Monday, December 24, 2007

Christmas Eve, Already?

I can't believe Christmas is tomorrow. It seems that there are days in life that will never come and then before you know it... it is over. I catch myself always looking for things to come and I think I can miss out on a lot by doing this. I hopefully can correct this wasteful habit.
This year Spencer (who is 10), has finally asked me if Santa is real. I am sure he had heard different things at school. I have always told him that I will be honest and that when he is ready, I will tell him the truth, whatever that may be. Before I answered his question, I asked if he would be OK with either answer that he may get. He thought about it for a minute, and then said that he would wait awhile before he wanted to know for sure. I think it is cute that he still wants to believe (and possibly not screw anything up right before Christmas).

Spencer, Gavin, Ethan, and myself have all gotten colds this last week. It started with something Spencer picked up at school, and despite my best efforts have spread throughout the house. Spencer and Gavin have it worse (so far) than Ethan or I do. It is pretty much a hacking cough with a tickly throat and some mild nasal congestion. I've been worried about Ethan. I hope it doesn't develop into something bigger. I've been keeping a close eye on him, checking his oxygen levels more frequently, listening to his lungs with my stethoscope, and watching his eating and sleeping habits more diligently. So far he's been handling it well. I was actually glad when I got sick after Ethan began showing symptoms. I don't know if there is any truth to this, but my theory is while I am breastfeeding, if I get the same sickness as Ethan, my body will produce the specific antibodies needed and hopefully get him feeling better sooner.

We went up to Christmas village in Ogden on Friday night. We had been given clearance by Ethan's Cardiologist to take him out in the cold, but it was that morning that Ethan began getting sick. So needless to say, Ethan stayed in the car with either myself or Tim while the other one saw the lights and Santa Claus. So far, this is the only real family tradition we have at Christmas time. Especially now that we've moved, it is always a treat to visit our old stomping grounds.

To all of you who didn't get Christmas cards from us this year, don't take it personal. Nobody did. I had a late start getting into the Christmas spirit this year and I've never been good at sending out cards in the first place. However, I do appreciate all of the Christmas cards and warm wishes that we've received. It's nice getting something in the mail other than junk or medical bills. I too hope all of you have a very "Merry Christmas" and we pray for health and happiness to you and your families.


Wednesday, December 19, 2007

Cardiology Visit Today

We just returned from Ethan's cardiology appointment. Today we had chest x-rays, an EKG, and had his vital signs checked. Ethan weighed 18lbs and was 27 inches long according to their measurements and his blood pressure was still doing good. Dr. Williams said that Ethan was looking really healthy. His oxygen levels were 88% on room air. The Dr. adjusted some of Ethan's medication doses and took him off of the lasix completely. That is good news for Ethan because that is the one he dislikes the most. It doesn't seem like much, but just removing one medication from our daily routine seems to make a difference. (It doesn't make a whole lot of sense since I am still giving him other meds at the same time, but it really does seem to take a small weight off of my mind.)

I had been worried about taking Ethan out in the cold to go see Christmas lights, but the MD said it would be OK and that Ethan could come with us as a family. We still need to continue to see the Pediatrition regularly but we don't have to go back to Cardiology for 6 months. When he does go back at 14 months old, they will do another echo for the enalapril study that he is in and will also check his tricuspid valve (the valve between his right atrium and ventricle) which has a "mild leak". This is an important valve because if it is leaking too much, it increases the workload of the right (his only) ventricle and will cause it to fail sooner. Dr. Williams wasn't concerned too much about it at this point, but said that it is definitely something that we need to keep an eye on. All in all it was a great appointment and it is always nice to hear from his doctor that he is doing well. Thank you to all of you who have kept us and Ethan in your prayers.


Tuesday, December 18, 2007

Growing Up

I just thought I would post a couple of pictures that show how big Ethan is getting (Gavin also loves getting his picture taken). He is sitting up all by himself now (he can't get into a sitting position all on his own but will stay sitting if you put him that way). And for having his oxygen levels in the mid 80's, I think his coloring looks pretty good. He has a cardiology appointment tomorrow. I will post again after our visit with the doctor. I hope they don't find anything surprising. I don't think they will, I think he is doing really well.

This is just a shot that I was trying to get to show off his 2 new front teeth. He is such a cutie pie! He has such a fun personality. He is so happy and content. He is very good to do things on his own but also loves to be held and played with. We've been doing a lot more tummy time with him to try and get his upper body stronger. In fact, he will scoot on the floor if you give him something solid to push his feet against.

We are so blessed to have him in our family. I don't know why this had never occurred to me before but I had read somewhere that the oldest living child with his condition is only 14 years old (not counting transplants). I think this surprised me because the doctors have always told us the goal was to get him to his teenage years to early 20's before he will need a heart transplant. I guess I never put 2 and 2 together that this really is just a goal and it has only been in the last little while that his heart defect wasn't a complete death sentence. With that being said, it only makes sense that any living survivors wouldn't be very old. So because of this, things really are still developing and we are in uncharted territory. I guess I have always looked at the potential instead of the actual reality. Regardless, he is here with us now....... just like he was meant to be.


Sunday, December 16, 2007

"Heart Mother"

I have been surfing around at different blogs and care pages lately and came across this poem that a mother of a heart baby wrote. However, I don't know who the author is. Also, I did make some slight revisions. I thought it was really special and thought I would share it with you.

One day my world came crashing down,
I'll never be the same.
They told me that my child was sick.
I thought, "am I to blame"?
I don't think I can handle this.
I am really not that strong.
It seemed my heart was breaking.
I have loved him for so long.

I will not give up on this child.
I will listen to your advice.
I will give my child any chance.
No matter what the price.
I will learn all that I need to help my child thrive.
I'll even use that feeding tube.
My child must survive!

Will he need a lot of therapy?
Will he gain the needed weight?
Please God, help me do this.
I will accept our fate.

When the monitors beep at night, it serves as my reminder.
How many parents would love that sound.
Tomorrow I will be kinder.
As another Angel earns his wings,
I run to my child's bed.
I watch him sleep for quite a while.
I bend down and kiss his head.
I cry for the parents whose hearts have been broken.
I look to You wondering why?
Oh Lord, I just can't know your matter how I try.

And yet, I trust you hold his life, and guide us through each day.
My mind says savor each moment he's here,
but my heart begs, "PLEASE let him stay"!

From pacing the surgical waiting room, to sitting by his bed.
From wishing for a good nights sleep, to learning every med.
From wondering, "will he be alright?", to watching him reach out his hands.
With every smile my heart just melts, despite life's harsh demands.

For all who see that faded line.
I look to them and smile.
You see my child is loved so much.
I would face ANY trial.
That scar I trace with my finger (It's the door to his beautiful heart).
God must have known how much I'd love him (Just as He loved him from the start).

A heart mom is always a heart mom.
Now wise beyond her years.
For those who have angels in heaven,
Our hearts share in all of your tears.

Every day I will try and remember,
I was chosen for him (and no other).
I will always embrace that beautiful day.......
When I became a "Heart Mother".

Thursday, December 13, 2007

Am I That Bad?

I am sitting at the computer looking through my past blog entries and recounting all of the events that have taken place this past year. Gavin is supposed to be taking a nap but instead comes up to me and makes the funniest comment. I guess this was a game that he made up and wanted to play. I asked him what I should do. He proceeded to explain, "I say say NO!" What a bad rap I must have!


Tuesday, December 11, 2007

Funny Little Boys!

These pictures were taken a couple of weeks ago and I finally was able to catch Tim last night to show me how to put them on our new computer. I am not very computer literate. Anyway, I was in the kitchen making dinner one night and Ethan was lying on the bed watching his favorite show. Earlier in the day the older kids had been showing me pictures in a magazine of things that they wanted for Christmas. I went in the bedroom to check on Ethan and he had gotten a hold of the magazine and was having a ball tearing it into shreds. He was smiling and giggling with each rip. Too bad for the magazine. He was being too cute to take it away. That same night I'd heard the game "Guitar Hero" playing in Emily's room. I heard booing and someone playing very poorly. I thought it was Spencer and went into Emily's room to just razz him a little bit. When I got there I was surprised to find Gavin had started up the game and was "playing the guitar". I am so lucky to have such fun and cute little guys!

