Tuesday, May 29, 2007

Memorial Day Weekend

What a busy weekend! Friday night we had poker night here and the men played poker while the women chatted and played games. Saturday Dan had a bachelor party to go to in Lake Tahoe so my friend and her son came over to spend the night so we wouldn’t be alone. A few other ladies came over to visit that night too. Sunday morning I took the kids to church and when Dan got home we left for Oakland to spend the night at my cousin’s house and have a BBQ on Monday. Here’s where it gets interesting…

After the two-hour drive (during which both kids were awake the entire time) we arrived at Heather and John’s tired but happy to get out of the car. I wanted to give Ava a bottle and asked Dan where the paper bag was. “What paper bag?” he said. Um, the one with all the important stuff, like bottles, diapers, medications. That paper bag. It wasn’t in the house. It wasn’t in the car. It was in Sacramento.

My uncle was there and he is a physician’s assistant so he tried in vain to find a pharmacy that was open and that would make Drew’s very complicated compound. No such luck. So Heather and I drove back to Sacramento, picked up the bag that was sitting in the laundry room thisclose to the car, and then drove back to Oakland. We got back around 11:30 pm. We were both exhausted! I tried really hard to stay positive and not get super irritated, but I couldn’t help thinking, if Drew wasn’t sick, if we were any other family, we could have just gone to the store to buy diapers and bottles. Argh. It all worked out in the end though. Four hours, $30 of gas and two exhausted cousins later Drew had his medicine and we were able to enjoy the awesome BBQ on Monday.

This morning has been interesting as well. Both kids woke up early despite our best efforts to get them back to bed. Drew climbed into our bed and accidentally hit my head with his (I was half-asleep). It hurt so bad I actually started crying and I have a bump on my brow bone. Ava has been so cranky and crying for no reason that we can tell. She went down for her morning nap over an hour early. It seems like it’s going to be one of those days, so I’ve been praying Philippians 4:13 (“I can do all things through Christ who strengthens me.”) like its my mantra.

Here is a cute picture of Drew and his Daddy at the BBQ

Friday, May 25, 2007

Park Days and Playdates

We've had great weather this week and have been making the most of it by playing with friends and visiting various parks. This was our crazy schedule:

Monday-had Isabelle come over to play
Tuesday-visited a potential preschool then played with Abby and Isabelle at the "Adamson park"
Wednesday-met Isabelle and Emma at McKinley park then had gymboree preschool, then played in the pool at home
Thursday-adaptive PE (Drew calls it going to school), played at San Juan Park with Eben, then in the pool at home (no nap for Drew)
Friday-gymboree, then Rocket Park with Jack, Abby, Colin, Clare, & Eben, then came home and played in the pool (no nap for Drew)

We've been spending so much time OUTSIDE the house that I've barely had time to do laundry, clean up, etc. I guess that's what the weekend is for.

Drew and Issy taking a rest

Drew blowing bubbles

Ava clapping with excitement

Drew and Ava playing in the pool

Ava at the rocket park

Ava in the pool

Tuesday, May 22, 2007

Monday, May 21, 2007

This is Not the Life I Ordered

As I was sipping my coffee and watching the news this morning I saw a feature on a new book that is out called This is Not the Life I Ordered. First the title grabbed my attention because that is something I've said before, kind of. I think my actual words were "This is not what I had planned," but the message is the same. Anyway here is a brief synopsis of the book:

This Is Not the Life I Ordered is for anyone who has ever felt overworked, overwhelmed, or just plain unlucky (and, who hasn’t?!). Through this collection of stories, wisdom, and practical advice, readers will meet four ordinary women who have faced extraordinary life challenges. Together, they have a history of six marriages, ten children, four stepchildren, six dogs, two miscarriages, two cats, a failed adoption, and foster parenthood. One of them was shot and left for dead on a tarmac in South America and two have lived through the death of their spouses.

This book started simply with four friends getting together for "kitchen table coaching sessions" to talk about their lives. Week by week and story by story, they realized their great advice to each other could help other women struggling with life's myriad issues of work, family, and love, as well as the big questions of life and death. For over a decade, the power and strength of their collective friendship enabled these women not only to survive but to thrive.

