Christmas 2012

Ahhhh, Christmas.  I do love this time of year.  The lights, the colors, the tree, the cheer, the giving, the excitement.  Even wrapping presents.  I feel as if a Christmas hangover is going to be imminent.  We still have Christmas with Oliver's parents starting tomorrow as they are driving down from Toronto to spend a few nights with us, so the hangover will be delayed.  It is hard not getting caught up in the build-up to Christmas, and then suffer the withdrawal symptoms afterward.  There is always New Years to perk us back up!

We had a really nice Christmas.  We spent Christmas Eve with my family, at my parents house with all of my siblings, nieces, and some extended family too.  Christmastime at their house, our childhood home, has always been the norm for us, with family always coming to us.  It has been harder the last few years, as we all have families of our own now and for the last few years haven't all been together for Christmas Eve and Christmas Day.  But this year we did and it was nice.  My parents do so much to host these events and I just can't imagine Christmas any other way!  I love some traditions we have and we definitely owe it my parents for keeping up with them.  The 4 granddaughters were together and they were crazy together, but it was fun.  I hope they will have wonderful memories of these holidays.  I know I do!

The girls loved opening presents (of course) and playing with new toys.  I think they will keep busy with them for a long while.  I would love to purge some old toys.  It is amazing just how much stuff accumulates after just 4 years of having children. 

My brother Chris and I took on a project this year for Sofia and Camryn's presents.  He grudgingly went along with my plans and the result was perfection!  He admitted it later too.  We bought kind of a bare bones dollhouse bookshelf and decked it out with all the upgrades - carpet, flooring, a loft, furntiure.  I know the girls will play with this for years and I love that it has our personal touch on it.  Adelaide was so cute walking around the little puppy that my sister Kate got her.  She loves walking Kate's bulldog, Dexter, and now she has her own little puppy that walks on leash.  When I was tucking her into bed tonight, her last request was for her puppy.  So sweet.

We will never forget 2008 when Sofia was born exactly one week before Christmas.  I was due 12/20 and I was kind of relieved to be induced on 12/18,  so that we could spend our first Christmas at home as a family.  And as I learned, there are things you can't plan for, or you can try to plan all you want, but some things can't be predicted.  Sofia had surgery on 12/22 and was in the hospital well into the new year.  It was a hard holiday season, but somehow we made it through.  I think we have come to love this time of year even more and appreciate the good years we've had since then.

We are very lucky everyone was in good health this year and we truly had a holiday season to remember! 

Oliver and Sofia on Christmas Eve

4 Granddaughters

Sofia with her ornament she made in preschool

Adelaide and me on Christmas Eve

Dollhouse Before

 

Dollhouse After

Decorated for Christmas

 

London

I've been thinking about updating for awhile, but knowing it would be a bit of a lengthy post, I wanted to find time to sit down and write.  First things first, we had an amazing time in London!  We had basically a 10 day vacation visiting Oliver's brother in London and in Wales for his wedding.  The girls were good on the flight over and we had Oliver's parents to help us on the flight. When we arrived in London we went into the city and they spent the week in Bath.  We did lots of sighseeing in London and the girls enjoyed being strolled around the city and shown the sights.  It was on the cold side, but not very rainy, so we managed.  We had a great apartment that we rented, which was in a good location and had 2 bedrooms, and a kitchen.  The wedding was beautiful and it was an all around great trip.  It was nice to be able to enjoy a real family vacation.

Germ season is clearly upon us as both of my girls have had stomach bugs in the past 2 months, but luckily Oliver and I have escaped it.  Sofia's was particularly persistent over 14 hrs. and involved a trip to the ER as she wasn't keeping anything down .  The next day she bounced right back and was fine.  She is doing well heart-wise.  She has done well since her heart cath and is doing well on coumadin.  We have now gotten her at a good dosage and we were able to get a home testing device and monitor her levels at home.  She now only has to be tested once per month at home, so the frequent trips to the lab are going to come to an end, which is nice.  She had a cardiology check up this week and Dr. Edwards said how good she looks, which is what we like to hear.  Her echo was good and it was uneventful, which is great. 

She is being followed by a gastroenterologist ever since it was discovered she had gallstones back in June.  One of the reasons we took her to the ER when she had the stomach bug was to rule out that her gallstones weren't what was causing her to be sick.  And over the past few months, when her liver is palpated, it seemed to be larger than normal, but her blood work had been normal.  She then had one result that showed a slightly elevated AST and ALT.  The gastroenterologist recommended that we recheck, do an ultrasound and then meet again in January.  Thankfully, her bloodwork and ultrasound were both normal in October and November, so I'm hoping for a good appointment in January with her.  I'm hoping her liver had just taken its time to recovery from her heart surgery in May and that these issues are behind us at this point.  I also know that Fontan patients can develop liver problems due to their elevated venous pressues, so I would expect she is always monitored for these issues.  I also hope that they know more about these problems and have a course of treatment by the time Sofia reaches an age where this could be a real problem for her and patients with similar anatomy.