Monday, December 3, 2007

December 3, 2007

I am feeling guilty about not posting anything this last week. I didn't even do the 5 for Friday's. It has been fairly busy lately so I will just give a brief synopsis to catch up.

Ethan is continuing to do well. He has had a mild stuffy nose but nothing that a bulb syringe can't fix. He also got his 2nd flu and RSV shots last Friday. At that appointment he weighed 17lbs 10oz. That is only 7oz gained since his 1st RSV shot 4 weeks ago. I am not exactly sure what is a normal weight gain at this stage of the game, but I guess I was expecting more. He has been eating pretty well but has also been getting sweaty with some of his feedings. He has a cardiology appointment in a couple of weeks. I am actually excited to go and to make sure that things are still looking OK. I don't know if I will ever find a time where I don't worry about him.

We attended our first Christmas party of the season on Friday. This was for the Gatherum side of the family. Again, Tim volunteered to stay at home with Ethan and so just the older kids and I went. I really enjoyed the visiting and the kids had a great time playing the games and running around with their cousins. Each year we rotate who is in charge of planning and hosting the party and I guess next year it will be my turn. I actually think it will be fun to be in charge of it.

I was talking to Spencer yesterday, and just out of curiosity I was asking him if he couldn't have the #1 thing on his list (which is a NintendoDS) from either Santa or from us, what would his 2nd choice for a gift be? He wouldn't give me an answer and insisted that this was all that he wanted. I kept pressing him and then he finally said, "Mom, I know what you are doing! You just think that a Nintendo costs too much and want me to tell you something else that is cheaper." I just had to laugh. It was cute to see his mind working and see him thinking that he had to stay 1 step ahead of me to protect his beloved Nintendo.

Yesterday was the day of the teeth. Ethan's 2nd bottom tooth finally broke through which was a blessing. This 2nd one seemed to be worse than the 1st one. His gums were really swollen and were very tender. Also, Emily lost her 4th tooth yesterday evening. I was telling Tim that I've never been sentimental about these little teeth when they fall out. But yesterday, I was just looking at her little tooth in my hand and it just took me back to when she was a baby. We would have been living in Texas at the time she got this tooth. I could just remember her sitting in her swing at Betty and Larry's house and the amazing year that we'd spent with them. I then had a little flash forward to when Ethan will be her age losing the tooth that just came through today. I couldn't help but wonder what will have happened between now and then. I wonder if he will still be healthy. If he will be doing "normal" kid things or just doing his best to keep up with Gavin. It is hard to envision what the future holds for our family.

I have been having a hard time getting into the Christmas spirit this year. I think part of it is just not being able to get out of the house much. There is so much going on around me that I am oblivious to. I think I simply need to get motivated enough to get the house clean and then get our Christmas decorations out. But right now, either way, it seems like more work. Bah Humbug!


Friday, November 23, 2007

Five for Friday's # 3

Although we did not have Thanksgiving dinner at our house yesterday, it did not keep a huge mess from forming. I don't know what happened because I had worked on it all week and was pretty clean on Wednesday. Oh well. Life goes on. But right now I don't want to think about it so I am going to sit down and take a moment to think about what I am grateful for.

1. Although very messy and dirty at the moment, I am very grateful for my home. I love living in the area we are in. We are in an amazing ward and in a fun neighborhood. I love the conveniences that my home has to offer. I love turning on the fireplaces when the weather gets cold. I love sitting in my jetted bathtub when I need some time alone. And although our new home is bigger and much nicer, I can't say that I am any happier than when we lived in our little house up in Ogden. My home is not defined by what is in it but rather who is in it.

2. I am grateful for our jobs. We are blessed to have a good income which supports our family. I am blessed to have a job where I can have the best of both worlds. I can be a mom who spends the majority of my time with my kids. And I can also get out of the house 1 day a week to work, socialize, and do something that I love to do. I feel secure knowing that if I ever needed to, I have a job that could support our family. I am so glad that Tim can also do something that he finds purpose in and enjoys doing. He loves his new job and was actually named one of "Utah's Legal Elite" by the Utah Business Magazine in his field.

3. I am grateful for our cars. It is always an eye opener how much we depend on them when one of the cars is out of commission. This hasn't happened recently but it used to happen all of the time. Tim was always good about taking the bus when this happened so that I could still have the car with the kids. It is so nice to be able to go where I want when I want.

4. I am grateful for the education of those people around me. I am glad that there are people who can fix things from cars to hearts. I remember when Tim and I were meeting with the surgeon right before Ethan's first surgery, I felt very compelled to thank the surgeon for the education that he received which gave us a chance at life. I know how much time, money, and effort it takes to follow through to get a good education (whether it be a trade or college). I am grateful for those who rise to the challenge.

5. I am grateful for music. Whether it I need it to comfort my baby in the hospital or to get me moving so I can clean my kitchen, I love good music. I dance when nobody is looking and I sing at the top of my lungs when I am in the car by myself. I love that I can either create or temper any mood that I may be in with the right song. I also love that my kids love music and we can all sing in the car together while running errands. I can't promise that we sing on key or know all the words, but I do know that we all have a smile on our face.


Thursday, November 22, 2007


Today was a really nice day. Myself, Spencer, and Emily went up to my Grandpa's house for dinner. Tim, Gavin, and Ethan stayed back home since Ethan can't go anywhere. Although I didn't like being separated, I know that this is only temporary. Tim was a good sport and volunteered to stay back since he has no nearby family. He also volunteered to keep Gavin so that I could have a relaxing day and not have to worry about him getting into things or running away at my Grandpa's house. I did bring back Tim and Gavin some dinner and pie. So although it was re-heated, they at least were still able to have a turkey dinner. It was nice to visit with family and I really enjoyed myself. My contribution to dinner was homemade rolls and banana cream pie. I hope all of you have had a wonderful day with your family. It is this time of year that I am so grateful for all of my blessings and the people in my life.


Tuesday, November 20, 2007

Tuesday, November 20th

Yesterday was a fun day. My Dad's birthday was yesterday and yet he and my Mom were kind enough to come and watch Ethan while Tim and I and the other 3 kids went to go see the "Bee Movie". Emily was also able to invite a friend which she was really excited about. It was a good movie and we all had fun. However, Tim and Gavin actually left early because Gavin wouldn't stay in his chair and started wandering the isle.

When the kids and I arrived home, it turns out Gavin felt warm and had a temperature of 102.2. This seemed to come out of nowhere. He'd been fine all day. I am hoping that the baby and I don't get sick. Gavin had been very sweet all day long and he gave me lots of kisses and snuggle time. So far I feel fine. Ethan however was up quite a bit last night having a hard time breathing. He didn't have a fever but just had a lot of nasal congestion. I had to suction his nose about every hour throughout the night. Needless to say, I got up to help get the older kids ready for school and then I went back to sleep. The 3 of us slept in until about 11:30. I think we all needed it. Poor Tim. I am sure he also did not get a good night's sleep with both kids fussing but he still had to go to work.

I was worried about getting anything done today. I've been wanting to try out a roll recipe for Thanksgiving. I also have a couple of days of laundry to do. I suctioned Ethan when he woke up and so far he seems to be doing ok. I really worry about him getting sick. He didn't want to eat his pear mush before bed (which is his favorite) and would not breastfeed during the night which was concerning me but he did have a good feeding this morning. And Gavin did not have a fever when he woke up, so hopefully this was just a quick episode. I will do my best to keep Gavin and Ethan separated and to keep myself from getting sick as well.

Ethan is cutting his first tooth. This could also be where all of the congestion is coming from. When I felt his gums this morning, I can feel the slightest bit of a tooth breaking through. What a big boy. He is also trying to sit up more on his own. When I put him in his swing, he doesn't want to recline back, but sits right up. He can also sit up next to me on the bed if I am supporting him on one side. It is fun to see him doing and trying new things.