Does that sound inspring or what? I haven't read the book yet, but I plan to go out and buy it as soon as possible. Here is an excerpt that I found on the website.

We learned an important lesson in our decade-long friendships. We learned that we had been fooled. We had convinced ourselves that if we could manage our schedules, break through the glass ceiling, spend quality time with our families, bring home the bacon (and fry it up in a pan) while bouncing children on our hips and creating warm and loving relationships with our husbands, in-laws, and colleagues, somehow, some way, we would be rewarded with the problem-free lives that had, up until then, eluded us. We were wrong.

I hope all the women who read my blog have a supportive group of girlfriends they can share their stories with. I hope we can learn to lean on each other and survive and thrive despite the unfortunate events that life sometimes throws our way. And I want to give a "shout out" to all my girlfriends who have been an incredible support to me during my hard times so far.

Wednesday, May 16, 2007

Ava’s Birthday Party and Mother’s Day

We celebrated Ava’s birthday at the park last Saturday. What a beautiful day for a party! The weather was great and the party was perfect! Ava was in a good mood for the whole thing! I don’t think she knew she was having a party, but she loves being outside and eating cake, so she probably just thought it was her best day ever! We had lots of friends to celebrate with us and even some out of town family! Both grandmas were here too! My photographer friend took some great pictures, but I don’t have the files yet. I’ll post some of those when I get them, but in the meantime, here are a couple that I took.

Sunday was Mother’s Day. We had another great day as a family. I opened presents & cards in the morning and then we all went to church. Ava fell asleep on my mom and she loved it! Then we all had a yummy lunch where Ava learned how to use a spoon. She used it more as a tool to push her food around the table than as a utensil, but either way it was a new skill. Then we dropped my mom off at the airport and I met friends for some “Mom time.” We got pedicures, some ice cream, and did a little shopping. Happy Mother’s Day to all the moms out there!

Celebrating Mother's Day with the grandmas

Ava honing her spooning skills

Monday, May 14, 2007

Cardiology Appointment

We had our appointment with Dr. Parrish this morning. We brought the Sildenafil with us and gave the first dose to Drew around 9 am. The nurse took his blood pressure every half hour and while it did go down a little, it stayed in an acceptable range. Drew spent the morning watching Happy Feet and Cars on our portable DVD player in the treatment room. He didn't even seem to mind the frequent BP checks. The medication should be at its peak concentration about two hours after it is administered so since we didn't see a reaction by 11:30 we were free to go. They started Drew on one-quarter the maximum dose and we are supposed to go back in one month to increase the dose. Also, we have to give him the medication three times a day, which means I'm going to have to remember to take it with us if we're out in the middle of the day.

On the way home from the appointment Drew fell asleep in the car before noon! This is very unusual for him, he hardly ever falls asleep in the car unless he's exhaused and all he did this morning was watch movies. His naptime isn't until 3 and even then he usually only falls asleep every other day. Since I was told that if his blood pressure got too low he'd get dizzy and pass out I was a little worried that this might be caused by the medication. I called Dr. Parrish and he doesn't think it was caused by the Sildenafil. I think Drew may be starting to get a cold (Ava came down with one last night) so maybe he was tired from fighting that.
Some technical notes about the medication:

--We were concerned that Drew would have to be on this medication forever. If it lowers the pressure in his pulmonary artery and they increase blood flow to the PA by doing the Fontan, won't he still need medicine to keep his pressure down? The answer is that when the pressure is lowered it gives the arteries the opportunity to heal themselves and then the pressure will be lower without medication.

--We wondered how they know if the medication is working and how they decide when to do the cath in the 6-12 month period. A lower blood pressure indicates that the medicine is working, but we won't know if the arteries are being healed until they do the cath. The nurse said they will probably do the cath in six months and if the pressure is not low enough continue the medication and do the cath AGAIN in another six months.

Drew watching Happy Feet

Friday, May 11, 2007

Check and Check

Authorization: Check
Compounding Pharmacy: Check

I am so excited! I love it when everything works out!

