Tuesday, February 28, 2006

Guestbook entries for 2/28/06

The following are entries to Alex's Caringbridge guestbook on February 28, 2006

Hey guys!
Hopefully little Lex will be healthy soon. I read your journal every day hoping to hear good news. He has so many people praying for him. Get better soon Alex we all want to see new pictures! Come home soon little man, I want to come up this summer to meet your mamma and you!! Even though we haven't met Kat I still feel close to you. Take care and stay strong guys
Diana Darken, Addison Illinois

May God Bless and be with you. I pray for you today and every day. Love you, Great Aunt Lynn

lynn coleman

Monday, February 27, 2006

Guestbook entries for 2/27/06

The following are entries made to Alex's Caringbridge guestbook on February 27, 2006

We are praying for you daily, Alex & family. I am a Rice Lake, WI friend living near Gail Smith in Gaithersburg. The healing hand of our heavenly father be with you this day and also with you family! Vonnie and family

vonnie bennett

Continuing my thoughts and prayers!
Much Love!

Kat, I don't know if you'll remember me... I'm "abbygen" or "Abby_&_ Genevieve's_Boss". I just found out about Alex and wanted to let you know you and he are in my prayers! He's such a strong little guy to have been through so much so soon. God Bless. Aimee

Aimee Cacurak

Still praying for you daily little Alex. Keep being strong !
Your in my thoughts Kat and Craig.

Shannon Schutz

Day 30

Alex had another day of resting yesterday, he woke up some here and there but when he did he wasn't comfortable so they gave him bumps of his pain medicine.

He's not peeing real well unfortunately and he took on some more fluid on Friday night when they had to stabalize him, last night they restarted one medication called Nesiritide which draws fluid out of his tissues, the downside of it is that it's a new medication and not compatible with a whole lot so they have to run it with a lot of fluid, so they had to stop his nutrition to cut back on fluids. Even still it added to his fluid intake, almost seems like it defeats the purpose....

His white cell count today came back elevated which means he's probably fighting an infection so they started another antibiotic along with the prophylactic ones he already gets to try to wipe out whatever it is he's fighting. We were really hoping to get through this and get him closed without an infection.. but what can ya do.

They tell me they are gonna try to close him again tomorrow now. I am very frustrated about the whole thing because of the fluid he's taken on, his heart didn't handle it that well before and now he's even bigger so it will add that much more pressure to his heart for them to try to do it. Friday really set things back.......

Keep those prayers coming that we can get over this hump and they can by some miracle get him closed tomorrow.

Sunday, February 26, 2006

Guestbook entries for 2/26/06

The following are entries made to Alex's Caringbridge guestbook on February 26. 2006

Hi Alex, Craig, Kath, and family,
It's so nice to be able to hear the progress, your in my thoughts and prayers. Have a good day.
Love you, Aunt Lynn

Kat and family
We are continuing to pray for you all!

Hi Alex,
Just a note to tell you Gr Grandma Evertsen said she loves you and is praying for you constantly.I just talked to her and told her whats going on with you.
God Bless you baby Alex, Auntie Lynn

Saturday, February 25, 2006

Guestbook entries for 2/25/06

The following are entries made to Alex's Caringbridge guestbook on February 25, 2006

hugs and kisses honey my prays are with you, come home soon to teach us all. love Grandma and george

theresa marcoux

Day 28

Alex had a more stable day today. He was pretty tired from all the stress of last night and he's not peeing so well again so he's a little puffy. It's frustrating these backslides but we gotta take what we can get. They did some liver tests on him to figure out why his blood isn't clotting so well and those came back fine, they also did a full body ultrasound to make sure he's not still bleeding in there anywhere but we don't yet know the results of that.

Alex got to move to the side of the room with a window today, that's a nice change of scenery, we've been stuck in the corner for 3 weeks now and now we have more space, hopefully Alex will be happier over there and not pull anymore of his little tricks.

They decided with the fluid he took on that trying to close him now would be futile, if he didn't handle it without the fluid, he's surely not going to WITH it so now the plan is to wait until Monday or Tuesday to try again, give him some time to rest and get rid of some of that fluid.

So were back to praying for pee!

Friday, February 24, 2006

Guestbook entries for 2/24/06

The following are entries made to Alex's Caringbridge guestbook on February 24, 2006

I'm so sorry you've had a bad day. Keeping those thoughts and prayers coming your way.
Much Love,

Kat and Craig,
you both are in my thoughts and prayers. I know today wasnt a good day. Alex is a strong little man and will get through this. We are here for you whenever you need us.
Alex..... stay strong little man and get better. Your mommy and daddy want to hold you so bad.