There is big cause for celebration tomorrow because it is Sofia's 4th birthday!  I truly cannot believe she is going to be 4.  When she was born I couldn't imagine what things were going to be like when Sofia was a toddler and preschooler and into the future, and I am so very proud of this sweet, beautiful girl.  I can't wait to see her excitment on her big day and celebrate Christmas with her, Oliver, and Adelaide this year. 

Adelaide celebrated her 2nd birthday in London.  She is becoming such a big girl and has a vocabulary to rival her sister's at that age.  She is sweet and sassy and still a mommy's girl.  She loves her big sister and it can be very cute to watch them together.

I am so thankful to have these beautiful girls and my heart just breaks for the parents who had their children taken from them this week in Connecticut.  I just cannot imagine life without my girls, and I pray for these families because their lives will never be the same.  So, so sad.

The four of us at Thomas and Selena's wedding

                                                           Adelaide on her 2nd birthday

                                                                 

Coumadin

Sofia is doing great and she's back to feeling like herself after her cath. She has been on coumadin for 11 days now and INR has been tested twice.  After the first time, she wasn't at a therapeutic level yet, and she was just checked yesterday for the second time and the results weren't back yet.  She went back to gymnastics yesterday, which she is allowed to continue.  She follows up with Dr. Golden, who did her cath, on Tuesday and she also has an appointment with the gastroenterologist.  I think forgot to mention in August that she went to see her for the first time because it was discovered back in June when she was in the hospital that she has gallstones.  Dr. Hupertz, the gastroenterologist, will follow her.  She's not having symptoms so we will just hope that she continues to not be bothered by them.  However, if they do cause a problem they will take out her gallbladder.  Hoping it doesn't come to that!  Her liver was also enlarged, so they are going to keep an eye on it.  Dr. Hupertz's opinion is that if there was some liver congestion after the surgery it could take a few months for it to return to normal.  She will have an ultrasound on Tuesday.

Only 3 more weeks until our trip.  Have a lot to do before then!  

Heart Cath and Heart Walk

While it's still fresh, I wanted to write about Sofia's heart cath.  She went in on Oct. 1st for what was her 4th heart cath.  As I've written before, the primary reason she was having this cath is because her left pulmonary artery (PA) has looked narrow in one area.  The secondary reason is if there were any collateral vessels, they would be coiled.  Her left pulmonary arterty has been worked on before in her Glenn surgery at 6 months old.  In her pre-Fontan cath in April, Dr. Golden pointed out a narrow section on 3D imaging, but it was thought to be in a good position that would be right where her Gortex conduit was going in and that would hopefully take care of it.  However, in the last few echos in August and September it looked narrow again.  Dr. Edwards said she would need a cath to put a stent in it to keep it open, and that we could have it sometime in the winter.  We opted to have it done before November, which is when we are going on vacation.

Dr. Hill and Dr. Golden told us on the morning of the cath that it was possible that they could get in there and decide that the PA looked fine and they wouldn't need to do anything.  Dr. Golden also said that if he saw collateral vessels he would coil them, but he would not go looking for them.  The reason is that there is not definitive research that coiling them is the best thing go do, and there could be a benefit to the body creating this natural "top off."  Therefore, if big ones weren't evident, he would leave them alone.

Sofia did well in the morning.  Her cath was pushed back and we didn't even have to be there until 9.  She mentioned being hungry a couple times, and we promised something to eat when she woke up.  She requested French toast.  We were able to be with her and take her to the cath lab.  She was given versed first, which made her very relaxed.  She was under at 11 AM.  It was a really long wait.  She was extubated at 4:55, so the entire cath took 5 hours.  We did get a few updates during the cath, and had learned that she would need the stent.

