Time Marches On: Two Months Post-Op

It's been a while since my last post and I know you're all probably wondering where we've been and how Jack's doing at home. In our case... No news is definitely good news. We've had a really calm few weeks. I can't even believe that in three days it will be two months since surgery. Time marches on. 


Jack has finally reached the point of full recovery. His scar healed up so much better than I could have imagined. I really love it. Its his badge of war and he will wear it proudly. On June 21, we had a visit to clinic and Jack's cardiologist told us that we could come off of oxygen. He had us continue to monitor Jack's sats from home and he did great. Sats didn't change at all. That was a BIG day for us. We celebrated with quite a few tears...mostly mine. At the six week mark we started being able to pick him up under his arms again which was kind of the last milestone we were trying to reach. We were extra cautious at first but now he's back to being thrown into the air like every other little boy. It makes him giggle which makes my heart smile. He's back up to six ounces of breast milk. He's actually eating so much that I can hardly keep up. But this heart mommy knows that this is not a bad problem to have. He is all smiles and giggles these days. He loves his feet so much and he can almost sit up by himself. He reaches for everything and chews on anything he can get into his little mouth. His two teeth are adorable and he drools and chews enough to make me believe that we might see a few more teeth pretty soon. He has absolutely no developmental delays. For the most part, he's just normal perfect. 




We went to clinic yesterday where Jack had an ECHO and then we talked with his cardiologist. He told us that Jack's heart looks "pristine" which was beyond amazing to hear. He told us that right now we are going to focus on getting Jack off of two of his meds. We will be going down on his doses each week and we'll continue to monitor his saturations with the pulse ox we have here at home. We don't go back to clinic for TWO WHOLE MONTHS which will be by far the longest we've been without a visit to UAB or an ECHO. We could not have had a better report and we are SO thankful that God has seen fit to provide complete healing for our sweet boy. 

We will visit Jack's pediatrician this coming Tuesday for his six month check up and shots. We will also be working with him on getting Jack started on cereal and baby food soon. He wanted us to wait on this step with Jack because he needed as much BM as possible right now because his immune system took a major hit when he got sick in the hospital and then had to be on so many antibiotics. I've been having a really hard time keeping up with him lately though and have had to borrow from my frozen supply. Thank goodness I saved up a stock pile a while back when he wasn't taking as much as I was producing. I am running out now though and we need to start talking about adding in some cereal and then baby food so that he won't need as much BM. Formula is still not an option for me and I truly hope we never have to do formula. I have absolutely nothing against formula. Its just that we tried adding some formula to his bottles a few weeks ago when our supply and demand problem began and it made him very sick. It was awful and I don't want to have to do that again. Plus I know that with him having a less-than-perfect immune system, its just better for him to continue to get all of the nutrients and vitamins that he gets from BM. Please pray for him though as we begin to attempt this transition because we have tried a bit of cereal a few times and it made him sick. I know it takes some getting used to with all babies and I'm sure we'll get there eventually. 


Two days ago we celebrated Jack's six month birthday. I can NOT believe that six months has already passed since the day that I held my sweet boy for the first time. This past six months have been the most amazing and most challenging months of my life. I have learned more about myself, my marriage, my family, my community, and my God than I have in my entire life. And let me tell you friends, they are all GOOD. There were moments during each different hospital stay, from the time spent in the RNICU when Jack was born to the time spent in the CICU after surgery where I felt like time was standing still. I longed for the day when I could look over at my son and know that surgery was passed and he was ok. To see him playing and laughing. To not look at him in fear of what was ahead. I told my sister today that for Jack's whole short little life so far, there hasn't been a day that has passed that I didn't carry the weight of the fear of losing him to this disease. My fear was crippling and overwhelming. But today I can truly say that I am not afraid. We are finally passed the hardest step. Yes, Jack still has one more surgery to go and I know that it will be every bit as difficult for us to face when the time comes. But I am choosing not to focus on that right now. I am going to live in this moment and celebrate what God has done, knowing that He will certainly do it again next time around. Because I know in my heart that God's plan for Jack goes far beyond a few short months or years. His plan for Jack is bigger than defeating heart disease, and I have vowed to do my part to raise him to be the extraordinary person that he was created to be so that God can continue to use his life in an extraordinary way for many, many wonderful years to come.


