Heart Cath Results

The days leading up to Jack's heart cath were long. I was really nervous and started breaking out in hives. I've never done that before so I decided to go to the doctor. I went to After Hours and got a couple of shots and they put me on Prednisone. It has helped me keep it under control for the past week and I am going to see Tiffany's allergy specialist tomorrow morning to hopefully get a more permanent solution.


The night before was tricky. We couldn't give Jack any breast milk after 3am and we had to be there at 6. I was really worried about timing it out right so that he wouldn't be starving that morning. Needless to say we got no sleep that night between trying to work out the timing and stressing over the procedure. We we're up at 2:15 giving Jack his bottle and then I was in the shower by three. We had packed enough for one night just in case we had to stay but were hoping they'd let us go. We pulled out at 4:45 and Jack watched Spongebob on the IPAD in the car until he fell back asleep.


When we got there we were put into a regular room and started the wait. They told us that Dr. Law would be by in a little while to talk to us before they took him back. They brought in the tiniest little hospital gown for us to put on him and let me tell you.. Nobody can make a hospital gown look cute like my boy. :)

Dr. Law came by around 8 and talked us through what they would do. He said they would put him under with a mask and then start his IV. He wouldn't be back there long at all before he was put under which made me feel a little bit better. I didn't want him to feel scared when we weren't back there with him. Then after they were ready he would go in through a tiny incision in his groin and then go into his heart where they would measure pressures and take pictures. He explained the risks but let us know that Jack was in a low risk category and he felt certain that it would be an easy procedure. He said he would call the phone in the room when they were done to let us know how it went. It should take him about three hours once anesthesia was done with their part.


After that Josh and I walked with the nurses down to the floor that he would be on and we walked him to the door of the OR. We kissed him a thousand times and then a few times more before I handed him to a very sweet nurse in brown scrubs. She promised to take good care of him. We watched until the rounded the corner and then I cried all the way back up to our room while people looked at me and wondered what was wrong with the crazy sobbing lady. Haha


When we got back we just had to settle in for a few hours of nervous waiting. I hated the thought that he was down there without me but I knew he was in good hands and was sound asleep. It was also really comforting to have a lot of family around to talk to and joke with. It make time pass really quickly. After about 3 and a half hours the phone rang.


Dr. Law told me that the procedure went well. He said Jack did fine and was resting now and we could see him soon. He said they had one episode during the procedure where his heart rate went up for about 15 minutes but then it balanced back out on its own. Other than that it all went well and there was no damage done to his veins. He told me that he had to make some rounds and would come by our room later that day to give us the details.


Then Josh and I got to go meet Jack in recovery. We practically ran. When we got there he was in his tiny little bed still hooked up to monitors. They had removed the tape from his face but the sticky residue still marked his sweet cheeks. He was still so out of it that he couldn't keep his little eyes open. He tried so hard to open them and look at us but they would just roll back into his little head. We kissed all over him and petted him while we waited for his recovery time to be over. When that time had passed we walked next to his little bed while they rolled him back to his room where our family anxiously waited for him to round the corner. They were so happy to see him and he was finally starting to come around more and open his eyes good.

When we got settled back in the nurse said I could try to feed him. The poor baby hadn't eaten in so long. We got wrapped up in blankets and settled into a chair and he went to town on his bottle. Over half way through his 5 ounces he started throwing it all back up. It wast he most he had ever thrown up at one time and it scared me and him both. We got him sat up and he got it all out and then we wrapped him in some different blankets and let him settle in for a nap in the MaMaRoo swing that they had brought in for us to use.


His little leg was still hurting from his incision plus he was really sick from the anesthesia so he didn't sleep well at all that day. He would roll around and moan like he was hurting and sick. It was so hard as a mommy to know he wasn't feeling good and I couldn't do anything about it. As far as that goes it was a really long day and an even longer night. We had to spend the night because his reaction to the anesthesia was rare for a baby and the doctors and nurses didn't really seem to know what to do for him. We just basically had to wait it out. We tried over and over to feed him, first breast milk and then Peidalyte and he just couldn't keep anything down. He eventually emptied his tummy out and started to dry heave. That was just pitiful. We finally convinced them to start a new IV and start getting some fluids into him. We were really worried.


