So far so good on the new meds and new formula. Not one spit up! Can you believe that? She is like a whole new kid and she is even starting to smile at us. There is nothing like a baby looking into your eyes and then starts to smile at you. You just melt right there and then wish it were on video to remember forever! She and I have just been hanging out here at the house and going for walks every now and then. Since she can't be immunized for another two weeks, we are kind of on house arrest. That is fine with me. I am getting so much done around the house! Plus, we get all the snuggle time that we want this way.
I took the liberty this morning of photographing her morning meds. Overwhelming?? From right to left: Captopril, Digoxin, Reglan, Previcid, Plavix study drug, Asprin, Lasix, and the rest of the dose of Previcid. All of these are taken each morning at 9am before she eats. You would think her little belly wouldn't have room for all of this plus formula! She takes meds so well. I am so proud of our little princess. I'm just thankful that all of these are oral and not shots! Could you imagine?! But, if they were, we would just have to suck it up and do it.
The latest in the family is that we took Cole to the ENT two days ago and he will be having his adenoids out and tubes put in his ears August 20th. That week will be something else let me tell you! Lindsay has an appointment with the pediatrician on the 14th, a cardiology appointment on the 15th, Cole's surgery on the 20th, Cruz's birthday is on the 21st, Cruz to the pediatrician on the 22nd, and Cruz's party on the 24th. WHEW! Can I say that I will be calling a few of you out there for help!!!
Well, the kids are bathed and I'm ready to hit the sack!
Even though a hectic schedule sometimes we all complain about being so busy, but I wouldn't want it any other way! GOD is good!
Love, Suzie
PS I have had a few mentions about where were Cole's photos on Patti's site? We didn't have his done because we are using his school pictures now as his annual photo that I of course will pass along in the fall after we get them back. I have to slow down a little on photos of Cole to make it even between all three kids. :-) Plus, I do the kids photos at 1,3,6,9,12,18 months and starting at 2 years and on, just once per year....professionally that is.
Thursday, July 31, 2008
Wednesday, July 30, 2008
Photos are in!!
Hello!
I would like to invite you to view pictures at Portraits by Patti. They are located at http://www.pattisportraits.com/clients.
When you go to the website click the Access Gallery link and enter in the access code below:
Access code: Dean
After you do that you will be able to view these pictures.
From this site you will be able to order what you would like to purchase as well. You only have two weeks to do so, so you better hurry!
Enjoy!
Suzie
Sunday, July 27, 2008
A good day!
After only 5 hours of sleep for me and about 3 hours for my husband, it actually ended up being a great day. Lindsay was in great spirits and slept and ate awesome! Didn't act much like she had a belly ache as she has the last couple of days but now I think her system is finally getting used to all of the new meds and formula mixture. The picture of her and I is from yesterday enjoying some mommy/daughter time and the other is tonight after her much needed bath. She still smelled like a hospital so I had to change that. She didn't fuss much at bath time tonight either. We definitely have another mellow baby. How did I manage that?!! The boys had a great time tonight at their cousin Chandler's birthday party. They both fell asleep on the short ride home. Thanks Chandler! Sorry this post isn't so long tonight but JR has to get up at 4am and I'm exhausted. Until next time.....
Love, Suzie
Love, Suzie
Saturday, July 26, 2008
Short Message from mom
After reading Suzie's new entry below, I would encourage you all to go to Angel Annabelle's blog by clicking her name at the right. I challenge you all to read Rebecca's entry today without tears , for a child that you never new here on earth but we will know in heaven. She puts it into perspective how precious our children are, no matter what sacrifices we have to make (grey hair or no hair).
Annabelle's mom, Rebecca is such an elegant writer and really puts into perspective what it's like to have her daughter in heaven and the blessings that we have to have another chance to have Lindsay for as long as God has her on loan to us.
Yes Elaine, it is an Annabelle bow that Lindsay is wearing with pride!
I find myself so torn between being with Bill through his stoke recovery and being with my daughter and granddaughter during this time. Although I know that Lindsay is in great care with her loving mother and father, it is my motherly instinct to be with my daughter and love and protect her. This is where I have to rely on each one of you to do for me. Thank you from the bottom of my heart for all your help.
Heart Hugs,
Linda
Annabelle's mom, Rebecca is such an elegant writer and really puts into perspective what it's like to have her daughter in heaven and the blessings that we have to have another chance to have Lindsay for as long as God has her on loan to us.
Yes Elaine, it is an Annabelle bow that Lindsay is wearing with pride!
I find myself so torn between being with Bill through his stoke recovery and being with my daughter and granddaughter during this time. Although I know that Lindsay is in great care with her loving mother and father, it is my motherly instinct to be with my daughter and love and protect her. This is where I have to rely on each one of you to do for me. Thank you from the bottom of my heart for all your help.
Heart Hugs,
Linda
Friday, July 25, 2008
We are home!! (for the 2nd time!!)
I got to the hospital this morning and as soon as I walked into Lindsay's room, the nurse said that we were going home today. WHOO HOO! We got the new med list and 3 new prescriptions, and we were home by 1pm today. Papa and Grandma Sue came over after they got out of work. Thanks for dinner! Aunt Carole and Uncle Robb came over too for a quick visit and snuggle with Lindsay. I'm glad our visit tonight wasn't in the hospital! :-) It is so nice to be home and getting adjusted to the new time schedule for the medications. It seems like we are doing something every 3 hours along with feeds. Oh well, if it works, I don't care how much sleep I get! We have really overcome a huge hurdle this week and a week ago tonight, I really, down deep, thought that we were going to loose our princess. She has some wonderful angels looking over her wanting her to live along with hundreds of you out there praying for her to keep fighting. We thank God everyday for that. She has one extra special angel looking over her....Thanks for the bow Rebecca! Lindsay will wear it with pride. Here's proof......