  I'm so thankful for every single prayer that has been laid before the feet of our almighty God on behalf of my precious son and my little family. My heart is overwhelmed at the amount of grace that has been poured out over my life and the lives of my husband and son. God is so merciful and so good. His love is overwhelming and unfathomable. I pray that He receives every ounce of glory that comes from our story. And when you say your prayers tonight, you thank him for us too. Thank him for saving our boy. Thank him for saving us all. 

 ^"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

Welcome Home Baby Jack

After twenty-four long days and nights in the hospital, we finally got the news we'd been waiting for. On Thursday, our nurse practitioner told us that if everything went well over night, we could probably go home in the morning.


        After we figured out that Jack was still withdrawing and that was why he seemed to feel so bad all the time, they went back up on his Ativan and kept his Methadone the same. They decided that it would be best to ween him slower, even if that meant sending him home on both drugs. We asked a lot of questions about each of the meds and their affect on him, especially long term, and they explained everything to us and made us feel better about it. He has been on a tiny dose of each drug since we left the hospital and has been weening slowly. Both of these drugs, especially the Ativan just make Jack super chill and not really himself. We didn't really like that he was on either drug but it was certainly better than seeing him as sick and miserable as he was when he was withdrawing. The pharmacy at the hospital set up the prescriptions for us so that each syringe was already filled with the correct dosage so that there wouldn't be any risk of us giving him too much. As the week went by, he went from .3 to .2 to .1, so each different dosage was in a different plastic baggy that was appropriately labeled and our nurse practitioner made a calendar so that we would know exactly when to give what dosage. If you know me well at all, then you should know how much I can truly appreciate that kind of organization. Haha He is now completely off of both of the drugs. He was still withdrawing all the way up until a couple of days ago but it seems like that is almost completely over with now. Thank goodness. 
      They also sent us home on four other medications. He is on one for his tummy, one for his high blood pressure, one for his fluid output, and one for the pressure in his lungs. All six of these medications, some of them being given two or three times throughout the day, leave us with 15 different dosages of medication throughout each day. Six of them are given at one time in the morning when Jack first wakes up. They're all oral and he HATES them all. It is a serious battle to get all of these meds into him every single time. Sometimes he screams, kicks, and spits it all back out. Other times he is a real trooper. We've tried mixing them with milk.. which he then refuses to drink. We've tried pretty much any trick you can think of and nothing really works. It will be a battle until they tell us we can stop with the meds. We really hate having to give him the meds because of how upset he gets but we just remind ourselves that he needs it and it won't be forever.
       They also sent us home on oxygen. They told us that we would have one unit for when we were at home and then something portable for when we go to our doctor appointments and clinic visits. So, Friday morning before we were discharged from the hospital the guy from the med supply company came in hauling this massive amount of equipment that was all for us. He had to teach us how to use everything and it was a big lesson. Not too complicated but there are a lot of parts and a lot to remember. It consists of one massive home unit that will sit in a general location with 50ft of tubing that could pretty much reach anywhere in our house. Then we have 4 large sized tanks for when we're out of the house. Jack is really great about the nasal cannula being on his face. We use medical tape to keep it on his face and try not to change it but every few days because he hates to have the tape pulled off. Most of the time he doesn't notice it. Every now and then we will look over at him and he will have pulled it down into his mouth. Silly boy. :)
         Last Tuesday we had Jack's post-op visit with his pediatrician, Dr. Farr. Going out with the portable oxygen tank wasn't too bad. It's on wheels and is kind of hard to steer, especially combined with the stroller. It definitely takes a team. Luckily, my mom and aunt both got to go with me so I had plenty of help. Dr. Farr said that Jack's lungs sounded great which was the main concern after all of the issues we had post-op. He said that everything looked great and the only concern he had was Jack's weight. When we were admitted to the hospital Jack weighed 15 pounds and 7 ounces. When they weighed him on Tuesday he only weighed 14 pounds and 13 ounces. That was exactly what he had weighed 5 weeks earlier at his 4 month check-up. Dr. Farr said that it is imperative that Jack continue to gain weight steadily as he had up until surgery and stay in the average to above average range. He said that weight loss was to be expected after such a rocky hospital stay but that now we have to try to bump him back up to a good weight for his age pretty quickly. So he told me to start adding a teaspoon and a half of calorie adding formula to his milk. When we were in the hospital the lactation specialist spun my milk and figured out that it has 25 calories which is more than formula so that was good news but he hasn't been able to get back to the amount of ounces he was taking before surgery yet which has contributed to the weight loss. Before surgery he was taking 6 ounces every 3-5 hours. After surgery he didn't take any milk at all for 5 days, then he was started back up really slowly and he eventually got to 35CCs an hour which is what he got for the remainder of his stay excluding the time period where we tried to bottle feed him and he threw it all up. The 35CCS an hour was going in through his TP tube and that allowed him to receive a steady amount of nutrition. But, before we could leave the hospital he had to start drinking from his bottle again. We started slowly and reached 2 ounces every 3-5 hours before we left. Now, two weeks later, we are back up to around 5 ounces. He's doing good moving up. It just takes time for his little tummy to readjust after all the trauma its been through.
           Other than all of those big things, Jack is doing great at home and is flourishing in his regular environment. He has been struggling with his sleeping because of the withdrawals but is finally starting to sleep a little better. He is playing and laughing all the time and is really getting his little personality back. His days consist of watching cartoons and cuddling with Mommy, playing, eating, napping, and then playing with his Daddy when he gets home from work. His nights consist of a mixture of sleeping and keeping Mommy up...but he's totally worth it. ;)