Dr. Golden came out to talk to us right afterward and gave us the details.  Her Fontan pressures were on the higher side at the beginning of the cath, which suggested something was going on.  At the end of the cath when the stent was placed the pressures decreased (we were told that pressures tend to be higher at the end due to being under anesthesia that long and the use of the dye), so it was good that her pressures came down.  It was obvious the stent was needed and the timing was probably good.  There were no collateral vessels that were coiled.  Dr. Golden described himself as a perfectionist, and there was one thing that didn't please him.  Apparently, the stent can moved when it is being placed.  But once it is place, it cannot move.  The only way to remove is through surgery.  Hers did move when it was placed and it sticks out slightly.  We saw it on video.  Really wish I could draw a picture here to show it.  Essentially, it is not completely off blocking anything, and it is mesh so blood can travel through it, but because of it sticking out he told us she would probably need to be on Coumadin.  This wasn't expected, as Dr. Edwards favors aspirin, and we thought we'd have a lot more time before she'd need to be on coumadin.  However, we understood the need to for coumadin due to the stent placement, just not thrilled about it. 

About half of cardiologists prefer that Fontan patients are on coumadin, so if we had a different cardiologist she might have already been on it.  So she is going to have weekly blood draws until a therapeutic level is set and then hopefully about once per month to monitor.  I did find out that my insurance company will cover an at home testing kit.  I had a long talk with Dr. Edwards on Thursday and felt better about it after talking to him.  He has a reassuring effect and are thankful that after things happen that we can call him and have a good explanation of things.  She can continue to do gymnastics.  We are still going to go to London.  I just worry about how active she is and the risk of injury due to falls.  We will need to make sure the preschool and our babysitter know that it is important for her to avoid physical contact and notify us of any injuries.

I'm glad that Sofia is recovering well from the cath.  When she woke up after surgery, she was so hungry and it definitely made me smile that the first thing she said was request for breakfast.  She proceeded to eat a ton of spaghetti and meatballs.  She stayed one night at the Clinic and Oliver spent the night with her.  Thankfully, they had a private room.  It was really hard for me to work the next day and it would have been nice to have one day more off.

We had a nice weekend, and we had the big Congential Heart Walk on Saturday.  We really enjoyed it last year and were glad to be doing it again.  There were double the walkers this year and the last number I heard was that it raised $70,000, which is great.  Mended Little Hearts also had a table set up and we raised some money selling some merchandise.  It was a cold, rainy Friday, but it stopped raining for walk day, and then resumed today.  The walk reminds me of how lucky we are that           1) Sofia has continued good health, and it is not lost on us that there are lots of families that have more struggles than we do, and 2) that the CHD community is a very caring and close one.  Because when things happen that have you down, there are always people to talk with.  There were lots of families there that I have come to know over the past year or so, and it is nice that everyone comes together for this annual event.  This has been a big heart year for Sofia having 2 heart caths and her Fonan surgery, so we have become more involved.  It was also nice to see a good turn out from the health practitioners too - we recognized lots of nurses and doctors there.  The support of our family and friends is so touching and it means a lot that we had a lot of support and a lot of walkers for Team Sofia at the walk!  Great weekend!

Just one of the Hazel siblings missing... Next year the Hazel 5 will walk together again!

My Favorite Season

We have been sailing through a few busy weeks.  We decided at the last minute to take a trip to Toronto over Labor Day weekend to see Oliver's parents.  I was surprised when I realized we hadn't been up since last Christmas.  We usually make a few trips during the year, but this Spring with Sofia's surgery we hadn't been able to.  We are lucky they were able to come down several times to see us though.  The girls love seeing their Oma and Opa.  We were even able to take advantage of my in-laws' babysitting skills and have night out to ourselves (it is hard to remember what that is like!)  The great thing about their location in Toronto is being able to walk to see a movie and get some yummy gelato on the way home, and have fresh chocolate filled croissants in the mornings.  It is nice to be reminded of what city life is like...don't get much of that around here :)  Thankfully, Toronto is a short 5 hours by car and that seems to satisfy the craving.

It has been a rainy morning here, and it definitely feels like fall - my favorite season.  This fall is going to be particularly eventful for us.  Here's what's going on:

Sofia started preschool last week!  I feel like this is a big milestone in her life so far.  She had no reservations and seemed to love it as much as we did.  I really liked the teacher and feel like it is going to be a good atmosphere and good experience for her.  I'm so excited that she doing "normal" activity for her age and that she is not being held back anything health related.  She loved getting ready the night before school by sprinkling "magic preschool dust" around her bed, which was supposed to ward off preschool jitters.  She liked getting ready and carrying her backpack.  She was all talk about her new friend Chloe when she got home.  Sofia also had her first night of gymnastics class with her friend Irelynn and her favorite was the balance beam.

October 1st is Sofia's cath to put a stent in and possibly coil collateral vessels.  That will be a one night hospital stay.  On October 6th, we are taking to the streets for the 2nd Annual Congenital Heart Walk.  Very excited to support this cause again and have some fun.  It sounds like there are going to be lots of fun things for the kids to do and I know we have a great time supporting our little love, Sofia and supporting the Adult Congenital Heart Association and Children's Heart Fund.