Brandy Gatz

Dear little Alex, Im sorry you had such a tough day today. but dont give up! You are a strong lil boy! & You are absolutely beautiful! Your mommy & daddy love you VERY MUCH! & just remember when you go home, you'll have lots of playmates! I'll keep praying for you lil one!Kat, I know its been tough on you & hubby, Just remember you always have friends who will do whatever they can to help you through this tough time! He's a beautiful lil boy! & I'll pray every day & night for him & your entire familyMuch love~*Kris*~

Im sorry youve had a bad day today, but luckily tomorrow will be better, and its one day closer to going home!!! You are still in my thoughts and prayers. Please let me know if there is anything i can do for you *hugs*

Stephanie Clement

Day 27

Well, Alex didn't think too highly of the chest closure attempt. They got him together and he was struggling some so they just wired the top 2 bones together and closed him up. Well........ he decided it would be fun to hemmorage.... It was very very scary, he was riding that line for quite a while. they had to go back in and snip the wires and stop the bleeding.

Looks like they are gonna take another crack at it tomorrow, they wanted to today but the majority said no, let him rest today.

So pray tomorrow goes well!

Thursday, February 23, 2006

Guestbook entries for 2/23/06

The following are entries made to Alex's caringbridge guestbook on February 23, 2006

keep going alex...you can do it..your a strong boy and that will pull you through it all..Kat im still praying for all GOOD things to come your way!!

Day 26

His washout got postponed until tomorrow. They are still planning to try to close him so keep your fingers crossed he tolerates it and they are able. Then we work off the vent and off the narcotics.

We got some good news today. His chromosome study came back normal! He doesn't have Digeorge syndrome which can be associated with the heart problem he has. I don't know much about digeorge, but I know that it can be really bad and were thanking God Alex doesn't have it!!!!

He was good today. Wide awake and being adorable as usual.

Wednesday, February 22, 2006

Day 25

Alex had a pretty stable day yesterday. In the evening his blood pressure came down and his daddy of course worried like crazy, I guess one of the docs told him this is actually a GOOD thing, his blood pressure came down to a NORMAL newborn pressure and he didn't drop his sats or heartrate, so that shows a step in the right direction!

They are saying they are pretty sure they can close tomorrow, say a little prayer tonight that they finally can!

Tuesday, February 21, 2006

Day 24

Alex's washout yesterday went well. The night before last he had a bit of a rocky night and they don't really know why. They ran some tests yesterday and didnt' really come up with anything significant and he's been pretty stable since so we just don't know if it's a brewing infection, if it's because he's losing so much fluid so fast that it's taking important things with it, or what exactly so they made a few chances yesterday and are replacing some of his fluids, just to see.

They weren't able to close him yesterday, still a little too puffy. Maybe Thursday, or Monday....but soon!

Sunday, February 19, 2006

Day 22

Alex continues to do well. He has completely given up on sleep though, they added a drug and upped another one today and he slept maybe 30 minutes.... He seems to be saying enough with sleep lets get on with things!

He is peeing a ton and losing lots of fluid through his chest tubes, he's shrinking fast! His little hands are soooo tiny we forgot how small he actually is under there!

Another washout tomorrow. I am HOPING they can close him but not counting on it, he's still pretty puffy in the chest area and I'm preparing for having to wait. We just can't wait to hold him and he has to be closed and stable first. Were told when they do close him it'll be rocky for the first 24 hours, his heart isn't use to the added pressure of his breastbones being over it so it will add some stress to his heart for a bit until he gets use to it all.

He developed a tremor today in his hands, they said it's from the narcotics he's on, much as a drug addict will tremor :( Poor baby.

Saturday, February 18, 2006

Guestbook entries 2/18/06

The following are entries made to Alex's Caringbridge guestbook on February 18, 2006

Keep it up Alexander. You are a beautiful little boy, like all of the other "heart babies" I know. Speedy recovery.

Michelle Tierney

Day 21

Things continue to go well. Little Alex seems to be at this point healing nicely. One of the docs yesterday made a comment about extubating next week......... we'll see. It would be nice!

There isn't a whole lot to report at the moment, boring is good!