<3-------------------------------------------------------<3

           
           I can't even begin to express how much God has blessed us through this experience. It's not at all what we asked for....but we've learned SO much along the way. We are SO thankful to be home and to begin the process of putting it behind us and settling back into our normal lives with our sweet boy. His life is even more precious to us now that we have faced the fear of the unknown. We truly see our five month old son as a warrior and he is braver than either of us could ever dream of being. I know in my heart that God allowed this to happen for a very specific reason. Though I can't see it now, I know that someday when I am looking at my son as a grown-up who is an extraordinary man of God, I'll be able to see exactly what God was doing when we were walking through this storm. I believe that whatever God's plan is for Jack, its something big and that he will walk through this life with more purpose than most people do.
            Most people say that they can't imagine what we have been though this past month. That's true. I couldn't have imagined it even a short month ago. It's been hard. More difficult than I could ever describe in words. But it made the three of us warriors, I believe. We are stronger and braver today than we were last month. We are forever changed. I am a different person than I was a month ago. I look at my son with determination. We can conquer anything. Though it's not because of any extraordinary power that comes from within ourselves. We are merely people. I can say with full certainty that if it weren't for God's power in my life, this month would have broken me. As a mother, I don't know if I would have survived the pain and frustration of all that the month brought. I don't know how any mother could. Not without God. Not without His grace. But His grace is sufficient. It was sufficient for me this month. It was sufficient for my little family. It brought us through. It saw us through our darkest hour. We didn't just merely survive. We thrived because God's precious grace lifted us up to soar on wings like eagles. (Isaiah 40:31) That's what God's grace does.
           I pray that my life has been and will continue to be a living sacrifice to the true and holy God. It's not what I asked for. If He chose to give me what I'd asked for I would be no more than ordinary. I wouldn't be used. I would blend into the background of the world. But God saw fit to use me and my family and no matter the circumstances, I can truly be thankful and give him glory and praise for that. Today, one month later, I am thankful that sometimes God doesn't give us a choice. Sometimes He allows things to happen when He wants to use us that we would naturally choose not to go through. If God asked me today, I would say no. I'm a mother and I would never choose for my son to hurt or to be sick. But I'm thankful for the victory that God has won. And you know whats amazing? He knew what was going to happen all along. He knew, even in our darkest hour, even when my tears were falling and I was begging him on my knees, he knew even then that I would sit here one month later and write to my friends and brothers and sisters in Christ that Jack is home and all is well. He won the victory a LONG time ago. What a MIGHTY God we serve.

           
"For I know the plans I have for you," declares the Lord. "Plans to prosper you and not harm you. Plans to give you hope and a future."  Jeremiah 29:11




But those who put their hope in the Lord will renew their strength. They will soar on wings like eagles. They will run and not grow weary. They will walk and not be faint.   Isaiah 40:31

Post-Op Day 21: Three Weeks Later

Three weeks later...