In November, Adelaide turns 2!  Actually she will turn two while we are on vacation in London!!!  We have booked our trip to the UK for Thomas's wedding.  The girls will love to see Uncle Thomas and their new aunt, Selena.  Their wedding is in Wales and the from the website, it will be a stunning location.  It is hard for me to believe that Adelaide will be 2 soon.  She keeps up with her sister and it's hard to keep track of all the things she's doing and learning because it happens so fast.  She is my fiery redhead still and I love this still-cuddly, still mama's little girl.

When we return from our trip, my parents will celebrate their 40th wedding anniversary, and it appears they are going to let us plan a dinner.  Not a party, but a dinner.  I know they don't want to do it up big, but 40 years is worthy of celebration!  During the week of Thanksgiving, both my grandpa Locke and my dad also have birthdays, and my grandpa's is a big 95th!  Very awesome.

There are some exciting thing to look forward to and I feel like it is going to be a great fall! 

                                               Sofia and her friend Irelynn at gymnastics

                               Sofia with her cousin Camryn on her first day of preschool

                                                                First day of preschool

                                                                      In Toronto

                                                          sweet 22 month old Adelaide

                                                         on the Subway in Toronto

                                         hanging out eating cake in Oma and Opa's garden

Update

Finally finding a minute to sit down a type out an entry. It's been a busy month! Here are the highlights:

1- Oliver and I celebrated our 9th wedding anniversary at the beginning of the month. Hard to believe it's been 9 years!

2- Oliver's birthday was last weekend and he took Sofia camping at Wheatley Provincial Park, where he met his parents. From what I hear they had a great time. Adelaide and I went to BGSU instead for a family reunion with my dad's cousins and their families. We had a nice little road trip with Kate, Emily, and Amelia too. It's fun being on a college campus and it was nice to see all the family and visit. It was especially interesting looking at all of the pictures the cousins brought of my great grandparents and their families. I have to post some of these.

3- We are headed to Toronto for Labor Day weekend. It's been since before Easter that we've been there. I'm looking forward to being in the city and hopefully getting a date night while we're there.

4- We are in the midst of planning a big trip to London in November! Oliver's brother is getting married and it looks like all 4 of us are going to go for a week and a half.

5- Sofia is doing very well. Her energy is great. Her coloring is really good. Her pulse ox is at about 91. She will be having a heart cath on October 1st. She has a little narrowing near one of her pulmonary arteries (the exact location is confusing to me b/c apparently it is not one of her arteries but near the opening of it, but behind the heart? I think I need to see a picture of this). So she will require a stent. Dr. Edwards was ok with waiting until winter, possibly around Christmas time, but with planning a trip overseas we have decided to do it a month prior. At the same time, if needed, they will coil any collateral vessels (which is probably the cause of her pulse ox hanging out in the low 90s instead of mid 90s). Dr. Golden will perform the cath. He did her pre-surgery cath and we are comfortable with him.

6- Sofia starts preschool on the Tues. following Labor Day. So excited for her! We are also registering her for gymnastics class. I think she is going to love these things and has been cleared by Dr. Edwards to do any kind of physical activity. She will self-regulate.

7- Adelaide is talking up a storm and in my biased opinion, is such a bright child. She is very entertaining. She loves her big sister so much. She is almost at the age that Sofia was when Adelaide was born. That is crazy to me because Adelaide still seems like such a baby. They are only 22 1/2 months apart.

8- I guess that's it. I don't know why I'm numbering these things. I love that fall is on the way...my favorite season of the year!

Busy Summer

Our summer is just sailing along. I remember planning Sofia's surgery at the beginning of summer with the intention that we'd still get to enjoy summer, but due to her slower recovery we missed a lot of it. For me, it feels like June, but I can't believe that next week is August already. Sofia is starting preschool in the fall, and I'm so excited for her to go. I think she is really going to love it. Oliver's new job is going well. I am still working full time and working at the Health Department part time, so we have lots on our plates. Our new babysitter seems to be working out. Things are good!