When he got his IV for the procedure they had stuck him 16 times. There were bruises and stick marks all over my poor baby's body. We were outraged to tell you the truth. They had even stuck him in his sweet head. We just felt that was completely unnecessary. When it was time to stick him again you can bet Josh and I were going to be in there. Even if they made it clear that they didn't like that. They took him to a different room and three nurses worked to find a good spot. Thankfully, they got a good one on the first try in his little hand and they wrapped it well so that it wouldn't get messed up like the last one had. He had been through enough. This needed to be his last stick for the day.


When we got back to the room Dr. Law was waiting there for us. He explained exactly what he had found in the cath and the steps we would take from there. Here's what he told us.


He talked a little bit about his VSD which we already knew he had but he also told us about some narrowing at his ASD which will need to be made bigger. There is also some narrowing at his Pulmonary Valve which restricts some blood flow to his lungs. The pressures there are not dangerously elevated but are a little bit on the higher side and they will need to be mindful of that when doing his surgery. His VSD is a little bit on the small side and causes some pressure drop which again is something they needed to know about when moving forward.


Dr. Law then said that he has decided to move forward with his surgery in the next month. There is also a little bit more surgery in addition to the Glenn that will need to be done at the same time. One thing that will need to be done is an atrial septectomy which will make that hole (ASD) bigger. Also a Damus-Kaye-Stansel procedure which will bring the pulmonary artery over to the aorta. This allows the blood to go out both pathways so that the pressure in the ventricle is not higher than the pressure outside of it. They will also do the Glenn at the same time.


He feels that Jack has grown really well and is a nice size for this procedure and he feels that the benefits of going ahead with the procedure far outweigh the added risks. Basically, its time and we're going for it.


He said we should be made aware of a couple of things going into the surgery. Many times when they do the Glenn there will be an improvement in the saturation. But Jack's saturation is already good so there will be an improvement in his blood flow but ultimately we might not see much change in his saturations. He said they might even be lower after surgery because of all of the changes his heart will go through but there will be a nice physiological improvement for his heart for the long term. Which is really where it counts anyway.


We are still looking to do the Fontan procedure at around 2-3 years of age. So after this procedure next month his long term plan is still the same. The only changes in his overall plan are the additions he has added to the Glenn surgery. After that we'll continue on our original course of action.


He did add that Jack's heart function is really good and the valves work really well. He said that his function is fine and the problem he has is with the plumbing. He said overall he thinks everything still looks favorable and he has a really positive outlook on how everything is going to go.


From there we discussed surgeons and scheduling. He has a surgeon that he has chosen and scheduling will call us within the next couple of weeks to hammer out a specific date.


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After a long night for our sweet boy, he finally started taking small amounts of breast milk the next morning and by that afternoon had successfully kept down four ounces. We finally got discharged at around 2:30 and came home. It still has taken a couple of days for him to bounce back but he thankfully woke up happy this morning and has had a great day. He has also gone back to his regular 4-5 ounces today which was a big relief for us. There is just SO much comfort in being at home with our boy. When we're at home it doesn't feel like there is anything to be afraid of.


Now we just have a month of anxious waiting ahead of us. Josh and I have decided to focus on our spiritual preparation. There is no amount of emotional or physical preparation that we can undergo that will ever render us ready to hand our son over to surgeons in a months time. We have decided to spend this month in the Word and in prayer because God is the only preparation that we truly need. We are praying for His hand on our sweet boy. That he will guide the hands of the surgeons, doctors, and nurses that work on Jack. That He will provide complete healing in our son and allow this surgery to be the means by which that healing comes. We know He has a purpose for this and we intend to be used to the greatest extent that we can be.


We are also praying for God's comfort and peace to be upon us during this time. As we find out more information about the surgery we grow more nervous and anxious. We are praying that God will just be with us and allow us to get through this with as much strength as possible. We know that God's plan is moving right now and we are just doing our best to have faith and trust in His plan. He is our Lord and we trust Him.


