Friday, October 31, 2008

She is resting......

Lindsay is finally sedated and resting like the docs want her to. Basically, we just have to wait it out and hope that she gets rid of the infection, pees well, and stays comfortable. She looks fine. Her color came back and looks like Lindsay again. Her heart rate finally came down a bit too. Did I tell everyone that her heart rate was around 200 before she was intibated? Yes, she was basically running a marathon for most of the day just lying there. Her fever has not returned and blood tests say that she is coming back into normal rages again. Still no word on if the blood from the cultures has grown any bacteria yet, but I'm sure it will. She was so sick and obviously still recovering from it. The echo looks fine as long as she stays comfortable and lets her body work. The x-ray also looked good. No fluid on the lungs and her bowels had some air but is better than from before. They have a tube down to help remove any that is in there now.
We are off to spend the evening with the boys. JR and I are going to see Lindsay this morning and then off we go. Picking Cole up from school, I'm going to work a little, JR will mow the lawn(with Cole's help I'm sure!), pick up Cruz from Brenda's and then Trick or Treating here we come! We are looking forward to a night devoted to them. I will update in a few days and with pictures from the big night tonight! Love to you all!

Thursday, October 30, 2008

Pray for the Princess

Lindsay now has this horrible infection throughout her whole body. She has been re-intibated and back on most of all of her drugs as if she were just out of surgery. They had to pack her in ice last night because if the 102 fever that she spiked. I called this morning and the nurse said that her fever broke and they had put her catheter back in too. She is on a higher dose of morphine as well to try and keep her comfortable so that she can just rest and get through this infection. We left last night, or I should say this morning, at 4am. The doctors and nurses were trying to re-insert an Arterial line but failed because of too much scar tissue. They were able to do a venus line which will help with meds and fluids. They are culturing her blood out of both the PICC line and the new line to see if that PICC line has to go and possibly to find out where this infection is coming from. That is my vote. Ever since we got that line, things have gone downhill. Please pray that the doctors come up with a solution for the princess and that she recovers from this soon and back to her self in no time. They are also going to do a full echo and x-ray yet today, so I will keep you posted.
Love, Suzie and JR

Tuesday, October 28, 2008

Lindsay has been quarantined....

The princess has been quarantined to her new living space. Sound familiar Aunt Carole and Uncle Robb?? Yes, we have been placed into a room with another baby that has the same immunity to the antibiotic that she was on to fight her urinary tract infection and her infection in her PICC line....Vancomycin. Anyway, I guess since this medicine is not working, she has to be quarantined because she could be contagious and certainly don't want to infect the other babies in the unit with whatever she has. It is certainly a precautionary measure, but still. The nurses and doctors now have to be gloved and gowned before entering her room. It is actually all pretty creepy, but we have to do what we have to do. She has had a better day than yesterday. She was throwing up and so they switched out her NG feeding tube to a NJ feeding tube. A shorter explanation is that they moved the tube lower into her body so there would be less of an opportunity to spit it up. So far so good with that. She has been gagging on phlegm all day but it has gotten better throughout the evening. Doctors also put her back on her Milrinone drip to see if that makes a difference with her as far as being comfortable. They were thinking she might have low cardiac output which might be why she is not acting like our baby the last few days. She has just looked like she didn't feel very well. She was comfortable when we left tonight. Long day once again and looking forward to coming home for the evening on Friday. Talk soon!

Hangin' Tough!

Well, for all of you who remember NKOTB, you will get this title! ha ha Hope you guys had a great time at the concert, Steph!

Lindsay is holding her own. She has had her morphine and Ativan totally turned off and the only one left to ween is the Dex. That could take a while yet but she is only on a .6 dosage which, who knows, that could be gone by the time we go and see her this morning! They are still giving the methadone to help with the withdrawal aspect but seems to be doing well with that. She has started to throw up which concerns us but the other side of that is that is a symptom of withdrawal as well. So, praying that that is just temporary. After a few days of watching her urine sample, it has been concluded that Miss Lindsay does have a urinary tract infection along with the one from her PICC line. Luckily, before finding out all of this, they had started her on a general antibiotic right away and seeming to the trick. They tweaked the antibiotics after this was found out, so now getting specifically at the problem. Last night was a great cuddle night with Lindsay before we hit the sack finally at 2am! We just couldn't leave! When I almost fell asleep with her in my arms, I threw in the white flag! I will post later this evening again and let you know the latest and the next steps as far as how long we plan to still be here.

Love to you all!


Monday, October 27, 2008



Sunday, October 26, 2008

Photo's are from Angie Grooten (Parchment Bake Sale)
Photo's from Suzie (Uof M Bake Sale)

Well, Miss Lindsay's infection isn't a UTI, unfortunately the infection was found in her blood in the pick line. The good news is that she isn't running a temp anymore and hopefully they were right on top of it before it got out of control.

I will let Suzie go into her educated medical explanation when she updates us.

What I want to do today with my post is tell you all what I think is amazing besides our little princess and I'm not talking about our Maize and Blue.

Amazing: is the fund raising committee, who on their own held one of the most successful bake sales in the history of our community. (Well I think it has to be.) Not only were they giving of their time and creativity, but the community's generosity was overwhelming. Bake goods were donated by people that we will never be able to thank. Tina said that when she came home from work, her breezeway was loaded with goodies from people that just wanted to help out.

Amazing: was the success of this bake sale at a football game with rain drizzling down in our Princess's honor.