Friday, February 17, 2006

Guestbook entries for 2/17/06

The following are entries made to Alex's Caringbridge guestbook on February 17, 2006

Good morning baby boy, glad to hear that you are doing so well. I knew you would do ok, you boys do things all in your own good time.
You let your nurses have nice break this weekend and behave yourself. Let momma and daddy rest easy to and just behave yourself and keep healing.
I can't wait to see you again real soon.
Hugs and kisses from across the border,
Trista, Nathan, Emma and Ethan

Trista Swan

hooray hooray hooray baby boy..its good to hear your doing well. keep up the good work. we are all rooting for ya... kat, your in my thoughts and also your family too.. great things happen to good people.!

shannon henning

Thursday, February 16, 2006

Guestbook entries for 2/16/06

The following are entries made to Alex's Caringbridge guestbook on February 16. 2006

Hey guys,
Alex is beautiful. What a strong little boy. I know you guys must be going crazy, but he's made it this far, what a little trooper. We're all praying for all of you. Stay strong.

Diana Darken

Hey everyone,glad to hear my nephew is doing well, hopefully I can see him awake someday soon. your in all our thoughts little one...come home soon....auntie jana

Jana Wojcik

Day 19

a little late on the update today. It's more difficult to get on a computer now that Craig and I have swapped shifts at the hospital. Alex didn't have his washout today because the surgeon was in the OR all night but it's scheduled for tomorrow AM. They did get his NO turned off yesterday and he didn't seem to care one bit! His epi is the lowest it can go and his bp has actually stayed HIGHER than they like.

He's had enough of this whole thing they call sleep and has been awake all day, just wide eyed zoning out on his mobile. He's dropping the water weight nicely, you can really see the changes in his face and hands and feet. They are hoping to close his chest the end of next week.

They did a repeat ultrasound of his head and found that one of the spots that were bleeding cleared completely and the other, although it hasn't isn't of conern! Wonderful news. His leg that had the clot is looking much better, is warm and has good color now so they aren't too worried about that either. His echo today looked great.

The neurologist looked him over yesterday and said everything looks good, he even flinches when they shine the light in his eyes which they say is a great sign. He's also tracking objects with his eyes when he's awake.

when he's awake he breathes over the vent almost 100% of the time. Go baby go!

Wednesday, February 15, 2006

Guestbook entries for 2/15/06

The following are entries to Alex's Caringbridge guestbook on February 15, 2006

i was talking to jeanna and she gave me this site so i could wish u the best. hope alex gets better soon. i will be praying for him. anyways hope he gets better.

christopher wojcik

Thinking of you little Alex. Praying you remain strong and keep fighting with all your little might.. Kat and Craig, the rollercoaster of the NICU may seem to much to bear at times but remember if it does anything it will make you stronger than you ever thought you could be.

Shannon Schutz

I pray for your strength thru these hard time. May the Lord bless you.
Love you, Aunt Lynn

Dear Kat and Craig,
I feel as if I have been living with you these past weeks. Well, not really what you are going through but by your wonderful descriptions of what has been going on. I don't know how you have been able to do it all and I'm sure there are times you wonder yourselves. But I am always so happy to hear how things are going and just can't believe how strong that tiny baby has been. I have always been so careful and gentle with a small baby but I think Alex is teaching me something I never knew. You are all in my prayers. I wish there was more I could do to help. Take care. God Bless.

Love to all,
Aunt Gail

Day 18

Alex is doing great today. They are turning his NO machine off today to see how he does! (The nitric oxide helps keep his pulmonary arteries from spasming) His epi is lower than it's ever been and I was informed by his daddy a few minutes ago that he's alert and looking around right now and breathing himself so his nurse got him a mobile to look at. It might not seem like much, a mobile but healthy babies get toys........ that's how we see it.

He's peeing good and the fact that he can open both eyes now shows the swelling is starting to subside. We don't notice it because we see him all the time but the proof is there. Go baby go!

He has another washout tomorrow, really hoping he tolerates it better than this last one.

Tuesday, February 14, 2006

Guestbook entries for 2/14/06

The following are entries to Alex's Caringbridge guestbook on February 14, 2006

Hi, there, little Lambie!You don't know me, and I don't know you, but I know your darling Grammy, Lucille! She just told me about what an ambitious little guy you are...wanting to make your appearance and surpise everyone. :-)))And now you're making such great progress! Thanks mom, for the good news about his potty habits, etc. He'll just LOVE reading all about that again when he's around 16, hmmm? LOL!Well, I will put you and your family on my permanent prayer list. But here's a little prayer for right now and every day...it was my own girl's favorite when she was not much bigger than you, Alex: 'May the Lord bless you and keep you, Alex. May the Lord shine His face down upon you and give you peace and grace. In Jesus' name, Amen.' That's for you, too, mom and dad!