Heart Hugs and Love,
Suzie
Thursday, July 24, 2008
We are in a regular room!!!
Miss Lindsay had a great day today. Other than getting belly aches from her new formula concoction, she should be good to come home maybe this weekend. She even got some cuddle time with "Aunt" Pam tonight.
They adjusted her formula again tonight before we left so hopefully no more stomach pains. The treatment for reflux has gone great so far. No spitting or throwing up since they started the meds so hopefully we won't have this incident again. I think I my have started getting some gray!!! We are home tonight with the boys and I will be up with her all day tomorrow so I can learn her new meds routine. We are taking home 2 more than what we came in with. :-) Not complaining if this works!
Bill went home tonight so that is great news on their end. Rest up Bill!
Keep the prayers coming! I think we have people listening up there!
Love,
Suzie
Wednesday, July 23, 2008
Update # 1098
Just kidding.....on the update number, it only seems that way to us.... Wanted to give you a mid-day update. (well we consider this mid-day)
Lindsay had a scan this morning and all was fine. No damage was done because they were so diligent about bagging her and respiration her so quickly. By her reactions at this point, we thought she was acting just fine, but they wanted it checked out.
She had her swallow study done and she definitely has reflux so the medicines and feedings are being altered. It just so happened that a Dr. was here today from U of M and said that they didn't want to do surgery on Lindsay because she's in too fragile of a condition.
I'm sure Suzie will be able to explain better later this evening if she can find the time to post.
.
Bill has been put on oxygen and they're running more tests and will NOT go home today. He had chest pain today and all he wants to do is sleep.
Update on baby Carlee: She's out of surgery in Ann Arbor and they repaired her shunt. Her mom, Amanda called Suzie as soon as they were done.
Heart Hugs,
Linda
Lindsay had a scan this morning and all was fine. No damage was done because they were so diligent about bagging her and respiration her so quickly. By her reactions at this point, we thought she was acting just fine, but they wanted it checked out.
She had her swallow study done and she definitely has reflux so the medicines and feedings are being altered. It just so happened that a Dr. was here today from U of M and said that they didn't want to do surgery on Lindsay because she's in too fragile of a condition.
I'm sure Suzie will be able to explain better later this evening if she can find the time to post.
.
Bill has been put on oxygen and they're running more tests and will NOT go home today. He had chest pain today and all he wants to do is sleep.
Update on baby Carlee: She's out of surgery in Ann Arbor and they repaired her shunt. Her mom, Amanda called Suzie as soon as they were done.
Heart Hugs,
Linda
Tuesday, July 22, 2008
A snap into reality
Well, (notice that is how I have been starting out my postings...) when the cardiologists come around and say "You're very lucky" or "I can't believe I am looking at her right now" you start to think and then you get very emotional. We came so close to loosing our princess on Friday. The very thought of it gives me goose bumps along with every other emotion imaginable. We have been lucky (there's that word again) to spend all the time that we have with her so far and hopefully we can have more cuddle time with her at home again soon. Hopefully tomorrow we will be moved into the regular care part of the unit and Miss Lindsay will start her swallow study. Yes, I have heard those words from a few other heart babies mommies before. Not uncommon but I am crossing my fingers that she passes with flying colors. On the other hand I have mixed emotions because if she passes, what the heck happened?!!! We will cross that bridge when we get to it but I think then they would just treat for reflux. Yes, just reflux. Sounds simple huh? But with heart babies, reflux can also be a fatal thing that thank GOD we overcame. We must have some wonderful angels in heaven looking over our princess for her to have made it through this. Did I mention that I was emotional tonight? :-) So, much so that I am headed up there again this evening and who knows how long I will stay. I just can't stand being so close and not being able to keep an eye on her, so I am going back. I hope all of you are having a better July! Things are looking up though. Keep those prayers coming and throw another in there for our heart friends, the Jones'. Carlee did end up getting airlifted to U of M from DeVos Children's Hospital this afternoon for another surgery for repair. She had the same symptoms as Lindsay did on Friday but hers ended up being a cardiac problem. Thank God for the quick action from her parents to take her in yesterday evening. There is a reason for everything and when the gut (and your baby) tells you to do something, you should do it. OK, now that the lesson of the day is over....ha ha ha
Heart hugs and love,
Suzie
We never intended for this blog to turn into a family blog. Wouldn't we all love to turn it back into Lindsay's with beautiful pictures of "Princess Lindsay" and stop all these other things from happening to our family.
Hopefully Patti will have the professional photos up soon on her website. Can't wait to see them!
(hint, hint)
Just wanted to say thanks to all those who made my phone blow up today and all the visitors Lindsay and Bill had today. Sorry to those of you that I was unable to get back to, especially you Elaine. I hope you all know that we all appreciate the messages you all leave both on the blog and on our phones.
I'm happy to report that both are doing well. Lindsay looks great and has had her feeding tube changed to her nose which makes her more comfortable. They are planning a feeding study for Lindsay to figure out why this happened. Her pediatric cardiologist said today that he, too, was surprised that Lindsay was laying there. He indicated that most kids don't make it through what happened to her. This just proves that all our prayers are working and that we must keep it up!
Bill says that he feels like he got run over by a truck, but other than that, I truly feel that he is recoverable if he puts his mind into his PT. It's making it a lot easier for all of us that he and Lindsay are both at Bronson so we can go back and forth between rooms. Hopefully Bill can continue his recuperation at home and can start that as early as tomorrow. The Dr's are still trying to pinpoint the exact cause of the stroke.
We're concerned about our other little heart baby, Carlee. She was airlifted back to Ann Arbor today with a serious concern about her shunt. Thank you all for adding Carlee and her family to our prayers.
Well, for those of you on the west coast, you're getting this update a little earlier because I'm still at the hospital. I'll peek in on our little princess before I go home, but again, I can tell you that she looks wonderful!