Amazing: are the ladies wearing their pink bows in their hair that I can't help but attribute to Angel Annabelle ('cause babies in Michigan are not usually adorned in large bows)

Amazing: was the fact that my former neighbor's, the Grainger's, were featured on the front page of our local paper Friday night creating awareness for children's heart diseases after the loss of their HLHS daughter, Taylor.(remember my practice grandchildren I've talked about)

Amazing: was Don (Papa) setting up his tailgating tent and laying out his tailgating carpet for the bake sale so it was comfortable for the ladies and their customers.

Amazing: was Suzie's brother, Dan, driving through the night from Florida with his two kids so that he could witness the fundraising event and deliver bake goods from Rebecca and Stephanie. (oh yeah, there was a football game in Ann Arbor on Saturday also.)

Amazing: was Dan's competitiveness with Steph Winter when he and Don offered to take the leftover bake goods to "The Big House" on Saturday to continue the bake sale with blow horn in hand. His words to Steph were, "Game on" They actually stopped traffic on State Street for people to cross the street to donate for a brownie or cookie. You see, the blow horn came equipped with a siren. Dan said that his friend, Brett said it was the most fun he had ever had at a tailgate! After the game they delivered the funds to Suzie and JR where they were reduced to tears because they already knew how successful the ladies were on Friday night.

Amazing: is the fact that because of this generosity JR will be able to stay in Ann Arbor with Suzie during this difficult time.

Amazing: is how many people our little Princess is reaching out to. I truly believe that God is using her as a vehicle to touch people's lives and let them know what is really important.

Amazing: is all of you who helped to make this a success. I understand that this was the first of many fund raising events that this group is proceeding with. Please stay tuned to this blog for further event announcements.

Thank you all from our whole hearts and Lindsay's half a heart,


Saturday, October 25, 2008

Miss Lindsay has infection.....

Not too alarming, but until test results officially come in, we are 99% sure that she has a urinary tract infection. Yesterday and today she has been pretty irritable off and on. Today was the worst of it though. At first, doctors were thinking that she was withdrawing from her medications that she has been on now for the last three weeks. They gave her methadone to help, but no result. What did happen was her heart rate shot up to the 180's from being in the low 130's, respiratory rate was nearing right at 100 consistently, and she spiked a fever. Because of the fever, they went ahead and took a blood gas and the result of that was that her white blood count was higher that normally which means infection somewhere. We kept watching her and JR and I realized that she was in severe pain and then her diaper was wet. It was hurting her that much to pee! Unfortunately I know exactly how that feels and it is awful!! So, without official results back from a urine culture, the antibiotics have started along with Tylenol to help get rid of whatever has started. We should know for sure in the morning. Poor baby. She was pretty darned comfortable when we left for the night tonight so hopefully she is a little better already. The other thing that we learned tonight is the because of her new PICC line that they put in to prevent that from clotting up, they are going to start giving levonex shots twice a day. Yes, I said shots. Can you believe this?!! But, because the line is so close to her heart, we see why they have to do it. Having this line in for a while will also help in the time that if she was ever to get into trouble, easy access for medication is there already. However, she will have this in when we get home so we have to be instructed on how to flush the line AND to give her these shots. You ask, why shots? Well, we asked the same thing. This is to prevent so many blood draws. If she is still having to give blood for her to be tested all the time, that means transfusions often. We are getting ready for transplant, so a unnecessary transfusions wouldn't be wise because of the building of antibodies. Everything is now getting a little more complicated in treating her because of this preparation. We have to do what we have to do even if that means giving her shots. Levonex is another form of blood thinner that is very effective to prevent blood clots for this line. Asprin is not strong enough and cumadin is just a hard drug to give an infant.
Enough for tonight??? WHEW!
Hearts Hugs to all and .......GO BLUE!! Beat State tomorrow. Sorry Alison. :-)
Love, Suzie

Friday, October 24, 2008

Wednesday, October 22, 2008

Catch 22

Yes, Rebecca, Lindsay received your package. The lamb is just darling and she loves to snuggle with it. It has actually been the magic ticket on getting her calmed down and to sleep the last two days. Just so soft against her face makes her relax. And the sweet. You spoil her for sure! Thank you!!! Thank you!!!

The meeting went fine but we have a change in events. Apparently our little princess is doing so well that she is not a transplant candidate at this time. When we had the discussion with the transplant team last week, they never expected for her do be doing this well as far as weening off the drugs and eating, let alone from a bottle! So, in other words, she is too healthy right now to be listed as a transplant recipient. So, again the goal is to get her well enough to go home and hope for the hemi again in a few months from now. They will be keeping an eye on her daily for a few weeks when we finally get home. A series of "chemo" treatments would have to be done to get rid of the antibodies that she has already accumulated in order to get ready for a transplant. So, that still might take place in a few weeks but she needs to heal a little longer before that takes place. The antibodies are good for her right now, but not for a transplant. That mixed with tricuspid regurge and just "ok" function is just not a good mix. So, we will go down that road if she starts to show signs of trouble in a short time from now.
JR and I are headed home tomorrow morning to get some things at home taken care of since we will be here for another couple of weeks probably. Meaning taking home the capris and shorts and exchange them with winter jackets and blue jeans!!! Man, has it gotten cold!! Hopefully I will have time to make some home made goodies to bring back for lunches.
OK, now for those of you attending Friday nights football game. Keep in mind JR's suggestion was never intended to be followed through with so PLEASE take lots of pictures!! All of you are so wonderful. I tear up every time I think about what you are doing for us. It is AMAZING!! "Friends are God's way of taking care of us."
You all are truly our gifts from God!
Love always,
Suzie and JR

Tuesday, October 21, 2008

Feeding Frenzy!!!