Warmly,Deb Helquist

Day 17

Well, 2 steps forward one step back it is. Yesterday he had a good day, even woke up and started breathing, what they call triggering the vent. That was very exciting for me. They had to move his line that carries his heart meds because he developed a clot in his leg though, as far as I know it's just wait and see what the clot does...

He had a washout yesterday and had a tough night. They needed to turn his epi back up tot .3, the highest they can put it because his blood pressure wasn't staying up:( They say these things are expected, but it doesn't make it any less frustrating when you see him getting better and then just like that we backslide. Craig took day shift today because I'm just having a rotten time with all of this so I thought it would be better to just give myself some time to work through my feelings before going in this afternoon.

Monday, February 13, 2006

Guestbook entries for 2/13/06

The following are entries to Alex's Caringbridge guestbook on February 13. 2006

Keep up the good work Alex!!!!! You are a strong little man and dont you forget it.

Brandy Gatz

Day 16

Alex had a really good day yesterday. They tested the waters a bit by going down a bunch on the 2 drugs he's been needing to keep his blood pressure up and he did GREAT. They also lowered his vent settings bringing him one step closer to getting rid of that.

His swelling has gone down a little, he's peeing really well now. Yesterday he was actually able to open one little eye and look at us for a bit! It was the first time I'd seen his baby blues since the day he was born and it was really nice.

He's still got a lot of work to do, but the docs say he's realling turning the corner and healing. He has wash out today and hopefully next week the swelling will be down enough that they can close his chest.

Sunday, February 12, 2006

Day 15

Things continue to look like they are moving in the right direction. He's peeing better, his weight was actually down a few ounces today! They have been able to come down on the 2 drugs (epinephrine and nitric oxide) that he was maxed on before, needing them both just to keep his bp and sats up. they might do a wash out on him today, not sure yet.

Today is his big brother Christian's birthday, so he's on order to be extra good today hehe

Saturday, February 11, 2006

Guestbook entries for 2/11/06

The following are entries to Alex's Caringbridge guestbook on February 11, 2006

Hi Kat, Craig, and family also Alex,
God Bless you all. Mom told me she came down to see you on Tues.She was touched by all the tubes and things you have to put up with. I know God is with you and blesses you. Love My prayers are with you.
Love Aunt Lynn

Day 14

So yesterday was a decent day. The echo showed good flow to both lungs and his heart muscle is pumping well, wooohoooo!

I found out something scary from one of the other former ecmo moms, the day they were thinking about putting alex back on it...... I'm glad they didn't. when her son came off and had problems she was told that they wouldn't put him back on it, cause they have lost every child that had to go back on! eeeeeeeeek I'm glad I didn't know that then!

He still needs to pee more. they turned down his epi last night to see what he'd do and he dropped his bp some, but not drastically although they did have to give him some Albumin through the night to bump it back up which made him gain a little more weight..... as if he needs anymore! He was 10 lbs 8 oz yesterday. He is peeing better, but still not enough to make headway with the fluid he has in his tissues yet, so keep sending those pee vibes.

Friday, February 10, 2006

Guestbook entries 2/10/06

The following are entries to Alex's Caringbridge guestbook on February 10. 2006

Hey Guys,
Been Praying so hard for you all! Please let us know if we can help in any way! The Kids say Hello and good luck! They also pass on their love to all!
Jen, Pat, Katrina and Family

This, is Ben, I just want you to hang in there, and when you're ready, you've got a buddy in MTL to come play with one day!
Hang in there, you are doing wonderfully. You are in my prayers, in my heart. Might just have to boogy on down sometime when I go visit my Aunt in Brown Deer Wisc. Keep strong!
Love Celina & Hayley & Ben xxx

Hugs Kat!!! We will keep you and your family in our prayers and wishing Alexander a quick recovery!!! He seems like a very strong little guy!!! Big hugs!!xoxo
Jessica & Trevor

Hi Alexander
You are a cutie :). Your mom told us about you on Babycenter. My son Ryan is a "heart baby" too. He is almost 2 yrs. old, and is doing great. You will too. You got lots of help and love at home, so hurry up and get there. I'll keep checking in.

hooray Alex...u are peeing keep up the good work so your swelling goes down...its so great to hear u are doing well... remember we all love you and think of your daily. Kat....if ya need anything dont be afraid to ask!
SHAN..from Wisconsin

Kat, I am so glad to hear Alex is doing better. I am praying for him every day, and you too. If you ever need anything PLEASE dont hesistate to call me, Im not that far away. Stay strong girl, talk to you soon.