Heart hugs,
Linda
Hopefully Patti will have the professional photos up soon on her website. Can't wait to see them!
(hint, hint)
Just wanted to say thanks to all those who made my phone blow up today and all the visitors Lindsay and Bill had today. Sorry to those of you that I was unable to get back to, especially you Elaine. I hope you all know that we all appreciate the messages you all leave both on the blog and on our phones.
I'm happy to report that both are doing well. Lindsay looks great and has had her feeding tube changed to her nose which makes her more comfortable. They are planning a feeding study for Lindsay to figure out why this happened. Her pediatric cardiologist said today that he, too, was surprised that Lindsay was laying there. He indicated that most kids don't make it through what happened to her. This just proves that all our prayers are working and that we must keep it up!
Bill says that he feels like he got run over by a truck, but other than that, I truly feel that he is recoverable if he puts his mind into his PT. It's making it a lot easier for all of us that he and Lindsay are both at Bronson so we can go back and forth between rooms. Hopefully Bill can continue his recuperation at home and can start that as early as tomorrow. The Dr's are still trying to pinpoint the exact cause of the stroke.
We're concerned about our other little heart baby, Carlee. She was airlifted back to Ann Arbor today with a serious concern about her shunt. Thank you all for adding Carlee and her family to our prayers.
Well, for those of you on the west coast, you're getting this update a little earlier because I'm still at the hospital. I'll peek in on our little princess before I go home, but again, I can tell you that she looks wonderful!
Heart hugs,
Linda
Monday, July 21, 2008
Vent is gone!!!
Well, Miss Lindsay had a pretty darned good day. The vent came out this afternoon and the only IV medication that she is on is melrinone. About the same equivalent to the captopril that she was on at home. They have started to reduce that and begin the captopril again. These two drugs reduce the work load on the heart. As you can tell, she looks like she is feeling much better and looking more like the princess that she is. :-)
If you haven't caught it yet, notice that the blanket has her named perfectly monogrammed. Thank you so much Deb Ferrell for the beautiful gift for Lindsay. She is definitely our little princess!
On another note, we have had quite the month of July. What is that expression......when it rains, it pours?!! Bill, my step-dad, is just two floors below Lindsay at the hospital because after some tests, we found out that he had a stroke. Did I mention that July has not been my favorite??? So, if you would, please say an extra prayer tonight that he and Lindsay both have speedy recoveries. We also learned tonight that our special heart friends Amanda and Jason are taking their heart baby Carlee to the hospital tonight to get her checked out for aspiration as well. We have been in contact with them ever since leaving U of M and decided to get her checked out because she has come down with the same symptoms as Lindsay. Before going through what we just did, they went ahead and took her in with our advise to do so. These two girls are scary. When one had a collapsed lung in the PICU, then the other followed suit. This went on for a couple of other things too and it got to be pretty funny. It was like they were working together to get better. We are praying tonight for their family as well that Carlee comes back with a good report.
Off to bed I go.
Heart hugs and love,
Suzie
Sunday, July 20, 2008
just another note from mom
Hello all:
10:00pm and all's well. Lindsay is resting comfortably and Suzie and JR went home to have a "normal" evening with the boys while I stayed for a while longer with Lindsay. It's not like there is anything I can do for her, but I just want to be here and tell her that we all love her so much.
We don't know what's in store for Suzie and JR for the rest of the week or so, so I'm glad they'd go home, get a good nights rest, and have quality time with Cole and Cruz. Suzie called and said that it was so cute to see Cruz look around the house trying to find his baby sister.
NEWS FLASH........just got a call from Suzie and she's bringing Cole up so that he can see Lindsay. He isn't understanding that she, all of a sudden, isn't there at the house and had a little breakdown. But, he wanted to make sure it wasn't a long drive! Hopefully this will make him sleep better tonight.
Heart hugs to all,
Linda
10:00pm and all's well. Lindsay is resting comfortably and Suzie and JR went home to have a "normal" evening with the boys while I stayed for a while longer with Lindsay. It's not like there is anything I can do for her, but I just want to be here and tell her that we all love her so much.
We don't know what's in store for Suzie and JR for the rest of the week or so, so I'm glad they'd go home, get a good nights rest, and have quality time with Cole and Cruz. Suzie called and said that it was so cute to see Cruz look around the house trying to find his baby sister.
NEWS FLASH........just got a call from Suzie and she's bringing Cole up so that he can see Lindsay. He isn't understanding that she, all of a sudden, isn't there at the house and had a little breakdown. But, he wanted to make sure it wasn't a long drive! Hopefully this will make him sleep better tonight.
Heart hugs to all,
Linda
Update #3
Well, things are getting a little better. When we got here this morning, her numbers had improved significantly. She has started weening dopamine and her oxygen. So far so good. It is just a long waiting game that unfortunately we are used to . The goal is to get off the vent within the next couple of days. Her x-ray from this morning did indicate fluid on the right lung so they have started the "pounding" process to try and release that fluid back into the body. She has done well with that so far so we will just have to see on the next x-ray on whether or not it has gone away. The fluid on the lung does indicate that she for sure aspirated. So, when she starts feeding normally after the vent is removed, we will talk further about surgery to try and stop that from happening. That will be a few days away though. Maybe by the end of the week we will have a plan. Again, please pray that Lindsay will get off of the vent soon. It is just killing us to not be able to snuggle with her. We were certainly getting used to that!