Post-Op Day Twenty-One


       Well the biggest thing that has happened around here lately is that we FINALLY got moved to our very own room out on the floor. (For those of you wondering... When I say "floor" I am talking about the Pediatric Cardiology Unit which is where pediatric heart patients go after their stay in the CICU.) We were originally told that we would spend two nights in CICU and two to three nights on the floor. So far we have spent a total of twenty nights in the CICU and we're working on night two on the floor. We've been told that we could make it home by this weekend but it will depend on how Jack does over the next few days with a few different things. 
         Overall Jack's health has improved greatly in the past week. He is completely infection and virus free right now and his fever has been gone for two whole days. His white blood cell count is down to the lowest its been since before surgery and his inflammation number is zero. 
          The main focus though has always been on Jack's saturations. His saturations have been doing ok since he was extubated the second time. Most kids in Jack's positions generally sat in the 80s after surgery. Jack gave the doctors a good scare when he started satting in the 50s and 60s but they realized pretty quick that Jack tolerates low saturations and doesn't get too blue like other kids would. They still have high hopes that his sats will rise with time but they don't know how long it will take. The first time he was extubated his sats were really low and he ended up having to be reintubated in an emergent situation in which his sats dropped into the teens. Thankfully, that hasn't happened this time. He isn't having the pressure issues he was having the first time that contributed to his low saturations but also just having some extra time helped give his saturations a chance to slowly rise to a more stable area. This past week when he was still on high-flow oxygen his saturations were really great. They were in the high 70s and low 80s all the time. They changed him over to low-flow two days ago and his sats dropped back down into the high 60s and low 70s, which is not great but is still ok for Jack. Right now he is still on low-flow oxygen at 3 liters and 100%. We are likely going to have to go home on oxygen unless they can ween it and keep his saturations the same. We will see what happens over the next few days as they start the weening process. 
            Other than weening his oxygen, Jack also has to prove that he can get back into a regular routine with his milk and that has been more of an issue for us than we expected. Jack has always been a great eater and has gained weight well. But, after surgery he didn't have any milk for 5 days and then started tube feeding. He was on the vent for so long that his little tummy got used to the tube feeding that went past his belly and he isn't used to having food in his tummy. Now we are trying to feed him and he is having a lot of trouble. When he does eat well, he usually throws it back up. But mostly its just that he won't eat to begin with. He chews on his bottle and will sip a little bit but won't really get into it like he normally would. He did have a good day with eating yesterday and we thought we were past the rough spot so they pulled his tube out but after a long day of not eating hardly at all today, they had to put the tube back in and start him on tube feeds again. Even though this is a step back, it is important to know that he's getting the nutrition he needs right now. We will continue to try to bottle feed every few hours and see if he will take it. Hopefully over the next day or so he will pick back up with eating and we can pull the tube back out. 
        We have also had some issues with withdrawals again today. The new CICU doctor for this week sent us out to the floor with the plan to go back up on his withdrawal meds (Methadone and Ativan) because he believes that the fevers and other mysterious symptoms that Jack has had for the past week were from withdrawals. Then the nurse practitioner that was seeing us on the floor changed it back to the weening doses because Jack seemed to be doing so well yesterday and last night. Today, however, has been a rough day for our little man. He has just been super fussy all day and crying like he was sick or something hurt. We held and rocked him all day but nothing really seemed to soothe him. So, the nurse practitioner decided to give him an amped up dose of Ativan to check for withdrawals and he instantly changed. So...withdrawals it is. Now we are going back up a tiny bit on Ativan and just staying the same on the Methadone for tonight. They will continue to try to ween him off of them but they believe its more important that withdrawals don't interfere with his recovery than for him to try to hurry off of the drugs. They have promised us that he will be off of both of them just fine within a few days. 
       Lastly, as if our poor sweet boy hasn't been through enough already... He got his SECOND tooth today. On top of everything else, Jack has gotten his first two teeth while he has been in the hospital. He's getting oragel and chewing a lot but other than that, he's just extra fussy and doesn't feel good. Hopefully the pain and irritation from that will subside by tomorrow. 
        