Angie Poepping

Day 13

Quiet night and day yesterday. He started peeing! He just needs to do it a little more and maybe he can get rid of the 'michelin baby' look he's got going on. They weighed him yesterday....... 10 lbs 2 oz! Over half that is fluid, so you can imagine how swelled he is.

Not a whole lot to report. He's still got lots of work to do,making his heart do the things it's suppose to. It's hard work controlling all those body functions yourself!

Thursday, February 9, 2006

Guestbook entries for 2/09/06

The following are entries to Alex's Caringbridge guestbook on February 9 2006

good job Alex. keep up the good work... your a fighter and for that u are blessed.
god bless u little man..

shannon henning

Day 12

busy busy day yesterday. Were off ecmo! He was quite a stinker though yesterday afternoon, his blood pressure and sats dropped very low so they had to max him out on epinephrine to get him to stabalize and he did. He isn't peeing all that great so send Alex potty vibes! He's so swelled up his weight this morning was a whopping 10 lbs 2 oz!!!! More than double his actual weight in fluids. He NEEDS to pee.

This morning he's doing better. Being a little naughty with his blood pressure but his sats look good. This first 24-48 hours off ecmo are rough on him. His heart is, for the first time ever, working pretty much like it should and that's a big adjustment on him. Keep the prayers coming!

Wednesday, February 8, 2006

Guestbook entries 2/08/06

The following are entries posted to Alex's Caringbridge guestbook on February 8, 2006

wooohoooo lex boy...momma just called me and said that you are being such a good little boy!! AND SO STRONG, WAY TO GO LEX GETTING OFF ECMO...**tooting my horn**
You keep up the good behavior and keep getting stronger every day!!
Trista, Nathan, Emma & Ethan

Good job Alex, getting off the ECMO. Big hugs to mommy & daddy too! Here's hopin he'll be able to come home soon!

Lee-Anne Akister

Way to go Alex!!! Keep up the good work little man.
Kat and craig you guys are in my thoughts daily.

Brandy Gatz

Tuesday, February 7, 2006

Guestbook entries for 2/7/06

The following are entries posted to Alex's Caringbridge guestbook on February 6. 2006

Dear Kat and Family, Firstly, Congratulations on the arrival of your beautiful little boy. And secondly, my prayers are with you, Alexander and your family. He's a beautiful little boy, and such a strong little boy!. Take care of yourself Kat!. and Hoping your little man gets better soon so you can bring him home!
Luv Tegs Aka mums2angels05

Tegan Nadler

Kat & Family~
Congrats on Lex's birth! I am sorry to hear about his illness. He is a fighter. You guys are in my prayers. I have submitted this poem just for Lex.


Day 10

Sorry i haven't updated. I keep telling myself I'll update after they do this or that and it's just one thing after another and I get snowballed.

Alex has had a good couple of days now. Yesterday was pretty much just a day of rest, they didn't bother him too much. He decided that nap time was over though and freaked us all out. When they went to check his pupils he decided to open his eyes and look at the nurse! They upped his meds though and he's sawing logs again.

Today they did a bronchoscopy because they saw a shadowy area on his left lung and wanted to see what it was. It was some leftover blood and the top part was collapsed so they flushed it out and it shouldn't be a problem. They also did what they call a clamp trial on his ecmo, basically they took him off it for 30 minutes to see what he'd do and he did GREAT! The only thing keeping them from fully pulling him off was the fact that in those 30 minutes he needed a lot of fluid and they figured they'd set him back too much by trying to force it today, she said his heart muscle is stiff and will take a while to loosen up but they are giving him a med to relax it some and we are hoping tomorrow is the day! So keep your fingers crossed that Alex does well tomorrow and gets rid of that awful machine. So that's all pretty good news. His heart has healed, the repair WORKS!

Otherwise not much to report. Alex got a quick visit from his grandparents today, that was nice. Unfortunately the other baby in the room was being naughty again so we couldn't stay in there long :(

More tomorrow, hopefully i'll be able to report he's off ecmo!

Monday, February 6, 2006

Guestbook entries 2/6/06

The following are entries posted to Alex's guestbook on February 6, 2006

hey kat & craig!!
what a beautiful baby boy! congrats first of all to all of you! i'm still getting over all that hair he has! i know its an aweful roller coaster ride right now for you and your families, but god has a reason and plan for everything, lex is already a miracle baby and fighting this battle hes even more a miracle. i was so happy to hear hes doing better. i can't belive all those machines hes on but thank god for them. hes going to be home keeping you up befor ya know it!! and i bet all his brothers and sisters just love him to pieces. that wil be the hard part, taking turns holding him..lol your going to have to draw straws for your turns..lol baby lex is in my prayers, and i will pray until that lil guy makes it home happy and healthy! which will be soon, cause the son of the cheeseburglar will not take NO for an answer!!..lmaO i love you kat!, you all take care and were all pulling for that lil man!!! keep us posted!

melissa meyers

Dear Craig & Kat
Hey its lisa finally got a chance to look at alex's web site hope all is well we are praying for you all

Sunday, February 5, 2006

Guestbook entries 2/5/06

The following are entries made to Alex's Caringbridge guestbook on February 5, 2006

Stay strong baby boy your a fighter Love ya Kat!