Lindsay has had a wonderful day and eating like a little piggy. She is up to 80 cc's every 3 hours and not one spit up! She has taken allot of that in her bottle but, if she is sleeping, we don't awake the princess, :-) and just give it to her in her NG tube. She is still doing well with her weaning and might be in moderate care tomorrow or the next day. We shall see. There is one medication that she is still on that is holding her back from the move so hopefully by Thursday we will have a new address in this place! There is a picture below of another nurse favorite of ours, Jen Alberts. As you can tell by the little grin on Lindsay's face, she kind of likes her too. Yes folks, she is smiling!! I can't even begin to tell you my feeling when I saw that again for the first time in almost 3 weeks!
Praying for Lindsay to continue on her good feeding frenzy and to tolerate weening off her meds so that we can get the heck out of the PCTU. Love all the people that work in POD A but it is time to leave ...and soon!!!! We will miss our nurses for sure! We will be back again relatively soon though.
JR and I have a meeting ,about Lindsay and getting her on the transplant list, tomorrow with a few people from the transplant team and one or two of the cardiologists. So, big day I think. Lindsay is also getting her ART line out tomorrow as well. (the other line in her groin)So, off to bed I go but I hope these pictures make everyone sleep well tonight.
Heart Blessings from Ann Arbor!
Love, Suzie

PS Elaine.....Jr was reading your post from earlier today and he said that you should wear big pink bows on your head instead of ribbons! ha ha Seriously, you all are so incredibly giving, it is unbelievable. We are so blessed with awesome family and friends. We are very humbled as to what everyone is doing for us. From the bottom of our hearts, and Lindsay's half of one, we love each and every one of you

Monday, October 20, 2008

Pretty good day....

Lindsay has had a pretty good day weaning off some of her meds and getting better with her feeds. She has started to get this funky rash however, and the doctors can't seem to figure out what it is. She will have it in one place, half an hour later, it is gone. Then, it get the idea. So, as that continues to be a mystery, she is getting the healing done. She has had some leaking in one of her lines in her groin, so they had to take her down to the cath lab today to insert a PICC line instead. This one is in her arm instead of the groin, so that must be more comfortable for her. While they were down there, the doctors were able to get some pressures around her heart needed for the transplant listing. Might as well since they were there and won't have to go to the cath lab....again. Geesh! Poor girl has been sedated for over 2 weeks now! Which, if she has a hard time coming off the sedation, they will start methadone to help her wean. I really don't think she is having trouble, but with Lindsay, you never know! :-) We left tonight with her sleeping soundly so hopefully,Lisa (one of our favorite nurses!!), doesn't have too much trouble with her. Keep the prayers coming. Each and every one is working and God is certainly listening. Love to you all!

PS Has anyone noticed all the hair that she has grown on the top of her head in the last 3 weeks! WHOO HOO! Now she can start wearing the real clip in bows...maybe a ponytail in her near future????

Sunday, October 19, 2008

Mommy needed a get some work done! :-)

Ok, stalkers, I was gone one night!!! ha ha Yes, I went home for the night and then went into the office this morning to get some things done so that this week I don't have to worry about work and be able to hold and feed Lindsay as much as I want. As of tomorrow, I think our princess is moving to moderate care!!!!! JR stayed here to have one on one with Lindsay while I went back. I stayed at Mom and Bill's. Bill had gotten the hotub running so I sat in that for a little while. Wow, did that ever feel good. And then to top it off, Bill had breakfast ready for Mom and I when we got up. Now, how is that for service! Thanks Bill! And thanks Mom, for all of your help today in the office.

Lindsay has had a remarkable day. She got her chest tube out, went down on her sedation drips and starting oral meds like captopril and lasix, and they even removed the nasal cannula! She is so much more like our Lindsay and I can't wait to go back up tonight to give her a bath and then hold her and rock her to sleep. I even changed a poopy diaper when I got here. Yup, systems are all working! What we get excited about these days here at the hospital. :-)

I'm off to see her and will post more pictures tomorrow for you, probably after our trip down the hall! Love to you all!

PS....We got to see our boys on Friday! It had been 3 weeks since JR had seen Cruz! It was so nice to them. Hopefully we will be a family again by next weekend.

Thursday, October 16, 2008

Ladies and Gentleman.....Her Highness

Here she is! No vent! WHOO HOOO!!!!!! She looks like a little angel and more like our little princess did 2 weeks ago. Yes, as of tomorrow, we have been residents of the RMH for 3 weeks. Three surgeries, 2 heart caths, and lots and lots of we are. :-)

No holding tonight because she was still a little unstable as far as keeping her O2 sats up when getting mad. However, when we left her tonight, her blood gas was perfect!! So, looking forward to it tomorrow! Nighty night.

Love, Suzie

Deep breath, big decision made......

