Monday, September 29, 2008
Surgery date update
Currently she is on 3 liters of oxygen and her oxygen saturation are sill inthe high 60's for the most part. So, that is the reason for us still being admitted. No IV's just yet, just monitors. After the news today, we are going to run some errands so that later we won't have to leave our baby's bedside.
We would like to again thank everyone for their uplifting words and prayers for our daughter and family. Words can't describe how much that means to us.
Next post will be later today.....
Saturday, September 27, 2008
Well, we are currently waiting for her blood transfusion to take place. They put an IV in her foot tonight, which lowered her oxygen levels even more because she got so mad. They have her on more flow and they are coming up a little. By looking at her, she looks like her normal self. It makes me wonder how long her sats were this low since we last went in to the cardiologist on the 11th. Anyway, she is happy as pie like usual and eating fine too.
We are thanking God tonight for having us do this heart cath here at U of M. We were going through the scenario if we were home. They would have done the cath, discovered that her sats were way too low, and then she would have probably taken an ambulance ride over here. We are sooo thankful that Dr. Loker had this done here when he did. God had the plan all set for us and even got us in at RMH. Yes, hotels this weekend here were $250-$300 a night! That was even my travel agent rate. Can you believe that?!! That is completely nuts! What a Michigan football game creates. By the way....how about that game,huh?!!! GO BLUE!!
Lindsay does have a leaking tricuspid valve and her shunt is narrowing but not so much that she is in trouble in the near future. Because of her awesome weight, the cardiologist and surgeon feels that she is ready for the Hemi. No other worries however except for the darned pulse ox.
She had Papa and Uncle Dan visit her today. Of course, after the game. Needless to say they sounded a little hoarse after their exciting day. It was nice to spend a little time with them tonight before they headed back to Kalamazoo.
Well, I'm exhausted and Lindsay is about ready to eat. Until tomorrow-
Love , Suzie
After spending the night last night, the decision was made for Lindsay to stay at the hospital. We thought she was just having trouble recovering from the anesthetic, but she was moved from a regular floor room to moderate care where they can monitor her closer. Her oxygen levels weren't good, so she is being assisted with oxygen. Suzie and JR were able to get into the RM house, which was great 'cause you know there's a home football game today at U of M and the hotels were out of sight!
Suzie and JR made the drive home to pack for the next two weeks because they have scheduled Lindsay's surgery ASAP. That means that they're putting her on the schedule as soon as they can, however she wasn't critical enough to have to do the surgery immediately.
While they were home getting things in order, a message came in from U of M that they will need to give permission for Lindsay to have a blood transfusion as soon as they get back. Nothing serious, she's had this before to get her levels where they want them to be.
From what I understand her heart is slightly enlarged, has a leaky valve, and her shunt has narrowed. This makes her a prime candidate for her next surgery so they can also fix what needs to be tended to. Luckily her weight makes this possible sooner than normal for an HLHS baby.
Cole's having a great time with the Winter's at Disney, Cruz is with Bill and me, Tina has the dog and we're in "help mode" for the next couple of weeks.
Suzie has promised to get her passwords in order so that she can update in more detail tonight, I just didn't want to leave all you stalkers on pins and needles any longer on an update.
Heart Hugs to all of you,
Friday, September 26, 2008
Cath update #1
I forgot to mention that earlier when we went to the cafeteria for lunch, we met both Joshua AND Braeden today. Two heart children that are on Lindsay's blog. Can you believe that we ran into both of them! Braeden was here with his Mom and Dad visiting some friends that are here at U of M and later for a check up. Joshua was here for an appointment. Both boys looked great and were smiling as big as ever. Although brief, it really touched my heart to be able to meet them at last.
They say another update in about 1/2 an hour........
Heart Cath underway...
