Movin on Up!

Today was awesome! X-rays have shown that Gabe's lung is beginning to look normal and his O2 is staying within normal range for him. They still deep suction him and are performing respiratory therapy to help expand the lung. But he sounds and looks so much better.

They have cut back on his pain meds so he is much more alert and although he doesn't smile or talk (babble), you can tell he feels a little better.

They took out all but one of his chest tubes, so his discomfort has diminished by about 75%. From the way it looks, the last one will come out sometime tomorrow probably. They took out his arterial line and now all he has is a periferal IV.

With him not being so uncomfortable and not hooked up to too much, I had the opportunity to hold him today. (Yeah!)

So all in all, things are going really well. Jeff and I are euphoric! Oh and lastly: We have graduated to the 6th floor. We are one step closer to going home. Thanks be to God!!!!!

So today was not a good day for little Gaby. With such a big procedure as his Glenn operation, there are usually set-backs. Well- we learned that firsthand today.

The morning started out at around 3 am. Gabe woke up crying and in a lot of pain. At the time they hadn't quite figured out the right amount of pain medication for him. If they give him too much, it affects his breathing and too little, well...it's pretty obvious...

In a reaction to the pain, he ended up throwing up. Which, only made his pain worsen. After giving him enough pain meds, and sedating him a little, he rested. They took an xray of his chest and found that he had begun collecting fluid around his right lung. (Not in his lung, like pneumonia- but between his lung and chest cavity) They increased a diuretic to get him to increase his urine output and hopefully excrete the fluid buildup.

At around 2 this afternoon, Gabe's oxygen saturation levels dropped dramatically. For those of you that don't know, Gabe's O2 levels are normally lower than yours or mine simply because he has a heart condition. A normal and healthy individual should have O2 sat levels at 100%. Gabe normally runs at about 80-88% on a good day. They dropped suddenly to a deadly level of 29%. He was very, very blue. They bagged him with an oxygen mask and deep suctioned his chest. (He has a lot of congestion from the ventilator but no strength to cough up the phlegm). Once stablized, they put a heavy cannula called a vapotherm on his nose and now it blows warm oxygen in through his nasal passages. They suspected a calapse. They performed another set of x-rays.

The x-ray results showed a definite partial left lung calapse. The fluid buildup in his right lung had cleared up but now it was showing two air pockets.
They corrected the air pockets by increasing the chest tube suction. And now they are trying to correct the calapse. The cause of the calapse is simple and common with Glenn Procedures. Gabe's inability to cough and breath adequately has prevented him from expanding the lung to its full potential. The Vapotherm is currently helping to expand the lung. They will perform a follow up xray later tonite.

They have him resting comfortably right now. They have found a balance with his pain meds that seems to be working for him.

Obviously, our moving to the 6th floor is on hold for the moment!


Please pray for my little guy... he is amazing!

Gabe is doing wonderfully! He was taken off the ventilator late this afternoon and has not had any problems! They moved us to another pod but still within the PCICU (Pediatric Cardiac ICU). He now has to share a nurse with another patient. Although it is very nice to have your own nurse, this is a step in a more positive direction. He is doing so well! He has opened his eyes and looked at us several times. He holds a tough grip and took an ounce of pedialyte. As long as he keeps it down, we will be able to give him a bottle of good stuff (milk) in a little while. They are telling us that he may be moved to the 6th floor tomorrow. (One step closer to home!)



I hope everyone is safe and warm at home this evening. From what I hear it's a bad night to be out on the roads!



God Bless!

First and foremost, thank you to everyone for your prayers. Gabe is stable and on his road to recovery. God listens and there is no doubt that your praying is helping my little miracle boy.

Gabe's status: Our little fighter is doing well. We had a big scare last night. There was a very large amount of blood draining from his chest tubes. They tried suctioning out the excess blood, but it did not stop. They had to reopen his insicion and find the source of the bleeding. They did find it and managed to stop it but he lost a significant amount of blood. Once they stopped the bleed, they gave him a transfusion and he looks a lot better this morning.

