Wednesday, December 31, 2008
Tuesday, December 30, 2008
Thankfully everyone has been healthy so we didn't have to stay away from anyone, we just had to be careful and not pass him around too much. The only repercusion is that Jack is pooped. He's used to being cooped up with me all day and suddenly he's turned into a party animal. I think he finally got into the partying mood today though because I swear he talked and babbled happily non-stop, beginning at 4:00 this morning. Silly boy.
Jack got some awesome toys, but his favorite Christmas present was from me to both he and his dad. Hardy adores bulldogs and plans to get one for our family someday. Since we're not quite ready for that, I found a stuffed one that's bigger than Jack to tide the boys over hopefully for a few years.
Friday, December 26, 2008
Tuesday, December 23, 2008
What's a mom to do but take a picture of a cute tubeless face and tape it back on?
Sunday, December 21, 2008
Thursday, December 18, 2008
Jack had a sedated echo this morning. Last time we did this we had to spend the entire day sitting around in the recovery room and it was awful. This time we came prepared with toys for Jack, treats for us, and a plan to take the day in shifts. Instead we were oh so happily informed that he's now big enough that we didn't have to do the 12 hour stay and could go home as soon as he woke up and ate. Happy day! It took a little while, but he finally came around and we were able to meet with Dr. Mennan and get out of there 8 hours earlier than anticipated. It was great.
Even better was the good news that Jack's heart is still looking good. His sats were in the mid 80's and he's getting quite chunky. We are scheduled for an MRI on January 14 and will do his surgery the following week.
As an added bonus we got to see Jack's heart buddy Daxton who was in for an appointment as well. It was great to see you Hilary!
We feel so blessed that Jack is doing so well and can't wait to spend some time with his cousin's over Christmas.
Friday, December 12, 2008
She loves Jack with all of her heart. I don’t think Aimee has got a good night sleep in six months. Whether it is getting up to feed Jack, or pump, or worry she has sacrificed sleep every night on his behalf. She never complains about taking care of her child. She truly understands what it means to be a mother. I love watching her interact with Jack.
She is in her own words “Damn Smart.” One of Aimee’s greatest gifts is her mind. She has always excelled in anything she has done. She was a high achiever scholastically and enjoyed a very successful professional career in different capacities before she decided to stay home with Jack. This success has helped her develop a confidence which I love and admire.
Aimee has never once complained about the burdens of being a “Heart Mom.” From the day of Jack’s diagnosis she sought to educate herself on what we would be facing and making preparations for the challenges that were ahead. She found other families that had been through the same thing and has become very active in this community. She gives freely of her time to help others who are in the same situation.
Aimee is the most patient wife ever!!!! She let’s me coach basketball despite the added burden that it puts on her. This is a total indulgence on my part but something that I love so much. Not only does she allow me to be gone several hours a week she puts up with me telling her a thousand things related to basketball that she probably cares nothing about. She also does not complain when she is trying to sleep and I am on the phone to Barnes talking about basketball all the time. I hope she knows that I recognize this sacrifice!
Aimee is the most trustworthy person I have ever known. I have never once doubted anything she has told me. I have never seen her take a short-cut in anything be it work, a church calling, or any other assignment she has been given.
I could go on all day. I consider myself so lucky that I get to spend the next 30 years with her. I know that Jack already adores his mother. He is so fortunate to have her and she will help him so much throughout his life. Happy Birthday Aimee!!!
Tuesday, December 9, 2008
- His favorite sounds are a) snorting, and b) spitting/farting. He thinks they are hilarious. i guess our friend Travis is right - they are innately funny.
- When Jack gets excited he loves to slam his little feet down on the changing table and wiggle all over.
- He is a major Mommas boy. He watches me all the time. No matter how entertaining the other person who is holding him, he always keeps his eye on me. It makes dad a little jealous until I remind him that he is also a mommas boy so he's just taking after his father.
- His hair is starting to grow in and he's no longer a red head. Oh well, it was fun while it lasted. Now he's just a dirty blond like his mom and dad.
- Jack is going to be spoiled at Christmas. I'm trying not to go too crazy, but there is so much fun stuff out there. Hardy's just lucky I can't leave the house very often or I might really go overboard.
Friday, December 5, 2008
Thursday, December 4, 2008
Jack looks like he's been playing with a kitty this week, but no, they are self inflicted wounds on his cute face. Darn sharp baby fingernails. I swear I file them down every morning and by night they are razor sharp.
