My mom that is. She pulled into town around 7:30 pm, just in time to see kaitlyn for 30 minutes before bed time. It was a small relief to see her. It is slightly reassuring that we are starting on this journey, for better or for worse. At least it is getting started and I am not sitting around and waiting for things to happen. I am in the office now. My undergrad from the summer has a poster session in about 7 minutes. I will attend that then head back home, pack up my mom's SUV, and then her, the kids and myself will head back to St. Charles, MO. Jim is staying behind to work. He is out of paid leave and will join us in St. Charles in about week, just in time for the surgery (we are planning on the surgery). Jim doesn't want to be apart that long but he is happy to know that he will be able to get all the sleep his little heart desires while we are away...or at least the oppertunity will be there. I am sure he will find himself on Facebook most of his free time, tending to his Farmtown. It is strange how a grown man can be drawn into such things.
I will keep this blog updated as we go through appointments. And the day of the surgery I will have constant updates and we are updated on the progress of the surgery. I am still looking for things to keep my fingers and mind busy while the surgery proceeds. I bought a lot of yarn..Landon will have a few new blankets when all is said and done. Now if only I could bring my sewing machine. I have a lot of sewing to do! I will have to post pictures of my projects :)
Kaitlyn has decided that she likes to jump. Unfortunately, she like to jump OFF of things and her coordination in the landing department is seriously lacking. You think it would stop her, but it doesn't. Crazy girl. I have also found that she will eat nearly anything if I put sprinkles on it. It's kind of nice...but disturbing when mashed potatoes have sprinkles.
Friday, July 24, 2009
Thursday, July 23, 2009
Old Men and Hair
So I have realized that hair coloring for men is just not as advanced as it is for females. That, or men just can't follow the dying procedure printed on the paper. To me, it is just completely obivous when I see a man who you know has 100% grey hair with a boxed dye job. It looks so fake...nearly like a wig. I have to chuckle to myself. Who are they kidding?
Tonight my mom is coming into town. She will watch the kids tomorrow while I finish up some things here in the office. Then she is driving the kids and myself back to St. Charles. Landon has his Hail Mary appointment Monday. Basically we are going to check to see if by some miracle his valve loosened up after being released. BIG FAT chances are that it will be the same as before.
Then a week from today we go back to Children's hospital. Of all things, the boy's testes aren't quite right. One of them has fluid built up around it so it is pretty gigantic when compared to the other. I noticed this right away but when I asked my husband, he said it was normal for them to be not symmetrical..i figured it was like women and their breast. But after he checked them out some more, he said they were too different. Sure enough, at the 2 month appointment the Dr confirmed the excess fluid. So we go see the Urologist next week as well to start up the patient process. This could clear up on its own but it could also become herniated. So we will keep following up with that.
A small milestone, as of right now, all the hospital bills are paid in full. I know this is only for a short time, but at this exact moment, the balance on all accounts is ZERO! Insert a happy dance here.
Tonight my mom is coming into town. She will watch the kids tomorrow while I finish up some things here in the office. Then she is driving the kids and myself back to St. Charles. Landon has his Hail Mary appointment Monday. Basically we are going to check to see if by some miracle his valve loosened up after being released. BIG FAT chances are that it will be the same as before.
Then a week from today we go back to Children's hospital. Of all things, the boy's testes aren't quite right. One of them has fluid built up around it so it is pretty gigantic when compared to the other. I noticed this right away but when I asked my husband, he said it was normal for them to be not symmetrical..i figured it was like women and their breast. But after he checked them out some more, he said they were too different. Sure enough, at the 2 month appointment the Dr confirmed the excess fluid. So we go see the Urologist next week as well to start up the patient process. This could clear up on its own but it could also become herniated. So we will keep following up with that.
A small milestone, as of right now, all the hospital bills are paid in full. I know this is only for a short time, but at this exact moment, the balance on all accounts is ZERO! Insert a happy dance here.
Monday, July 20, 2009
Survival Mode and Sugar Daddies
No, they are not related. Just two things from my day.