Friday, November 16, 2007

Five For Friday's #2

I can't believe that it has been a whole week since I wrote last. It feels like I have been so busy this past week. Our ward had our visiting teaching conference on Tuesday which was really nice. I actually had a part in the program that I had been really nervous about all week. I could never come up with something concrete to say but when the time came for me to get up, the words just came and I think it turned out pretty good.

Tim, Spencer, my Dad and my brothers all went pheasant hunting last Saturday. Both Tim and Spencer seemed to enjoy themselves. Emily has been doing really well and has been very sweet and helpful. She is enjoying school and is doing really well at reading, spelling, and math. She has always been a very good student.

Gavin has been quite the busy little guy. He has been making mess after mess and is much quicker than I am. Just yesterday, I found him painting the toilet with my lip gloss. He smeared pudding (which he got out of the pantry by himself) in my shower and then attempted to use a whole roll of soggy wet toilet paper to try and clean it up. Now remember, this was just yesterday. I couldn't recall the whole week. I sometimes try to block it out. He now knows how to open the doors with the child safety covers on them which means he has full access to the pantry, the basement, the bonus room, the garage, the bathrooms, and the game closet. In every one of these areas there is something that he wants that is just waiting to become a huge mess. This makes my life much more difficult.

So on that note, I am now going to do my 2nd posting of things that I am grateful for. I am trying to stay positive.

1. I am grateful for my brothers and sisters and their families. They all have been so supportive of us in both the past and present. It is fun to have such a large extended family where all of the cousins can run around and play and where there is never a dull moment in conversation. I really enjoy spending time with them individually and in large groups. I feel that I have a great relationship with all of them. I love you guys!

2. I am grateful for Tim's family. I am very lucky to be married to a man with such loving and supportive parents. I respect them and love them. I have never had any of the "in-law" horror stories that you hear about. I love the time we get to spend with Tim's parents and brothers and sisters and look forward to each visit. My only regret is that we live so far apart and we don't get to see them very often. However, I do feel that although we may not be able to enjoy the day to day dealings, the relationships that we have are strong and sincere. The distance makes all of the get together's that much more of a treat. I love you all!

3. I am grateful for the education that both Tim and I have received. I love being a nurse and Tim is an excellent attorney. We had many bumps and trials along the way. I am proud of both Tim and I for taking the time and making the sacrifices that it took to follow through and to never give up. I also realize that although we sacrificed and worked hard, we did not do it alone and I appreciate all of you who helped make this possible.

4. I am grateful for my freedom. I have the greatest respect and admiration for those who have fought and died for our country. I can't imagine as a mother, sending my sons or daughter off to war. I know that many have lost loved ones on my behalf and I am truly indebted for their sacrifice and willingness to serve.

5. I am grateful for my health. It is one of those things that you don't tend to think about much until there is something wrong with it. I am blessed to have a healthy family and to have Ethan's current good health. There have been many losses recently of little heart babies and I can't help but be so amazed and grateful to have Ethan at home doing normal baby things. I know that this is a priceless gift.

Well, there you have it. I will try to be better this week about keeping things updated. I hope you all have a good weekend.


Friday, November 9, 2007

Good Week

As the week comes to a close, I have to say that it turned out rather nicely. At first, I was really bummed out when the dentist said we'd pay at least $1000 to get a crown for Tim, especially with Christmas coming up. But it seems that things just always work out. When Tim went with check in hand to the dentist, they somehow determined that this was "warranty" work and did not charge us one penny. Can anyone say "tithing blessing"? I was so amazed and relieved.

Tim was able to go to Emily's first grade class on Wednesday to read them a story and to place one of his old neck ties on the classroom turkey. Emily really enjoyed it and was proud to have her Dad come to her school.

My sister-in-law (thanks Adrian) last week started what she calls "Five for Friday's" and has invited anyone interested to join in. This is basically where every Friday you take the time to list 5 things that you are grateful for. I thought this was a great idea. Now, whether I just do this during the "thanks giving" month, or continue for a while will remain to be seen. But I will do it at least for this month. This first post will be really easy because it all has to do with the obvious. Now anyone reading this, please don't feel left out if you are not mentioned this time. I am so grateful for all of you. However, I can only do 5 at a time and will try to spread things out throughout the month.

1. I am grateful for my testimony of my Heavenly Father and my Savior, Jesus Christ. I know that I am watched over and blessed continually. I know that they love me and want me to be happy. I am grateful for the guidance and teachings that the church brings to my life.

2. I am grateful for my ever loving husband Tim. He is an amazing husband and friend. He knows when to pamper me and also when to push me. He is a devoted and involved father. He is intelligent, hardworking, honorable, and trustworthy. I am so blessed to have such an amazing man in my life.

3. I have 4 beautiful, intelligent, and fun children. Spencer is such a good kid. He is both very smart and has a very core sense of right and wrong. He has a very tender heart and does his best to please us as parents.

Emily is such a free spirit. She is so outgoing and loves to have fun. She can be my most determined child and yet can also be my most thoughtful child. She is very creative and bright. She has a gift for the arts. She is a fun combination of tomboy and princess.

Gavin has a very strong mind and body. He is mentally bright as well as socially smart. He knows how to push you to your limits and then turn on just enough charm to make you smile. He loves to give hugs and kisses and loves to snuggle. He is a very affectionate and fun child.

And then there's Ethan. Ethan is my "gift from God". He came when he wasn't planned and changed our lives forever. He is amazingly strong and resilient. He is patient. He has a very sweet disposition. He seems to have an awareness of things around him beyond his years. He is a very happy baby with "smiley" eyes .

4. I have been blessed with incredible parents. They are so supportive and go out of their way to help and assist. They are always thinking of others and go the extra mile at their own expense. They are such an example to me of love, sacrifice, and patience. They are both hard working, intelligent, and honorable. They raised a loving family and I have nothing but the utmost respect for them.

5. And finally, I am grateful for my friends. I may not have quantity when it comes to friends, but without a doubt, I have quality. I have true and real friends. People who I respect and enjoy being around. I know that I can always rely on them to give me sound advice and to be there in times of need. I have friends that I can confide in, laugh with, and cry with. They lift me up and make me want to be a better person.



Monday, November 5, 2007

Monday, November 5th

The past couple of days have treated us fairly well. Tim is almost done with the sprinkling system. He was up until midnight on Friday and then was out working on it again with my Dad all day on Saturday. Needless to say, they were both tired and sore at the end of the day. The only bummer thing about Tim is that he had a tooth that simply broke last week. I just got a call from the dentist and they said to plan on at least $1000 to fix it. We lost our dental insurance when I cut down my hours at work when Ethan was born, so that expense is all ours. That Bites!

The kids are all doing well. Ethan started his RSV shots on Friday as well as his flu shot. I gave all of the other kids their flu shot. Spencer was really brave and Gavin cried but only had to be held down a little. Emily on the other hand, you would of thought the world was ending. She said she wanted to do it for Ethan, but she was too scared. She wanted me to give it to her in the leg. I told her it would hurt worse and that I would give it to her in her arm or in her hip. She was screaming and wailing and would run away if I even came close to her. The long and the short of it was that Tim ended up having to hold her down. She fought and screamed terribly. Tim covered her eyes and as soon as he did, she immediately calmed down, didn't move, and didn't cry. She can be such drama! I gave her the shot and she just looked at me and then smiled. She even giggled when she realized what a fuss she had made for a rather anticlimactic ending. I hope she remembers this next month when she has to do it again. Because this is the first year that I have had the kids get flu shots, both Emily and Gavin have to have their dose split in two and given 30 days apart. Oh joy.

Spencer and Emily started back to school today. They will be in until Christmas break. My goal now is to get the house clean again. It gets so out of control when they are out of school.

Ethan is`doing much better with eating his mush. I combined several ideas that were given and between that along with just a little bit of practice, he is doing really well. He seems to also be sleeping a little better at night after he eats his cereal. Thanks for all of the suggestions that were given. They really did help.


Friday, November 2, 2007

Little Ian

I know that many of you have been following the lives of our friends the Pearson's. Yesterday little Ian became an Angel. They fought a hard and valiant fight. My heart is so saddened by this news. Please keep their family in your prayers.