I called cardiology and like last time was again advised to bring him in if he didn't calm down within the next little while. He finally started breathing normally so I decided to take him home, but I was really nervous to have him in the back seat alone. Thankfully my mother offered to come stay the night and ride in the back with him. I was extra glad she came with me after he started throwing up when we got home, but ultimately I think that helped him clear out some of the fluid that was building up and he wound up having a pretty good night. So far he hasn't developed any symptoms of being sick today. He's just been extra tired, but still cute and smiley.
I've heard things get easier after the next surgery, so let's hope that's true. I think he'll be getting his Glenn in about 6 weeks or so, so hopefully that will help and major crying fits won't be quite so awful in the future.
Monday, November 24, 2008
The little fella is getting to be not so little, weighing in at 12 lbs 9 oz. Dr. P was very pleased with his size and how well he's eating. His sats were in the low 80's on his 1/4 liter, and his EKG and xrays looked good so we are on track for his Glen in January which they are going to try to schedule this week. Next steps are another sedated echo in three weeks, then an MRI a week or two before his next surgery, depending on when they schedule that. Dr. P said that in his experience kids who start out doing well continue to do well, so that was really good to hear as Jack has done great so far. We hope it continues to be true.
We sure do have a lot to be grateful for this Thanksgiving. In particular we are grateful to all of you for your prayers and well wishes for Jack. We feel the power of those prayers every day as they strengthen us and help us through each situation as they come. Our sweet baby who we weren't sure would come home from the hospital is now thriving and growing and getting trickier by the day. It is such a blessing.
Saturday, November 22, 2008
Wednesday, November 19, 2008
Tuesday, November 18, 2008
Unless things get worse I'm going to avoid taking him to the doctor since there isn't really much they can do for him anyway. He's too young to take any medicine so I'm just loading up on the vitamins and healthy food, hoping they'll pass through my breast milk into his system to help him out. It's worth a try.
Thanks to all those praying for him and wishing him well. Hopefully we'll have healthy news to report in a day or two.
The good news is that I finally got them to schedule us for a cardiology appointment. We go in to see Dr. Pulchaski next Monday. Too bad it took a trip to the ER to get them to schedule it.
Monday, November 17, 2008
Saturday night as I was putting Jack to bed he choked a little on some phlegm which set him off crying for nearly 2 hours and left him limp and breathing heavily. He looked awful so I called cardiology and they said to bring him in if he didn't recover within 30 minutes. Hardy gave him a priesthood blessing and a few minutes later his breathing calmed down significantly, but by morning he had developed a raspy cough. He also had very little to eat during the night and hardly peed at all - all bad signs. When I called cardiology in the morning to see when I should get nervous since any little bug can be a big deal for babies in the Norwood Stage, he said we should bring him in.
We got to the ER around 10AM and thankfully it was pretty empty so they got us in fairly quickly for a chest xray and EKG. The results showed that his heart is slightly enlarged which concerned the ER doc that he might be in heart failure. Eventually a cardiologist showed up and determined that everything was okay and he's just a little bit sick - not heart failure. Whew! They considered keeping him over night for observation and then decided that Hardy and I could handle it. Since then he is still not eating or peeing great, but he's doing better. They also sucked out some of his boogers and are testing for a virus so they can determine if it is a strain we should be worried about. We are still waiting on those results. We were finally able to bring him home around 2:30 p.m.
Thankfully Jack was a trooper the whole time. Despite not feeling well, he managed to grin at several of the docs and the radioloists who were poking at him. He barely even flinched as they put on and pulled off all the EKG probes. He's now sleeping pretty soundly, as are mom and dad. Trips to the ER are exhausting. The only perk is that they have really good coke at the Rainbow Cafe.
Thursday, November 13, 2008
We still don't know when his next cardiology appointment will be. It was supposed to be next week but they still haven't scheduled anything despite my phone calls. Hopefully we'll get in before Thanksgiving.
Sunday, November 9, 2008
Wednesday, November 5, 2008
I can't believe how quickly the time has passed. He is so sweet and doing better than I ever could have hoped. We pray every day in gratitude for Jack and how well he is doing and hope he keeps up the good work.
Saturday, November 1, 2008
Wednesday, October 29, 2008
Here are a few of Jack's many funny faces. He is a tad dramatic (he gets that from his father ;).