The first being the most difficult. Since the day we found out that our son had heart issues (at 29 weeks pregnant) I have been in survival mode. Going day to day, doing what I have to do to make sure the pregnancy, delivery and his every day care was, well, taken care of. Pushing back to the furtherest part in mind, the real fact that Landon's heart was/is not OK. Yes, there are several things that the Dr's can do to help to eliviate the side effects of his defects but there is NOTHING they can do to "fix" the defects. I simply pushed back the thought of complications with surgeries, oxygen levels, pressures of his ventricles, etc just to stay sane on a day to day basis. Then there are the times when I come out of survival mode and face the situation we are in. It's hard. No one can promise that Landon will be "normal" when it comes to heart function. There is no promise that replacement/repairing the defects will be successful and there is no promise that there won't be complications with the open heart surgery. It's very real and very scary. Tears. Lots of tears. Then I suck it up, dry my face and continue in survival mode. Why am I telling you all of this? Basically because I need to write it out. It makes me feel better. And with Landon's appointment date getting closer and closer, I need to do all I can to make myself feel better.
Ok...off of the heavy stuff. Onto something I found quite funny today. There are many things that go along with being at a large university. One of those "things" are the large amount of international students. I love having them here. I learn a lot from them. I was sitting next to a large piece of equipment today when an international grad student was sitting next to me. For lack of anything else to read, she had managed to bum off her labmate a "Men's Health" magazine. She opened it to the commentary from the editor and it was labelled "Sugar Daddies" to which she pointed it out to me and asked me to explain what a Sugar Daddy was...and no, the article was not referring to candy.
back to the grind
The first being the most difficult. Since the day we found out that our son had heart issues (at 29 weeks pregnant) I have been in survival mode. Going day to day, doing what I have to do to make sure the pregnancy, delivery and his every day care was, well, taken care of. Pushing back to the furtherest part in mind, the real fact that Landon's heart was/is not OK. Yes, there are several things that the Dr's can do to help to eliviate the side effects of his defects but there is NOTHING they can do to "fix" the defects. I simply pushed back the thought of complications with surgeries, oxygen levels, pressures of his ventricles, etc just to stay sane on a day to day basis. Then there are the times when I come out of survival mode and face the situation we are in. It's hard. No one can promise that Landon will be "normal" when it comes to heart function. There is no promise that replacement/repairing the defects will be successful and there is no promise that there won't be complications with the open heart surgery. It's very real and very scary. Tears. Lots of tears. Then I suck it up, dry my face and continue in survival mode. Why am I telling you all of this? Basically because I need to write it out. It makes me feel better. And with Landon's appointment date getting closer and closer, I need to do all I can to make myself feel better.
Ok...off of the heavy stuff. Onto something I found quite funny today. There are many things that go along with being at a large university. One of those "things" are the large amount of international students. I love having them here. I learn a lot from them. I was sitting next to a large piece of equipment today when an international grad student was sitting next to me. For lack of anything else to read, she had managed to bum off her labmate a "Men's Health" magazine. She opened it to the commentary from the editor and it was labelled "Sugar Daddies" to which she pointed it out to me and asked me to explain what a Sugar Daddy was...and no, the article was not referring to candy.
back to the grind
Tuesday, July 14, 2009
A tease of some pictures
I owe a lot of pictures. These are older ones from mid June. I promise to get more recent ones up here soon .
Small Glimmer of Hope
I spoke with Landon's cardiologist. First, I was suprised to be able to speak to him directly on the phone. He is one busy guy. I figured I would get a nurse calling me back.
Small Glimmer of Hope: he says there is a small chance that Landon's valve could loosen up after it heals from the Cath. A small chance....but a chance. This would prevent surgery. Crossing fingers.
Echo is scheduled for the 30th with tentative surgery on the 3rd of August.
Small Glimmer of Hope: he says there is a small chance that Landon's valve could loosen up after it heals from the Cath. A small chance....but a chance. This would prevent surgery. Crossing fingers.
Echo is scheduled for the 30th with tentative surgery on the 3rd of August.
Monday, July 13, 2009
Jump Start
Time to jump start this blog. It has been a long time coming. Life has been incredibly busy and I will try to give a very brief summery.