Talk again very soon-
Love, Suzie
Talk again very soon-
Love, Suzie
Saturday, July 19, 2008
Update #2
Well, Jr and I are home for the evening after being with Lindsay all day in the PICU. Brings back memories of not too long ago in the PICU at U of M. I remember telling everyone that I couldn't get out of there soon enough. But that was when my baby was doing well. Right now, my feelings are that she can stay there as long as she needs in order to get better. Funny how those things change huh? Right now she is having trouble staying stable. So, in other words, she is not stable anymore but working towards getting that way. They are playing with a few things to get her stats up and then maybe in just a few days, we can get her off of the ventilator. She is doing all of the work herself but needs a little oxygen right now until her body recovers from going into shock. If I didn't mention last time, when we got to the ER last night, her body temp was only 84 degrees!! YIKES! Usually that is a sign of infection but the blood work done indicated no infection. PRAISE GOD!!!!!! That was because of the shock and has since stayed at around 98 degrees like where it should be. Pretty much the diagnosis is that she aspirated. What an awful thing for a baby to go through just from aspirating but heart babies tend to do that but it just can unfortunately be a life or death situation. We were definitely closer to the later of the two when we got to the hospital. Please pray tonight that Lindsay can adjust to the meds and get off of the ventilator as soon as she can.
Thanks Steve and Tina for coming to visit tonight. That meant a lot to us and please know that we love you both very much!
Good night and Heart hugs and love to everyone. Talk again tomorrow-
Love, Suzie
Thanks Steve and Tina for coming to visit tonight. That meant a lot to us and please know that we love you both very much!
Good night and Heart hugs and love to everyone. Talk again tomorrow-
Love, Suzie
Another note from mom
Hello to all you Lindsay stalkers:
Please allow me to fill in some of the blanks........
Once again, we can all be so proud of Suzie and JR for their quick response last night. The pediatric cardialogist used the word "LUCKY" to us after Lindsay was stablized. We had Dr's working on her at Bronson that were knowledgable in HLHS, for which we are thankful. As I arrived at the hospital in the trauma unit, I counted 9 Dr's and nurses working on Lindsay.
Our families have been through a lot lately and we continue our faith to know that God doesn't give us more than we can handle and that, as Grandma Lindsay always said, "things happen for a reason".
Case in point.......I had decided to go on a run with my hubby out to Reno Thursday to pick up a coach and drive it back to Coachmen in IN......Bill, my hubby, was so excited that I was going to go with him on this trip, 'cause after all I've not gone since Lindsay was born. But he woke up that morning with a headache and nausea, followed by vomiting and vertigo. He felt better by the time we left for the South Bend airport, we boarded the plane, and then there was a seating problem with a lady and a 2 year old child. We helped out by adjusting where we were seated, but Bill told the flight attendent that he still wanted on the isle because he wasn't feeling well. WELL, to make a long story short, he was removed from the flight and not allowed to fly until he recieved medical attention. We returned to Kalamazoo and spent the night at Bronson to get him checked out. He's resting at home and has a follow up appt. on Monday..........Point being, for those of you that know me, I LOVE to travel anywhere!!! And, I took this change of plans very well, after all, "things happen for a reason". And what a reason........(I mean other than my husband's health.)
Suzie had a Dr's appt. with Dr. Bob on Friday so I was able to help out and watch Lindsay all day while she did that and went to work to do taxes that were due for the business. The only thing I noticed about Lindsay during the day was that she was cold. I kept her wrapped as she slept and had her feedings. When Suzie arrived home, we gave her a bath and during that she expelled her feeding in the bath water. We joked a little about giving her a milk bath, redressed her and proceeded to feed her again, which went just fine. I left their home about 6:00pm and Lindsay was doing just fine. It was shortly after that that things deteriated quickly.
Dr. Bob and Stephanie saw the lights flashing from across the park and decided to call to see if they needed to come and get the boys. A very quick response from JR resulted in them swiftly doing just that. So, the boys spent the night at their home with their 3 children and the update from Steph was that Cole wanted to sleep with Cruz (how cute). WHAT FRIENDS Suzie and JR have. The boys are now going with JR's brother Ken and his wife Suzan, so they're taken care of for the time being. We'll go in to care mode for them next week, Aunt Carole has already checked in and, as always, is on call anytime they need her. What would they do without Aunt Carole and Uncle Robb? Once again I will be available for whatever they need me for because I'm in town and because "things happen for a reason." Thank you so much Grandma Lindsay for teaching me that!
Suzie and JR have gone home for a shower and to pick up a few things while I'm sitting with Lindsay. I spent the night here at the hospital while Suzie and JR slept in the room with Lindsay. The staff has been GREAT and allowed us to stay with Lindsay through every proceedure except the x-ray where we were just outside the door. Suzie and JR's knowledge, calmness under such stress, and love for each other is outstanding and I'm sure that shows immediately to all the staff involved!!! They could answer all the medical questions confidently and quickly so the Dr's knew exactly what they were dealing with.
To observe Suzie and JR looking over their daughter is one of the most precious things I have ever seen. You can just feel the love overwhelming the room.
Lindsay will be kept in the Pediatric ICU at Bronson until further notice and we expect that to be transport to the U of M Hospital. We'll continue to update as things progress.
Our prayers continue to be answered and we appreciate you all participating in our prayers.
Love and Heart Hugs to all,
Linda
Please allow me to fill in some of the blanks........
Once again, we can all be so proud of Suzie and JR for their quick response last night. The pediatric cardialogist used the word "LUCKY" to us after Lindsay was stablized. We had Dr's working on her at Bronson that were knowledgable in HLHS, for which we are thankful. As I arrived at the hospital in the trauma unit, I counted 9 Dr's and nurses working on Lindsay.
Our families have been through a lot lately and we continue our faith to know that God doesn't give us more than we can handle and that, as Grandma Lindsay always said, "things happen for a reason".