Ephesians 3:20-21 "Now to Him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen."


Our God is able to do immeasurably more than anything I can ask him to do or imagine he could do for me or for Jack. He will provide healing and peace for my son and my family. I am standing on the Word of my sweet savior. Please stand and pray with me. <3

Easter and a Heart Cath

Tomorrow is Baby Jack's three months birthday! Happy birthday Baby Jack! <3

Thinking back to just three short months ago...I was getting ready to become a mommy. I had no idea what God had in store for me. The next day would be the happiest and scariest day of my life. Since that day my life has changed so much. My whole little world shifted on its axis the day my Jack came into my life. I've never been more thankful than I am right now for the blessings of my God. Just look at that sweet little face. Every little thing he does is magic.<3

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This weekend we spent our first holiday with our precious boy. And what more wonderful holiday is there to celebrate with our sweet son than the resurrection of our Lord and Savior, Jesus Christ. We will spend our lives and dedicate our mission as parents to teaching our son the magnitude of what God did for us when he sent his son to die on OUR cross. We are literally eternally grateful for his sacrifice. Thank you Lord.

Jack had a great time at his first family get-togethers. He got to meet new aunts, uncles, and cousins. He got to hunt Easter eggs and even went to church for the first time with his mom and dad. Everyone was so glad to see him. It was a great weekend.

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Now that Easter is over, its time to start focusing on Jack's heart catheteriation that is going to take place next Wednesday, April 18th. We got the call today with all of the information that we need and now we're in major prayer mode. We're praying for a BIG miracle that day.

Josh and I will take Jack in to be admitted into UAB at 6am. We'll get a private room where we'll then go and wait for them to get ready for him. He's the youngest, so he's the first patient of the day. They'll let me and Josh walk him to the door of the cardiac unit, then we'll give him LOTS of hugs and kisses and say one more prayer for him, then we'll have to go back to his room for the hard part. The waiting.

Jack will be put under with general anesthesia. They'll then give him an IV and then put him on the ventilator. They'll go in through his groin and up the vein. Once they're in his heart they'll just measure pressures and take some pictures. They said it could take up to four hours depending on how difficult it is to maneuver though his small veins. Once they are done, Dr. Law (the cardiologist) will call me and Josh and let us know how it went. They'll take him off the ventilator and get him breathing good on his own again and then he'll go into recovery where Josh and I will meet him. At which point I will scoop him up and love him to pieces. <3 We'll be in recovery for around an hour and then we'll go back to his regular room for at least six hours and possibly the night.

That's the plan. We're praying that everything will go as smoothly as possibly and that it will be quick and easy for him and for us. The nurse who called me today said that it will be much harder on us than it will be on him. She said the incision is tiny and shouldn't be too sore. And they're going to wait until he's under to do his IV so he won't be in pain when mommy's not there to hold his hand.

Please pray with us. This is his first really invasive procedure. It's his first time to be put to sleep. His first incision. His first time to be on the ventiltor. His first time to be away from mommy when they're poking at him. It's very scary for me and Josh. We just pray that God will hold him in His almighty hands. Bring him comfort if he gets scared or upset. Be with the doctors and nurses while they do their work. Let this procedure go as smoothly as possible. Allow for a quick and easy recovery. And most importantly, AMAZING results.

We are trusting our God 100% for the results that we want to hear. We know that He has an amazing plan for Jack's life and we are believing in His will. He has brouht us this far and given us miracle after miracle with our sweet boy. How could we not trust Him?

Ephesians 3:20  Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within.

Our God is MORE than able to do MORE than we could ever ask or imagine. Miracles ARE possible.

Jack's Diagnosis

The first night was hard. Jack had been transferred to UAB and I was still at St. Vincent's. That night they told us that they would do some tests in the morning and then we would know more. I can't begin to describe what it felt like to be separated from him and Josh in that scary time. It was only by the grace of God that I made it through.