This morning he is doing good. They have his pain under control and are currently trying to lower the amount of morphine so that they can wean him from the ventilator. He should be ventilator free by late morning. His chest tubes are draining well and hopefully will be out by tomorrow at the latest. He wakes from time to time and can hear our voices. He is so strong! Superman-is what my sister, Christina calls him!

I will continue to update you with his progress. Thank you again for the prayers!

Sorry for the delay everyone! We are waiting to see Gabe. Everything went well as far as his Glenn procedure is concerned. They did find that he has two more defects that they were not initially aware of. 1. He has a double left ventricle (two of the same thing) and 2. Polyspleenia (more than one spleen). They have not confirmed the multiple spleens yet. He will have to have an ultrasound to confirm this. They say that the double ventricle and multiple spleens come hand in hand. However, this does not alter Gabe's prognosis. They expect him to do well.

I am anxious to see my baby boy!

Update #2

Everything is going good so far. They are starting the bypass machine. The nurse said he is a trooper!

MY APOLOGIES TO EVERYONE!!!! I know I have neglected this blog, but to be honest I have just enjoyed being a mommy to my beautiful babies so much that I keep forgetting to post anything. Gabe keeps us busy! He is such a little flirt and LOVES the ladies!!

As most of you know, Gabe is currently having his Glenn Procedure as I type this blog post. We just received an update from the OR. They had a complication with getting his arterial lines in. His little veins make it hard. But they are in and the surgeon is now with him. So now it's a waiting game until the next update.

Please, please if you haven't already, pray for my little boy and for the doctors taking care of him. I will post another update as soon as we get one.

Doctor's visits

Today Gabe and I spent most of the day at M.C. Children's Hospital for his follow up appointment with the surgeon and an ultrasound. Dr. Christian, his surgeon said everything looked great. His shunt sounds good, he looks good and his incision is healing good. All good! I like that! We do not have to go back to see her until the next surgery.

After that we stopped to see Gabe's nutritionist. He has been having a rough couple of days with his bottle intake. He seems to be having trouble swallowing. He gets choked and becomes very gassy and fussy. I believe it has to do with the volume of the new alimentum formula that I am using to supplement my milk. The nutritionist seems to agree and has lessened the amount of calories he is taking in at each feeding. I am to increase it slowly as tolerated until he is back to where he was prior to his milk allergy reaction. Regardless of this latest hiccup, he still continues grow. He now weighs in at 9 lbs and 6 oz!

And lastly, we went to diagnostics for the hip ultrasound. Thankfully, everything looks good. There is no sign of hip displaysia! I was so relieved! I didn't realize I was holding my breath until after I got the good news. My little guy has been through so much already, I am so happy he caught a break!

Getting Settled

Forgive me for not having written lately. Things have been a little crazy as we try to get situated here at home. It's not been difficult, just tiresome. The Lord has blessed Jeff and I with two wonderful and easy children. Jessie has adjusted to having a new brother fairly well. She has her moments from time to time about why this new kid is stealing some of her spotlight, but for the most part, she is doing very well. She worships her new "baby Gabe" and wants to be a part of everything to do with him. She really loves him so much. And the feeling is mutual with Gabe. Anytime Jess gets within his range of sight his little face lights up into the biggest grin. You can tell these two are bonded for life! Co-conspirators against Mommy and Daddy and their "rules"!

Gabe is gaining. He is so big! At his last Dr.'s apt on Monday, he weighed in at 9.02 lbs. He eats so well. I am still supplementing my breast milk with formula although our diet has changed severely since first arriving home.

Initially, Gabe seemed to be tolerating his feedings quite well, but slowly Jeff and I began to notice that he was getting fussy and was beginning to show signs of reflux. On Monday morning I noticed a large amount of blood in his stool. Also, he had three dirty diapers in less than 15 minutes. I called his pediatrician and the worked us in immediately. As it turns out he is allergic to milk. Not to be confused with lactose intolerance. These are two separate and completely different things. Gabe's milk allergy prohibits him from eating anything with dairy in it because he is allergic to the proteins found in milk. In order to continue breastfeeding, I can no longer have milk, ice cream, yogurt, CHEESE and much, much more. You would never guess how many products contain milk! Even some deli meat! It's a whole new world for me. They also changed Gabe's formula to Alimentum, which breaks down the proteins in milk to make it more tolerable for a baby with allergies. Needless to say, he's adapted better than I have! But so much more worth it! He is such a happy baby now. Poor guy, as if he hasn't been through enough as it is!