Since we found out on Tuesday that we would be postponing surgery and trying this new medication, I got to work on calling the pharmacy, calling the insurance company and looking up information online. No one at the pharmacy had heard of filling a prescription for sildenafil for a child. The insurance company had never heard of it either. And they don't cover sildenafil on any of their plans. I read online that it can cost $35 a day, about $1000 a month. The insurance company said they might cover it, but it had to be authorized first. So I called Dr. Parrish back and asked him to do that and gave him the number of our pharmacy. That was Wednesday.

On Thursday I called the pharmacy to see if the Rx had been faxed over yet. They said no and they didn't know if they could make it anyway. OK great. So I called Dr. Parrish again and said if they can't do it, then how about the UCD hospital pharmacy. I still hadn't heard anything back this morning and I am supposed to pick up this prescription and bring it with us to our appointment at 8:30 Monday morning. Time was running out!

But then one of the nurses from the heart center called and said they got the authorization from the insurance company! Yeah! But, they still hadn't found a pharmacy that could make the compound. I asked again about the UCD phamacy and she said they weren't open weekends and didn't make compounds. That made no sense to me, so I called them myself and, surprise, they are open 9-5 Saturday AND Sunday and they do make compounds with 24 hours notice! I called her back and it is taken care of! We'll pick up our prescription on Sunday and bring it with us to the appointment Monday morning. Now we just have to pray that the medication works and doesn't have any serious side effects.

Also, both my kids are sleeping and I've been able to make four dozen cupcakes and two round cakes for Ava's birthday party tomorrow. Now its on to 24 star-shaped peanut butter and jelly sandwiches and picking up a bunch of balloons.

Tuesday, May 8, 2007

Big, Unexpected News

The teams from UCSF and UCD had their teleconference this morning. I knew they were done by 9:30am, but I forced myself to wait to call the cardiologist until 1:00. He said there were a lot of people discussing the case and that they had all pretty much come to a consensus. They want to postpone surgery for 6 months to one year.

The reason is that the cath showed the pressure in Drew’s pulmonary artery to be a little high. The way his heart is now, the blood from his head and arms passively flows (via the SVC) to his pulmonary artery. If they do the Fontan the blood from his lower body will also passively flow to his pulmonary artery (via the IVC). This would create twice the flow and possibly twice the pressure. If the pressure is too high it can cause swelling in the face and head and fluid to accumulate in the belly. This makes the Fontan a higher risk than is typical.

So the question is can they do a two ventricle repair? It seems that everyone wants to, but just as I suspected, they won’t know for sure until they are in the operating room actually looking at his heart. If they do the two-ventricle repair his heart would function as a normal heart does and he wouldn’t have problems with the pressure in his pulmonary artery.

Since the only two options are Fontan or two-ventricle repair and they won’t know until they are in surgery, they want to lower the risk of doing the Fontan if it ends up they have to go that route. There is a medication that can decrease pressure in the lungs. They want to give Drew Sildenafil (yep, that’s Viagra) for 6 to 12 months to see if it helps. Then they will do another cath to see if the pressure has decreased. If so they will proceed with surgery, hoping to do a repair, but better able to do the Fontan if necessary. If the pressure hasn’t decreased, they may elect not to do surgery at all.

We have an appointment on Monday to discuss the side effects and risks of putting Drew on Sildenafil. If we decide to do it they will give him the first dose in clinic and we will have to wait 3-4 hours while they check his blood pressure every twenty minutes.

So, I’m not sure how I feel about this news. At first I was upset. I’m already anxious, I’m getting myself all geared up for surgery and now…we wait? And then we’re going to have to go through all of this again in 6 months or a year? I’m nervous when they say if the medication doesn’t work they may decide not to do surgery. I’m nervous that his blood pressure is already low and that the medication may make that worse. And I’m hoping that our insurance will cover Viagra for a kid because I read that it costs $35 a day.

On the other hand that will give Drew more time to grow, Ava will be older, and we’ll be able to go to all the weddings and graduations we have planned in June. And in my internet research on Sildenafil in children it says that it can increase their endurance and ease their breathing. Drew definitely gets tired much quicker than his friends. It would be nice if he had more energy to run around and he didn’t have to breathe so hard. And I am really pleased with our team of doctors because it seems like they are really considering all the options and trying to find the best treatment for Drew. I like that they really want to do a repair, but instead of just trying it, they are taking all the precautions necessary so that he will do well no matter which surgery they end up doing. And even though we are going to have to gear up and do this again in a few months, I do like the idea of not worrying about it for a while and just having a normal summer.