Sofia's is doing well healthwise. We are now almost 3 months post Fontan! She saw the cardiologist this week and doesn't have to go back for 3 weeks! This is improvement. The only medication she is on now is aspirin (which she'll be on for life) and lasix once/day (which hopefully will be taken off of completely soon). Her pulse ox was up to 92 at this appointment, which is the highest it's been. It should still rise over the next few months. If not we will be looking at a cath in the winter time. Dr. Edwards also mentioned that we might need to stent one of her pulmonary arteries (I think Oliver said left). I will talk to Dr. Edwards more about this at her next appointment, because that hasn't been mentioned previously. She will see the pediatric gastro specialist in August to check out her gallstones. I'm really hoping this goes well. Sofia's energy has been great and her coloring looks really good. Her hands and feet are so pink. Dr. Edwards also said this is the best he's seen her look.

Oliver and I got involved with a non-profit called Mended Little Hearts, as a local chapter formed in northeast Ohio in June. It's nice to connect with a lot of heart families. I think it's going to be rewarding to support new heart families because it was something we didn't have when Sofia was born. I always thought we had a rare experience in that we didn't know about Sofia's heart until after she was born, but I have learned over the past few years that is not that uncommon. Lots of families find themselves unexpectedly in the hospital and one of the things we're going to do is make care bags of essential items that can be given to families. I really think it's going to be a great group. We are trying to get some fundraising efforts going, so we're selling these heart necklaces for $20 including shipping. If anyone is interested in one, let me know! I have one and I wear it all the time. It's a 1 inch pendant on a 26 inch chain. ahcurwen@gmail.com and I will ship to you

This quote was hanging up in our office and I had to take a picture of it. It's a good one.



Here's to enjoying the rest of summer!

Heating Up

Sofia had another good cardiology appointment yesterday! Her labs were all good and x-ray looked good. No effusion. Another medication has been cut. She's down to just aspirin, lasix ibuprofen, and potassium once/day. WOO HOO! I could get used to these good check ups.

We had a nice 4th of July. We got together at Emily's house and I am often reminded how nice it is to have most of our family close by. I can't believe how hot and humid it has been the past few days. We really didn't spend too much time outside. Sofia is allowed to ride her bike and resume normal activities, so I can't wait until it's tolerable to go out and do these things.

Love these pictures from the 4th of July.

st

Good Week

I should be in bed right now, as it's midnight and Oliver will be gone all day tomorrow in Columbus for work, but I feel a little wired.

I'm glad to report that I think Sofia has turned a corner in her recovery. This has been a good week. All of her blood work from Monday was normal. She had another appointment with Dr. Edwards on Thursday, which we all went to, and I felt like I was back in the loop. The reason for the referral to the liver specialist is because she's a gastroenterologist and will evaluate Sofia's gallbladder. I was all stressed thinking something was going on with her liver, but that appears to be fine. In addition to have good labs, she had a good appetite today. She also is now taking potassium (unbeknowst to her) in her orange juice. I have to mix it with a lot of o.j. to hide the taste, but eventually she drinks it all. Her energy is good and I found that this week I haven't been watching her quite so closely to make sure she's feeling well.

In other news, I went to the first meeting of the Mended Little Hearts last night. Actually, Oliver and I went together and my mom babysat the girls. It was in Independence, which is a good 45 minute drive, but it was worth it. It was nice to see some familiar faces and some new ones that I have only seen on facebook! I really think that a support group for families of CHD is something that is needed in this area and I think this group could really do some great things. One of the projects discussed was putting together care packages for families at the hospitals and visiting these families. Doctors can refer families to MLH when giving a CHD diagnosis for emotional support, which is something I think many could benefit from when facing the ups and downs of having a chronic condition. I'm not sure I would have been able to get involved with a group like this when Sofia was born because it was such a shock and everything was pretty raw, but I feel like I'm in a good place now and CHD is a part of our lives. Anyway, I'm going to be the treasurer and I'm excited to be a part of this new group. There were about 15 families there, and I thought it was really nice that Dr. Edwards was there and one of the nurse practitioners from the Clinic. It was great to see the health professionals getting involved with something like this too. Dr. Edwards talked about lobbying in D.C. for pulse ox testing in all newborns, which is something that would have detected Sofia's cyanotic heart condition sooner. The Clinic is now doing this on all newborns. I'm not sure about other local hospitals, but I know Lake West, where Sofia and Adelaide were born, was not doing it when I had Adelaide in late 2010.

We registered Sofia for preschool for the fall and I'm so excited for her to go. I really think she is going to love it.

Adelaide is doing well too. She is at a very cute age and you can just see her learning. She repeats almost anything you ask her to say (our favorites are how she says vegetables, watermelon, and love you amongst many others).

I heard that a little boy about Sofia's age named Charlie got his new heart at the Clinic today. I first learned about him about him when Sofia had just had her surgery, and a former classmate of mine who taught his brother posted on facebook about him and I kind of kept my eye out for him while we were there. He has been in the hospital a long time and we caught glimpses of him while we were there for our stay. Please keep him in your thoughts that his new heart is strong and works for a long, long time!