On Monday we also had a follow up with his cardiologist, Dr. Parra. They are pleased with Gabe's progress. He is doing very well. They noted that the shunt sounds terrific and there is no sound of interference in the blood flow running through it. A clot in the shunt could be very dangerous. We discussed his next surgery, the Glenn operation. As of now, it looks like this may be occurring in November. He will have a catheterization a week or two prior. This will require a night's stay in the hospital. Until then, he is to remain quarantined with minimal contact with the outside world. And until then, we will continue on with that surgery day looming over us. There are so many mixed feelings that come with that day. I dread everything about it. What my son will go through and endure. But at the same time, I look forward to Gabe getting the help he needs in order to come as close to a normal life as possible. The Lord is what is keeping us going through all of this. Please continue to pray for our son.

On the bright side, we do not have to see Dr. Parra again until November. Not that we don't like Dr. Parra. He is marvelous. We just don't like the circumstances that led us to him. One less Dr's apt. to deal with!

Here are some new pictures of the big guy. He is just so cute!!!


His first bath...if he looks a little mad, that is because he was!



Team "Jess-Gabe"

"What are you lookin at?"

Pediatrician Appointment

Today Gabe, my mother and I went to see Gabe and Jessie's pediatrician, Dr. Mehrotra. Gabe now weighs 8 lbs and 8 oz. He is doing so great! Dr. Mehrotra said Gabe looked good. There were no underlying concerns that he had. He was very happy with his progress.

As most of you know, our daughter Jessie was diagnosed with hip displaysia at birth. This is a genetic trait that was corrected with an aggressive treatment using leg braces. Thanks to the good Lord, this was all corrected before her first birthday without the need for surgery. Because this is a genetic trait, there is the possibility that Gabe could also have the same problem. (His chances decrease greatly since he is a second born and also a boy. Apparently it is prevalent in females more so than males.) So because of this, Dr. Mehrotra's office scheduled an appointment for an ultrasound for Gabe. This is set for the 23rd the same day that we follow up with his surgeon, Dr. Christian. We hope and pray that this is one less thing he has to go through. But if so, this is minor to what we are facing with his heart. The Lord will guide us through.

I am including a picture of Gabe in his little outfit today. He looked so cute! With a daughter and 5 nieces, I am so not accustomed to dressing little boys! I've also included a picture of my little helper. She is so proud of her little brother!

We are home!!

We were discharged last night. Gabe is such the fighter that he had to show those Doctors what was up! He is putting down 60ml's of milk every 3 hours with no problem! We have begun to fortify my breast milk with formula for added calories and he seems to be pleasing them all with his weight gain. He is up to 8 lbs and 5 oz. His body is tolerating the shunt well. His oxygen saturations seem to be a little high. They range between 80-90 (75-85 is normal for a heart baby). This means that his veins are expanded slightly and this allows a little more blood flow in/out of his lungs. Normally, you would worry if his body could handle that much blood flow, but the Dr's say that it is handling it well and everything looks good. They took out his feeding tube and we can finally see all of his handsome little face without the interference of tubes or machinery. He smiles so much now- mostly in his sleep but it is so sweet! I wonder what babies dream of? Freedom from tubes is my guess in his case!

So now that we are home, the Dr's appointments begin. Tomorrow we will go see his pediatrician for the first time. I will post an update after we get home.

The cardiologists, dietitians and nurses all gave me strict instructions on Gabe and being home. Fortunately, he only take a quarter of a baby aspirin and a multivitamin a day. I thought he would have to take more medications!