       I know it still sounds like a lot, but compared to where we were just a week or two ago, its nothing. We know that everything I just mentioned will be better in time. Mostly in just a few more days. The most important thing right now is that we are finally seeing BIG sweet smiles from our baby boy everyday. He feels like playing more now and wants to be held. He's watching lots of Spongebob and just all around seeming more like himself. We are also SO relieve to be here in the room with him. Having our own space is great but the best thing about getting our own room is that he is all ours now. The nurses and doctors come in to check on him often but in between, its just the three of us. We're changing diapers, rocking, playing and cuddling just like we would if we were at home. AND we're here with him all night. Even when he's awake at three in the morning refusing to take a bottle or go back to sleep, we're just thankful to be with him and see his sweet face. God is good my dear friends. He is good to us. He has answered our prayers and I have no doubt that He will continue to do so and we will see great things from this boy in his lifetime. 

Bye Bye to our friends in the CICU <3

Hello to our room on the floor <3

         

Post-Op Day 17-18: What a Difference a Day Makes

Post-Op Day 17

        These past couple of days have pretty much been dedicated to accomplishing the following things. 

1. Maintain good sats (between 75-85)

2.  Ween oxygen

3.  Stop throwing up/diarrhea 

4.  Get fever down

5.  Start eating

**And an added bonus of sprouting new teeth!**

The mysterious fever has been really throwing everyone for a loop. Jack has been tested for every single possible cause and all tests are negative. The good news is that he doesn't have any infections or other scary issues like that. The bad news is that if we can't figure out where the fever is coming from, we can't figure out how to make it go away. Hence, the waiting game. 

          In the mean time, we have been battling some throwing up and diarrhea. It started a couple of days ago. Its really traumatic because when he starts throwing up he'll cough and gag and dry heave for a few minutes. He literally gags so hard he stops breathing and his little face turns purple. We have to pat his back really hard to help him. Because he is on the TP tube which delivers the breast milk directly into his small intestine, he has no food in his belly to throw up. He's throwing up stomach acid which is brown and gross. Then two nights ago he threw up blood. The doctor thinks it was possibly caused by a tear in the lining of his stomach or throat because of all of the trauma to them over the past few weeks with all of the tubes going in and out combined with the constant throwing up. It was really a terrifying moment but it only happened that one time and I pray it never happens again. 

           The diarrhea has been rough because he has the world's worst case of diaper rash and his little bottom just hurts. We have about 4 different creams that we are putting on him every time we change him and hopefully it will start to get better now that the diarrhea has pretty much stopped. It's also rough because every time he poops they have to change his central line dressing because it gets nasty poo germs on it and that could cause an infection. The skin under the dressing is incredibly raw because they keep having to tear tape off of it and put new tape on. He's all broken out and his skin is bright red and so sore but they can't treat it because they have to be able to stick tape to his skin to cover the central line. 

           His sats have finally started to improve and he is doing really well now off the vent. When he's on 100% high flow oxygen he is satting in the 80s like a rock star. They need to ween him down and then eventually switch him to low-flow before we can go out to the floor so they've been working on that for the past few days. Yesterday they decided to just give it a try. They just went from 5 liters of high flow to 2 liters of low-flow. Jack didn't respond too well and after a few hours of low sats, they had to put him back on high flow. The main problem with that process yesterday was that his little face is as broken out and chapped as his bottom. They keep having to take that tape off of his face and put new tape on every time they adjust his oxygen because he has to get a different nasal cannula for each type of flow. Yesterday it was really bad. His face is all broken out and red and raw. He would scream and cry when they touched it. They kept changing the tape and it was just heartbreaking when they would pull the tape off. It hurt him so bad. Yet again, though, nothing can be done to treat the skin because they have to be able to stick that tape to his skin. Poor baby. 