Praying for Normalcy

We've battled some ups and downs over the past week or so. Sofia had been on the mend, but she ended up developing a cold last week and that took its toll on her. She had a cough and apparently didn't get enough fluids and ended up back in the hospital last Thursday. Her electrolytes were out of wack. She had an abnormal EKG due to the dehydration, and she was given IV fluids on Thursday evening and potassium over night. I stayed the night with her Thursday night, and Oliver went home to be with Adelaide. Sofia ended up staying in the PICU because her cough they didn't want her on the floor. She didn't really need to be PICU and she didn't have heart issues, but I guess if she was on the pediatric general nursing floor a floor below, the cardiology staff couldn't get a her data transmitted upstairs. So she didn't really belong in the PICU, but that's where she ended up. I stayed with her on Thursday night and she ended up pulling out her IV overnight when she was about halfway through the potassium. Luckily, we were able to get her to take oral potassium, and didn't need the IV reinserted. You should have seen how pleased she was with herself for taking it out. I was kind of horrified. She stayed Friday night as well and came home on Saturday. It was clear that being rehydrated she felt much better.

We are relieved she is feeling better and we're trying to get back to normal. There are some things that we are dealing with still. It was discovered that Sofia has gallstones. Yeah, that's right. Diuretics can cause them or her being cyanotic could also have caused them. I think Dr. Edwards believes it is related to the cyanosis. I don't know if gallstones can ever resolve themselves or that we just hope that they don't cause her problems. (in a family where her mom, aunt, and grandma all had their gallbladders removed, I fear for her gallbladder). For now, we'll just see how things go. Her liver also felt enlarged a few times throughout her hospitalizations. I think this is probably related to the pleural effusions (fluid around the lungs). Her liver appeared to be normal sized when she had an ultrasound and her liver function as seen through blood work has been normal. I will talk to Dr. Edwards about this at her next appointment because Oliver took her to the one yesterday. I pray this is also something that will just be resolved over time as she gets further out from her surgery.

Giving her medications has become a struggle. She is still on 2 diuretics and ibuprofen, which she takes pretty well. We dread the potassium because she can't stand it. We were able to switch to a pill form of lasix because she was absolutely refusing it, despite mixing it in juice or trying to get her to take a syringe. The pills are very tiny and she swallows them down easily. The potassium pills are much bigger and no matter how you cut it, they are nasty. The liquid is apparently nasty too. So we're working on this. I fear that so much control has been taken away from her that she is just trying to get control where she can get it. She was only on aspirin prior to surgery, so it is difficult for us to follow a close regimen of medications, and I hope that she will be taken off these soon.

Her heart function is good. She had an echo yesterday. I'm relieved that most of these bumps we've had are aren't cardiac related, but I'm still down that we're having bumps at all. She has no more fluid around her lungs and just a tiny bit around her heart, which is being treated with the ibuprofen.

I didn't go to her appointment with Dr. Edwards yesterday and I regretted it. When Oliver came back and told me about her liver, I had anxiety. I felt better after talking to Dr. Edwards over the phone today, but realized that I still need to be going to her appointments. There is too much getting lost in the translation, if you know what I mean. It's hard because I've used so much of my sick and vacation time and am really getting to the end of it.

On Thursday, it will be 7 weeks since her surgery, please say a prayer for us. I was sad to hear that Sofia's former roommate, Margaret, has not yet been released (she has had prolonged fluid issues), so please say a prayer for her too.

Happy Father's Day

Slowly over the past week or so things have been returning to normal. Sofia had a good check up last Wednesday with her cardiologist. Her energy level has been really good too. She did lose quite a bit of weight from surgery and recovery and for a few days looked so thin to me (all those diuretics too). Her appetite has been better too.

Today she threw us for a little loop. Over the past 2 days she's developed a cough, which seemed worse at night, but fine during the day. This morning she had a very distinguishable barking cough. She complained of her back and chest hurting. Just to make sure everything was ok, we called the cardiologist on call and ended up taking her into Hillcrest ER. They did a chest x-ray, which looked them the same as her x-ray last Wednesday had. They didn't do any other treatment and she came home this afternoon. Tonight, she seems to be running a low fever, but we'll just keep an eye on her.