Wednesday, October 31, 2007

Halloween Pics

The kids were so excited for Halloween this morning. They all put their costumes on as soon as they woke up. When I told them to take their costumes off until until Halloween, Spencer took the liberty to point out that it was Halloween "all day long". You've gotta love kids!

Gavin was "Bob the Builder". He had a hard time keeping his hat on while trick or treating. It kept falling into his eyes and then he couldn't see his candy. However, his hat did become useful in the car when he opened up his smarties and used his hat as a bowl for them.

Emily is wearing the witch costume that my mom made me in the 2nd grade. She told me that this costume makes her look "really cute".

Spencer was supposed to be a lion tamer and Gavin was going to be the lion. However, we couldn't find a cute lion costume for Gavin and so Spencer became a Safari explorer.


Happy Halloween

Well as Halloween comes to a close, I thought it would be fun to post some pictures of the kids in their costumes. Ethan didn't get a costume this year because he can't go anywhere. Spencer was a safari explorer, Emily was a witch (the exact costume that my Mom made me in the 2nd grade), and Gavin was Bob the Builder.

Tim stayed home with Ethan and I took the 3 trick or treaters to the nursing home up the street which was perfect for Gavin. You get a load of treats in just one stop. I think it is good for the residents as well as for the kids. The residents get to see all of the children in their fun costumes and the kids are exposed to a population that may be intimidating under different circumstances.

After we we left the care center I took the kids up to my parents house to let them see the kids in their costumes. We didn't stay long because as Spencer says, " time is candy". We then dropped off Gavin back at the house with Tim and then I took the older 2 kids around our neighborhood.

Needless to say, we have way more candy than anyone of us needs. Although my feet are sore, it was actually fun to walk the streets and see where people live. We are still trying to get to know everyone. As fun as it was, I am glad it's over and I am going to talk Tim into rubbing my feet. HAPPY HALLOWEEN!!!


Monday, October 29, 2007

My Family

Tim doesn't get enough credit for the wonderful husband and father that he is. I truly value his opinions and I admire his intelligence and insight. I have to say that I think he is so handsome with his early greys (I'd better since I am sure that I am the cause of a few of them).

Gavin loves wearing Spencer's Darth Vader helmet. He also had been chewing on a whip that Spencer had bought at scout camp which gives the nice black smudging on his face.

This is Emily just after she pulled out her tooth. This would make tooth #3 and is the first tooth she pulled out all by herself. She is now working on her other front tooth. She has really matured this last year.

Spencer loves to mess around with the camera and take pictures of himself and his surroundings. He is such a ham when he gets his picture taken. He is such a good big brother and is a big help with Gavin.

I just wanted to post a few pictures of my family that have been taken in the last couple of weeks. All of the pictures so far on this blog have just been of Ethan ..... but I am so lucky to have 4 beautiful and intelligent children and they all deserve a little recognition. They amaze me everyday.

Tim has been working so hard at work lately and then has been coming home and working on major home projects. He never complains. I don't know how I got so lucky to marry such a hard working, supportive, and patient man. I have many, many shortcomings and although I am sure he notices, he never holds them against me. I have been very blessed. I love you all!


Wednesday, October 24, 2007

Pediatrician Appointment

Yesterday was Ethan's Pediatrician appointment. He weighed 17lbs 5oz! He has really put on the weight since his last surgery. At his 2 month visit he was only in the 10% range for weight and now he is in the 90%. He is also growing in length which is what we want to see. This helps us know that this is true weight gain and not water weight which is a bad sign. Our MD also said that developmentally speaking he is right on track. There was nothing that she tested that he was behind in. She took him off of his zantac and wants us to keep trying to feed him with a spoon. She said that in a month if he still wasn't eating well by spoon then we may want to get another swallow study.

I tried to feed him some really thinned down cereal tonight, and just like before, as soon as it hit his mouth he threw up. He did it three times in a row! What a stinker. You can tell that he doesn't like it. He grunts and clenches his jaw shut when you even bring the spoon up to his mouth. The food doesn't even hit the back of his throat. It is the craziest thing. I really don't think that it is a swallowing issue because he breastfeeds great and takes his medicine just fine as well. In fact, we have been giving him some teething biscuits and he does just fine gumming those. I have no clue as to what his issue is with the cereal.

Our MD wants us to be feeding him 1/2 cup of cereal a day whether it is all at once or in divided doses throughout the day. I guess I will just keep trying and hopefully the consistency will get him used to the idea that this is the direction we are moving in.

Other than being stubborn with eating, Ethan is doing remarkably well. I am amazed at how happy and "normal" he is. He is completely off of the oxygen. I do spot checks on him every few days or so. Today when he was sleeping his oxygen saturation's were 82-88% on room air. That is so much better than before his last surgery. When people ask how he is doing I say that he is pink and plump......just they way we like him.


Monday, October 22, 2007

I've Been Tagged!

I was actually "tagged" a little while ago and I am supposed to tell you 6 interesting things about myself or my family. It has taken me a while to come up with anything since I am a pretty open book as well as being fairly boring. As these things may not be very interesting, I am afraid that this is going to be as good as it gets. So, here it goes.....

1) Tim and I spent our 1st anniversary giving birth to our son Spencer. We were married at 1:00pm and he was born at 1:01pm almost exactly a year later.

2) I delivered my 1st two babies with an epidural and I delivered my 2nd two babies natural. This actually came in very handy when Ethan was born because I was up and moving
quickly and was discharged from the hospital only 12 hours after giving birth.

3) When Spencer was 1, I went to nursing school and worked full time. Tim was also a full time student and worked full time. (In fact, there was a semester after I'd had an ectopic pregnancy that he worked 1 full time job, a part time job, and went to school full time. He literally had only 4 hours a week to himself.)

4) I was the sole bread winner for 3 years while Tim went to law school. As proud of myself that I was able to be able to support my family, I was very ready to give him back title when he graduated.

5) Tim and I were engaged after only 3 months of knowing each other. I knew he was the one for me after our first date. I had actually told my brother the day after our date that " I am going to marry that man."

6) We've been married for 11 years and have moved 8 times. We just built our house a year ago that we plan on living in for many, many years to come. I hate moving.

So there you have it. I am sure if I thought long and hard I might be able to come up with some more but at this time I am tapped out. Now that I have done this, I am supposed to tag someone else, so Brynn, Mike, and Jenn........"tag, your it!" (when you get time, I know you are all busy.)

Wednesday, October 17, 2007

A Little Getaway

It may not be that far from home, but any getaway is a good getaway. I am sitting in a hotel room up in Park City. Tim had some work which brought him up this way and we thought it would be fun to take the opportunity to turn it into a mini vacation to try and decompress from all of the recent stress. I realize that this is probably more for myself than for Tim since he has been working here from the hotel lobby. The 3 older kids are staying with various family members which I can't thank them enough for. We obviously brought Ethan with us and I actually think he's also enjoyed a little one on one time. We will be up here for 2 nights.

We arrived here last night and it was so nice just to spend a little time with Tim. We haven't had much time to spend together which is normal after having a new baby, but it definitely has been emphasized with Ethan's heart problems. We went to the Olive Garden last night which I absolutely love. I never get to go there unless it is with my friend Jody or a special occasion. It is not Tim's favorite. (Tim just told me that he takes me there "all the time" and pointed out that the last time we went on a date we went to the Olive Garden. He said that we go there 80% of the time we go out. The only deceiving thing about that statement is that I was 6 months pregnant the last time we went on a date. So as I stated before, when you only go on a date once a year I consider that "a special occasion".)

The baby and I slept in this morning while Tim worked and then Tim was able to take a break to go out to lunch. We plan on going up to Heber City tonight to a good BBQ restaurant that my Dad recommended to us. While Tim was working I spent my day with Ethan in the outlet stores. I spent way more than I probably should have but hey, Christmas is coming and I can just say that I am getting a head start.

It has been so nice up here. I absolutely love the mountains. It was rainy last night but today it has been snowing. I love it! It makes me feel that much farther away from everything. Now, I realize that when I get home there is still laundry, dishes, and plenty of cleaning to do. But while I am away those things are far from my mind. I needed that.