Another issue discussed was Jessie starting school and visitors. They said it would be OK for Jess to begin her preschool year next week but the teachers would have to be very careful with the amount of contact she may have with sick kids. She will have to be meticulous about hand washing and will have to bathe and change clothes when she gets home from school. If she gets sick, we will have to keep them separated at home and pray that neither Jeff nor I get it from her.

Visitation was brought up as well. The Doctors think it best if everyone wait until we get the go ahead for Gabe to be introduced to you all. He cannot get vaccinated for a few weeks and he needs to continue to grow and gain strength for his next surgery- which will come up within a few months. Getting sick would change everything. So, we are quarantined for the time being!

Jeff and I want to thank everyone for your continued support and prayers. We know that you all have had a hand in Gabe's quick recovery from his first surgery. It means so much to us that you all care. The Lord has blessed us incredibly.

We have been moved up!

Today, we were moved out of the PICU and up to the patient rooms on the 6th floor! This is the final resting spot before going home! Gabe is no longer on any lines. The pic line was removed this morning. He still has the IV port in his scalp, in case they need it. They checked the vein and it is still good, although possibly not for long. Of course, he still has his saturation and blood pressure monitor as well as his leads measuring his heart rate but none of those are invasive.

We did get some bad news today. We had thought that since he had eaten well yesterday, that he would have no problem gaining weight. Weight is a big issue with heart babies. It is important that they consume so many calories daily. Well, Gabe decided that he would not eat well today. He would latch onto the bottle for a few swallows but then make faces and quit eating. Because of this they put in a feeding tube tonight. Hopefully, temporarily. To me, it looks as if his throat is sore from the ventilator and it hurts to swallow. We hope that this will change before going home. They taught me how to insert the tube through his nose, but it still makes me very nervous. I really am hoping that this will not be something I need to worry about once we go home. Regardless of this, he now has a full belly and is sleeping peacefully in his crib right beside me. He is such a sweet little angel.

Gabe's Busy Day

My little guy is exhausted! He is sleeping so soundly. Let me tell you about his busy day! We were moved to another pod this morning. There was another more critical baby moved in that needed immediate surgery. Gabe is doing so well that they put him in a less critical area where he shares a nurse with another baby. (He had his own nurse all to himself earlier). Right after they moved him, they extubated him. Yes- you heard right, extubated!! As in "removed his breathing tube!!" I thought that was a rather large victory, but oh no...Gabe didn't. He couldn't just stop there. He improved so much that he even got his chest tube, central line and an IV out of his shoulder. So all that is tied to him is his blood pressure monitor and his pic line. (They did keep an IV port in his scalp, in case they needed it. Oh- but he didn't stop there! He also, proceeded to try some pedialyte to see if he could keep it down. And he did! So a couple of hours later, he got an ounce of milk in a bottle. He did fantastic with that and followed up the rest of the night with more feedings. He really is such a strong little boy. Thank you for your prayers, everyone! Keep 'em coming! And while we are all praying...please take a minute to pray for all of the sick children in the PICU. They are all in similar if not worse situations as Gabe. They need all the prayers they can get. Lets pray that they all get to go home and be with their families soon enough.

Below are some pictures of the little guy and some of his victories.

He's settled and stable!

My little munchkin was placed in his pod this afternoon at the PICU. He is very stable and very swollen. He didn't seem so bad initially, but as the evening progresses his little face and body gets fuller and fuller. They say it is only temporary. It is the body's reaction to what it's been through. He is doing incredibly well. (Told ya he was tough!) His vitals are fantastic and they are slowly weaning him from his breathing tube. There is minimal drainage from his chest tube and if it continues this way, then he may be rid of that soon enough as well. That is the worst- the chest tube. I can barely stand to look at it. It looks so uncomfortable.

Of course all of this fantastic news can always change in the blink of an eye so please continue to keep Gabe in your prayers. He is such a cutie!

Out of Surgery and in Recovery

Dr. Christian just came out. Gabe is doing great. He is stable and in recovery. He did really well. "No big surprises" (no little surprises, either- I asked). She said that he may have his ventilator removed tonight or tomorrow. We are now waiting for him to be moved to the PICU so that we can see him. It may be a while. The pod they had for him was given to another child that was critical. I will give you another update later. THANK YOU for your thoughts and PRAYERS. They were answered. Now lets pray for a good recovery and that he will be home soon!