Ok, yesterday was a long day of information overload. We were in bed by 10pm instead of our normal 2am just to give you an idea of our exhaustion. We sat down yesterday with some of the transplant team to discuss our options with Lindsay. Don't be alarmed, we are not quite there yet, but at some point in time because of her heart function and leaky tricuspid valve, we will have to go the transplant route. After a long discussion and many questions asked and answered, Jr and I have decided to place Lindsay on the list before we leave the hospital to take her home. Yes, allot of you have questions, so I hope this explanation helps......
If we take her home in a week or so and then have her evaluated as planned in 2-4 months time, they could potentially tell us that she will not be able to handle the hemi again and will want to put her on the transplant list at that time. Not knowing what her condition will be a few months down the road, it may be too late for her and be too sick, and this way if she hasn't had an offer for a heart, she is then higher on the list and the chances of getting one are much better by that time if we do it now. The only down side to this, and Jr and I promised that we would be mentally ready, is that realistically we could get a call next week. Now that is just a "for instance" but who knows, it could happen. If that were to happen, we cannot turn it down whether we are ready or not. It is a BIG thing to decide to do this but so that all of you understand, she would have eventually needed this anyway. So, no big shocker to us that we had to have the meeting yesterday. We are just having to talk about it sooner than we thought. Her function now was the stick that broke the ice and who's to say that it will ever get better. Dr. Devaney talked to us briefly this afternoon and agreed that we have made the right choice. He was starting to head in that direction for Lindsay anyway. So, that made us feel even better about that. Ok, ask away because I'm sure one of you has a question that I didn't cover....mmmmmm Amanda maybe?? ha ha Please feel free because it may help us ask a question to the docs that we haven't thought of. You never know!
Like I said, allot to digest so hopefully I have explained what I needed to so that you know what we have coming ahead for the princess.
Oh my gosh, almost forgot!!....the princess was extubated today!! That's right, no ventilator!! She looks so good and so we will be able to hold her. I'm thinking tonight. So, I will post photos again when we return from our evening visit.
Keep the prayers flowing. The man above loves us sooo much!!!
Love, Suzie and JR

Wednesday, October 15, 2008

Our Princess is looking better

Hello to all:
I went to Ann Arbor tonight because I needed a fix. After seeing Lindsay Sunday night, I needed to go over to see her doing better and she surely kept her end of the deal. She looked like our little princess again. She looks like a dark haired little Cruz laying there.
Suzie will share the details, I just wanted you all to know how much better she looks.
Heart Hugs,

Tuesday, October 14, 2008

She looks good!

Lindsay looks really good this morning. Still no nitric!!!, down on the vent to 55 %, and her oxygen sats are still maintaining in the high 70's to low 80's. We still have a concern though with her heart rhythm. She is still being paced for when her heart rate dips below 100. She did fine overnight without any help from the pacer, but this morning and into this afternoon, the pacer has been helping her out quite a bit. Still waiting for them to figure that out but not too alarming because we know that this can be fixed. Maybe she might need a pace maker. Not official yet, but a possibility.
I just got a call from Steph and she is on her way to see us! So, we have something to look forward to today for our distraction. She said she couldn't stand it anymore. We can't wait to see her!
Keep sending prayers to God above and hope that her heart rhythm straightens out soon. Oh, and now it is time to pray for pee again!
Love, Suzie

Monday, October 13, 2008

To put everyone out of your misery....:-)

Lindsay is very stable and doing fine. Dr. Devaney was happy with the new shunt and in a day or two we will see where she is at. Hopefully this will allow the perfect amount of blood flow to her lungs and she can finally start going in the right direction. When she cam up from the OR, her sats were at 83, she didn't have nitric on!!!!, and she was already down to 80 on the ventilator. So, again, the waiting game continues but all in all she looks good. We still have a long road and about two more weeks here. Hoping, if things keep on the up hill, that we will be home in time to take the boys trick-or-treating. From the bottom of our hearts, we thank each and every one of your for your continuing support and the prayers that come with it. I will update again tomorrow after we see her in the morning.
We love you all and you all have a special place in our hearts!
Love, Suzie and JR

PS Didn't post a picture because we have all seen enough of Lindsay with a ventilator in and her eyes shut. The next, she will have eyes open and hoping that tube is outa here!

She's out of surgery

Suzie just called. They're waiting for the Dr. to come out to talk to them, but, Lindsay is out of surgery!!!!!!!
Suzie will update as soon as she can with updates on what the Dr. says.

Heart Hugs,


The surgical staff just took Lindsay down to the OR to put in a larger central shunt. She currently has a 3.5 and they are going to upgrade to a 4.0. Please pray that this turns everything around and fixes her issue with her lungs and not being able to get enough oxygenated blood into them. This should be a less invasive, if that is even possible!!, because they don't have to stop the heart and cool it before they operate. This is a good thing. There is still bypass however. They will also be able to get the fluid on her left lung out that the chest tube wasn't able to get. We got here this morning and they had taken that one out because it didn't work. I will update as we hear.
Pray, Pray , Pray....because if this doesn't work, which we should be able to tell in the next day or two, I'm not sure what the next step is.
Love to all!

Sunday, October 12, 2008

As Steph said, not the best day.

Lindsay has not had the greatest day at all. We were very excited to see her this morning because her night and all day yesterday was so wonderful. We get there to find that she is back at a 5 on the nitric and is at 100% on the ventilator. Can you believe that?!! She had a few episodes last night when her sats dipped down into the 40's. They then added the nitric back and didn't seem to help at all. Then another episode and had to paralyze again because she wouldn't calm down. This afternoon doctors conducted at least a two hour echo! Yes, two hours! They discovered that she has a pocket of fluid on her left lung and in the back. So, they had to put another chest tube in to drain it out. So far, not much drainage, but the hope is that when they turn her and adjust through the night that she will get more out. Doctors are again going to have a pow-wow about her tomorrow and discuss the next step. I tell you what, we are getting frustrated. Not to the point of making scenes, that is not our style, but we can surely get our points across clearly. We are back at the RMH to have dinner and then up to spend precious time with the princess. Mom and Bill were our visitors today and brought us soup for the week and of course the Terry and DeVito families are keeping us fed. Our fridge has been stocked once again! Thank you all! You don't know how much that helps us out!
We love you all and again, appreciate all of the love and support through this very difficult ordeal. Like, Stephanie said, down on your knees and pray that we get a solution so that Lindsay can move on to whatever is in store for her and to what God has planned. Aunt Carole and Uncle Robb, kiss our Cruzer for us! And Steph and Bob, give Cole hugs and kisses from us too! We love you!
Love always~

Saturday, October 11, 2008

Heart Sisters before we even created them.......