Friday, October 12, 2007

Get Moving

OK, so I understand that my posts from now may be pretty boring to all those who might be reading. Now that the drama of Ethan is pretty stable the only stuff I have to write about is my own life, which by all accounts is not very exciting. This site started out as an information source to keep people updated on Ethan's condition and I will continue to do this when there is news. In the meantime it will serve as a journal of family happenings for myself and people who may be interested.

Yesterday was a pretty busy day. I had a staff meeting up in Ogden that I had to go to and then I went to Emily's soccer game. She did so good. She actually scored 3 goals. She seems to be a pretty natural athlete and really loves physical activity. She is a fast runner and is not scared of the ball. She is a real go getter on the field. So after her game we went and picked up Spencer from his football practice, picked up some pizza and went home to see Tim. Things were pretty settled down so I decided that I would go and play volleyball at the church house to try and get a little physical activity as well as a little socialization. So anyway, here is how pathetically out of shape I am. I came home in a great mood. It felt so good to get out and MOVE. We played a pretty fast paced game called king of the court because there were so many people. You were constantly moving. Anyway, when I got home I was sweating like a pig! I stripped down to my underwear and turned the fan on because was so hot. I made Tim promise me that if I was dragging my feet next Thursday when we practice again that he would encourage me. I really enjoyed myself but I can get lazy and talk myself out of it when the day actually comes around.

Boring, I know. But after being cooped up in the house most of my days, it is big fun for me to get out and do something. Also, Adrian (my sister-in-law) "tagged" me. This means that I am supposed to post 6 interesting things about myself. Watch for this post in a few days because it will take me at least that long to come up with something. Hope all is well with all of you.


Tuesday, October 9, 2007

Plugging Along

It's been a few days since I've posted last. Thanks for all of the comments and suggestions about feeding Ethan. I think his pediatrician appointment is next week. I will let you know what the MD thinks. Until then, I am not going to worry about it.

Again, not much is happening. I started back to work Saturday night. My shifts are from 5pm-5am. It's not really that bad but I sure had to muster up some energy to get excited about going. It really helped when I found out that my good friend Carie would be working that night. It is always better when you work with people that you enjoy. The shift itself was good but man, working those 12 hour graveyards sure kick my butt after I've been off for a while.

Since his second surgery, Ethan is really filling out. He has never had a problem with his weight but I weighed him at my parents house on Sunday (only 10 days since his Cardio follow up), he's gained about a 1lb and a half. His face is noticeably rounder and he is definitely heavier.

Tim and Ethan did good while I was at work. Ethan still struggles with the bottle but managed to get enough to stay satisfied until I came home. Gavin was a terror yesterday but has been fairly mellow today. Spencer brought home a non-impressive report card yesterday. So today I am meeting with both his teacher and Emily's teacher before they go off track next week.

I am going to have to figure out some fun things that we can do while they are out of school for 3 weeks. It is hard because our cardiologist has told us now that it is getting colder that we need to start keeping Ethan away from others to prevent him from getting sick. Any suggestions? In the summer time it is not too bad but when it is cold and muddy outside, the kids get really stir crazy when they are stuck with me in the house. I talked with Tim about getting our bonus room above the garage finished as soon as possible (after he finishes or the weather stops him working on the yard). It would be a nice big room where the kids could run and play and I could maybe start exercising. I don't think I convinced him that this is a priority. He has so much on his plate and when I work weekends he can't get much done because he is watching the kids. I wish we had enough money to just pay someone to do it but I guess we will have to just keep plugging along.

Anyway, all of the things that I wish for and think are important are just secondary when it comes right down to it. I am so grateful for our health and ability to be together as a family. I have to constantly try and keep everything in perspective because I know first hand how unimportant everything else becomes when you are fighting for a loved one. I fear that if I forgot this lesson, it wouldn't take much to make me remember. I try and take the good days for what they are, but you are always aware that that next hospital stay could be right around the next corner.

For what it's worth, enjoy your families and loved ones while you are with them. Not one of us have any guarantees.


Friday, October 5, 2007

Mush Time

Last night Ethan was wide awake and wanting to play and Tim and the kids were already in bed. I got the bright idea that maybe now would be the time to try some rice cereal for the first time. Normally we would have already started this, but we were told to wait a couple of weeks from his hospital discharge so that if he had any reactions we would not confuse new foods with new medications. So anyway, I thawed out some milk to mix with his cereal, made sure that the mush was real thin so that he wouldn't choke, and then put on a bib and placed him in his chair. I was so excited to be doing "normal" baby things that I got my camera ready to take some pictures. Well, it didn't go so well. I put the spoon in his mouth and he immediately started making these gagging motions and then just threw up all over himself. He didn't even try to swallow his mush. So needless to say, I didn't take any pictures. I think that he still has a strong oral aversion from all of the tubes down his throat and all of the yucky medications while he was in the hospital. I guess I will wait a few days and then try again. If not, I will just talk with his pediatrician at his appointment in a couple of weeks on what she thinks I should do. If any of you have any suggestions, let me know. Sooner or later he's going to need something more than just breastmilk.


Thursday, October 4, 2007

Officially Blonde

Alright, I concede. I was lying on the bed this morning playing with Ethan and for whatever reason I just started focusing on his hair. I knew that when I had trimmed his hair about a month ago that most of what came off was his dark hair. I didn't think much of it. I guess I figured that it just looked blonder because it was now shorter. I think I have been in denial. So, after inspecting him this morning I can officially say that Ethan is blond. I don't know how it happened. He was born with such dark hair. I don't want to make it seem that I don't like my blondies. I was just hoping that one of my kids might look like me after 9 months of sacrifice.

Ethan was an unplanned pregnancy and I used to joke around that my sign from heaven that this would all be OK was that he would be born with dark hair. Well, now that he is here I don't need hair color to provide any assurance. He was meant to be with our family. And so with that being said, I guess he can shed his brown locks and fit into the family mold of blond hair and pretty blue eyes.


Wednesday, October 3, 2007

Fussy Night

Things have been pretty mellow these last couple of days. I guess sometimes no news is good news. Last night however Ethan had a HUGE screaming fit. I couldn't console him and I was beginning to get concerned. If this had been a couple of weeks ago it wouldn't have bothered me as much but he's been his normal self lately. I don't know what was wrong. He'd been a little more fussy than usual yesterday but just very agitated and intense all throughout the night. He is still sleeping. I hope he is feeling better when he wakes up.

On a funner note, Ian got his heart yesterday. I have not heard how things have gone but I am sure that Justin and Jenn are so relieved that the waiting game is over and they can move on to a different phase of recovery. I took a small gift of music and books up to them on Monday night for Ian but they were off the unit and I left it at the desk. I am hoping that they got it because I know that sometimes the room and machines can be so loud and it seemed like when Ethan was there he was comforted by the soft music. He was very sensitive to beeping and noises that would startle him. I think that the music provided a constant sound for him to focus on.

Right now life seems boring but like I said boring means nothing too major is going on. Tim is just trying to find time to put in the sprinkling system and I start back to work this Saturday. The kids just keep plugging along in school and Gavin is just Gavin. Well, I guess I've stalled long enough. I should try to get the house picked up.


Saturday, September 29, 2007

Weekend Update

Tim is finally home! He got his deer yesterday and arrived home about 4:00 this afternoon. It was so good to see him. Today was my most challenging with Gavin. My morning was spent cleaning up hot chocolate powder spilled all over the kitchen. I had great aspirations to get the house cleaned before Tim got home but this just killed my motivation.

Ethan is doing really well and for the most part is off of his oxygen. Spencer's football team lost their first game this morning. Spencer was really disappointed. Emily continues to be very helpful and did a load of dishes this morning all by herself because she said I looked stressed.

I feel guilty talking about my "bad" days when little Ian and his family are fighting for his life. I have such a tender spot in my heart for these little heart babies and their parents. It was not that long ago when Ethan was born that I did not know if he would ever come home with us. It is so heart and gut wrenching. Even though we've had many good days to this point, one day it will be Ethan lying in a hospital bed waiting for a new heart. At this time I have the luxury of just imagining what it will be like. I have such a heavy heart knowing that the Pearson's are actually going through it. I wish I could help carry some of their burden.

