Foster Lake, New Hair, Ty's Room!!

Just a photo update. I got my hair cut, tired of kids pulling on it and all the humidity. Too hot. We went to Foster Lake on the way home from picking up the boy's. While we were there we visited our good buddies in Sweet Home. Had lots of fun on our buddy's boat. And finally put Tyler's train table together!!!!! Yay! Chris is doing great. Will update everyone when we get him weighed again.

Home Sweet Home

Hi all. We got home about an hour ago, and boy are we bushed. Chris got discharged this morning around 10 am. His x-rays were clear, and his O2 sats were good. They were a little lower than normal but not much. It woulda been the only reason to stay one more day, so Dr. Chang said he would be fine with him going home if we were fine going home. We hung around the hospital a bit (against our will) waiting for his new prescriptions. Both Dr. Chang and the pharmacy made mistakes, that Robert caught, so we woulda gone home with the totally wrong meds if it weren't for him. Kinda shakes my confidence, but I am grateful for (most of) the hospital staff. So then we were off to Uncle Jim and Auntie Nancy's for a great dinner of all my favorite things. Chicken, green beans, salad, and ......mashed potatoes!!! And even a bowl of ice cream for dessert. We figured we might wanna get home some time tonight so we finally took off.

I am just so grateful for all the support and prayers we have received and keep receiving. It is hard for me to imagine that 4 days ago Christopher was on bypass open-heart surgery. He is truly a miracle, and proof that miracles still exist today. (Though we shouldn't need proof.) He is a constant reminder to me that God hears our prayers, and knows our hearts and our sorrows. I know Chris will be okay now that he has this surgery behind him. He is the strongest little baby I have ever seen. Even in the first days following surgery, he is smiling and giggling and trying to put his feet in his mouth. This is the most miraculous recovery. Everyone who saw him (even Docs) could hardly believe his cheery disposition and speedy recovery following such a serious surgery. Once again thank you Lord, and thank you all!

He is home in his crib, sound asleep. He is on a couple of extra meds for a few weeks. We will be back to see Dr. Chang in three weeks, and we see our regular Dr. on Tuesday. So far, no wound care, feeding pump, feeding tube, or any of that stuff. Since home Chris has doubled what he was eating in the noisy hospital, which well exceeds the goal they had set for him. We are hopeful that with this surgery behind him, he will eat and grow to be a solid, strong baby and put on lots of weight.

Lots of love, and a little video from the Wirts. Enjoy!

Going HOME!!

Well little man is doing great. He hasn't had any oxygen today, and got his pleaural caths out. He ate alright and the Cardiologists said we will probably be discharged tomorrow. Ya, what a good little healer! Thanx for prayers and support in our behalf.

Tough man.

Our tough little man is on just his regular meds, with occasional Tylenol. He had to be put back on oxygen today via nasal cannula, because he wasn't maintaining minimum oxygen saturation's. He gets daily "treatments" with c-pap (juts like the one used for sleep apnea) with pressurized oxygen. This helps his lungs stay inflated, clear, and wards of possible infections. Right now oxygen would be the main thing keeping us here. The nurses are pulling next to nothing from his pleaural caths, so they might pull them tomorrow. They pulled his external pacer leads, so now all he has is his cannula, and his pleaural caths, and IV and his Art line. All in all, everyone is very happy with his progress. We were told that we could go home as early as Saturday, but because of the oxygen it might be a couple days longer.

First day post op.