Case in point.......I had decided to go on a run with my hubby out to Reno Thursday to pick up a coach and drive it back to Coachmen in IN......Bill, my hubby, was so excited that I was going to go with him on this trip, 'cause after all I've not gone since Lindsay was born. But he woke up that morning with a headache and nausea, followed by vomiting and vertigo. He felt better by the time we left for the South Bend airport, we boarded the plane, and then there was a seating problem with a lady and a 2 year old child. We helped out by adjusting where we were seated, but Bill told the flight attendent that he still wanted on the isle because he wasn't feeling well. WELL, to make a long story short, he was removed from the flight and not allowed to fly until he recieved medical attention. We returned to Kalamazoo and spent the night at Bronson to get him checked out. He's resting at home and has a follow up appt. on Monday..........Point being, for those of you that know me, I LOVE to travel anywhere!!! And, I took this change of plans very well, after all, "things happen for a reason". And what a reason........(I mean other than my husband's health.)
Suzie had a Dr's appt. with Dr. Bob on Friday so I was able to help out and watch Lindsay all day while she did that and went to work to do taxes that were due for the business. The only thing I noticed about Lindsay during the day was that she was cold. I kept her wrapped as she slept and had her feedings. When Suzie arrived home, we gave her a bath and during that she expelled her feeding in the bath water. We joked a little about giving her a milk bath, redressed her and proceeded to feed her again, which went just fine. I left their home about 6:00pm and Lindsay was doing just fine. It was shortly after that that things deteriated quickly.
Dr. Bob and Stephanie saw the lights flashing from across the park and decided to call to see if they needed to come and get the boys. A very quick response from JR resulted in them swiftly doing just that. So, the boys spent the night at their home with their 3 children and the update from Steph was that Cole wanted to sleep with Cruz (how cute). WHAT FRIENDS Suzie and JR have. The boys are now going with JR's brother Ken and his wife Suzan, so they're taken care of for the time being. We'll go in to care mode for them next week, Aunt Carole has already checked in and, as always, is on call anytime they need her. What would they do without Aunt Carole and Uncle Robb? Once again I will be available for whatever they need me for because I'm in town and because "things happen for a reason." Thank you so much Grandma Lindsay for teaching me that!
Suzie and JR have gone home for a shower and to pick up a few things while I'm sitting with Lindsay. I spent the night here at the hospital while Suzie and JR slept in the room with Lindsay. The staff has been GREAT and allowed us to stay with Lindsay through every proceedure except the x-ray where we were just outside the door. Suzie and JR's knowledge, calmness under such stress, and love for each other is outstanding and I'm sure that shows immediately to all the staff involved!!! They could answer all the medical questions confidently and quickly so the Dr's knew exactly what they were dealing with.
To observe Suzie and JR looking over their daughter is one of the most precious things I have ever seen. You can just feel the love overwhelming the room.
Lindsay will be kept in the Pediatric ICU at Bronson until further notice and we expect that to be transport to the U of M Hospital. We'll continue to update as things progress.
Our prayers continue to be answered and we appreciate you all participating in our prayers.
Love and Heart Hugs to all,
Linda
Update #1
Blood work indicated no infection! Her heart function still looked pretty good but still not squeezing like they would like. Administering meds for that. The diagnosis seems to be that she will most likely have to have an alternate feeding method which will be solved with a procedure at U of M. We will know for sure soon but the cardiologist here will be in touch with Dr. Devaney (Lindsay's surgeon at U of M) on Monday to let him know that she is here. He will probably ultimately make the decision on what to do. It will be a long weekend! If she is still on a ventilator, she will be airlifted or if not on the vent, she will be ambulanced there. Either way, most likely we will end up in Ann Arbor again this next week.
All for now. Keep praying!
With Love, Suzie
All for now. Keep praying!
With Love, Suzie
An issue last night
Well, we had to take Lindsay to Bronson last night by ambulance because she was purple and had a very labored breathing pattern. Long story short, she is stable. She's on a ventilator and sedated, so very comfortable. We will have the lab work back this morning sometime to answer our question on whether or not she has an infection. The pediatric cardiologist on call said the she wasn't happy with her heart squeeze so they are administering meds to help that but she also said that this could be because of the stress of what just had happened. She is being given antibiotics in case of infection. Poor little thing has a few IV's now that were extremely difficult to put in so thank God that she was sedated. I don't think that an adult would have taken that pain very well! Bless her little heart!
I will update a little later when we know even more but the good news is that everything with her surgery looks great so we didn't have to be helicoptered to U of M last night. If she would have had an issue, that's where we would be today.
Dear Lord, please be with Lindsay and help her heal today. You do this for a reason so I am believing and praying that she will be just fine.
Please pray for Lindsay even harder than before!
With Love,
Suzie and Jr
I will update a little later when we know even more but the good news is that everything with her surgery looks great so we didn't have to be helicoptered to U of M last night. If she would have had an issue, that's where we would be today.
Dear Lord, please be with Lindsay and help her heal today. You do this for a reason so I am believing and praying that she will be just fine.
Please pray for Lindsay even harder than before!
With Love,
Suzie and Jr
Tuesday, July 15, 2008
Good report!
Our visit to the cardiologist went extremely well today and we go back in 1 month if you can believe that! The only change is that we are cutting her lasix dosage from 3 times per day down to once a day. Everything else is the same. She weighed in at a hefty 8 lbs 2 ounces! For only eating 2 ounces at a time, she is doing very well. She is however on 24 cal formula so that helps put weight on considering she gets tuckered out after two ounces. What a trooper!
As you can tell by the picture, she has started drama classes. :-)This picture is for you Aunt Dani. I just love my new summer dress!
Love you all and will keep the updates coming!
Love, Suzie
As you can tell by the picture, she has started drama classes. :-)This picture is for you Aunt Dani. I just love my new summer dress!
Love you all and will keep the updates coming!
Love, Suzie
Monday, July 14, 2008
Capturing a "first"
Thought I would post the "after" photo first because the first bath at home was definitely NOT a big hit with Miss Lindsay. The next photo says it all. Poor baby. You can see that her scar is healing beautifully. The smaller one to the left and at the bottom of her incision is from her chest tube. She is moving right along!