Just by looking at this photo, I think you can figure out why I thought this was such a big deal. Can you believe this Rebecca?!!! Right next to the M-Den is Annabelle Jewelry and Accessories. So, Jr and I got out and about before our visit at the hospital with our good friend Shannon. I just had to buy a small piece of jewelry from Annabelle's store! It is even spelled the correct way! Annabelle must have had some Maize and Blue in her blood somewhere. :-)

Going back in a little while to see our princess. The big success today was getting her off her nitric!! WHOO HOO! She has had a few heart rhythm issues and on the pacer still but they are pretty confident that that will correct itself as soon as she is off of her lasix drip and won't need potassium quite so often because she is peeing almost too much! Good girl Lindsay! Otherwise she is resting comfortably and making progress. Keep praying for smooth days and we will be able to get the vent out soon. They suspect by the early part of next week. Then we can hold her again! We cannot wait for that!

Love always~

Suzie and JR

Happy Birthday Princess!!!

Ok, this might sound crazy when I say this but, this had been the best 4 months of our lives. Just to even have her is a blessing regardless of what we have all been through. We love you Lindsay girl! Get better every day!
Love, Mommy and Daddy

PS Mark, I added the second song on here just for you! Enjoy! ha ha GO BLUE!

Friday, October 10, 2008

Keeping you up to date :-)

Lindsay had a good night while we were up there. We left for an hour to eat dinner and then when we returned they had attached the pacer to her. After surgery, they leave pacer wires out that are connected to the heart for "just in case" instances. She had a few irregular heart rhythms but think it is because of a shortage of potassium and magnesium. So, they had already started the K before we left and will give the mag a little later. They will detach the pacer in a few hours and just keep an eye on her rhythms. She did get more blood today too. Still same level on the vent and nitric. Her nurse put this adorable ribbon in her hair and in the morning, since it's game day and all, she will be sporting a maize and blue ribbon. Oh, and tomorrow is her 4 month birthday! Can you believe it?!!
We had some visitors today and was wonderful to have distraction and also a conversation other than about medical related issues. Thanks for coming to see us Rodd, Shawn, Adam, and Brian! And thanks for lunch too. Angelo's was good as always. We look forward to our visit with Shannon tomorrow.
Much love,
JR and Suzie
PS Elaine......I gave the blog a face lift while we were doing our laundry this afternoon. :-) Not necessarily free time, just running out of things to wear! ha ha


Lindsay is looking very good today and has improved her stats as the day progresses. She is still on a little No2 (nitric) and down on the vent to 50%. Things look good for now and hopefully weened from the vent by Sunday. So far, the new shunt has been working great and as she settles into her new attachment to her heart, her oxygen saturation is getting better as well. When we left this afternoon, it was around 80. It will definitely be a slow healing process but making progress already. We are so proud of her and can't believe her strength. God is sooo good. Keep those prayers flowing. She is hearing them and God is listening!
Love, Suzie and JR

Thursday, October 9, 2008

One word says it all.....

MIRACLE! Miracles do happen!...again. Lindsay was proof of that today with all of you wonderful people on her side and of course the mighty power of GOD. He did it again! Our lives were crushed yesterday with the news and this morning was grim. Well, I will just say it was awful for us. The unknown is a horrible feeling especially when it concerns your baby and it is totally out of your control. She is the strongest person that we know and are still amazed on what her tiny body has been through in just this last week.

Details of the surgery were wonderfully explained by Elaine. Dr. Devaney was very pleased and pleasantly surprised with the increase in her oxygen saturation after the operation. He put in a different shunt called the central shunt. I still have yet to look that up. :-) He even said that her heart function looks like it actually improved immediately! The operation was a success and she should be good to go for another 2-4 months before they decide on doing the Hemi again. He was so confident in the success that he went ahead and closed her chest! She will undergo a few heart caths before the Hemi to determine if she can withstand it. If then they decide that she wouldn't be able to tolerate the surgery because of the increase in pulmonary blood flow, they would put her on the transplant list. I want to thank you all, once again, for the continued support and prayers sent our way for Lindsay and our family. We feel the power of your prayers and they give us the strength to make it through this amazing hurdle in our lives. We are so humbled by the support from all over the country and trust me when I say, we feel the love! We are exhausted beyond belief, so we are going to take a short nap and then off to see our princess. Speaking of Princess.....the nurses think that as well. Just check out the photo above with her crown on. We took this one last night and the other is of Lindsay after surgery today. The nurses decided to make Lindsay a crown because of the rank in royalty that she is prooving that she is. :-)

Until tomorrow......

A very thankful,

Suzie and Jr

She looks great!

We were all allowed in to see Lindsay for 5 min. and all left with such a sigh of relief. She looks so much better than this morning. I will let Suzie update all the correct details and the plan of attack from this day forward as soon as she can. I do know that the Dr. said that as of right now he is NOT going to put her on "THE" list!!!!!!! He wants to see how she does, with the hopes of giving her 3 to 4 months to grow and possibly be able to try the Hemi again. It's just too soon to tell. Miss Lindsay will do it on her time.

I'm headed back to KZO to Bronson Hospital to see Cruz and of course, Bill. Don and Sue are going to take over tonight so that Bill can come home and get some rest. I don't know how we would have gotten through this if we hadn't all worked together on the coordination. Luckily Aunt Carole and Uncle Robb are home from their cruise so they pitched right in helping and also Bob and Steph. Three kids is a juggling act even without throwing in sickness.