I had my first full week back at work last week and it was tiring. I hope to be back into the swing of things this week. There just seems to be so much going on and hard to keep up. Oliver started his new job 3 weeks ago and this week our new babysitter starts. It might be a little adjustment for the girls to have someone new watching them, but I think it will definitely be a good thing. It's still hard to believe that Sofia's surgery was almost 6 weeks ago. I can't wait to get her started in dance and/or gymnastics this summer. And she will be really excited to return to swim class. Oliver seems to have limitless energy and I'm struggling to keep up. I'd really like to get back to the Y myself!

WHEW

We were so relieved after good news at the doctor's office yesterday. Dr. Stewart said Sofia's x-ray looked a lot better! He said he was hoping for a little better, but it was a lot better. Yay! It's about time for some good news. He thought they would be putting in a chest tube today and there was a PICU room ready for her. Dr. Edwards stopped in to chat, and we will follow up with him on Wednesday. I think we've turned a corner and are much happier to be spending this weekend at home rather than in the hospital!

Take Three Averted...For Now

I'm a little delinquent with updating, and I find if I don't update when I'm thinking about it then it gets harder to update later. So, here goes. My last entry was when Sofia was in the hospital (for the second time). She was readmitted Wednesday (5/30) and discharged Sunday (6/3). Her chest tube that was put in that Thursday only drained fluid for about 1 day then petered off. She was playful and active on Saturday and Sunday and seemed to be feeling good. The was in contrast to her roommate, Margaret, the other 3 year old who had the Fontan surgery 2 days before Sofia, who slept a lot and seemed pretty lethargic. The chest tube was removed on Sunday and we were able to go home again. Dr. Lorber was the cardiologist on the floor this week (who I remembered as he the doctor who did fetal echos on me when I was pregnant with Adelaide), and he did an echo on Sofia Sunday before we went home and was satisfied that the pericardial effusion (fluid around the heart) was small and the chest x-ray looked ok.

It was nice to be back home again. This rollercoster of a month (going on two) is not as much physically draining as it has been emotionally draining. That reminds me that today it has been 4 weeks from Sofia's surgery. Wow. Feels like a whirlwind.

Yesterday we were back at the main campus for a surgical follow up. She had an x-ray, echo, and appt. with the surgical nurse scheduled. After the two tests, we waited in the exam room for about 40 minutes before Dr. Stewart (surgeon) came and in and told us there more fluid. He showed me the x-ray, still has fluid on right side, and the echo. He seemed defeated by this. Maybe not defeated, but just a little disappointed that it came back. He had us wait while he and the cardiologist talked things over and weighed the choices of admitting her and putting her on IV lasix or seeing if we could change her at home meds and letting her go home with the condition that she come back for follow up Friday (tomorrow) morning. After discussing with the cardiologist who did they echo, they were satisfied with the decision to let her go. Her heart function is good and the fluid hadn't gotten worse around the heart. They added another diuretic (diuril), which she has to take in addition to the lasix and let her go home. She hates the taste of lasix and gagged and threw it up yesterday. From here on out, we are going to have to only mix with juice to get her to take it. Anyway, I think Dr. Stewart was expecting to see her looking like she wasn't feeling well, but they said that she looks good in spite of the results. And she was very energetic today. Hard to gauge when she's not feeling well because she's not exhibiting symptoms of this fluid accumulation.

Really hoping that something changes by tomorrow morning and that things look good. I'm packing an overnight bag just in case.

Adelaide had her 18 month check up on Tuesday (she turned 19 months old yesterday). She didn't even cry when she got her one shot. She's such a big girl! She is repeating everything you tell her and she's putting two words together. She is 26 lb. 3 oz. and is in the 85th percentile for weight and 87th for height. Growing up so fast. Her hair seems to be turning blonde, but I hope she keeps the strawberry. She definitely has the red headed temperament!

Short and Sweet

Don't have much time to update. Pretty tired today. Oliver and I have basically been switching places for the past 3 days while Sofia is still in the hospital. Here are the highlights: She did get one chest tube put in on Thursday on the right side (under anesthesia, done by Dr. Stewart). She has fluid around right lung and around heart. She is acting normally and is pretty much herself, which is good. She wanted to draw, paint, and go to the playroom and look at the aquariums. Chest tube drained a good amount on Thursday, but almost nothing at all last night and today. This could be a good sign if her chest xray looks good tomorrow. Someone screwed up last night and put her on IV fluids thinking she was too "negative" (they measure all her intake and output and want her to be in the negative). Cardiologist wasn't happy this morning when she found out about that. She still has some fluid that needs to come off and shouldn't be getting any extra input. Dr. Edwards brought Sofia a giftcard today. I think he was feeling bad about readmitting her. He also stopped in to say hello and said she was looking better to him than she did on Wednesday. The most annoying thing is all the wires and tubes she's hooked up to. It is so difficult to just go to the bathroom or walk down the hall. The chest tube drains into a box (no plastic ball like before), she's on oxygen to help her out, and all the leads and wires make for one big mess. She had several wagon rides today, but I know she should also be moving around. I know she is where she needs to be right now, just hoping it isn't too much longer!

