Let it Snow, Let it Snow, Let it Snow!!!

December 20th, 2009

We were completely snowed in yesterday, and it was wonderful!  My husband was home on Friday, which allowed us to run errands and be out of the house in anticipation of the huge snowfall that was predicted.  So, I was only too happy to stay indoors all day and watch the beautiful snow fall.  It was the perfect excuse to be lazy and enjoy being together as a family.  We slept in, had a leisurely home-cooked breakfast and spent all day in sweats.  We often are so busy, especially around the holidays, that we don’t take the time to just sit back and enjoy the simple things in life like just being together…I’m as guilty as anyone!  I, for one, plan to do a better job of this during the New Year!

We had so much fun watching and playing with Alexandra.  When we put her down for night night, we were treated to a rousing rendition of Jingle Bells over and over  and over again through her monitor.  She also keeps joking around that she’s not just smart…she’s KMart Smart.  If you’ve ever seen the commercials, you will know what she’s talking about!

How grateful we are that she is doing so well.  We certainly have many blessings to count this holiday season!

Happy Holidays to everyone!

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The Things They Remember!

November 20th, 2009

Alexandra had a check-up at her cardiologist earlier this week. Since she had an echo the last time, she didn’t need to go through that this time around. However, she did go through all the other testing. I am happy to say that everything looked great! We were very excited to see her oxygenation level at 97!

It’s funny the things children remember. We were on our way out and passed by the door of the echocardiagram room. The technician (Sue) was standing at the door talking to someone and, of course, talked to Alexandra and commented on how big she is now. Alexandra asked if she could go into the room. When we told her she didn’t have to go this time, she said “Okay, but next time I go in and get a book and animal crackers!” (Every time she has an echo, she eats countless animal crackers that Sue has, and Sue always gives her a book after it’s over.) Sue thought it was so cute that she pulled out a book to give her anyway.

I don’t know how many others have read the whole large volume of Curious George from cover to cover, but we have been working on it each night at bedtime. The other night we were at a part when George was in the hospital, and they were taking an x-ray. I was about to turn the page when Alexandra flipped it back over and said “They take picture of George like they did of me when I was in the hospital!” She even talked about Daddy wearing the Dalmations when she was having it done! (The protective apron they had him wear had a 101 Dalmations themed print on it.) I was surprised that she remembered the apron but was more shocked that she would even realize that what was happening to Curious George in the illustration was the same thing she had gone through. I had to keep back some tears, as memories of that month flooded back into my mind.

The good news is that while something brings up an emotion from time to time, it seems almost like a distant memory. She is doing so well, and I feel like we can really move forward with our lives now!

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H1N1 Scare

October 26th, 2009

It’s been a while since I have posted, as I’ve been very busy on something I will discuss at a later time. However, I wanted to talk about how nervous we all are about the H1N1 flu. Alexandra was to have started preschool this year, but all of her doctors warned us against it until she was able to get her H1N1 flu shot. Her pediatrician was supposed to have had it over the weekend; however, their shipment has still not arrived. The good news is that we were able to get it at the Government Center on Saturday, but not before we had a bit of a scare.

Alexandra goes a couple of times a week to a woman who provides daycare in her home. I dropped her off on Friday morning and had my day planned out. Unfortunately, an hour later I received a call saying that the sister of one of her daycare kids was diagnosed with H1N1, but the the boy’s pediatrician had said it was okay for him to come to daycare. If you have a child with a congenital heart defect or other immune system compromising illness, you are fully aware that this little boy could be a carrier and pass it on to your child. Therefore, I got in my car and picked Alexandra up right away. It totally ruined my plans for the day, but I know I did the best thing to prevent her from getting sick. I’m not naive enough to believe that I can always protect her; however, I can certainly take all precautions when I know there could be a serious issue.

As I stated earlier, she has now had her H1N1 shot, but she will need a second dose in a month. We are hoping we can keep her well until then but are a little relieved now that she has had at least the first dose.

I would be interested to hear how other families are coping with the H1N1 or regular flu this year, especially as it relates to child care and work schedules.

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3 Years Old!

September 18th, 2009

I can’t believe how the time has flown by since my last post! It’s been quite a whirlwind trying to deal with personal and business issues, getting Alexandra ready for what was supposed to have been her entry into preschool and, most importantly, Alexandra’s 3rd birthday! It’s amazing to see her now having so much energy and being so smart and funny with all she has been through in her short life. No one would ever believe this is the same child who struggled so much just three months ago!