           Jack hasn't had a bottle since the night before surgery which was almost three weeks ago now. In babies its dangerous to let them go this long without drinking from a bottle because they lose their ability to suck and swallow. But, because he was on the vent for so long and then his tummy has been sick since he came off the vent, he hasn't been able to try a bottle yet. Today we tried a bottle and he gagged and started dry heaving before he even took the first swallow. We decided not to try again today because its so hard to see him sick like that. We'll try again tomorrow. We also met with someone from speech that talked to us about the therapy that they will do to re-teach Jack how to take a bottle if need be. She also told us about several tests they will do before he can really start drinking anyway. They have to make sure that his vocal cords weren't damaged during surgery and that they can completely close when he swallows so that he doesn't aspirate. 
            On top of all of the other battles that our sweet boy has been fighting, he actually got his first tooth today. We had noticed that he was really fussy and extra slobbery for the past couple of days but he has been teething for a while now so we didn't think too much of it. People have told us that it usually takes a few months from the time they start teething until they actually get their first tooth. The nurse ordered some oragel from the pharmacy after she noticed how much he was chewing on things. Then when she put the oragel on his gums she felt his little tooth. Josh and I laugh because we never even gave him oragel at home and this evening our doctor came by and told the nurse to give him a dose of Morphine to help with his teething pain. He may be the only baby in the history of the world to get Morphine for teething. 

        It has been a challenging couple of days but we see small improvements in him each day. Right now we are just happy to see his eyes open and clear and to catch a few tiny smiles here and there. It's a joy to us just to reach the point of him getting his first tooth. There have definitely been those terrifying moments when we weren't sure if we would make it here. What is just a tooth to most people is a BIG moment for us. Our son is alive and getting better each day. He's a real miracle. At this point we feel like we can see the light at the end of the tunnel and we are satisfied with where we are in the journey because as much as we'd love to be home, we're just glad that we aren't in a place of fearing for his life. This place seems safer. Seems closer to home. 

          

Post-Op Day 18

       What a difference a day makes! 

        Today has been a big day for our boy!

1.  First of all, his temp has officially migrated down to the low-grade range and stayed there for 24 hours. It's not perfect but much better. 

2. We're weening off of most of the pain meds and some of the antibiotics. 

3. His diaper rash is way better today. He still screams when its diaper changing time but his bottom looks so much better. 

4. Most of his diarrhea is gone and throwing up has stopped completely. 

5. His central line area is looking better because it hasn't had to be changed as much today. 

Now for the BIG things that happened today...

        First thing this morning Jack's oxygen got changed over to low-flow and he is rocking it like an all-star! Sats in the 70s and 80s all day...even when he's mad! Way to go Baby Jack! Dr. Dabal came by and said that if he keeps this up for a few days, we might not have to go home on oxygen!!  

       Then after lunch we got to take our little man on a wagon ride around the hospital. We loaded up all of his portable equipment and pulled him around for about 15 minutes. He liked it until the end and then he got mad and demanded to be put back into his bed. 

        Then he took a one ounce bottle of breast milk by mouth and didn't throw up at all. Then later he took a two ounce bottle. This was a HUGE step for him. No therapy. No G-tube surgery. Praise God. 

        Dr. Dabal told us that at this rate we could be on the floor by Tuesday and home in a week. Today has been the best day. We couldn't be happier with the progress! God is good. 

         

Hebrews 11:1-2 "Now faith is confidence in what we hope for and assurance about what we do not see. This is what the ancients were commended for."

        

   

Post-Op Day Fourteen: Catching Up

           Two weeks ago today my son had open heart surgery. Even now, after sitting in a hospital for two straight weeks, its hard to believe. I think sometimes that I'll wake up and this will all have been a dream and that Jack will get to be a regular kid. That one day I will be able to watch him run and play in the yard without making him take breaks and watching to see if he's turning blue. That a cold won't be the scariest thing in the world. That a cold will just be a cold.
            But as far as I can tell, I'm not dreaming. But the good news is that God is in control of our little world. And I'm quite certain that He has a BIG plan for my son. If my sweet boy has to be sick and has to go through all of this then at least we can rest in the promise that our God is sovereign. He rules over all people and all things and is in absolute control.
            ....And who wants to be normal anyway? Normal is totally overrated.

<3--------------------------------------------------------<3

Post-Op Day Fourteen


         I am so terribly sorry that I fell off the blog wagon this past week. I have just been staying with Jack as much as I could since he's been awake a lot more and so I haven't had much extra time. I will do my best now to get you guys up to date on what's been going on around here.
        First of all, we're still in the CICU and probably will be for at least a few more days. We've hit a few more bumps along the way but overall he is doing better and it seems like we are finally headed in a good direction. He has a killer team of doctors and nurses who are working diligently to fix him. Last night when we walked back in after shift change, there was a "class" going on where Dr. Jackson was brainstorming with the nurses about how to get Jack's sats up. 