Monday, May 7, 2007

Happy Birthday Ava!

Today was Ava’s first birthday. I can’t believe how fast the year went by! She is still tiny, but full of energy! She never stops moving. She walks, runs, and bounces all around the house. She has the best smile and a great sense of humor. She is always making us laugh. Her birthday party is on Saturday, but today we did open some presents and have cake. Here are some cute pictures of my big girl!

Happy Birthday Ava!
Ava's new birthday outfit

Ava loves her new elephant rocker

Enjoying her birthday cake!

Playing peek-a-boo after her cake

Sunday, May 6, 2007

I love him so much

Drew did such a good job during his echo on Friday. It took an hour and a half and he lay still pretty much the whole time. He also said “it doesn’t hurt” when they had to put the stickers on him and “she’s looking at my heart” when they started using the transducer. We brought his favorite movie, Cars, and he watched it while the tech performed the echo. After it was over she gave Drew a prize. He chose two more tiny plastic alligators.

I was watching the screen the whole time and although his heart is imperfect, it was beautiful to see. The coordination involved is amazing. You can’t deny the existence of God while watching his tiny heart beating, all the valves opening and closing, the muscles pulsing at just the right time. And as I watched I found myself praying: please let me keep him. I love him so much.

We had such a great day yesterday. Our whole family was playing together and laughing and having fun. And I found myself consciously storing these memories, building up a catalog of good times, in case these are some of the last that we have. Is that crazy? It’s not that I think something horrible will happen, I just don’t know what will happen. And I don’t want to miss anything.

Drew finally got to take a bath yesterday. We were supposed to keep his puncture site clean and dry for four days, which meant no bath. Drew loves baths and would ask every night after dinner if he could have one. So he was really excited last night to finally take a bath with his sister.

Thursday, May 3, 2007

Now What?

It seems that the preliminary opinion on which surgery Drew will need is a two-ventricle repair. Dr. Teitel, who did the cath, thinks that Drew’s heart function looks good and that the subaortic area looks big enough to handle the flow a two-ventricle circulation would require. Dr. Parrish, our cardiologist at UCD, agrees based on the echo that was done last month. The teams from UCSF and UCD will have a teleconference next Tuesday to discuss our case and hopefully come to a consensus. In the meantime, Dr. Parrish would like to get more pictures of that area of Drew’s heart before Tuesday so that they have as much information as possible before the conference call. We are supposed to go in for another echo tomorrow morning. Dr. Teitel also said that the pressures in Drew’s pulmonary artery are slightly high, but he wasn’t sure why. Elevated pressures there make the Fontan procedure slightly more risky, so that is another reason that the two-ventricle approach is looking better. Of course, they may say that they can’t make a decision until they are in surgery and can actually see for themselves how his heart looks, which is what happened with his first surgery. Although I would love for Drew to have a “normal” heart, I really just want it to be clear to the doctors which procedure is the best option for us.

The Truth

The truth is, I am weak.

Apparently, this is only a surprise to me. God knows it, and God knows my husband knows it. I guess even my friends have come to realize that I’m not perfect (gasp!). So yesterday I felt pretty out of it. I was angry at everyone, for no particular reason. I had no patience. I wanted to spend time with my kids and enjoy being with them, but only if they were behaving perfectly. And they weren’t. Ava was whining and Drew wasn’t listening to me and Dan wasn’t reading my mind so I was mad! I wanted to escape, to go and hide in my room and felt extremely guilty about it. So I spent a lot of time feeling angry and even more time feeling guilty and even worse, I felt too prideful to ask for help. I didn’t want to admit even to myself that I was having these feelings, let alone ask someone else for help with my inadequacies as a mother.

I thought I should be happy to be home. I should be happy this part is over and that it went well. I should be happy to be with Drew, because I am lucky he is even alive. Plus, in the world I live in, the world of heart defects and surgeries, a cath is not that big of a deal. I thought, what is wrong with me, that I am feeling this way? I thought no one understands me.