We really owe this glorious day to God and all of your prayers to our Lord above!!!!
Heart Hugs,

Wednesday, October 8, 2008

Begging for your prayers

Well, tomorrow is surgery day. Lindsay's surgeon has decided the best option for her is to go back to her BT shunt only redo it with a bigger one. If she recovers fine from that, it will be six months or so before they try the hemi-fontan again. If she doesn't, Lindsay will officially be put on the transplant list by Monday. Please pray that this works tomorrow and that she accepts the change to her heart. We will be posting updates as we get them tomorrow. Lord, please be with the surgeons to make the best possible decisions for Lindsay tomorrow and that she has a speedy recovery so that we can get home and love on her again.
Love, Suzie and JR


Suzie and I are headed back to Ann Arbor. Bill is with Cruz at the hospital. If any of you can go up and give him a break to get lunch or supper, that would be great! If you're lucky, Cruz will be sleeping when you do.

Noontime we had a family gathering and designated who was going to do what. Nothing their doing for Lindsay is working and she's having a tough time. The four surgeons are meeting this afternoon to discuss what they are going to do. Lord, please guide them to make the right decision. It's in his hands.

Heart hugs,


Hello to all of you!

I'm going to do my best to update you on what's been going on. Suzie continues to be at Cruz's bedside, Cole got passed off from Don and Sue back to Bill and me, and JR continues to be in charge at the U of M with Lindsay. Cole goes to young 5's right at the end of our street and Stephanie Winter is picking him up and dropping him off or either Bill or I can do that so he won't miss any school. (Trying to keep some normalcy for him)

We left Bronson shortly after 12m with Cole in tow. We stayed with Cruz so Suzie could run home and get another change of clothes. It's difficult for her to get a chance to even leave his bedside, 'cause now she is all he wants! Suzie and Cruz had visitors last night. Fellow stalkers and two of our great friends, Tina and Elaine were able to meet each other as they stopped up to give Suzie some support.

This morning's update is: Cruz now has strept throat. Dr. Sommer's was in this morning and said that she's never seen this before...Usually stept throat preceeds mono...Bill and I had looked that up on the internet after we had him at ER a week ago today. His stept test was negative at that point, but the mono test was positive. The good news is that the antibiotic that they have had him on IS the correct antibiotic to treat the strept. So they made a great call to use that one.

Meanwhile in Ann Arbor......

JR oversaw (not visually) a heart cath on Lindsay yesterday which indicated that the pop off vein had gotten much bigger over the last 24 hours. The Dr's coiled it in order to stop the blood flow to the heart. This blood flow is suppose to go to the lungs after this 2nd surgery. As soon as they inserted the coil, Lindsay's oxygen level increased significantly!

The conversation between the surgeon and JR, after this proceedure, concerns us because the Dr. is hoping that this works because the alternative (putting in another shunt) doesn't look good. The Dr. indicated that he doesn't think that Lindsay's heart would tolerate another shunt. We are wondering if another alternative might be to put her on a list for a transplant? We wait to see..........

Our prayers are: Lindsay needs to tolerate her feeds in order for them to be able to start the Viagra. This is her best chance to overcome her issues. We also need NO MORE POP OFFS!!! Her oxygen levels need to stay improved! We pray that Cruz continues to improve so that Suzie can be back with JR, who must feel so alone over there by himself in Ann Arbor. If anyone has a day off, please call him to see if he wants company!

We continue to be and think positive, but I see Suzie becoming worn out. She still amaizes me with her strength and outlook. Let's all do our best to lift them up!

Heart hugs to all,


Tuesday, October 7, 2008

Cruz is out of surgery

The Dr. first inserted a needle into the abscess to see what came out...which was puss. He wanted to try this first because there are so many blood vessels in that area. When he made the incision, he still hit one. About 2 teaspoons of puss was removed from the nodule. Cruz has a drainage tube and will have for a few days.

They still feel that this was a side affect of the mono.

I'm sure Suzie will update after he's out of recovery. I'm trying to keep my new job, so I'm back at work after surgery.

Heart hugs,

Monday, October 6, 2008

Surgery for Cruz tomorrow

Suzie has arrived at Bronson Hospital to hold her son.  

The Dr's have talked to her and have scheduled Cruz for surgery at 7:30am.  They do not anticipate the antibiotic to have much effect on the lymph node.   We've asked for a bigger bed so that Suzie can sleep with him tonight.

I don't even know what to say, except, we are all there for them through this time of need.

Heart hugs,

I don't even know what to title this....

Now Suzie and JR have two kids in two different hospitals a hundred miles apart.   Yes that's right.  After Cruz's scan this afternoon, he was immediately admitted to Bronson Hospital.  His diagnosis is an inflamed lymph node that's pressing on his main artery in his neck.  The tests show that he has a pocket of puss.  He will be on antibiotics all night with nothing to eat or drink after midnight and possible surgery in the morning.  Oh my, this was a very difficult phone call for me to make to Suzie.

So......Suzie went in to see Lindsay again and is now on her way back to Kalamazoo to be with her sick son.  JR remained in Ann Arbor with Lindsay.  Don, Sue, Bill and me are with Cruz and I assured Suzie that one of us would be with him at all times, but respect her decision to come home.

I ask you all....what would you do?

Lord, haven't they had enough?

Thank you to Steve Murray who was the designated driver today ('cause ya know Bill still can't drive)  with the Dr. visit and then to the hospital for tests and stayed through admission.  What on earth would we do without our extended family?

Keep the thoughts and prayers coming.