The next day it seemed like a lifetime passed before we finally heard from the doctor. I stayed in constant contact with Josh that morning. I sat helpless, feeling a million miles away in my hospital bed waiting...and praying.


Finally after 1:00 in the afternoon, the cardiologist, Dr. Law came in to talk to Josh and the rest of our family.


I texted Josh during that time and he told me that the doctor was in there explaining everything to them and he would call me as soon as the doctor left.


I told my mom and my sister who were in my room with me and we prayed together. I spent the remainder of that time praying and speaking scripture. I was terrified but doing my best to put my faith in God and trust that good news was coming. It seemed like years passed before Josh called. When the phone finally rang, I thought that my heart was going to leap out of my chest. It was one of the most serious moments of my life.


Josh explained to me what Dr. Law had just explained to him. At the time it was a lot of information and it was confusing and scary. Since then I have had plenty of time to study Jack's condition and fell comfortable with the terminology.


Here is everything Dr. Law explained to Josh and our family that day. It's precise in detail because they videoed him speaking and I wrote it all down straight from the video. It's complicated but pretty much explains it all in good detail. Here it is.


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Jack's heart is built different from a normal heart. First of all, there is no way for blood to go from the left atrium to the left ventricle because the valve that separates the two chambers didn't form. This is called Mitral Atresia. So, in Jack's heart, blood is having to take a longer route to get from the lungs back into the heart and back out into the body. Also when this blood is coming back into the heart it can go one of two places. It can go across the pulmonary valve or into the aorta because there is a hole between the bottom chambers of the heart  (the right ventricle and the left ventricle.) This is called a Ventricular Septal Defect or VSD.


They are not able to make Jack's heart into a normal heart, but they have ways to treat his heart as it is. They will have to re-route the blood flow as time goes by. This is because the left ventricle is too small and also because the valve that separates the left atrium and left ventricle didn't form.


At the time, Jack was on a medicine called prostaglandins which was being administered through an IV. This medicine was keeping his Patent Ductus Arteriosus or PDA open. All babies are born with their PDA open which allows blood to flow between the pulmonary valve and the aorta. In normal babies, the PDA closes within the first few days of life. They needed to keep that open in Jack's heart for now with the prostaglandins. This was ensuring that there was enough blood flow going to his lungs.


At this time, the first question that needed to be answered was wether or not Jack needed the PDA to remain open. If the PDA closed and he was still getting a sufficient amount of blood flow to the lungs then he didn't really need it to remain open. Even in Jack's heart, blood could get out into the lungs from the heart, however, his pulmonary valve was a little bit smaller and had a narrowing at the opening (called Pulmonary Stenosis) which would make it more difficult for blood to flow through, leaving his cardiologist to wonder if the amount of blood that could flow through there would be enough. The question he didn't know the answer to at that time was if it was too small or too narrow and he couldn't tell that while the PDA was still open.


So, what he recommended was that the RNICU doctors turn off the prostaglandins at 6am the next morning. The reason why he wanted to wait until the next day was that sometimes turning off the medicine could create an emergent situation (like if they turn it off and Jack's body wasn't getting enough blood to his lungs on his own.) In that case, those doctors would have to decide what to do. The RNICU doctors were not cardiologists, nor did they know Jack's case particularly well. So, Dr. Law, Jack's cardiologist, wanted to wait until the morning when he would be there in case they needed him. It was just safer and easier for everyone that way.


They needed to take this step (turning off the prostaglandins and allowing the PDA to close) so that they could see if there was enough blood flow to the lungs without the medicine because Jack couldn't stay in the RNICU forever on the medicine. They had to figure out how to ensure that he was getting enough blood flow. They would turn it off and see how his oxygen saturation looked over the next few days as the PDA closed. An acceptable oxygen saturation was usually in the 80s.


If they turn off the prostaglandins and allow the PDA to close and there is enough blood flow to the lungs to keep his oxygen levels in the 80s on his own without the PDA then he would get to go home. We would follow up closely with the cardiologist in the pediatric cardiology clinic at UAB over the next few months. If they allow the PDA to close and his oxygen levels begin to drop, he would require a surgery to fix that problem before we could leave the hospital with him.