While her birthday was actually on Tuesday, the 15th, we threw a party for her on Sunday afternoon. We knew it was probably going to be the last of the small parties, as we know as soon as she gets into school, our little social butterfly will want everyone to come to future parties! She picked Cinderella as her theme, so everything had Cinderella on it. We even bought her a Cinderella costume to wear during the party, knowing that she will be able to wear it for an upcoming TenderHeart event where the kids dress in costume as well as for Halloween. We took her out to dinner on her birthday and had a great time.

Since March, we had planned for her to attend preschool which started this week. Unfortunately, in speaking with her pediatrician and her cardiologist, they strongly recommended against having her start until she has been able to get her H1N1 flu shot. She was very excited about going, but I don’t believe she understands it has already started and that she is missing it. That’s a good thing! I wonder how other parents of CHD kids are dealing with and preparing for this upcoming flu season. Let me know!

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Robbed?

August 11th, 2009

I met someone new at church on Sunday, and we started talking about Alexandra’s diagnosis and subsequent surgeries. She asked me “Don’t you feel robbed?” referring to the things you miss when you are constantly dealing with medical issues with a newborn. I have to admit, I have thought about that many times but try not to dwell on it.

I missed being able to just relax (if there is such a thing!) and enjoy being a first-time Mom. The first six months were an absolute blur, and it didn’t get much better over the next two years. After her diagnosis with hypothyroidism at six days old, we had to administer daily medication. At eleven days old when she was diagnosed with the heart defects, I think we went into shock. I couldn’t even look at her without bursting into tears. We also had to begin a course of additional daily medications. It’s not easy giving a newborn multiple medicines throughout the day and night! Then, of course, there were the doctor appointments! Between the pediatrician, cardiologist and endocrinologist, we were at a doctor’s office two to three times a week for most of her first year.

Her first surgery in Philadelphia came when she was 5 1/2 weeks old, and the second was at six months old. Each time, we were there almost two weeks. In between those surgeries, my Dad died of a heart attack related to years of diabetes. If you haven’t been through a similar situation, you can’t imagine the constant stress that is always surrounding you. Everyone worries about their children; however, this was really something to worry about not knowing how things were going to go.

Things eased up over the next two years, but knowing that a third surgery was coming always loomed in the back of our minds. Also, during this time, our support group lost a couple of members ranging from newborn up to over three years old. It was devastating to be reminded how fragile these little lives can be.

So, was I robbed? I guess in a way, maybe. The one thing that bothers me the most is that I missed catching all the dates of when she did something for the first time. However, at the risk of sounding cliche, the experience really has shown me how precious life is and, while it’s not always easy to remember, we must try to make the best of each and every day no matter what is going on in our lives!

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Congenital Heart Futures Act

August 5th, 2009

We need everyone’s help! I am encouraging everyone to support the Congenital Heart Futures Act. This bill defines congenital heart disease as a life-long disorder and calls for federal investment in congenital heart disease research and education and the creation of a national congenital heart disease registry. This bill is the first-ever legislation introduced to address the life-long needs of congenital heart patients. As the mother of a child born with complex congenital heart defects, I know how important this bill is to every family affected by congenital heart defects. In order to follow this bill, please go to www.thomas.loc.gov. In the Senate, it is referred to as S. 621; in the House, it is H.R. 1570.

While there is bi-partisan support in both houses of Congress, there is still a lot of work to be done. For those living in MD, Sen. Barbara Mikulski is considered a pivotal vote. Other Senators considered pivotal are: Sen. Hagan (NC), Sen. Bill Nelson (FL), Sen. Whitehouse (RI), Sen. Kohl (WI), Sen Milkulski (MD), Sen. Sanders (VT) and Sen. Schumer (NY). If you know anyone in any of these states, you may want to consider reaching out to them to contact their Senators to lobby them for their support.

As part of this effort, the National Congenital Heart Coalition (NCHC) has partnered with Guide Consulting to set up appointments with individual representatives and senators for those that are interested in lobbying. If you are interested in taking place in one of these meetings, you can email NCHCLobby@gmail.com and explain that you would like to lobby, and they will take care of setting up the appointments and will provide you fact and information sheets and any other information that you need.

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Giving Back

July 20th, 2009

It has been a very busy week or so. We took Alexandra on her first trip to Snowshoe, WV since her surgery. I was a little concerned having her at that elevation (her nailbeds used to turn a little blue there at times) as well as being so far away from quality healthcare. However, my concerns were unfounded, as she had a great time and had no issues whatsoever. In fact, Friday night there was a live band in the village, and she danced continuously for over an hour. I sat there and marveled at how far she has come in the last 1 1/2 months. Snowshoe is such a relaxing place for us, so it was great for all of us to be able to unwind a bit.