First Update

The nurse just called. Gabe is stable and doing well. They had a problem getting his arterial lines in but everything is well now. They are in and Dr. Christian has completed the incision and is currently working on him. Keep him in your prayers.

Day of Surgery

Here we are in the waiting room waiting for our first update from the surgeon. After a futile attempt at sleep last night, Jeff and I were in Gabe's pod at 6 am this morning. They were running behind so they actually did not come for him until 8 am. We met with the anesthesiologists and they returned soon after to take him back. They allowed Jeff and I to walk with him up to the OR entry. They said we should get an update within an hour. So here we are...waiting.

Please, please if your reading this blog- pray for our little boy. He is so tiny and seems so fragile but yet he is the strongest person I have ever had the great fortune of loving. I would trade places with him in a heartbeat, but can't. Pray that the Lord guides him through all of this safely and that his guardian angel is right there holding his tiny hand.

I will post as soon as we hear from them.

Update for Tomorrow's Surgery

We were notified this afternoon that Gabe's surgery has been bumped up to 7 am. So he will now go first. Please, please pray for our little baby. We are terrified and nervous but ready to get on with it. I will keep the blog updated as they notify me during the surgery.

Here are some pictures I wanted to share

A close up. He sleeps with his mouth open like his sister!

Here is Jessie's gift from Gabe.. A KIT-TAR!!!

Jessie and her Big Sister shirt.

My little guy with his eyes open!

Update for yesterday and early today

Well yesterday started out pretty uneventful. Gabe had managed to stay stable for most all of the day. He is so sweet. When he gets upset, his little brow puckers and he looks like he could tear up something (wonder who he gets that from??) But he just tosses his head around and turns red. He cannot cry because of the breathing tube, so it looks so pitiful. I will really welcome the sound of his cry when I get to hear it again.

Jeff and I were able to hold him for several hours yesterday. The nurses are great here. They want to give us as many chances to hold him as possible before surgery. Jeff was really excited. He hasn't held him since the brief minutes after his birth. Here is a picture of the boys together.

His surgery is tentatively confirmed for tomorrow. He is a case 2, which means there is one surgery ahead of him, then he will go in. Of course, this is all subject to change, based on the status of the other heart babies awaiting surgery. We met the surgeon. Her name is Dr. Karla Christian. I have heard good things about her. I hope they are all true since my babies heart will be in her hands tomorrow. She explained the procedure. They will be placing the Blalock Taussig shunt via an incision into his right lower back. This means no open heart and no bypass machine!

We signed the consent forms, which was really hard to do. I think that may have been one of the hardest things I have ever done. I didn't want to upset Jeff but I think he saw through me. It's done, and I can't look back. He needs this surgery and we have no choice. But I know that the Lord will be with him every step of the way.

Last night was a little more eventful- to say the least. There was a funnel cloud over the Vanderbilt campus. The nurses all rushed to cover the incubators in the pods and put blankets over them. It was a little unnerving. Then right in the middle of the chaos, Gabe decided to have his oxygen sats drop. He was very fidgety and his color began to change. I started to panic! The alarms were going off and of course, the nurse was trying to protect babies from the impending tornado. She came to his rescue quickly and basically gave him a gas treatment and then suctioned his breathing tube out. He settled down and got his color back. His levels have been where they need to be ever since! This was so terrifying. It is a reminder of how vulnerable he is and how quickly things can change.

This morning all seems well with my little guy. Just counting down the day until surgery. Every minute I get more and more nervous. The staff here is fantastic. His nurses are wonderful. They are trying to get us a sleep room for tonight. There are rooms here with little twin beds for families that have critically ill children and live far away. Although Gabe is sick enough, our proximity to Nashville has not allowed us to have access to one of these rooms.

That just about covers it for now. I will post more information as we know it tonight and tomorrow during the surgery. Thanks again to everyone for your support and prayers. We would not be as strong if not for you and the Lord!