Heart Hugs,


Today we came into her room with not exceptional news but at least a plan of attack. The doctors did an echo this morning and found that she has increased pulmonary pressure and is creating what they call pop offs. This means that because of the increase in pressure from the hemi-fontan procedure, extra blood is traveling into veins that go directly to the heart instead of to the lungs. The good news is that they have a solution, hopefully, and Lindsay is starting to get some pedialite to get something in her belly to tolerate her Viagra. Yes, that's right, Viagra! This will help the pulmonary volume and the hope is that this improves her pressure and that we can get closer to removing her vent. It will be a few days before we know the effect of the Viagra so we are assuming not much will change until then. Keep praying for our princess. She really needs them now! Very fragile indeed.
Please add our son, Cruz, to your prayer list. He is having a cat scan done at 3pm this afternoon to take a closer look at his very inflamed neck due to the mono that he has. Lord help us! The testing has begun again I think. Have I mentioned that I'm loosing my hair?!!! Wonder why.....
More updates tonight~

Pictures are in!

I would like to invite you to view pictures at Portraits by Patti. They are located at
When you go to the website click the Access Gallery link and enter in the access code below:
Access code: princess
After you do that you will be able to view these pictures.

Patti has also been gracious enough to offer 50% off any individual portraits that you would like to order. The offer code is princess for the discount.


Sunday, October 5, 2008

Prayers are working!

The prayers are certainly working from our fellow stalkers out there! :-) Today was much better overall and Lindsay even was able to get her chest closed. WHOO HOO! She was still pretty sedated when we left tonight and the doctors are not overly concerned with her abnormal breathing incident last night. They have just said she needs more time to heal. What ever the princess wants, the princess gets! She would just get so mad and then her breathing would get pretty labored and then effected her stats all across the board. They have cut back her lasix because she almost peeing too much! I guess my request for pee worked. Thanks to all of you for pitching in on that one! hee hee
Tomorrows plan is to start working on weening the vent. They are waiting until tomorrow to give her time to recover from the chest closure today. One step at a time is all and she is doing good again. Keep praying because it's working and He is hearing us!
Until tomorrow~
Love, Suzie

Saturday, October 4, 2008

Rough Day

The day started good. Lindsay's swelling had gone down quite a bit and her color looked wonderful. And then at around 4pm, Lindsay started showing signs of distress. She was trying overly hard to breathe over her vent and really struggling, it looked like, to wake up. Of course we can't have her do that because her chest is still open. She started to calm down a bit when we left at 7 and then we returned at 8:30 and the nurse now on duty said that at about 7:15, her head was eggplant in color and her oxygen saturation were down to 20!! Thank you GOD that we weren't around to see that! We have seen it once already and that was one too many times. They tried all day it to get her comfortable with pain meds but because she has built up such a tolerance for them already, they finally had to give her a paralytic. Yes, to paralyze her so that she can rest and restart her healing process. The other things that I'm sure the docs will discuss on rounds tomorrow is if it is a factor of her leaky tricuspid valve. hmmmm. We will find out more tomorrow on that but for now she is finally sleeping well and not struggling which is comforting yet scary at the same time. Please pray that JR and I don't get a phone call in the middle of the night tonight and that she continues to pee well and starts to let her body heal. She wants to get going and her body is telling her that she can't and apparently she didn't handle that very well. She certainly was stubborn today. Who might she get that from?? :-)
On a happier note, we left this afternoon for a little while and tailgated for lunch with my dad, Dan, his friend Will, Ken Zachary, Brett and Kelsey....on and on. Anyway, that was fun a little distraction was good for us for a little while anyway. While we were there, Uncle Dan bought Cole a ticket for the game. So, Cole got to go to his first U of M game today. He was so excited and he had a great time. Dad and Dan said that he was great and afterwards when they were grilling steaks, Cole wanted to reenact the game. Of course he was Michigan and Papa was Illinois. Cole pretended that he fumbled the ball. I can just picture it in my head. How cute!!
As for Cruz, he is miserable with Mono! Poor little guy just can't get comfortable and just feels crummy. Man do we miss him!! I just want to cuddle with him to make things better. He is in good hands however and Mom and Bill have been great caregivers for him.
Off to bed and praying for a better tomorrow~
Love, Suzie

Friday, October 3, 2008

Photos that I promised

Here is Lindsay's monitor this morning when we walked in. The concerning number in the operating room was the blue one at the bottom. This was only in the low 60's and Dr. Devaney was pretty concerned about that....but look at it now! 78. WHOO HOO!! Yes, we all know that she is on "Lindsay" time. Blood pressure and heart rate are perfect, for her, too. Heart rate is the top green number and BP are the red numbers. Cole wanted to see Lindsay up close today. He is so brave. He is looking at her with her chest open!! He loves her so much and can't wait until we can take her home. Doctors said today that they will probably close her chest on Sunday. They want to give her a little more time to loose some more of the extra fluid around her lungs. ... and her poor little head!!! Her color overall is awesome but still a little cold. One of our favorite nurses, Jen, was working today so it was good to see her again. They are all so wonderful, it is hard to say that you have a favorite, but extra special when you get to know them so well. Tonight we are headed back up to spend some quality time with her. Cole is all geared up with his Leapster and there apparently is a Star Wars movie on tonight. So, he should be good and entertained. I will update you again tomorrow. Please pray for a uneventful night and that Lindsay keeps going strong like she has been. We are so proud of you baby girl!
Love, Suzie


Well, I have been referring to Lindsay today as "our little rock star". I will post a picture in a little while of her and what we saw on her monitor when we walked in this morning. All of her numbers were as close to perfection as you could get! She actually had improved overnight and a few hours ago, the nurses have removed the Epinephrine and the Vassopressin because her blood pressure was so good! We left last night with not a good feeling in our guts but again, the princess has spoken and she is on a roll! She was not nearly as swollen as I thought she would be this morning. Her poor little head looks like it is about to erupt because of the extra blood flow so I'm sure she has an awful headache. Otherwise she looks great....and she is peeing wonderfully!! The doctors think they will get her chest closed on Sunday. She still has to eliminate more fluid before they will do that, which is fine. She is starting to wake up a bit but then is given more meds to relax her a bit. Can't have her too mobile with that chest open. She has built up such a tolerance to the pain meds from last time, that she is a tough one to get to stay under. So, she is on a versed drip too.
Keep the prayers coming. They are definitely working and being heard! Talk soon and I will have photos for you to look at too! GOD is soooo good!!!