 --- Here is the board she was writing on. ---

        In my last post, we were on day eight and Jack was battling an infection. His lungs were junky and they weren't able to extubate as soon as we had hoped. Jack was put on several antibiotics and since then that infection has completely cleared. They tried for a PICC line in his arm but it failed. A couple of days later they tried again in the other arm and failed again. At this point our poor baby looks quite similar to a used pin cushion. Thankfully. he was knocked out both times and didn't feel the pokes. He does have bruises but they are healing now. The day after the second try for the PICC, the doctor decided to just go for another central line and take out the old one. The point of all of this was that his original central line had been in way too long and was in danger of causing an infection but they needed a good line that they could use to draw blood gasses and give his meds. They finally got the new CL and took out the old one. But before they took the old one out they had sent off blood cultures from that line. Those cultures came back positive for an infection in the blood which was terrifying because when the doctors talked to us about infections they always said that the only infections that scare them are blood infections. They assumed that the blood culture was contaminated because of the line being so old but they couldn't be sure for a couple of days. So, we had to live with that added fear for a few days but it turned out that there was not really any infection in the blood, or anywhere else for that matter.
        His lungs finally started to look clearer and his sats were hanging out in the 50s and 60s but then they discovered a new infection this past weekend, similar to the original one we had just gotten over. Plus he had spiked a fever that we couldn't seem to shake. So, extubation was put off a few more days. BUT, finally on Sunday morning, after nearly two long weeks, it was time. They pulled the tube out and turned the vent off. It was a BIG day. Jack fussed all day because he didn't like the new nasal cannula that they put in his nose and the tube that was still going down his nose into his belly. He tried to pull those out every chance he got which meant me and Josh spent most of the day trying to keep his hands away from his face. He also still didn't feel great because of his fever and so he threw a few little fits. We watch the sat monitor all day praying it would be different this time and he wouldn't have those scary dips in the numbers when he got upset like he did last time he was extubated. It was a long, intense day but this time it was better.
         Over the last few days Jack has kept his fever. He has been tested for every infection and virus that can be tested for and all have come back negative. The doctors seem to think he has some kind of respiratory virus that is keeping his temperature up and his lungs junky. He is coughing hard and throwing up a lot of thick mucus. He will start coughing and then gag and then throw up. Poor baby. The fever is really high and persistent. 
           We are also dealing with withdrawals from all of his pain meds. Our doctor explained to us that 100% of babies who are on the pain meds after surgery become addicted and then withdraw when they are coming off of them. He is now off of the two pain meds he was on and is now on Methadone and Ativan to help ease the transition. The withdrawals have been hard to watch because he shakes and seems really miserable. This morning the doctor decided that the withdrawals were too intense and she decided to go back up on the Methadone and ween him a little bit slower. Hopefully we'll be fully done with the pain meds in a day or two. What's really crazy about all of this is that before surgery, I was reluctant to even give Jack any Tylenol. His dosage was 2.5 mls and I usually gave him 1ml. 
            Just a couple of days ago we started having another problem. He was having a strange side effect to one of the drugs that he really needs. He is on a drug called Sildenafild which is actually Viagra. It dilates the blood vessels in his lungs which helps his heart work more efficiently. Jack really needs this medicine to help with his saturations but this weekend the nurses started to notice that his little "man part" was always standing up when they changed his diapers. They told the doctors about it and they told the nurses to watch it for a while. After several hours of this, they realized that something was wrong. They called the urologists who then came down to look at it. They told us that if it continued to be erect for more than four hours at a time it could possibly cause permanent impotence. The only way to solve this problem was to give him a shot right through his little man part. Funnily enough, when Josh was signing the consent form for them to give him the shot, he just happened to glance in Jack's diaper to check one last time and guess what? It was down. I guess Jack heard what was coming and was not about to let that happen. Haha


  ---------   So, where do we stand right now? 


