sit by her bedside. I couldn't even imagine having to go through that myself and here was this little girl hooked up in so many places.

Wednesday, October 28, 2009

CraZy DreAm I HaD

Get It Down; 31 for 21

Anybody that knows how to interpret dreams, your comments are welcome.

A large convention type hall was used for a meeting of people with Down syndrome and their families. I haven't yet been to a CDSC convention or a Natainal convention so I am not sure what they are like, but I have a pretty good idea. I was alone with Penny, because in my dream Scott stayed home with Nathaniel. I had been having a great time getting to know other families and other children and some adults with Down syndrome too. This dream felt so real, like I really knew these people.

At some point, it was like there was a lock down. We were all trapped in this hotel that housed only the convention people. Armed guards could be seen through windows at pretty much every locked exit. Obama was visible through a large glass, sitting behind his presidential desk with body guards standing on either side of him. Suddenly, his voice came on a speaker and he announced that we were all to be terminated since our children's lives were not ended before they were born. I don't remember the exact words in the dream, only that the method of execution for us was that gas would be piped into our convention space.

I cried so much in this dream. We all protested and demanded to know why our children's lives were not valued. Additionally, many of us had family left at home and we insisted that this was good reason to let us all live. Obama was unwaivering in his intent.

Luckily, it was a huge space that we were confined to, so in my dream, the gassing took an infinitely long time to produce any effects. I noticed a police officer (dressed unlike the guards) in a window and I held up a sign and waved my arms to get her attention. I communicated to her that Obama was in this building with us and he intended to murder us all. This officer was able to confront Obama and call off the mass murder. But he gave me a terrible look and let me know that this was not over, especially with me.

SO, what the heck does this mean?

Tuesday, October 27, 2009

Who has the time?

Right? You know, to look through old posts when you only just started following a blog. My blog is so boring anyway. . .

Well, I just watched this video myself today and I must say, this is the first time I have seen this in at least a year.

http://babygirlpenny.blogspot.com/2008/01/ok-so-scott-and-i-figured-this-video.html

Click above to track back to one of my first posts, about 20 months ago to see baby Penny! This is why my blog name is baby girl Penny afterall!

I am such a proud Momma!

Get It Down; 31 for 21

So, word number five in Penelope's vocabulary? Is it Mamma? Madre? Mum? or Mother? NO. How about the word, "butt!"

. . .

. . .

. . .
I have to admit I am kind of to blame on this one. But when your 2 1/2 year old is running around the house happily smacking herself on the bottom yelling, "Butt, butt, butt, . . . butt. . . butt, butt. . . butt!" it is a wee bit difficult to hold back the smiles.

{Sigh} I love that girl!!