Saturday, October 25, 2008
The pediatrician called a little while ago and said his xrays showed a lot of gas, but he had also been crying quite a bit from all the tests and torture and she didn't think that was the cause. She looked to see if he had any fissures on his bum causing the blood, but the tiny one she saw didn't seem big enough to create the amount of blood we're seeing. His blood work looked normal and didn't seem to indicate either an infection or an allergy, so now we just have to wait for the results of the stool sample to see if we can get more answers. Actually, first we have to wait to get more poop that we can take out for them to test. They needed more than he was able to provide at the time so we have to collect a bit more. Ah, the beauty of motherhood. Collecting stool samples and trying to comfort during painful proceedures.
As we were waiting for the lab technician to take his blood I kind of hit the wall and was just feeling a bit sad and exhausted and I looked down to see my sweet baby just grinning at me. What a trooper.
Friday, October 24, 2008
Thursday, October 23, 2008
We took some handsome photos this morning in his snuggly Halloween outfit (thanks Hymas's!).
Tuesday, October 21, 2008
Last Thursday Jack and I met my mom and sister and her kids at Gardner Village to see the witches. It was "Wee Witches Weekend" so there were lots of kids in their Halloween Costumes running around. Very cute. Luckily I had Jack dressed up in a cute halloween outfit so we blended nicely. Of course he slept most of the time in his stroller, but when he did wake up he was so good and just looked around at all the sights. It was so nice for me to get out of the house. And my niece and nephew thought it was pretty cool to have Jack there with them. We then took Jack on his first picnic to the park. He did great and was so nice up until the last 5 minutes, but by that time he was ready for a nap so who can blame him.
Jack's poor little bloody nose is doing a little better these days. Thanks to a heart mom I discovered that they have humidifiers that can attach to the oxygen. I had to call my pediatrician and get a perscription, which seems kind of lame to me, but the humidifier finally arrived and ever since we started using it he hasn't been waking up quite as stuffy or as bloody.
Friday is Jack's first echo since his surgery. I'm trying not to be nervous, but I can't help but worry that they are going to come out and tell us that things aren't looking as good as I like to think they are. We'll deal with whatever comes though. This is where faith and prayers keep me thinking positively. I know Heavenly Father has a plan for Jack, even if I don't uderstand it at times.
Thursday, October 16, 2008
Question: Dad, when we go to church every week, all anyone does is talk about how good BYU is and how they should be ranked higher than they are. Does this mean they are not as good as everyone thinks they are?
Answer: Jackson that is a great observation. Yes, people at church school and other places will tell you BYU is always getting the short end of the stick on something but they usually end up looking kind of foolish. In 2000, before you were born all of the BYU fans were screaming about BYU not getting into a BCS game. Then they gave up 72 points to an unranked Hawaii team. They also lost their bowl game that year. In 2008 right after you were born all I heard about was how good BYU was. People at work were saying they should play in the National Championship game and that Max Hall would win the Heisman trophy.
Question: Who is Max Hall?
Answer: Someone who got exposed for not being very good on a Thursday night game against TCU and later that year against UTAH. Anyway, as I was saying, a lot of time we hear how good BYU is but they turn out to not be very good. Sometimes people just like to think their team is better than they are.
Question: How do you keep such reasonable opinions about the UTES?
Answer: It is easy son. I have watched the UTES go to multiple BCS games over the last few years so I don’t have that inferiority complex some of our BYU friends do.
Question: Doesn’t your friend Tyson epitomize every BYU fan stereotype you just mentioned?
Answer: Yes, but that is part of his charm
Question: He says the same things about the Cowboys as well, doesn’t he?
Question: So what about those people who claim that BYU does the right thing on and off the field so they are blessed by winning football games?
Answer: This is one of the reasons people don’t like BYU very much. Sometimes they say dumb things. Your Dad even emailed the BYU athletic director about this once since it bothered him so much.
Question: Dad what do you do then when you hear people saying all of these things about BYU and you know they are not true?
Answer: It depends on your circumstances. Sometimes you have to take the high road other times you have to set them straight.
Question: Will BYU lose to Utah again this year Dad?
Answer: Of course!
Question: Can we call your friend Tyson after the game?
Answer: We will see. The Cowboys are not doing very well this year either so it might be a little tough for him.
Question: Does he really think they are better than the Redskins?
Answer: (Chuckling) Yeah, he really does believe it.
I can’t wait to spend time with Jack watching games and cheering on the UTES!!!