Tomorrow a special fast is being held for Ian. Justin and Jenn have invited all who are willing to join in their fast for Ian. We will be participating. Please keep their family in your prayers. We hope and pray that Ian will get that miracle that we are praying for.


Friday, September 28, 2007

Positive Attitude

Given the circumstances of Tim being gone for a couple of days, I think that I have managed fairly well. And what I mean by fairly well is that I am still alive. The house is a mess, the laundry is not done, and 2 days worth of dishes are still in the sink. But to be honest I am not too worried about it. I figure that as long as people are fed, homework is done, and people aren't clawing each other's eyes out at the end of the night, then I consider it a good day.

My mom has been doing most of the shuttling of kids to and from school and sporting practices. Gavin and Ethan have each had their moments but overall they have both been pretty good boys. I've been bribing Gavin with fruit snacks to take naps. Whatever works. I am not sure when Tim will come home, I haven't heard anything yet. I think I am going to hit him up for a nice massage when he gets back though. Don't you think that's fair?

This positive attitude of mine may change in just a little bit. Friday's are early out and the dynamics change when all 4 of the kids are home for long periods of time. Friday's are hard. At least when Spencer gets home, he can keep an eye on Gavin while I take a shower. It's amazing what you take for granted.

Ethan is starting to laugh and giggle now. It is the CUTEST little laugh you've ever heard. It's so fun to see his own little personality develop. He has also learned to stick his whole fist in his mouth and gag himself. It seems like all of my kids have done that.

Well I can't say enough how blessed we've been. Thanks to all of you.


Wednesday, September 26, 2007

Post OP Appointment

We just got back from Ethan's post op visit at PCMC. We had chest x-rays taken, lab work drawn, an EKG done, and his vital signs checked. At this appointment he weighed 15lbs 4oz. His blood pressure was still a little elevated but he was also kind of fussy and moving when they took it. The MD didn't want to do anything about it right now because he is already on blood pressure meds. Everything else looked ok. They reduced his Lasix from 3 times daily to just once a day and they also took him off of the Aldactone. This is good news because he really hates both of them. The best news about this visit was that while on 1/2 liter of oxygen his sats were 91% and on room air it was between 81-84%. They said to wean him off of his oxygen for the next couple of days and as long as his oxygen saturation's stay above 80% then he doesn't need to wear the oxygen. If it won't stay above 80% then we just have to keep wearing it. Anyway, this was a great appointment and we don't have to go back to the cardiologist for 3 months. Yeah!

I went to Target today and picked up the pictures that we'd taken before Ethan's surgery. Despite it being such a horrible sitting, the pictures actually turned out rather cute. You'd never know that my children can be monsters.

Tim is leaving today for the muzzle loader deer hunt. I don't think it was an accident that he didn't mention this until last week. I think he knew how overwhelmed I can get and figured I couldn't say no when things were already in motion. He will be gone until Saturday. I hope I am still alive when he returns home. He is my rock.

We appreciate all of the support and prayers that we have received and we continue to ask for you to remember little Ian as well.


Monday, September 24, 2007

Ian Needs Prayers

At this time I would like to ask everyone reading this blog to say a special prayer for Ian Pearson and his family. His surgery did not go as well as hoped and is in a very critical period of recovery. It is so hard to imagine what their family is going through right now. It definitely hits close to home. Although they may not know you personally, feel free to post any comments of support on their blog. I am sure that they would appreciate all the prayers and voices of support. You can reach it through "Ian" under my friends link.


Sunday, September 23, 2007

Day by Day

This week was my turn to go to church while Tim stayed home with Ethan. It is always so nice to go and mingle with ward members and to be reminded why we are here. It definitely helps me decompress from the stresses of the week.

Not much is new with Ethan. We are still just doing the recovery thing. There are times when he seems happy and normal, and then there are times when he is still very fussy and needy. Last night he had a screaming fit which lasted at least 20 minutes, maybe even longer. I had tried everything to try and settle him down. I tried holding him, giving him his blanket and binkie, soft music, pain meds, feeding him, laying him in his bed, laying with him on my bed, walking him around the room. NOTHING would work. I was on the verge of tears and had to walk out of the room and let Tim take over. It can be so stressful and frustrating not knowing what he needs. I think he was feeling some of my anxiety at a certain point, because when Tim took over he was quiet in less than a minute. As grateful as I was to have him finally fall asleep, it makes me feel like somewhat of a failure as a mom.

Ethan has a follow up appointment on Wednesday with his cardiologist and the surgical nurse practitioners. I hope everything is doing well by their standards and maybe we can get off some of his medications. Med time is still dreadful.

I would like to mention that some good friends of ours, the Pearson's and the Homer's, are having some surgeries coming up. The Pearson's are sending their son Ian into surgery tomorrow. Ian was born the same day as Ethan and we were in the PICU together. His heart condition is different than Ethan's but he has since gone into heart failure and has been in the PICU for a couple of weeks now trying to get strong enough for his surgery. Also, the Homer's, who were also in the PICU with us, are going to be sending their son Alex for the Glenn surgery in about a week. He has the same condition Ethan has. Both Ian and Alex are on our "friends list" if you would like to get to know them better. Please keep them in your prayers. We know what the power of prayer can do, and I know that these are great families and would appreciate any prayers and support coming their way. These are very serious surgeries and very scary times as I can attest. I pray that all goes well for them and their families.


Thursday, September 20, 2007

Sanity? What Sanity!

Oh my gosh! Gavin is going to drive me CRAZY! I love that child to death but man he is in to everything. Just imagine two brand new packages of size 2 and 5 diapers. Now imagine them strewn all around my bedroom. Sound bad? Well, add a brand new box of cheese nips poured out in the middle of the room and crushed into various size pieces and now your getting a better picture of what my day has been like.

You may be wondering where I was during all of this? Well, I was trying to clean the kitchen that had been mostly clean but now has half soggy cereal and spilled milk on the counters, chairs, and floors from this mornings breakfast. Not to mention the "attempt" to clean it up by one of the kids by just setting a dish towel on a portion of the spill, which of course has dried, and the towel is now stuck to the floor. And no, I did not supervise breakfast because I was absolutely tired from another bad night with Ethan. If this was not my house and my children, I am sure I would find it more comical.

I feel like I have taken two steps backwards. Ethan the last couple of days and nights has been sooo fussy. I feel bad for the poor baby. I try everything and I can't console him. So because of this, I can't seem to get anything done. For example, it is 1 in the afternoon, and I still have not showered. Gavin is finally interested in a tv show which is how I have a minute to decompress by writing in this blog. I know every mother feels like this at times so I can't feel sorry for myself. The ward is bringing in dinner tonight which I can't thank them enough for. Even though it has been a bad day, I still have been blessed with great support and tomorrow is another day.

I know Tim has talked about having some 1 on 1 time with Gavin. I think he is just acting out because of the situation we're in. I hope it starts to improve. And if not, I hope he just takes a nap! :)


Wednesday, September 19, 2007

Restless Night

Well, the previous entry when I stated that I was getting enough sleep and was well rested? That just went out the window last night. I am not sure what Ethan's problem was but he had a big screaming fit in the evening and had a hard time going to sleep. Normally I just put him in his bed with his binkie and blanket and he just goes to sleep. But last night he kept fussing and fussing until I layed him down next to me. And then all through the night he was very restless and got up at least 7-8 times. The sad part is that he finally looks like he's sleeping soundly and I have to wake him up to give him his meds. My mom is picking up Gavin today to play at her house and so if I can get my laundry done early, I may be able to take a nap later on today. Yeah!

Gavin had a hard time yesterday. When the baby was sleeping he would intentionally yell and make these loud barking noises. He would jump on the bed around the baby. And then he would just laugh when I told him to be quiet and stop jumping. Jenn called in the early afternoon and came and picked him up which was such a blessing. There are days when it's not too bad to have both Ethan and Gavin, but when Gavin is in one of his moods, it is so hard to have a shred of sanity at the end of the day.

It sounds like the baby just woke up, so I will hurry and give him his meds while he is awake.