Tricia Myers

May God give you all the strength to face the challenges ahead! Prayers for speedy healing heading your way.


Praying for you little Alexander. You keep being strong litle guy. Your in my thoughts Kat and Craig.

Shannon Schutz

Dear Kathleen, Craig and family,
I just wanted you to know that I had sent the website to a neighbor of my Mom and she got to read it this afternoon. She didn't know how to send you a message but she wanted me to tell you that Alex it beautiful and that she is praying for him and all of you.

Love and prayers to all, Aunt Gail

I just wanted to say Congratulations on your son .You both have been on my mind constantly. I pray god gives you all strength to get through this difficult time and know that you have many friends praying for you all. I will continue to pray that the surgeries go well and will keep checking in to see how things are progressing. Love and hugs

You, your family and brave little Lex are in my prayers every day. I pray that he will get better soon. He is such a little fighter!

Hey Kat, I just wanted to tell you that your in our prayers, Alex is such a strong little boy, Your a strong Mommy to be going through all of this too, Thanks for showing me the cute pics of alex, love brit

Brittney Herath

Dear Kat and Mr. Alex,
My family and I are praying for you!
Dellaina Holland

Day 8

Another long day. He went into surgery at 8am and right now at 4:30 were waiting for him to get up to his room. The repair was successfull in that they were able to widen the arteries and hopefully that will allow the blood to flow more freely through them. They weren't able to take him off ecmo today, as he had some bleeding into his lungs that need to heal. hopefully in a couple days. They did have an odd event in surgery, his spleen started to bleed for unknown reasons, his doctor said he's never seen anything like it. They were able to stop the bleeding though. His cardio says she can hear a nice strong murmer now so he should be good! She seemed much more optimistic than she did on Thursday night.

His head u/s also showed 2 small spots of a brain bleed which is something that is a risk while he's on ecmo due to them having to thin his blood. right now they aren't too concerned with them but please pray they absorb soon!

We added another picture in the photos section. It shows all of Alex's "toys". Just to give you a general idea of what he's doing here.

Thank yo all again for your prayers, and a special thank you today to Jackie for sitting with us and keeping our minds occupied!

Saturday, February 4, 2006

Guestbook entries for 2/4/06

The following are entires made to Alex's caringbridge guestbook on February 4, 2006

Kat~ I just wanted to say Congratulations on your little boy, he is gorgeous. I will keep you and your son in my prayers.

Congratulations on your precious little boy! I'll keep your little man in my prayers.
Lots of love from a BBC Feb 05 Mommy (bcHOSTJellieBeanieX3)

Alexander, I hope you're healhty and home soon!

Day 7: 2nd update

I'm updating again tonight because there has been a change in plans. His echo today showed his heart is working very well (woohoo) but the repair they did isn't. So they have to go back in tomorrow, go back on bypass and fix it. He goes in at roughly 8am and they said it should take 2-4 hours. Keep praying that they are able to fix it, and that his heart has recovered enough to not need the ecmo machine when he comes back up and that he can be on his way to recovery. A huge thank you to Trista and Nathan for being wonderful friends and taking my other kids while we are dealing with yet another surgery. We hope you never need the favor returned but we owe you one.

Day 7

I've decided to start updating this in the morning since I'm at the hospital during the day and then Craig and I switch places in the afternoon, it's hard to get on the computer at the house with the kids.

Alex had a good night. They had to do a wash out on him last night (they use sterile water to wash out his chest and get rid of any gunk in there) because his blood pressure was having issues. The wash out seems to have resolved it and he's having a bit more of his OWN blood pressure today which is a sign that his heart is doing more of the work on it's own.

Yesterday they did an echo and tried to turn down the ecmo machine (the bypass) but he wasn't ready yet, they are going to try again today. His head u/s came back good yesterday (to check for brain bleeds since they have to thin his blood for the ecmo) so that's good. That too will be repeated today and every day he's on ecmo.

They have to replace a couple of his IV lines today as they weren't working well. He now has one in his head, poor baby.