So just updating everyone on Chris' progress today. First of all, he was extubated last night and has done extremely well off the ventilator. The top lobe of his right lung is slightly collapsed, so he has high pressure oxygen going through a nasal canulla to try to reinflate it. He is off the Melernone drip which is one of the main things that was keeping him in PICU. He is taking all his meds orally very well, and I even fed him three times today by bottle! He did so well. Our goal is to keep the feeding tube out and to not get any fluid in his pleaural caths. (He is doing this all well so far) He is awake quite abit and is very alert. He is still being medicated for pain and swelling, but very lightly. All he has right now is his IV, ART line and his pleaural caths. He still does have some external pacer wires, but hasn't used them since right after surgery. Even a couple of hours after surgery he was already doing all the work on his own, his own pacemaker didn't even have to kick in. He has cried quite a bit, which is always rough, but it is a much better sound than one might think. We are hopeful to be going to Peds early tomorrow. Other than that we are checking on him often. He is moving through recovery so well, he has impressed all the nurses and the cardiologist with how fast he moving along. We love you guys and thank you for your love support on prayers.

Visit with little man

Just got back from visiting Chris. He was quite out when we got there but woke up and opened his eyes and stretched his legs. He is on a few meds and of course has all his drainage tubes. He is expected to be in PICU for at least a day. He has to show that he doesn't have to use his ventilator before they'll move him to Peds. They will manage his pain and keep a close eye on him for the next day or so. That is when there will be complications if there is going to be any. Keep praying for little man. He is such a strong boy. I am so surprised with how much he has gone through, and yet he still smiles and has such a bashful and cheery personality.

Saw our baby boy!

Rob and I got to see Chris when he was wheeled in his little bed. He looked pretty bad, but a lot better than the last surgery. He was all pink due to the rerouting of his bloodflow. He will have pretty bad headaches because of the increased bloodflow to the upper body. We are now waiting for a phone call from the cardiac case manager so we can go see him. We are so thankful for all of your prayers. His left lung did collapse due to the vent being placed to far down, but it should resolve fairly quickly.

Off Bypass!!!

Within the length of time it took me to get online and update the blog, Chris has gone on bypass, had the repair done, and is now off bypass. The surgeon is working on closing his chest. I am so glad we wont have to see him with his chest open like last time. Rob and I are heading up to Peds as we speak, to see him as he goes by. We aren't allowed in the room until he is fully set up with all his drains, tubes, and vent. I know it is going to be hard but he is doing so well. They said he has been doing great. I am so greatful for everyone's fervent prayers. I know he is in the Lord's hands. We may not get a chance to update for a while, since we are going to be with him as soon as we are allowed to. Thank you everyone for everything.

1st update

Our case manager just updated us and they are doing great in surgery. They put his CVC line (central line) in his neck. And his art line in his left wrist. The surgeon has done the initial incision and has started looking at the scar tissue. They said that he is doing great. Keep praying.

Day 1 Emmanuel: Surgery

So... we've been here since 6:45 and the surgeon and anesthesiologist came to get Chris about 15 minutes ago. They explained how Chris' shunt will be removed and said that the surgery typically lasts about 5 hours. We will be getting an update on the progress in about an hour. I will let you know what the update is when they let us know. Keep little man in your prayers. He is a fighter but I know he needs our help. Please pray for the surgeon and mom and dad too. Pray very hard for us.

Hard days ahead.

Hello all. I don't write very many posts like this, but today, I have to. I am feeling very sad. I don't know why. I have know reason to be. I have the best husband. He makes me laugh so much and I can never stay mad at him when he gives me his puppy dog eyes. It sounds stupid but it's true. I have the best three boys any mom could ever have. They do drive me crazy from time to time. But they all bring so much joy and love into my heart. I can't even remember my life before all my boys. I have so much love and support from the best group of family and friends anyone could ask for. We have so much, and want for nothing. And I am thankful, everyday.

But today sadness has come over me. A feeling of deep sorrow. I am so scared for my little son. I love him more than words can ever express in any language on any planet in any universe. He is my precious angel, and I am not ready for what lies ahead. He is supposed to be in our family and he is supposed to be my son. He brings so much life to us. He brightens my heart every day. He will open his sleepy eyes, and the first thing he does is give me a huge bashful smile.