Natalie wanted to spend some time with Lindsay during the week last week. Lindsay just wasn't in the mood to play. Maybe next time Natalie! Can't wait for you to over again!
Natalie wanted to spend some time with Lindsay during the week last week. Lindsay just wasn't in the mood to play. Maybe next time Natalie! Can't wait for you to over again!
Visitors over the weekend
Uncle Robb couldn't wait to get his hands on Lindsay. This was his first time getting to hold her. How sweet do they look?!
The Grooten gang came over yesterday to visit. They were all excited to hold Lindsay. They spoiled her some more with presents and brought us lunch. Thanks guys, it was yummy!!!!
Papa and Grandma "Yum Yum" (Lumbard) said they were going through baby withdrawal so they stopped over for a visit today. Aunt Carole was the chauffeur and got to give her some lovin too. Lindsay even gave grandma a nice smile. So sweet.
Lindsay goes to the cardiologist tomorrow so I will let everyone know the results of the echo cardiogram and the EKG. Otherwise, she is still eating well and seems to be very comfortable all of the time. We are very blessed to have another content baby.
Heart hugs and Love~
Suzie
The Grooten gang came over yesterday to visit. They were all excited to hold Lindsay. They spoiled her some more with presents and brought us lunch. Thanks guys, it was yummy!!!!
Papa and Grandma "Yum Yum" (Lumbard) said they were going through baby withdrawal so they stopped over for a visit today. Aunt Carole was the chauffeur and got to give her some lovin too. Lindsay even gave grandma a nice smile. So sweet.
Lindsay goes to the cardiologist tomorrow so I will let everyone know the results of the echo cardiogram and the EKG. Otherwise, she is still eating well and seems to be very comfortable all of the time. We are very blessed to have another content baby.
Heart hugs and Love~
Suzie
Friday, July 11, 2008
Nurse's Report
Everything looked good yesterday with our visiting nurse. Lindsay weighed in at 7 lbs 11 ounces! That is almost a pound since we have been home! She is taking the bottle well and packing it on apparently. :-) We thank God everyday that she is doing so well. I think he hears a few hundred of you out there as well!
We have an appointment on Tuesday with the cardiologist and Lindsay will have an echocardiogram and EKG done to check things out. We are crossing our fingers that we don't come across any problems or concerns.
Today was a great day at home with the family and then this afternoon we went to see Patti for our photo session. I just can't wait to see what wonderful photos that Patti was able to capture. She said some will be posted on her blog this evening sometime. So check her blog out to get a sneak peak.
We have had a few people ask when her next surgery will be. Well, the answer to that is that we don't know either. It will depend really on when Lindsay shows signs that she is ready. The second is typically performed between 4 and 6 months of age so we are thinking this might take place late fall. Just too early to say right now.
We have an appointment on Tuesday with the cardiologist and Lindsay will have an echocardiogram and EKG done to check things out. We are crossing our fingers that we don't come across any problems or concerns.
Today was a great day at home with the family and then this afternoon we went to see Patti for our photo session. I just can't wait to see what wonderful photos that Patti was able to capture. She said some will be posted on her blog this evening sometime. So check her blog out to get a sneak peak.
We have had a few people ask when her next surgery will be. Well, the answer to that is that we don't know either. It will depend really on when Lindsay shows signs that she is ready. The second is typically performed between 4 and 6 months of age so we are thinking this might take place late fall. Just too early to say right now.
The photo above is Lindsay from last Saturday and yes, Daddy got inked once again with baby #3! The boys' names are on his back and Lindsay is on his shoulder. I think this one turned out great and just wait to see what photos Patti got showing it off!
Thanks again for the prayers and I will have another update very soon!
Have a great weekend!
Love, Suzie
Have a great weekend!
Love, Suzie
Thursday, July 10, 2008
More.......
I couldn't leave Dr. Bob out of the Winter family photos..........
We will be forever grateful to he and his staff for finding Lindsay's problem ahead of time. Can you tell that we are Michigan fans?
Grandma "Fishy" (Dean) holding Lindsay for the first time. I don't think she could stop smiling!
Grandma Smith also got her turn. It is so good to have our little princess home to hold all the time!
I just couldn't stop taking pictures of her in that cute little Monkey outfit. I will update again soon, I promise. We visit my friend Patti on Friday for some professional pictures so I can't wait to share those as well. (they will be posted within a few weeks and you can view them by clicking on the link on the right.....Portraits by Patti)
Again, keep praying and know that we take it day by day and sometimes, minute by minute but we are staying strong and believing that we will have our little Princess for a very long time. She is definately our miracle baby!
Love, Suzie
One more thing........
HAPPY BIRTHDAY BILL!!!!
We will be forever grateful to he and his staff for finding Lindsay's problem ahead of time. Can you tell that we are Michigan fans?
Grandma "Fishy" (Dean) holding Lindsay for the first time. I don't think she could stop smiling!
Grandma Smith also got her turn. It is so good to have our little princess home to hold all the time!
I just couldn't stop taking pictures of her in that cute little Monkey outfit. I will update again soon, I promise. We visit my friend Patti on Friday for some professional pictures so I can't wait to share those as well. (they will be posted within a few weeks and you can view them by clicking on the link on the right.....Portraits by Patti)
Again, keep praying and know that we take it day by day and sometimes, minute by minute but we are staying strong and believing that we will have our little Princess for a very long time. She is definately our miracle baby!
Love, Suzie
One more thing........
HAPPY BIRTHDAY BILL!!!!
New Photos!!!!
I think the bib says it all!
Lindsay has really settled in nicely here at home and now that the boys are back, we really feel like a family again.
Aunt Carole was anxious to get her hands on little Lindsay.
And so was Cruz! He just loves his sister and really helps me out especially if she wants her pacifier.......or even if she doesn't. :-)
This is Lindsay all ready to leave from the hospital. She was just as anxious as Mom and Dad I think. No one would ever know that this is her about 10 minutes after they shut every single one of her monitors off. Yes, I was a little nervous to say the least!