He's all puffed up like a blowfish which is kind of odd to see since he's so short it looks funny.

they are hoping to start to close him on Monday and hopefully he will be off ecmo soon! Keep those prayers coming!

Friday, February 3, 2006

Guestbook entries 2/3/06

The following are guestbook entries made to Alexander's caringbridge site on February 3, 2006

Kat, Lex is in my prayers every day. I admire your strengh, and you can see that strengh in your beautiful son. He will get through this with flying colors, we are all thinking about you. God bless.
~Angie in E.C.

Look at your family! Once again, the site of your beautiful bunch has me in tears...so blessed with so much love! Tell him to rest his little body and get well...and tell him his fiancee makes her debut next week! So many angels hover over us and our new babies...that just can't go wrong.
Bless you all...and I'll talk to you soon Kat!

Hey hey little man its a brand new day with a nice big working gift in your body. I am so happy today!!
Now you be a good boy today and don't give mommy and daddy too much mischief!!
Craig and Kat, today starts a new day of healing for everyone!! Those surgeon's hands were the hands of god!!
I think the prayer connection has GOT IT GOING ON!!
Love you all!

Kat you and baby Lex are in my prayers..Lex is a strong lil man and I pray he comes home soon

Sonja F

I just wanted to let you know that you are always in our hearts and we are praying everyday for Lex to have a speedy recovery and be home and enjoying the loving family he has. God bless all of you. Keep fighting little man!

Victoria Tunney

You are in my thoughts and prayers - Hang in there, little guy!

Tawnia Nowakowski

Alexander is such a beautiful little boy, My thoughts and prayers are with your family and Alexander for a strong recovery.

Ashely Parker

I am from the sept05 birthclub on babycenter, and i read your story, and we are praying for you and your little one May God Bless you. May all go well by the way your little one looks so precious.

Janice Ann floyd

Alex and family,
I put you on a prayer list today at the Sisters of Franciscian, God bless you you are a handsome baby boy, Love you, Aunt Lynn

Kat, you and your precious baby and your family are in my thoughts and prayers. I wish I could say or do more for you. Hang in there. He is beautiful :)

Thursday, February 2, 2006

Guestbook entries for 2/2/06

Below are guestbook entries made to Alexander's caringbridge site February 2, 2006

I'm praying for you today Alexander. God be with you and your family. I know God will be with you.
Love Aunt Lynn

Omg Kat! you Are in my prayers every day! I hope the best for Alex! He has been strong this far, you know he will grow into a stubborn lil man! We love you Alex hang in there!

Christy Thomas

I just saw that you have added pictures--he is absolutely adorable!! What a sweet little peanut! I am continuing to pray that his surgery went well (assuming that he did indeed have surgery today) and that he recovers well. He certainly has proven to be a strong little boy!
Beth P.

My Thoughts and Prayers are with you and that precious baby boy.

Brandy Gatz

Kat, my heart is with you and I am praying for Lex to get better and be home with you and the rest of the family soon.

Stephanie Clement

Kat, please know that you, your sweet baby boy and your family are in my thoughts and prayers. He is so precious and beautiful, so little and yet so strong. Keep fighting, Little Man!! May God be with you all...

Kat you have one precious lil man!! And I want you all to know you are in our prayers! Keep fighting little man!! :)

Jessica Gilliam

Be strong little Lex!! We are all thinking of you here and praying for you. Hurry up and get big and strong so momma can bring you home. My little man has some clothes he has outgrown that he would like to send your way.
Kat, I am thinking of and praying for you also hun. If you ever want to talk, remember I have free long distance and will very happily call you even if you just want someone to vent at for a few. Take care of that little boy and of course yourself woman. We miss you in chat hun :X

Meghan Marcusse

Day 5

To say it's been a long hard day is an understatement. Our little man spent 13 hours in the operating room. At 4pm we were told they were finishing up and he'd be in his room in an hour. An hour and a half went by and he wasn't, so we found some information and learned that he had some bleeding issues and they were working on that. We waited with baited breath for what seemed like an eternity until the call came in that they were finishing up and the doc would come and talk to us.

Alex's tissues are so fragile due to him being so small that the stitches started tearing. So they had to put him back on bypass and put in more stitches to make the arteries hold together.

Right now they are getting him situated in his room. He's still on a bypass machine because of the time it took to fix him and having to go on bypass twice, his heart needs to rest for a few days as it is unable to pump strong enough right now due to the stress to provide enough blood to his lungs and body. His heart never stopped, it is just tired from all the stress of the day.