On another note, we had to hand off a second child today, and that stunk to say the least. We saw Cole leave yesterday on a plane to Florida with the Winter's. When he started his walk down the jet way, I cried like a baby. I handed off my angel baby today, and cried as well. Rough last two days. However, the bright side of all of this is that Cole, I'm sure, is having an amazing time at Disney and that Lindsay will get through this obstacle just fine as well. Just having her put under is hard. All of the side effects tend to scare you, but thinking the positive right now and the results later this evening.
Will return soon with some news.....
Monday, September 22, 2008
3 month photo preview and update for Friday
On another note, all things are set for Friday. We have to be in Ann Arbor at 10:30 and the cath will begin around 12noon. That will last approximately 2 1/2 hours and then up to 4 hours recovery time after that. However, we will know the results before the 4 hours are up and I will post the results as soon as possible. Jr, Lindsay and I plan to stay the night on Friday since it will be a long day and in the morning possibly have breakfast on State St. ........you Michigan fans understand what I mean.......to all others, we will be tailgating!!! :-) Even though our wolverines haven't been that impressive, we still like to tailgate like the rest of them. That is if Lindsay is up to it too. Hopefully we can drive home from there but something in my gut is telling me that we might stay over there for a while. Lindsay has been pretty blue around her mouth lately. She seems to be acting and breathing as normal for her, but I think she is definitely starting to outgrow that shunt. Anyway, we are going to take Cole to the airport on Thursday. That will definitely be a bittersweet departure but I have a plan in the works if Lindsay doesn't have surgery. I won't say in fear on jinxing it, but I will tell you that he will have a big surprise if we can pull it off.
Please put Lindsay in your prayers on Thursday night as she will need the strength to make it through the heart cath with flying colors.
Thursday, September 18, 2008
Anyway, we were supposed to leave on the 25th, but this is the right decision and this will help Cole keep his mind off of his little sister. He loves her so much and is always worried about her. It is sooo cute! Anyway, that is what will be going on next week.
Please pray that I get through this week and pray that I stop loosing my hair! Yes, loosing my hair. It is coming out in clumps. I guess that is what stress does to you. But, if that is what it takes to still have my daughter, then so be it. I can buy a wig!
Thank you all for your support and still following this blog. We have so many wonderful friends and family. We are strengthened by it more than you know.
Heart hugs and love,
Monday, September 15, 2008
Hemi-Fontan: A Reality
Saturday, September 13, 2008
Why is the hemi-Fontan procedure done?
The goal of the second stage is to reduce the work of the right ventricle. After this stage, the right heart will only have to pump blood to the body because the work of pumping blood to the lungs is taken away.
How is the hemi-Fontan procedure done?
The large vein that brings blue blood back from the upper body called the superior vena cava is sewn into the blood vessel that takes blood to the lungs. Blood coming back from the upper body now flows directly to the lungs without going through the heart (1).
The Blalock-Taussig (BT) shunt (2) placed during the Norwood operation is removed. A patch is placed over the top part of the heart's right upper chamber (3). This prevents blood from the upper body from entering the heart and blood from the lower body from entering the lungs. It also maintains a connection that is used for the final stage of the repair and greatly simplifies the last operation.
Why not perform the hemi-Fontan right away?
In newborn baby, the pressure in the blood vessels in the lungs is quite high. If the hemi-Fontan was done right after birth, blood coming back from the upper body would not be able to flow to the lungs because of the high pressure.
After the hemi-Fontan
Most children tolerate this surgery very well and are able to return home about a week after surgery. The child usually looks about as "blue" as before the surgery since some of the blood returning from the body still bypasses the lungs. Children usually go home on several medicines that often can be stopped six to twelve months later.
After this surgery, most children grow and develop normally. They are not more prone to infections than other children and can be involved in all age-appropriate activities. There are no activity restrictions for toddlers and no need to stop children from being too active. Children know when they have reached their limit and will stop and rest. In general, children can return to daycare two weeks after discharge from the hospital.