Derailed

Well, today certainly didn't pan out as expected. Sofia had her follow up with her cardiologist today at Hillcrest 8:30 and had and X-ray that showed fluid around right lung and heart. We were given time to go home and pack bags and return to main campus because they wanted to admit her. We did stop for some preventive frozen yogurt on the way though, as I knew that today was not going to be easy on Sofia. Took quite a bit to get an IV into her. We talked with Sr. Stewart, the surgeon, and Dr. Arruda, the cardiologist on the floor. The plan is to administer IV lasix, do a X-ray on the morning. and decide after if she needs a chest tube reinserted. She cant eat after midnight because of she needs the chest tube, it is going to be done at 8:30 am. Dr. Stewart called it a pigtail chest tube and I had to look that one up. It is smaller than the chest tube she had previously. I'm hoping IV lasix will work miracles tonight and that she won't need the chest tube. Prayers for Sofia tonight! Oh, and she is in a semiprivate room (no pod!) and her roommate is the girl who was here when Sofia had her surgery. She was also readmitted for fluid issues after she had been discharged originally. She has been back though for 9 days! Let's hope it does not take Sofia this long.

Full Speed Ahead

Finally getting a minute to update. Sofia is doing well at home, and she has resumed to a lot of normal activities, which we are grateful for. I'm actually home with the girls today because Oliver started his new job today. I am enjoying spending some extra time with my two favorite girls. I will be at home with them today and tomorrow and two days next week. After that, if Sofia is well enough, we have a new babysitter who is going to come to our house two days/week. She is actually someone Oliver knew from the YMCA, and he coached her younger brother this year on his swim team. She is 21, going to college part time for special ed, and seems like she will be a good fit. She had a "trial run" with the girls before Sofia's surgery and things went well.

Sofia has made a lot of progress since her surgery, but still has a ways to go. Her stamina is improving. We are encouraging her to nap during the day because going the whole day without one makes for a long day for her. She wasn't napping regularly before surgery, so I'm sure once she's feeling 100% she'll cut naps out again. Most of the time, she seems pain free. We are still giving her Tylenol when she gets uncomfortable. The worst time seems to be overnight, and last night she woke up several times. I'm hoping she'll get a full night's rest soon. She is so upset when she wakes up in the night and it is hard to calm her back down. We had a busy Memorial Day weekend and it was evident that Sofia is still healing. We went to my godson's birthday on Saturday and she got overwhelmed and tired and we left early. We had lunch on Sunday with our extended family and she held up well, and on Monday we had a barbeque at my mom and dad's house. That was easier because we just kind of took it easy.

She is still on lasix twice per day. It must taste awful because she never wants to take it. She was always pretty good at taking other meds when she's needed them before. Today she had a lasix and orange juice cocktail and that seemed to go over pretty well. She's usually always better at taking meds for her daddy, and since he's not here today I thought this morning would be more challenging. I'm glad she's just on lasix and apirin.

We follow up with her cardiologist, Dr. Edwards on Wednesday. I'm interested/nervous to see where her sats are. There are moments when she looks pink and there are moments she looks blue, especially when she's upset about something. I'm hoping for the 90s tomorrow!

There's more I'd like to type, but the girls are pulling me away. I'll update more after her appointment tomorrow.

Home Sweet Home

Admitted: 5-10-12
Discharged: 5-20-12!

It is nice to have Sofia back at home, and I'm sure she feels happy to be back home. We left the Clinic at about 3:30 yesterday afternoon, so she had some time to play and enjoy being back home before going to bed. She slept pretty well last night. She woke up at about 3 AM just tossing and turning but said that nothing hurt, but after a few minutes of this I could tell she had some pain. After a dose of tylenol she went right back to sleep. Oliver was with her today, and I returned to work. So hard leaving her today. I thought I would at least have a few days with her at home before I went back, but I expect to be taking off some time next week and the following week to be with her when Oliver starts his new job. So she apparently had a good day today. I liked seeing her play today and resume some normal activities. She is on a 1/2 liter of oxygen, hopefully just until her post-op visit on Wednesday where it will be determined if she can come off it. It would certainly make getting around and recovering easier, but she doesn't seemed bothered by it, so that is good. Grateful she is back home!!

visiting her friends!