We should be able to see him in an hour. Please keep sending your prayers, he really needs them right now.

Wednesday, February 1, 2006

Guestbook entries 2/1/06

Below are guestbook entries from Alexander's Caringbridge site for February 1, 2006

Hey guys,I am sorry to hear that the joy of the birth of your son has been dampened by this stressful time. I pray that Alexander comes through his surgery with flying colors and is able to be in your arms in your home with your family soon. Sending lots of hugs to Baby, MOmmy, Daddy and all of his caring siblings..what a family full of love.

Lee-Anne Akister

My thoughts and prayers are with all of you. So much happening to such a tiny being. So thankful his is in such good hands. Take care and much love to all.

Gail Smith

Dearest Lex,
I just want you to know that even though we'll probably never meet, you have touched my life in so many ways. My family has you and your family in our prayers. I pray for nothing but the many beautiful blessings you will be given, and a quick and speedy recovery. Stay strong little man and know that God's healing touch is on your heart.
Kat, please take care of yourself. Lex is going to need a strong healthy mommy to take care of him when he gets home. Know that all of your virtual family is thinking and praying hard for you and your little miracle.

All my love and prayers,

Sweet Little Lex,
You are a strong little guy and have alot of fight in you. Keep it up little man. There are many people that are praying for you and that love you very much. You get you're strength and fight from your momma and it shows.
Kat and Craig,
You are both in my thoughts and prayers.

Thought and Prayers,

My thoughts and prayers are with you and the little precious Lex! I know it's hard to be strong during hard times like these but remember that your heavenly father loves you and will take care of your precious baby boy! He has touched so many lives and the little peanut doesn't even know it yet! Hang in there and please make sure that you are taking care of yourself. Your baby needs you now more then ever so you need to be healthy and strong for him. We love you Kat and we are praying for you Lex!!!!

Kim Post

You never know how truely powerful prayer is until you witness it. Lots of love and prayers!!! Keep fighting Lex your a strong little boy with a very strong Mom. Theres lots of the world you have yet to see outside that hospital and I know you'll be out of there in no time!! We love you and are praying daily for Lex. Keep Strong and know prayers do work.

Mandy R

Dear precious Lex,
What a strong amazing little boy you are. You have fought a battle most grown people never could. God's love and your families love will pull you through all the hard times. I can't wait to someday have the honor to meet such a brave boy like yourself.
My sweet friend Kat,
Please know my heart aches for you right now. Your so strong and I know right now you must feel helpless. Your baby is a fighter and he will be fine, I just know it! Please call me whenever you need a shoulder to cry on or if you need me to come and play and hang out with the kids. Or if you need me to run to the store for anything. Im here for you! Anytime of the day just call Im a short drive away! Thinking of you and praying for you always!

Kat, Craig and family:
I just wanted to let you know that you are in my family's hearts and prayers. We are all praying for a speedy recovery for little Lex. I am here if you ever need anything. God bless all of you, and your brand new little man.

Victoria Tunney

Day 4

Tomorrow is on for surgery. To say we are worried is an understatement although our little guy has proven many times over that he is strong. He was baptised this morning.

I got to hold him pretty much all day. That was nice. He decided to keep us all on our toes though by dropping his blood pressure. Apparently he just got too comfortable or something. I realy hate those monitors, every time something beeps i don't breathe until it stops.

He is a little jaundiced today, my little pumpkin boy and his eyes are swollen from all the fluids going into him so he can't open his eyes, I can't wait to see his pretty eyes again.

During the cath I guess they did find something unexpected. Alex's pulmonary arteries, which are the arteries that connect the lungs to the heart don't connect to his heart at all. Literally the only thing keeping his blood oxygenated at this point is the PDA which is still wide open as you can hear the whooshing of his murmer anywhere on his chest. So tomorrow they will connect the arteries to his heart and put in a shunt, which is a doctor made PDA. I have been warned that they may have to leave his chest open for a couple days to let the swelling go down, and he may spend the night on ecmo, which is a heart/lung bypass machine. Hopefully neither of these things are required.

The plan is to get him fixed this much, to buy him some time until his little body can grow and be strong enough for the operation that will fix his heart completely.

We are terrified but hopeful. Soon I will be able to see my babies face without the vent.

I apologize for not getting the pictures on this site yet. Craig got the other kids today and I was at the hospital but holding Alex the entire time so I didn't get on that computer, and the computer here at the ronald mcdonald house I can't upload pics. They will come soon.

Please pray for Alex tomorrow. It will be a rough operation on his little body. Send him the strength to endure it.