Luckily, I have awesome friends. I talked with a friend who told me that these thoughts are not from God. That He wants us to function in community and that no one thinks that I am perfect anyway, so there is no need to pretend. She said to ask for and accept help. And she was right. Another friend forced me to go to lunch, even though I told her I didn’t feel like talking to anyone. And I’m glad I went. I probably wasn’t a cheery addition to the group, but it was good to get out of the house and slowly but surely I started feeling better. I talked to another heart mom, who does understand my feelings. And still another friend came over to watch mindless TV with me.

So what did I learn from this experience? I learned that apparently, this is my way of dealing with stress. I can get through the hospitalizations relatively unscathed, but the day after is going to be bad. So next time I will allow for a decompression day. I will ask ahead of time for help with my family so I can have a melt-down, knowing that they are being taken care of. And I will lean on my friends.

Tuesday, May 1, 2007

On our way home

Drew slept until 3:15! Which was great because once he woke up he was moving! I thought he'd be really cranky when he woke up, but he was in a great mood. He immediately asked for a snack and we had grilled cheese, chicken nuggets and french fries at the ready. He ate french fries by the fistfull and gulped down his apple juice. He also wanted to watch dinosaurs and the nice nurse found a dinosaur movie and brought it in for him. He showed me his owies and I kissed them.

Then he got really whiny and fidgety. He was supposed to lay flat and still until 5, but he was flip-flopping all over his bed. He started saying "I am sad." Nothing we offered really seemed to help. Luckily the doctors said we could leave as early as we wanted after 5pm. We figured he'd be better once we got in the car so we left by 5:30.

We are in Oakland picking up Ava. We are going to eat dinner here and then head home to sleep in our own beds. Thanks for keeping us in your thoughts and prayers today.

Back from the Cath Lab

Drew is back from the cath lab and is sleeping peacefully in his bed. He got back around noon. The doctors had to insert two catheters—one through his groin and one through his neck. They also ended up having to coil a vein. They said he did well, but required a lot of sedation. Unfortunately his IV occluded during the procedure so his arm is swollen, but it should go down soon. Once he wakes up he will be able to eat something, but they want him to lay still until five o’clock! We’ll see if that happens. I’m hoping he’ll sleep for a long time to make it easier.

As far as a plan for surgery goes, we still don’t know. Our cardiologist will be having a teleconference with the cardiologists and surgeons from UCSF on Tuesday and we’ll set up an appointment with him after that to discuss surgery. Dr. Teitel (the cardiologist who did the cath today) thinks Drew’s heart looks good enough to do a repair, but he also thinks they might wait to make the decision until they are in surgery. I guess we will find out more next week. We’ll post again when we get discharged.

Here is a picture of Drew sleeping after the cath this morning.

Drew is in the cath lab right now

We got up at 5 this morning and Drew woke up around 5:15. He said “we’re going to the hospital.” He actually seemed kind of excited about it. We got here earlier than we needed to, around 6:15 am. Since Ava is not with us we came to the conclusion that she must be the reason we are usually late. :)

They had a bed for us right away and we got Drew settled in with his pillow and doggy. He watched some cartoons while we waited to see the nurse. He asked me a few times for a snack, but I had to tell him no. When the nurse came in he got a little upset and started saying “I don’t want to.” He didn’t want a hospital bracelet, the hospital jammies, or the numbing cream. We convinced him to do all these things because Franklin did it in his book, Franklin Goes to the Hospital. They gave him some benadryl and versed, neither of which tasted good, but it did make him kind of loopy. When they were transporting him up to the cath lab his head started to get wobbly and he was laughing at things. As usual, the most difficult part was getting the IV in. We waited outside while they did it and had to listen to him scream for twenty minutes. The nurse said they got it in two sticks, but he screams even while they are looking for a vein. When we went in to give him a kiss he was already asleep.

The good news is that he won’t be intubated like I thought he would. They got started around 8:45 and it should take 2-3 hours. They don’t expect to have to coil any collateral veins or balloon any arteries, but if they find some they will let us know. So we’ve got our pager and we will wait to hear from them. We’ll post more later.

Here is a picture of Drew watching Cars in his hospital room before the cath.