Tuesday, September 18, 2007

All is Well

I see improvement in Ethan each day. He is still very clingy and doesn't like to do any one thing for more than 10 minutes. I've started stretching out his Lortab doses but I've been giving the Motrin whenever it is due. I've heard of a couple of babies having withdrawal issues after all of the pain medications that they get with heart surgery and I want to avoid that if I can. However, if Ethan appears uncomfortable I don't hold out. He gets what he wants.

I feel like I am starting to catch up on some much needed sleep. I haven't been able to take any naps yet, but I am sleeping better at night. It's amazing how much it easier it is to deal with life when you are rested.

I appreciate all of you and your support.


Sunday, September 16, 2007

Home Recovery

Ethan is doing well at home. We've had no major problems, but Ethan is a 24 hour a day job. He is definitely in pain and we have to be very conscious of keeping up on his motrin and lortab. I feel like I am a human clock. I am constantly thinking of what time it is and when the next medications are due. I hate medication time. Ethan struggles, and screams, and spits, and this morning he even threw up all over himself and my bed. We then had to start all over. He doesn't trust us when we put anything in his mouth. He's not even crazy about his binkie anymore.

When his pain is under control, he does pretty good. He is still very needy and doesn't like to be alone. It is so hard to know what he needs. Tim always assumes Ethan is hungry when he starts to fuss because that used to be the only time he would get grumpy. But I try to feed him and there are many times that he wants nothing of it. Even if his pain is controlled, I just think he is uncomfortable and doesn't know what he wants. It makes getting anything done pretty hard. I just have to wait until he drifts off to sleep to try and take care of the house and the other kids. It may not sound like I do much, but I tell you, by the end of the day, I am exhausted. I will continue to write in these blogs as frequent as I can, but it seems that there are not many exciting things happening.

Gavin is home from spending the last couple of days with various family members. He was excited to see Ethan for the first time yesterday but he does not like his "owie". When I was changing Ethan's clothes, Gavin kept repeating "Don't see owie, don't see owie". He's been very sweet with Ethan but he still has a hard time being quiet around him. Gavin can be very loud and it stresses Ethan out. Spencer and Emily are still doing really well. Spencer made a great tackle in football yesterday and his team won. They've only played 3 games but are currently undefeated. Emily has been really helpful lately and is really enjoying her soccer. It's crazy how life just keeps moving on. We'll just keep doing our best to keep up.

Thanks to all of you.

Friday, September 14, 2007

Home Sweet Home

Yes, it is true. We were discharged from the hospital and arrived home around 2:30 this afternoon. They said his echo today looked the same as the echo they did after his surgery in the OR. They also said however, that he did have some mildly decreased function and a bit of regurgitation in one of his valves. This was the first I'd heard of any of this but no one seemed too concerned. It does concern me however because this if this ventricle looses too much function, it's the only one he has. I'll have to talk with the cardiologist about it when he goes to clinic on Sept. 26th for his post op visit.

Ethan has come home on 8 different medications which I have to give him all throughout the day and night. And for the most part he is pretty pleasant. He definitely gets grumpy and cries a lot when it is getting close to time for his pain meds. And he doesn't like to be alone. If I even leave the room, he will usually start to fuss.

I had been told prior to his surgery that most of his recovery period would take place at home, but I'd never expected to get sent home this early. I didn't even have any of his clothes at the hospital for him to wear home. They had to give me a T-shirt. I know that he went into this surgery strong, but he came home in the amount of time that our C-sections go home where I work. And this is obviously more extreme. In fact, I felt like we were behind schedule when they couldn't get him off of the ventilator as soon as they would have liked. But after that happened we just went on warp speed. It makes me feel like I was over reacting and that people won't believe me when I talk about what a serious, life threatening, heart condition he has.

I shouldn't be baffled at his strength and his determination to beat the odds. I know that we've been blessed with an amazing support system and that the Lord is watching over us. But because we have been so blessed, I feel an extra pressure to live worthy of those blessings. I feel so indebted to all of you. I know that Ethan has a mission to fulfill on this earth and I am so glad to see him doing well.


Are They Crazy?

Well, I ended up staying the night at the hospital instead of Tim because the hospital called and said Ethan would not eat out of the bottle. They were concerned that he was going too long in between feedings and needed to have more intake. So, of course as soon as I got there he wanted to eat and did just great. He was actually in a really good mood and it was so nice to see the light in his eyes again and an occasional smile.

This morning when we woke up he was again in a great mood and is beginning to let his personality shine through his crummy situation. They brought him in a swing which he loves and all morning has just been swinging and watching tv.

Now here is the crazy news. When the doctors made rounds this morning, they said they were going to remove his pacer wires and get another echo today. And if all goes well with that, then they will probably send him home! Are they sure? Did anyone forget he just had open heart surgery? Well, I have to assume that they know what they are doing, but it sure scares me to take him home so early. Maybe I am just basing this on the last surgeries time line. I knew that this one goes much faster. They had told us to plan on 7-10 days. But today is only day 5. I guess we'll just wait and see.

It is so funny to hear all of the staff that see him for the first time. They all say that he is too "healthy" (meaning chubby) looking for a heart baby. I just have to attribute all of this to all of the prayers that have come our way for a good outcome. I know that we are being watched over. (I only wish I could attribute my "healthy" shape to divine intervention). I will update more as I hear. Who knows, we may be sleeping together as a family tonight. :)


Thursday, September 13, 2007

We're Outta There!

Today has been a great day. When I arrived at the hospital this morning they were preparing to transfer us out of the PICU up to the surgical floor. When we got up to our new room it was so nice to see a recliner to sit in, a parent bed to sleep on, and a personal bathroom. It may not sound like much but it makes a huge difference when you are there all day. It is also much quieter than the PICU. He actually seems to be resting better.

Today he got his arterial line out. So all he has left is one IV, pacer wires, oxygen, and then the leads checking his vitals. They also switched him from all of his IV medications to oral meds, so hopefully if his current IV goes bad they won't have to even start another one. They leave the pacer wires in usually until they are close to going home because they are surgically implanted on his heart and can't be put back again if he were to have an irregular heart beat. Luckily though we haven't even had to use them this time.

I think Tim will be the one to spend tonight at the hospital and I will stay there Friday night. I think it will be good to rotate so that we can each spend some time with the other kids. They all seem to be dealing with all of this rather well. Again, I just wanted to say thanks for all of the help with babysitting and rides to and from school and sports. It takes a lot of stress and anxiety off of me to know that they are being taken care of and that their lives are hopefully as normal as possible during this time. Like I'd mentioned earlier, there is absolutely no way I would have been able to do this without all of you and your help. And I can't forget to mention the meals that the ward has been bringing in. They have been such a blessing. After spending all day at the hospital and then trying to get homework, laundry, and all of the other various household requirements taken care of , it is such a blessing to not worry about what to fix for dinner. I'd better be careful though, I might have to become a better cook after my family gets such great dinners. Thanks again to you all.


Wednesday, September 12, 2007

He's resting better

Ethan seems to be doing much better now. His blood pressures are coming down which I think helps with his headaches. I was even able to start breastfeeding him again, however it is kind of awkward with all of the lines and tubes. In fact the second time the nurse handed him to me to feed, his arterial line tubing became disconnected and blood just started spurting everywhere. I quickly reconnected it and she made the comment that she was so glad that I was a nurse, not only to have fixed it, but so I didn't freak out with all of the blood.

My dad and I went up to the hospital tonight to see Ethan. He looked so peaceful and relaxed. I think he may have been having good dreams because he was cooing and having little smiles in his sleep. My dad however got the first real smile since surgery. Ethan had been slowly trying to wake up. He would hear us talking and try to open his eyes but then they would just roll back and close. But one time my dad was talking to him, they made eye contact, and then there it was. The cutest smile. I'd been working hard all day to get it but I'm glad Grandpa Gary got it instead.

We took him his mobile that he really likes that his Grandma Betty and Grandpa Larry had bought him the last time he was in the hospital. I think he will really like having it with him. I also took his ducky blanket home and washed it because it was getting kind of yucky. Plus it smelled like the hospital. He still enjoys listening to the CD's. I think it actually helps him focus and to not be startled with every noise the hospital has to offer.