1. In February we found out that our boy had a heart defect called Ebstein's Anomally. To boot, he also had another heart defect called pulmonary stenosis. I was sent to a high risk OB. High risk OB here in town told us that we couldn't deliver in town because the hospital cant handle pediatric cardiac surgery. I was referred to St. Louis, Mo.
2. Before my first appointment in St Louis, I went into preterm labor at 34 weeks along. I was drugged up here at the local hospital and sent to St Louis where labor stopped. I remained in St Louis for the baby's safety and had contractions on and off for two weeks
3. sure enough, at my 36 week appointment I go into labor. Called jim who was in champaign,.....no answer. Calll again and again and again...no answer. Once admitted I called our friend who went over and woke up Jim. Landon was born via c-section at 2:25 pm (i went in for an 11 am appointment) weighing in (nearly 4 weeks early) at 7 lbs 15 oz (yes, one OUNCE shy of 8 lbs) and 19.25 inches long (yes the 0.25 inches is that important to me). Jim didn't make it on time. My mom was the lucky one by my side. Horrible recovery this time.
4. Landon was rushed off to Childrens Hospital (connected to the hospital that I was in ) and placed in the NICU. After 24 hours he wasn moved to the Cardiac Intensive Care Unit (CICU). On day 5, he had a balloon catheder of his pulmonary valve. All was good.
5. 6 weeks later, the valve had shut back up. Repeated balloon catheder this past week and it failed.
6. Open heart surgery is scheduled for the end of the month.
So as you can see, very busy.
Kaitlyn absolutely loves her baby brother and is very protective of him. She is also building more and more of a vocabulary everyday. She never stops talking and is now using complete sentences. However breaking her of the paci is completely a different issue. She is active in her gymnastics class at the little gym. She also enjoys play dough, coloring, and watching any Disney Princess movie out there. She is also a fan of the movie Bolt. She likes having her nails painted. We also also dabbing into potty training but that isn't really going anywhere right now.
So that is for now. Like I said, I am hoping to jump start this blog and start adding pictures as we go along. I am sorry it took so long for me to do this.
1. In February we found out that our boy had a heart defect called Ebstein's Anomally. To boot, he also had another heart defect called pulmonary stenosis. I was sent to a high risk OB. High risk OB here in town told us that we couldn't deliver in town because the hospital cant handle pediatric cardiac surgery. I was referred to St. Louis, Mo.
2. Before my first appointment in St Louis, I went into preterm labor at 34 weeks along. I was drugged up here at the local hospital and sent to St Louis where labor stopped. I remained in St Louis for the baby's safety and had contractions on and off for two weeks
3. sure enough, at my 36 week appointment I go into labor. Called jim who was in champaign,.....no answer. Calll again and again and again...no answer. Once admitted I called our friend who went over and woke up Jim. Landon was born via c-section at 2:25 pm (i went in for an 11 am appointment) weighing in (nearly 4 weeks early) at 7 lbs 15 oz (yes, one OUNCE shy of 8 lbs) and 19.25 inches long (yes the 0.25 inches is that important to me). Jim didn't make it on time. My mom was the lucky one by my side. Horrible recovery this time.
4. Landon was rushed off to Childrens Hospital (connected to the hospital that I was in ) and placed in the NICU. After 24 hours he wasn moved to the Cardiac Intensive Care Unit (CICU). On day 5, he had a balloon catheder of his pulmonary valve. All was good.
5. 6 weeks later, the valve had shut back up. Repeated balloon catheder this past week and it failed.
6. Open heart surgery is scheduled for the end of the month.
So as you can see, very busy.
Kaitlyn absolutely loves her baby brother and is very protective of him. She is also building more and more of a vocabulary everyday. She never stops talking and is now using complete sentences. However breaking her of the paci is completely a different issue. She is active in her gymnastics class at the little gym. She also enjoys play dough, coloring, and watching any Disney Princess movie out there. She is also a fan of the movie Bolt. She likes having her nails painted. We also also dabbing into potty training but that isn't really going anywhere right now.
So that is for now. Like I said, I am hoping to jump start this blog and start adding pictures as we go along. I am sorry it took so long for me to do this.
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