This surgery, called the Norwood Procedure, would consist of placing a shunt in his heart to allow a sufficient amount of blood to flow to the lungs. Basically they would replace the PDA with another tube that connected blood flow from the pulmonary artery to the aorta.


Either way, wether he needed the first surgery or not, Jack would be sent home to grow over the next few months. Then in a few months(3-6 months) he would need the next surgery.


If he didn't have to have the first procedure, then he would have a heart cath before the second and third surgeries in the series. The cath would tell the doctors if the pressure or resistance in the lung arteries is high, if it is high then the second surgery will not work. Dr. Law said that he didn't feel like that would be a problem but they have to check anyway.


The next surgery in the series is called a Bidirectional Glenn. Jack would be put on pulmonary bypass for this procedure. This surgery would connect the blood that comes into the heart from the head and arms (blood from the superior vena cava) into the pulmonary artery (lung artery). This allows the blue blood that comes from the head and arms to go into and back out of the lungs.


After this surgery, Jack would be sent home to grow again. The only issue now is that there is still some blue blood going out to the rest of his body and his oxygen levels still wouldn't be normal. So after he has had a few years to grow they would perform a final procedure called the Fontan procedure.


There isn't a specific time frame for the Fontan procedure. They usually perform it at around 2-5 years of age. Dr. Law said that we (Jack's parents) would be the ones who would dictate when Jack's surgery would be based on his endurance levels and coloring. He said once Jack starts running and playing as he gets bigger, he would begin to lose endurance and start to lose some of the pinking in his color. (i.e. he would turn blue and lose his breath easily.) When that starts to happen to him, wether he is 2 or 5, that will be the time when he needs the surgery. Even if it doesn't happen to him within those years, they wouldn't allow him to go past the age of 5 because they think its good to get the surgeries over with while they are young enough that they don't remember them when they are older.


In the Fontan procedure they would take the blood that comes from the lower part of the body and routes it into the lung artery. (This would connect the inferior vena cava to the pulmonary artery.) Then after these surgeries his oxygen levels would be normal.


There wouldn't be any more necessary surgeries or interventions required. He will require lifelong cardiology follow-up and will be watched closely throughout his life in the cardiology clinic. He will go onto live his life but will be challenged in areas of stamina and endurance. Dr. Law joked that Jack probably won't be a star athlete but neither was he and he turned out just fine.


To sum it all up, Jack has a condition called Single Ventricle, sometimes referred to as Hypo-Plastic Left Heart Syndrome. Mitral Atresia, VSD, and Pulmonary Stenosis are all covered under that main term of Single Ventricle. 


Dr. Law said that many children go through these procedures and do really well after the surgeries. He can't guarantee that Jack won't need a heart transplant one day but he wants to just focus on what is immediately in front of us right now. He said there is no way to know what he will need in 20-30 years but for now he thinks that Jack will do well with these procedures. He said that Jack is going to have to go through a lot and every step has risks, but he thinks Jack is in a low-risk category for most everything at this point in time.


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To make a long story a little bit longer...


The next morning at 6am I was up, showered and ready to go. I was closely monitoring what was going on with Jack via texting with Josh while I waited for my doctor to come by and sign my discharge papers. I was on pins and needles waiting to get out of that place. When she finally came by, she gave me a quick once-over and set me free. We got to UAB in one minute flat.


My mom and sister dropped me off at the door where Josh was waiting with a wheelchair and they went to find a pharmacy to fill my prescriptions. We couldn't get up to the RNICU fast enough. I was dying to see my baby again. It had been two long days and a lot of tears since I handed him to that nurse.


When I finally got to him, my heart melted. He was sleeping so sweetly, all bundled up on a tiny little NICU bed. I burst into tears. Josh held me as I cried and let out every emotion that I had been feeling for two days. The nurse came in and wrapped up all of his little cords and finally handed him to me. It was the most glorious moment. I was finally holding my sweet boy again, something that, for a time, I was scared I might never get to do again. Tears streamed down my face as I held him and started into his sweet little face. My boy. Mommy's boy.