On one of our walks, we visited the Winter's. Garrett and William were so excited to get their "sanitized" hands on Lindsay. Notice the tube.....she was having a bad feeding day that day and I put the NG tube back in for a little while. Since Sunday, she has been doing beautifully and not acting too terribly tired after her whole 60 cc'c of formula. Maybe in the next week or so we can up the amount that she gets but for now she automatically stops when that amount is about done. Meds are getting easier to get ready. I think it took me about 20 minutes the very first time because I kept looking at the bottle 4 and 5 times to make sure it was the right one, the right amount, and the right time of day to be giving it to her. All in all, we have had a great almost first week at home with Lindsay. We have been very fortunate to have such giving people in our lives to deliver meals and clean our house. We couldn't have asked for better family and friends as we do.
On another note, we had a death in the family this week. This past Monday, actually Tuesday early morning, we lost my Uncle Les. (for those of you that kind of know the family, it is my Grandpa Lumbard's brother) Thankfully he wasn't in any pain and was able to leave this earth quickly without suffering. Funeral is Thursday. I know that he was greeted with open arms in heaven.
Well, because I could only figure out how to post five pictures in a single posting, keep posted and look at the next post for more pictures since our arrival home.
Thanks again for being stalkers :-) and please keep the prayers coming! We are certainly not out of the woods yet, but we have a darned good start and Lindsay is a fighter for sure! The nurse comes to the house again tomorrow and hopefully gives us a good report once again.
Heart Hugs and Love,
Suzie
Lindsay has really settled in nicely here at home and now that the boys are back, we really feel like a family again.
Aunt Carole was anxious to get her hands on little Lindsay.
And so was Cruz! He just loves his sister and really helps me out especially if she wants her pacifier.......or even if she doesn't. :-)
This is Lindsay all ready to leave from the hospital. She was just as anxious as Mom and Dad I think. No one would ever know that this is her about 10 minutes after they shut every single one of her monitors off. Yes, I was a little nervous to say the least!
On one of our walks, we visited the Winter's. Garrett and William were so excited to get their "sanitized" hands on Lindsay. Notice the tube.....she was having a bad feeding day that day and I put the NG tube back in for a little while. Since Sunday, she has been doing beautifully and not acting too terribly tired after her whole 60 cc'c of formula. Maybe in the next week or so we can up the amount that she gets but for now she automatically stops when that amount is about done. Meds are getting easier to get ready. I think it took me about 20 minutes the very first time because I kept looking at the bottle 4 and 5 times to make sure it was the right one, the right amount, and the right time of day to be giving it to her. All in all, we have had a great almost first week at home with Lindsay. We have been very fortunate to have such giving people in our lives to deliver meals and clean our house. We couldn't have asked for better family and friends as we do.
On another note, we had a death in the family this week. This past Monday, actually Tuesday early morning, we lost my Uncle Les. (for those of you that kind of know the family, it is my Grandpa Lumbard's brother) Thankfully he wasn't in any pain and was able to leave this earth quickly without suffering. Funeral is Thursday. I know that he was greeted with open arms in heaven.
Well, because I could only figure out how to post five pictures in a single posting, keep posted and look at the next post for more pictures since our arrival home.
Thanks again for being stalkers :-) and please keep the prayers coming! We are certainly not out of the woods yet, but we have a darned good start and Lindsay is a fighter for sure! The nurse comes to the house again tomorrow and hopefully gives us a good report once again.
Heart Hugs and Love,
Suzie
Monday, July 7, 2008
Home Sweet Home
I just wanted to update everyone on the Dean's homecoming........
Visitors have been trickling in.....that's been great you guys.
JR is off work all week and the boys get back tomorrow night from their camping trip. Mom and dad can hardly wait!
So, all in all Suzie and JR are getting their routine down with feedings, some with the bottle and some by tube depending on Lindsay's mood, but their really not having issues with it.
Believe it or not, I came down with a bug so I've had to stay away. Yes, that's right, even grandma can't be around Lindsay with as much as a sore throat. They can't even take her out in public because she hasn't had any of her immunizations.
So I'm still working the travel from home and hopefully I'll be able to go back over in the next day or two. I'm going through withdrawls.
Suzie stopped over last night and picked up the camera cord to the computer, so hopefully we'll see some updated pictures soon. (hint, hint)
We're still keeping up with another little baby (Carlee) that had her surgery on the same day as Lindsay. She's still in moderate care at U of M. We became quite attached to Carlee and her family going through the exact same thing except they didn't know ahead of time about Carlee's condition. (You go Dr. Bob!!!!!) I'm so glad Suzie and JR had time to prepare. Their baby was air lifted from Grand Rapids to U of M. (Once again, you go Dr. Bob!!!!!) Our joint prayers are said every day.
Heart Hugs to all of you,
Linda
Visitors have been trickling in.....that's been great you guys.
JR is off work all week and the boys get back tomorrow night from their camping trip. Mom and dad can hardly wait!
So, all in all Suzie and JR are getting their routine down with feedings, some with the bottle and some by tube depending on Lindsay's mood, but their really not having issues with it.
Believe it or not, I came down with a bug so I've had to stay away. Yes, that's right, even grandma can't be around Lindsay with as much as a sore throat. They can't even take her out in public because she hasn't had any of her immunizations.
So I'm still working the travel from home and hopefully I'll be able to go back over in the next day or two. I'm going through withdrawls.
Suzie stopped over last night and picked up the camera cord to the computer, so hopefully we'll see some updated pictures soon. (hint, hint)
We're still keeping up with another little baby (Carlee) that had her surgery on the same day as Lindsay. She's still in moderate care at U of M. We became quite attached to Carlee and her family going through the exact same thing except they didn't know ahead of time about Carlee's condition. (You go Dr. Bob!!!!!) I'm so glad Suzie and JR had time to prepare. Their baby was air lifted from Grand Rapids to U of M. (Once again, you go Dr. Bob!!!!!) Our joint prayers are said every day.