Alexandra has been enjoying spending more time with both of her grandmothers the past two weeks, and it’s been nice getting her out of the house more besides going to doctor appointments!

One thing that we decided while at Ronald McDonald House (RMH) in Philadelphia was that we wanted to give back. Therefore, we arranged a visit with our local RMH to see how we could contribute through volunteerism and/or by donating needed items. This house had such a different feel from the one in Phildelphia as it is new and much smaller. However, it felt warm and very homey, and I know how much those who stay there must appreciate it. After the tour, I decided to become a committee member on a fundraiser for next year, and we plan to donate items from their “wish list” when we can. We were so grateful for how much we were helped by RMH, friends and family that we feel it is very important to give back in some way. Between helping RMH and using part of the proceeds from any sale through Mighty Beautiful Hearts for CHD related causes, I plan to help as many other people as I can.

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Taking Some Time

July 9th, 2009

I can’t believe we have been home over two weeks now! The time has flown by trying to get settled back in and getting back into a routine. While we’re going through the motions, we don’t quite feel like things have returned to normal yet for us. In speaking with our Priest, he told us a story about how the Native American Indians would only walk so far on a given day, as they believed their spirits had to catch up with their bodies. It was a great analogy, as we feel like our own bodies are here but our spirits haven’t caught up yet either! We need to remind ourselves that it’s okay to take some time getting back into the swing of things.

Alexandra loved being in the 4th of July parade last weekend and has been doing very well. However, I had a bit of a scare this morning. She wanted to take a shower with me, so I let her for the first time since we have been home from Philadelphia. After I got her out and dressed, she started acting a little out of sorts and asked to go to bed, which is highly unusual! I put her in bed, but she immediately wanted to get out. I took her back in our bedroom, where she proceeded to vomit repeatedly for the next several minutes. I got her cleaned up and left a message for her cardiologist to call me. She ended up vomiting again, so I had to clean her up and change her a second time. As some of you may know, vomiting can be a sign of fluid build-up. I kept looking closely at her face for signs of puffiness, which only made her more upset.

The cardiologist finally called, and I explained how everything happened. Apparently, getting nauseous in a hot shower is a very common occurrence in his cardiac patients. According to him, a number of his patients can also pass out in the shower. He felt that this was the problem since she seemed fine and was running around by the time he called. So, I guess Alexandra will just not be taking showers with Mommy for a while!

I had a wonderful opportunity to go out today and have lunch with a friend. It was such a nice treat and made me realize that I really need to do more things for myself now that Alexandra is doing so well!

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Letting People Help

July 3rd, 2009

Alexandra had a great cardiology appointment yesterday.  The fluid around her heart seems to have finally disappeared, and her cardiologist has cut her diuretics even further.  She has been on one of them twice a day since she was diagnosed at 11 days old, and now she only has to take it once a day.  We are thrilled that she is needing less and less medicine!

We also received approval for her to ride in the 4th of July parade.  She remembers balloons and waving at everyone from last year and is excited about doing it again this year!  However, we will not participate in any of the other activities throughout the day as we usually do.

We have never been people to ask for or accept help, but after the last month or so, we have been grateful for the many offers of assistance from family and friends.  Friends and neighbors have run errands for us, and TenderHearts support group and church members have provided meals.  I’m now a firm believer that you need to accept offers of help, as you simply cannot do everything yourself!

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Trying to Settle In

June 27th, 2009

We’ve been home a few days now, and it is really great being here. However, getting back into a routine seems to be eluding us. We were so exhausted when we got back that our first priority was to catch up on some much needed sleep. We have had a month’s worth of clothes to wash and put away. We have bags of mail that still need to be sorted through and filed. Alexandra has bags of toys and gifts that we need to find a place for. It can feel quite overwhelming!

We are blessed to have numerous friends providing meals for us and running errands. I don’t know what we would do without these terrific people!

Alexandra had her first appointment with her local cardiologist yesterday, and it went well. She had to go through all the usual tests to include another EKG and Echocardiogram, but the fluid around her heart has lessened. We were very excited to hear that but were disappointed that her oxygenation level was only a 92. Her doctor was not concerned though and assured us that it will fluctuate. He did cut out one of her diuretics, and we need to go back next week to see if the fluid stays off without this diuretic. If so, we may be able to cut back even more on her other two diuretics.

Over the next week, we will continue to get settled back in and enjoy being together at home!

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