Later that day Dr. Law, the cardiologist, came by to see me and ask if I had any questions. Of course I had hundreds but none that I was emotionally ready to face. That day I just wanted to hold my boy and forget that his heart was sick. I held him in that chair all day long. I finally got the chance to feed him for the first time. I won't go into detail about how a male nurse helped me and my husband learn to breast feed our son for the first time. Awkward.


Throughout that day, the nurses came in to check on us and I got acquainted with my new hospital home. The RNICU at UAB is amazing. Every baby has their own little private room with a chair and a couch. Josh and I never had to leave his side for the remainder of our stay. I am eternally grateful for that and for the sweet demeanor of the nursing staff that worked with us that week. They loved Jack too and were rooting for him with us. I'll never forget them.


Over the next few days we watched Jack's monitor like there was an award winning movie playing on that screen. Every time he moved it beeped and every time it beeped I panicked and every time I panicked I called for a nurse and every time a nurse came they had to reassure me that he was fine. It was a never ending cycle of me making sure those poor nurses were having to work for their pay. They probably weren't too sad to see us go. Haha


The good amazing news was that Jack's oxygen saturation level never dropped. It stayed in the high 70s to low 80s the remainder of the week. And after 6 long days in the RNICU, they told us we were going to get to go home. Jack didn't need the first surgery. He was doing just fine on his own. When the doctor came in the morning of the 17th to tell us that Jack's ECHO showed that his PDA was completely closed and he was maintaining enough blood flow on his own to keep his oxygen levels up, I cried like a baby. It was another one of those wonderful moments that God allowed us to truly see Him working in Jack's little body. He had worked another miracle and we were overwhelmed with joy that we were going to get to take him home that day.


Now, I'll have you know that since then I have done quite a lot of research and have yet to find one serious case of HLHS where they child didn't need the first surgery. That's good amazing news too, wouldn't you say?


Later that day, after waiting about 8 hours for one shot that Jack had to have, we were finally discharged. We packed up everything we had brought and our families had brought to us, which basically looked like we were moving, and we dressed Jack in his sweet little going home outfit. They finally removed all of his cords and wires and he was completely free for the first time in his little life. The nurse made me get back into a wheelchair even though I had been walking around there for nearly a week just fine, then she handed me my baby and wheeled me out to the car. We loaded our little bundle of joy into his car seat for the first time, and then we took him home.


There are many stories I could share with you about our week in the RNICU. Some amazing moments of joy, some moments of fear and even terror, and some moments where we truly felt the peace of God settle in the room with us. I'm sure that as time passes, I will come back to that week and share some of those moments with you in this blog. For now, its just important for you to know that we experienced our first real victory that week. God allowed Jack's body to perform a miraculous task which he is still performing right now. He is breathing on his own thanks to an adequate supply of blood flow to his lungs. Something that his doctor wasn't sure he would be able to do because of several heart defects that he was born with.


Today Jack is thriving and surprising his cardiologist every time we visit him in clinic. He is not only breathing well on his own but is eating and gaining weight. This is another true miracle. Praise God.


God has done so much for my sweet boy in just his short two and a half months of life. That first week was the beginning of an amazing show of God's power. God is still a miracle worker and if you ever doubt that, just look at my sweet son. If it weren't for a nurse telling me that Jack was going to weigh over a pound more than he actually weighed I wouldn't have chosen to have a C-section. If I hadn't had a C-section Jack could have died during child birth because his little heart wouldn't have been able to take the stress. Then also if it weren't for a nurse noticing his trouble breathing and then another nurse hearing his heart murmur while in the same room, they might not have found his heart problems and he would have died within a few days without much explanation. This is the absolute show of God's miracle working power. I'm not sure what God's plan is for Jack but I know He has a BIG one. I am certain that Jack is going to grow into a strong man of God and is going to do great things for the kingdom of God.

Now to him who is able to do immeasurably more than all we 


ask or imagine, according to his power that is at work within


us.  Ephesians 3:20