Thursday, September 11, 2008
Meet Carlee and her mom, Amanda. We went to their benefit last Saturday. It was so good to see them again!
Lindsay and her biggest brother.
Our Princess is 3 months old!!!
She weighed in today at 11 pounds, 1 ounce!!! Have I mentioned that she has quite the chipmunk cheeks going?! I promise that I will have some new photos posted by the end of the day. Looks like my USB ports stopped working on me so I will just put all the photos on a disk and get them that way until I can get some spare time, yeah right!!, and get my computer fixed. Anyway, she is growing like a weed and I really wish that were weren't so excited about her getting bigger. But, she needs this next operation so we want her as hefty as possible. She is just a delightful little girl and smiles allot. Thank GOD she hasn't gotten sick. We are still crossing our fingers on that one.
Ok, so pray that the doctors make the right decision for Lindsay and looks like October is for sure for the hemi-fontan. Just not the exact date yet. The drum roll is still going on that one.
Oh, and I plan on, for those of you that are interested in knowing, posting what is involved in the next surgery and what reconstruction is going to be done. Quite interesting really.
Until next time......
Wednesday, September 10, 2008
note from mom
Cole has mono, (yes, that's right MONO) JR has strep throat, Suzie has a cold...chicken soup has been delivered..All this and it's Suzie's 2nd week back at work. Oh my! To top it all off, we thought Aunt Marva had a heart attack...This is when my dear daughter had her meltdown....We just can't ever loose Aunt Marva!! She's the matriarch of the family! It turns out Aunt Marva is suffering from reflux that resulted in major chest pain. She was smart enough to call for help right away and is going to be just great. Well, the fact that the Dr. thought she was only about 60 really helped!!!! I think he thought he had the wrong room when he came in and saw her. We're so proud of her! I hope Suzie and I got her genes.
Bill and I have Cruz at our house, trying to keep him healthy. Of coarse, Miss Lindsay is with mom, dad and Cole. Cole knows his limitations with her and is being a great young man about it. It's so cute to see him walk around with his head tilted because of his swollen glands. Bless his heart.
Bill is on the mend and walking between 1 and 2 miles a day. Of course I go with him every chance I get. Anyway he's close to his 10% difference in loosing 10% of his body weight. I'm doing it with him and together we've lost 36 lbs. He isn't going to be re-evaluated until November, so until then he still can't drive. He spends a lot of time on the internet and doing small jobs around the house which makes him totally exhausted.
We're counting down 'til Miss Lindsay's next surgery. It's so sad that we're wanting her to grow into this surgery time instead of wanting her to remain at this tiny baby stage, but we all know it's for her own good. We all love her so!
Hope this catches you all up.
Wednesday, September 3, 2008
Lindsay's sees her cardiologist on the 11th and we suspect that we talk about her surgery in October. Don't know if we try to schedule that then or what but I'm sure that he will do an echo on her and make that decision. He told us 2 weeks ago that he thought it would be in October sometime. So, that is coming very soon and the nerves are starting already. :-)
We had an eventful week with special visitors from Pensacola. Uncle Dan and cousins Braeden and Camden came to visit. We were so excited to see them and spend some time with them even though it was just for the weekend. We had a wonderful time with everyone at the lake. It couldn't have been a better holiday weekend.
I am back to work now but only three days a week. Feels good to go to the office believe it or not! Wouldn't have to if we could just win the Lotto!!! Wishful thinking never hurt anyone.
I would have posted some pretty good new photos that I have of Lindsay but all of a sudden I'm not able to get my pictures downloaded. I will as soon as I get that figured out. Still has me stumped.
Would also like to take this opportunity to have everyone pray for little Bela. She has undergone her second surgery and is doing well but could still use some extra prayers. She is a beautiful little girl that has the same heart defect as Lindsay. I have her linked over to the left for you to view.
I hope this updated everyone as good as possible and look for new photos soon! Just wait to see her cheeks now! ha ha