Heart Hugs to all of you,
Linda
Thursday, July 3, 2008
Meal Planning Time
I'll update you all as soon as we're released, but it looks like it's time to help the Deans out with meals so they can have quality time with Lindsay. The boys are gone camping with Don and Sue this weekend, so hopefully they can concentrate on their beautiful little girl and get settled in at home with little distraction.
Again Shannon Poortenga is the homefront coordinator, so please contact her so that we don't double up on meals. If you would like to visit the Deans, please call them first, I'm sure they'd love to see all of you. (Just not all at the same time. The party won't be until after the 2nd surgery.) It isn't like Suzie just had a baby, after all it's been 3 weeks.
Shannon's contact information is archived in May's blogs under "keeping up the Dean homefront"
Thanks and Heart Hugs to ALL OF YOU!!!!
Linda
Again Shannon Poortenga is the homefront coordinator, so please contact her so that we don't double up on meals. If you would like to visit the Deans, please call them first, I'm sure they'd love to see all of you. (Just not all at the same time. The party won't be until after the 2nd surgery.) It isn't like Suzie just had a baby, after all it's been 3 weeks.
Shannon's contact information is archived in May's blogs under "keeping up the Dean homefront"
Thanks and Heart Hugs to ALL OF YOU!!!!
Linda
Wednesday, July 2, 2008
Look Mom, NO tubes!
We've done our time, we're go'in home...........
That is if I pee really good tonight without my diuretic. (Lindsay, that is)
Everyone keeps commenting that she doesn't look like a "heart" baby. We hate to get overly confident, but, we have to agree. She's looking and acting GREAT!!!
The nurses tell us that it's unusual for HLHS babies to feed this well. She's up to 60 cc's of formula and doing well. Suzie was given the list of perscriptions today and she said that it just looks overwhelming. I'll tell you, Suzie is quite the trooper. I'm SOOOOOOO Proud of her!!! She has learned as much as possible about caring for her daughter. I know that she had time to prepare, but she's a sponge about everything she's being told.
Ok, I know I'm grandma and all and usually grandma's brag about how beautiful their grandchildren are, but come on......
SHE'S BEAUTIFUL!
LOOK at those EYES!!!!!
Heart Hugs,
Linda
A visit from Papa today
You might know that Lindsay slept through her visit with Papa (Don) today and then was bright eyed later on when the morphine wore off that they had given her when her chest tube was removed.
We'll know tomorow, after the echo, if our release day will be Thursday. JR already has the car seat in the van and finished the trim in her room.
Lindsay took another full bottle at both evening feedings which makes us feel really good about coming home. What a content baby she is. Honestly, how do Suzie and JR get these really good babies and then such well behaved children? Oh yeah, I guess it's just great parenting after this baby stage.
Like the Heaven's Child poem says, God knows who to send these special children to. We love, love. love her.
I'll update you all as soon as we get the word tomorrow.
Heart Hugs,
Linda
Tuesday, July 1, 2008
The chest tube is OUT!!!
I would like to catch you up on Lindsay's visitors
over the last few days.
Lynn from Parchment Methodist CoOp Preschool stopped to adore God's gift to us.
Pam Wesaw peeking in on Lindsay (by the way, Pam,
I left a picture CD at Ultra Tan and Travel for you!
Maggie Geiger couldn't resist patting Lindsay's precious head. Believe me, our family isn't used to a baby with hair, dark hair at that.
Jeff Wesaw, proud father of three himself, admire Suzie and JR's creation.
It's been a joy to share this experience with all of you sharing this blog with us. The support from you all has been one of life's blessings.
Suzie went over to the hospital earlier this morning and witnessed the pulling of the chest tube. HUGE SUCCESS!!!! They used morphine on Lindsay so she's a little out right now. Don came up this morning so they're having some wonderful father/daughter time. Hopefully Lindsay will wake up so we can get some great holding pictures with grandpa and Lindsay.
Lindsay has to have an echo before discharge and that's set up. Can you believe we're looking at Thursday as a possible release date? Woo Hoo again.......A little scary for Suzie, but she has to get used to trusting her instincts and know her daughter's coloration and normal breathing. It's a huge step to ween yourself from the monitors.
I know that we all have to remind ourselves that we have two more of these to go through, but, it will be so nice to have this one behind us, have a bit of normal at home before coming back.
Heart Hugs,
Linda
over the last few days.
Lynn from Parchment Methodist CoOp Preschool stopped to adore God's gift to us.
Pam Wesaw peeking in on Lindsay (by the way, Pam,
I left a picture CD at Ultra Tan and Travel for you!
Maggie Geiger couldn't resist patting Lindsay's precious head. Believe me, our family isn't used to a baby with hair, dark hair at that.
Jeff Wesaw, proud father of three himself, admire Suzie and JR's creation.
It's been a joy to share this experience with all of you sharing this blog with us. The support from you all has been one of life's blessings.
Suzie went over to the hospital earlier this morning and witnessed the pulling of the chest tube. HUGE SUCCESS!!!! They used morphine on Lindsay so she's a little out right now. Don came up this morning so they're having some wonderful father/daughter time. Hopefully Lindsay will wake up so we can get some great holding pictures with grandpa and Lindsay.
Lindsay has to have an echo before discharge and that's set up. Can you believe we're looking at Thursday as a possible release date? Woo Hoo again.......A little scary for Suzie, but she has to get used to trusting her instincts and know her daughter's coloration and normal breathing. It's a huge step to ween yourself from the monitors.
I know that we all have to remind ourselves that we have two more of these to go through, but, it will be so nice to have this one behind us, have a bit of normal at home before coming back.
Heart Hugs,
Linda
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