Finally another update!!

Yes, it is 1:15 in the morning and we finally are back in our room at the RMH.....with Cole!!! Our oldest baby is back!! Lindsay has had quite a day. Ok, here we go......In the 5 hours approx. that she was in surgery, she had her shunt removed, patch successfully installed in right atrium, and no luck fixing her tricuspid valve. Every technique seemed to not work but doctors are not overly concerned about it. We will just have to see how she does in these next crutial 24 hours. She might have to have it replaced at some point down the road. She started to dip in her numbers tonight before we left but that was warned to us before she started to do so by the nurses. Typical for these babies to get worse before getting better. Once they figure out her sweet spots for the medicine, she should be fine. A medicine later on can control blood flow for the tricuspid problem as well. Here is what she is on right now: Milrinone, Dopamine, Epinephrine, Vassopressin, and Morphine. We were also warned that she will be a little marshmallow baby tomorrow when we see her. They are expecting her to be very swollen this time because of the increase in blood flow now to her upper extremities. All of this again is overwhelming and very familiar. I do have to say, and Jr and I both agree, that this time is much more frightening than the last. Please pray that her sats get better throughout the night. It is also time again to pray for pee! She had started lasix to relieve some of the pressure off her lungs to see if that would help her sats along a little better. What a little peanut. She has been so strong and she is putting up a good fight. I'm exhausted and will post more in the morning. Remember...pray for pee!
Love always~

Thursday, October 2, 2008

Update #2

Lindsay did fine after removing her shunt and this last update is Dr. Devaney was starting to insert the patch in her right atrium. Alicia, the nurse practitioner, wasn't sure if he had done any work yet on her tricuspid valve yet or not but will know that on the next update. Wasn't the right time to have a discussion with him. :-) We are all hanging in there and still praying that she keeps on this good path and that she soon comes off the heart/lung machine just fine.
Love, Suzie

Surgery Update #1

Everything is going fine. At 10:30 we got the first update and they had just started the incision and working through the scare tissue. They were able to get all of her lines in easily and handling the anesthesia well. We should have another update around 11:45. We were told this morning that the procedure will take about 5 hours. So, hold on to your seats and keep the prayers flowing!! They are being heard and I know that they are being answered!

Wednesday, October 1, 2008

A prayer for our Daughter

Dear Lord~
Please be with our daughter tomorrow. We pray that your hands are holding her and guiding her towards a beautiful recovery and back in our arms in no time. We pray that you are with all of the surgical staff tomorrow and that they are on their A-game tomorrow. Lindsay is stronger than we could ever have imagined and we just know that you will take care of her. We thank you everyday that we have such wonderful people that support us and support our choices for Lindsay to have a shot at life. I'm am certain that you have chosen her to serve you and have a long and happy life. Tomorrow is another miracle day and we know that you have the power to make this miracle happen.


Heavy Hearts Tonight Before Surgery

We're all going to sleep tonight with thoughts for Lindsay and her surgical staff. Hugs go out to Suzie and JR as they release their beautiful little girl over to the Dr's early tomorrow morning.

We have had Cruz all week and yes, the poor boy has Mono. Two years old and he has Mono. Can you imagine the week that Suzie and JR would have had at Disney with Cruz. Isn't it funny how things work out?

Bill and I took him in to the hospital last night as we thought his condition worsened. I have to tell you when we checked in we were told that they had never had such a prepared letter of authorization, even notarized, so that we could get the necessary care for Cruz. That's my daughter! I don't have to tell you how proud I am of her and of JR. What a wonderful husband and father she choose for her soul mate.

We returned home from the hospital at 3:30am when Cruz was released, only if we promised to get him to the Pediatrician today. Well, thanks to Papa Don for coming to our rescue to take him. For those of you that don't know, I've taken a new full time job as the Assistant Program Director for five local radio stations and Bill can't drive, so I really needed help today. I had already planned to take off early tomorrow to go to Ann Arbor, so Don really helped me out. Thank you, thank you.

Bill has been taking care of Cruz this week and doing an outstanding job. He has so much compassion for him and how miserable he is. Because my job is so close to home, I'm only gone for four hours at a time.

We're all excited to see Cole returning from his Disney trip with the Winter's. His Uncle Dan is going to pick him up at the DTW airport tomorrow night and we'll all gather in Ann Arbor after Lindsay's surgery. Don't worry, I won't be taking Cruz anywhere near U of M. Dan's on the road this evening from Pensacola to come up for the weekend to be with the family and oh yeah, there's a Michigan game Saturday.

Well I sure know I need some sleep tonight to be there mentally and physically for Suzie and JR tomorrow so it's off to bed for me. Cruz is already down, but with mono, he's sleeping a lot. We'll keep up with updates as well as we can tomorrow and thanks for all your prayers!

Heart Hugs,