It is still so hard to leave him and go home, but at least tonight I feel better knowing he is resting comfortably. I hope this is a continuing trend.

I also wanted to just thank everyone (Family, Friends, Neighbors, Ward Members, and even all of you who I haven't met but are praying for us). I can't express to all of you the gratitude that I feel for all of your help (for example: babysitting, rides, meals, prayers, and kind words of support). A simple thank you does not do it justice. I am so blessed to have such a great support system. You are all the reason that I am even coping with this. Please know my love for all of you.



Today when I woke up I was feeling much better than last night. It is just so hard to leave your baby knowing that he is in pain and uncomfortable. I think it also didn't help that I was doing laundry last night and putting away his little clothes. I just want my baby to be home.

This morning when I arrived at the hospital, Ethan looked like he got into a cat fight. I guess around 8:00 this morning, the nurse had left the room to get some morphine for him because he was getting agitated. In the minute or two that she'd left the room, he'd had another melt down and scratched up his eye pretty bad with his arm board. They were worried that he'd scratched his cornea, but they did a test with dye and a special light and it looked ok.

Ethan is still having some blood pressure issues. They started him on a different medication this morning and hopefully this will help bring it down. We'll just have to wait and see. He is also starting to get unhooked from some of his lines. They took out an IV, 3 chest tubes, his urine catheter, the RA line, and the LA lines today. The great news about this is not only is he more comfortable, but today I got to hold him! They also started him on oral feeds last night and said he did really well. So today when he gets hungry again I get to try and breastfeed. I am not sure if he will want to but either way, we are moving in the right direction. They said if all goes well today, we will probably be moved to the surgical floor tomorrow. Overall, today has been a really good day. Thanks again for all of the support.

Tuesday, September 11, 2007

A Quick Update

Tim was able to go and see Ethan after work this evening while I was back at home getting the kids' homework and laundry done. He said that when he first arrived at the hospital, Ethan was calm and relaxed but then had an episode where he became very angry and began thrashing around. Tim said that he immediately went purple. I guess the nurse quickly called in some help because he was pulling on all of his lines and needed to get him calmed down to protect his drains and tubing. He had IV's in each foot which he pulled out and will need to be restarted. They gave him some morphine which helped. When I heard all of this from Tim, I quickly called the nurse to see if he was ok. She said she was in the process of trying to get a hold of the doctor to see if they can start feeding him. He hasn't had anything in his tummy since Monday at 2:30 in the morning and I am sure he would feel better if he wasn't starving. I am not sure if they will let him take a bottle or if they will just place a feeding tube. Also, I had forgotten to mention earlier, but he had a critical low potassium of 2.8 today, so along with all of his multiple other medications he will now be getting potassium riders until this stabilizes. It is such a balancing act to keep everything where it needs to be.

I personally feel like I've hit a wall. I can hardly keep my eyes open and I feel much more emotional and stressed tonight. Up until this point I've been really proud of myself. For the most part, I feel I've kept it together fairly well. I've definitely felt more prepared. But even still, although you know what to expect and have been able to prepare, it is still so difficult to actually go through it. And even though Ethan is doing well, it is so taxing to sit at his bedside and see him in pain. I just think the tears are going to flow tonight and I hopefully will feel better in the morning. It is such a roller coaster ride. Please pray for us.


Day 2

So far today things have been going well. Ethan's temp is down but still fluctuating between high normal and a low grade temp. He is still on the tylenol and antibiotics. He was having a difficult time this morning. He was very aggitated and upset and the medications they were giving him just didn't seem to help. I started playing the CD's that I'd bought for him and have been playing the last couple of weeks. They actually really seemed to help.

They've also been trying to get him off the ventilator for a while now but he's been too sedated. So, they stopped his fentanyl drip to help him wake up. They also pulled his subclavion line. He actually became much calmer when the fentanyl was off and opened his eyes for a few minutes while I talked to him. But the good new is that it did the trick and they were able to extebate him around 2:00. He did so good. His eyes were open and he was very calm. After they took it out I went next to his crib and he just started at me for about 2 minutes. He was also reaching up to try and touch my face. It was so sweet. I know that this is just one moment of one day, but it was so nice to see him recognize me and feel like he was comforted by me being there. He has been sleeping since. Well, I will continue to keep everyone posted. I apologize for all of the small little details, but they are big milestones for me. Thank you all.


Monday, September 10, 2007

It Doesn't Seem Right

It doesn't seem right to come home from the hospital without Ethan. The last time we were in the hospital he'd never been home so we didn't know any different. This time, to come home to an empty crib is definately more unsettling.

I dropped Tim off at home around dinner time and my Dad watched the kids while my Mom and I went back up to the hospital after the evening shift change. It was definately harder seeing him tonight than earlier in the day. He is a lot more swollen and doesn't look like himself. He is also now running a fever (38.9c) which they say is not that uncommon if he is stressed. He is getting tylenol around the clock and will also be started on antibiotics tonight. The hardest part about tonight however was seeing him squirm around in discomfort. When he has the ventilator in there is no sound when he cries but you can tell he is crying. He quivers and draws up his arms and legs, his face turns purple, and his mouth is making the crying motion. It just breaks my heart. It is the hardest thing not being able to comfort him and actually feeling like I am aggitating him because he hears my voice and wants to be held. I know that he is still pretty drugged up (thank goodness) but this is when I get the most stressed and emotional.

They wanted to get him off the ventilator tonight but because he is still requiring more oxygen than they want, they are not going to take him off until the morning. I will be glad to get it out, however it might be even worse to hear him scream. They are starting him on a fentanyl drip for pain and mild sedation and will give him versed as needed if he gets too aggitated.

I can't thank all of you enough for your support and prayers. Again, feel free to share this site with anyone interested.


He's Doing Well

Tim and I were just in the PICU to see Ethan and he is stable at this time. Other than all of the lines, the first thing I noticed was how puffy he is. That is normal and happened last time but I guess I forgot. He is on a ventilator and numerous medications and pumps. He has 3 chest tubes, a urine catheter, subclavion line, arterial line, pacer wires, an RA line, and a pulmonary line. He was receiving a blood transfusion when we saw him. His pressures were a little high but are coming down, and his oxygen sats were low (around 71%), but are coming up and are now in the 78-79% range. Please continue to pray for a speedy recovery. Thanks!


It's Over!

Tim and I are all smiles. Ethan is out of surgery! Dr. Hawkins came in and talked with us about 15 minutes ago. He said that the surgery went as well as could be expected. He also said that although Ethan was on the heart/lung bypass machine for about 2 hours, they did not have to stop his heart this time. He said that there were also no irregular heart rhythms this time. He also commented on how "healthy" Ethan looked, and said that his normal 4 month old Norwood surgeries don't look like that (he didn't want to say that he was chubby). We had to remind him that Ethan was the one that didn't go home on a feeding tube, and he says that he is still the one and only HLHS baby to do that. As much as we are eternally grateful for a good surgeon, we recognize the Lord's hand and all of the prayers that are with us. We expect to be able to see Ethan in about 30 minutes. We'll write more later. Thanks to all of you for your amazing love and support!


We're Here

We just sent Ethan off with the anesthesiologist about 15 minutes ago. We've been up since about 5:30 this morning. We arrived at the hospital at 7:00 to get checked in. They gave him some medication (atropine) while we waited which will speed up his heart during surgery. I guess the medications that they give him in the OR slows down his heart rate and they want to make sure that he is able to get good perfusion to his body. The anesthesiologist said that they will do all of the prep work (IV's, lines, sedation) and then will perform another Echo before they start the surgery. They will then come out and update us when the first incision is made. He said that this will take about an hour and a half. So Tim and I are just waiting.

It was so hard to bring him to the hospital this morning. The last time we did this Ethan was already here and so we were rushing to come and see him. This time however, I wanted to drag my feet. I wanted every last minute with him. Although hungry, Ethan was calm and had fallen asleep in my arms while we were waiting in pre-op. He only fussed a little when we handed him off. That was tough. It is so hard to relinquish all control to someone else. I am sure they will take good care of him. Please keep Ethan in your prayers today. I will update more when I hear.