I need all your prayers now more than ever. I am thankful to have so many Christian friends and family. Please pray for him, please pray for us. I don't know if I have ever needed strength more than I do now. Please pray for the surgeons, and the perfusionist, and the anesthesiologist, all the nurses who will be caring for him. Pray like you have never prayed before. I believe in the power of prayer. I know our prayers are heard. I love you all. I hope that this image that has brought me some comfort today doesn't offend anyone. And if it does, I really don't care, its my blog.

Ere you left your room this morning, did you think to pray? Oh, how praying rests the weary, Prayer will change the night to day. So, when life seems dark and dreary, don't forget to pray.

More video of a very happy little man!

4 day countdown photos

Inquiring minds want to know......

I just thought I would post this now, since I know I will be asked in the upcoming days, what is exactly done during Chris' surgery.

I posted a diagram of a healthy heart and one of Chris' heart pre-op, so you can all see the very underdeveloped left side components. On the diagram of the HLHS heart you will notice the PDA which is the only way Chris' body was getting blood at birth. This is a ductus which typically closes during the first hours or days of life, which is why you will not see it on the healthy heart.

Now that Chris has had the Norwood procedure his body is getting oxygen rich blood via the Sano shunt. This is the shunt that was put in so that Chris would be able to be taken off medications that kept his PDA open. This shunt ultimately does what the PDA did without the use of medication. The workload on the heart is still double that of a healthy heart.

During the Glenn Procedure, the Sano shunt will be removed, and the blood to the body will be redirected through the Pulmonary, removing about 50% of the workload. After this surgery Chris should be able to put on more weight and function fairly normally without tiring as easily

After the Fontan, (3rd surgery, between 18 months and 5 years) the right ventricle will pump only oxygen rich blood to the body, and the pulmonary (with the help of a new shunt) will essentially bi-pass the heart completely, keeping a steady flow of oxygen deprived blood going directly to the lungs.

Hopefully I did okay describing that, it is fairly confusing, I know. The way I normally describe it is, his heart is broken and has to be jimmy-rigged to work right (not to be too light-hearted no pun intended).

So he has a hard road ahead, but I hope we can raise him so that he doesn't feel different than any other kid. My goal is, since he won't know how it feels to have a fully healthy heart, that he won't feel deprived or like he's been cheated, but to be thankful everyday, and be able to have a normal childhood and adulthood. ( I hope the same for my other children too.) His heart defect is the norm for him... even if it's been a roller coaster for us. Besides, he will always have Uncle Luke to relate to and talk to about his defect. I know they will be close. I love you all, and am grateful for all your love and support.

Second stage reconstructive open-heart surgery: The Glenn Procedure

Hello all. I wanted to update everyone on Chris' Wednesday check-up with the cardiologist. Dr. Chang was kinda regular, meaning not pleased, but not overly concerned. Chris' heart function is good, and his tricuspid valve is still leaking moderately, as expected, but it is no more worse off than it was a month ago. As you all know, he has been struggling to put on weight. This is one area that seems to be a reoccurring problem. Dr. Chang was not very pleased with his weight gain at all. I have truly tried very hard to help little man to eat but he is not that interested. Dr. Chang also informed me that poor growth is a sign of heart failure. Great.

Dr. Chang let me know that we are ready for the second surgery, but that he needed to present Chris to the team. This is a meeting where everyone involved with surgery reviews his progress, and all his echo's and makes sure everyone is on the same page with moving forward. Prior to this meeting, which took place on Thursday, Chris' surgery was scheduled for the 21st. Now, due to scheduling conflicts, we chose to move the surgery to the 13th. This coming Tuesday. Please pray for our little family, as it will be one of the hardest things we will have to face. Mom and Dad are definitely having a hard time, knowing what lies ahead, and that we will have to hand our precious little one over to the capable hands of Dr. Iguidbashian and Dr. Axel. We love you all. I will be periodically updating facebook and the blog during the days to come and on surgery day. I appreciate all your love and support.