Wednesday, October 15, 2008
Monday, October 13, 2008
The sad thing is that his cannula (the tube in his nose) is very irritating and makes his nose dry and he always tries to get it out by violently wiping his face on my shoulder. The result is that the inside of his nose is sore. I was trying to suck out a booger last night so he could breathe better before bedtime and it started to bleed. It was so sad. I don't mind his screams when he's trying to avoid getting boogers sucked out - babies do that. But sore bleeding noses that you then have to stick a big plastic tube back into is not fun at all. Darn oxygen. Oh, how I hope his next surgery makes it so he doesn't need it anymore.
Thursday, October 9, 2008
Monday, October 6, 2008
We went to the pediatrician again today to check Jack's oxygen. It seems he just hates cardiology because he was back at 84 again. I don't know why he gets so low when we go to Primary's, but I'm relieved he's back in a normal range. It makes me less worried. We did get a pulse-ox machine at home though thanks to our friends Charity and Dean (Thank you!) so we can keep an eye on him. We also had a fun surprise on our way out of the dr office when we ran into Brynn, another heart mom, and her cute kids Rylie and Alex. They were there for their shots and check up. Brynn is the cutest mom and a great inspiration for staying positive.
Friday, October 3, 2008
The cardiologist didn't seem overly worried since he hasn't gone down since last time, but he did warn us to keep an eye out in case he suddenly turns really blue which could mean a blockage in his shunt and we should call 911. That's always what you like to hear when you go to the doctor. He's hoping we won't need to do a cath before his next surgery to open things up, but we'll see. We are also scheduled for a sedated echo in 3 weeks to check on the function of his heart which means a 12 hour stay at the hospital, but hopefully we should be home by bed time. Dr. Manon also thought that since his sats are so low he most likely wil have his Glenn sooner rather than later, so probably in December. I was kind of hoping it would be after the holidays, but we'll do what we gotta do.
Our cardiology visits are always such a reality check for me. Jack is growing and learning and getting cuter every day so I sometimes forget that he's got major medical issues that are only going to get worse in the next little while before they get better. I just have to remind myself that all these heart babies have their own issues. Jack is a great eater and sailed through his first surgery so I guess if we have to pick a challenge we can deal with needing extra oxygen. I'm even working on not getting so frustrated when I trip over his tubes (which I do ALL the time) or have to continually fight the battle with his busy fingers to keep it attached to his head.
I'm so glad this weekend is LDS General Conference. I need a little inspiration to keep me going right now. I'm sure that will do just the trick.
I was so excited to go to cardiology this morning and report that Jack had not had a single incidence of going blue since our last visit. Yesterday he decided that he didn't want me to share that kind of news and had two, yes two, blue spells. The first happened as I was driving Jack to my sisters so she could watch him while we went to sweet Brooklyn Bailey's (another heart baby we met at PCMC) funeral. I got him calmed down fairly quickly and he bounced back just fine so I wasn't too worried about it, and thankfully my sister wasn't too worried to watch him then either. But then last night he threw a mega fit and screamed for a really long time. His tummy hurt and no matter what I tried he was just miserable. I kind of think his misery may be linked to his shots from Wednesday, but it's hard to say. I was minutes away from whipping out the big guns and asking my dad to give him a priesthood blessing (Hardy was at the Utah football game or of course I would have asked him to do it. Go Utes!), but then he finally calmed down and went to sleep for a long time. When he woke up he chugged a great big bottle and slept quite well last night so hopefully he'll behave today at cardiology. We would really love it if they would let him come off his oxygen, or maybe just have him wear it at night. He gets so agitated by it lately and I spend half my day and several times at night putting it back on after he's ripped it completely off. (That's his new trick, getting it all the way detatched from his face). At least we know he's got strong lungs though. He's definitely taking more and more after his father with his big loud voice these days.
Wednesday, October 1, 2008
The other good news is that he actually slept for a 6 hour stretch last night. It was so awesome. By the time he woke up at 3:00 to eat I had porn star boobs (too much info, I know) and was dying to pump anyway so it was terrific. I could really get used to only waking up once in the middle of the night. Already I feel so much more rested today than I have in a long time.
Friday we have his cardiology appointment. I'm making Hardy come with us this time so someone can sit in the back and keep the little guy happy. I don't want him to arrive blue this time so hopefullly (fingers crossed) they will take him off his oxygen.
Wednesday, September 24, 2008
Monday, September 22, 2008
Saturday, September 20, 2008
Thursday, September 18, 2008
Starting to get a few creases and big strong muscles.