               Jack still has the massive fever that we can't seem to break just yet but hopefully soon. He is getting fed through an NG tube that goes into his tummy and is tolerating feeds well but won't be able to try a bottle until after his fever breaks and they test him to make sure he can swallow good. He is finally awake and alert for most of the day and his eyes are clear, blue, and beautiful. He is watching Spongebob on the Ipad which we have rigged up to hang from some medical equipment over the side of his bed. He is also playing with toys and being held for most of the day just like he would be at home. No smiles yet but I am determined to get the first smile although Dr. Alten is in a contest with me for that. All of his surgical wounds are pretty much healed and his scar looks great. Tomorrow we even get to start putting onesies on him. :) 

Here's me and Dad holding him. Precious moments. <3

Here's him playing with his giraffe rattle named Geraldine and then watching Spongebob. <3

               Our goal is to break the fever and get him past this virus. Continue to ween him off the meds and Nitric and then eventually ween him down on the oxygen and get rid of the high flow nasal cannula. It's pretty likely that we'll go home on oxygen but we can certainly handle that and it should only be for a couple of months. 
               Jack has been on SO many meds and antibiotics that it will be imperative when we get home that we keep him as healthy as possible. If he were to get sick it would be so much more difficult to get him over it because he has had such heavy doses of so many different antibiotics...Not to mention his heart issues and recent surgery. We will really have to enforce the "no kids" rule for a while and probably keep him at home for a good while. Believe me, nobody hates that more than I do because I LOVE to get my sweet boy out and show him off BUT I will make any and every sacrifice to keep my boy healthy. 
              
-----------    You're talking about when you come home...but are y'all ever coming home?


                Yes! We will be getting out of here eventually. When? We don't know. Right now we have to focus on the fever. Then he has to get off the meds and Nitric. Then we have to ween down the oxygen. Then we have to make sure his sats are living in the high 70s to low 80s consistently. Then we can go out to the floor. Then we can focus on learning to take bottles regularly again. Then once all of that has been accomplished we can talk about going home. Once we get home a home health nurse will be assigned to us who will come and set up our oxygen system and teach us how to use it. She will come every so often to make sure we have what we need and are doing ok. Then we'll start our frequent visits to clinic to make sure everything with his heart is working right. 


----------    Now is definitely not the best time to ask me about the Fontan. After this crazy ordeal, I am currently refusing to come back. Me and Jack are formulating a plan to run away to Mexico to live on the white sandy beaches. NO MORE SURGERY for my boy. Maybe by the time he's two and a half years old I will reconsider. Maybe. 

            <3---------------------------------------------------------<3

"For dominion belongs to the Lord and he rules over the nations." Psalms 22:28

"And we know that in all things God works for the good of those who love him, who have been called according to his purpose." Romans 8:28

"“As the heavens are higher than the earth, so are my ways higher than your way and my thoughts than your thoughts." Isaiah 55:9

       

Post-Op Day Seven and Eight: Bitterness and God's Promises

Post-Op Day Seven


             Jack had a really good day. His temp jumped around but the doctor said that he didn't want to worry about a low grade fever because that just meant that Jack's body was really fighting the infection. His sats were pretty average. Not great, but not bad.
              But the biggest event of yesterday was that Jack opened his eyes for the first time in over a week. --Well, he technically opened his eyes on Saturday when he was extubated but they were foggy and he couldn't seem to focus on anyone. That day it was more scary than happy.-- But this time it was wonderful. His eyes were clear and beautiful. They were Jack's eyes. He opened them and looked right at me and I melted. I love that boy so much. He's my whole world.

Post-Op Day Eight


           Yep. We're still here. Jack had a really good night with his favorite night nurse, Katie. The only little incident in the night was that he started throwing up stomach acid around 8:30 but she quickly put in a second NG tube to catch it since he has the vent tube down his throat and can't really throw up. She caught a lot of the acid at first so they decided to leave the tube in so it wouldn't collect in his tummy. Now its draining through his NG tube but there hasn't been nearly as much since last night.
            This morning we were really hoping for extubation, however his sats were lower and temp was higher this morning than it had been all night. When the doctors made rounds they said that the top section of Jack's right lung has collapsed because of all of the fluid from the tracheitis. Now they are thinking he probably has pneumonia. They are still treating him with the two IV antibiotics and one inhaled antibiotic and they decided that they would just change the vent settings for the day and see if they could get his lung to open back up. If they can't do that by tomorrow morning, they will have a specialist come and give Jack a treatment where they will put a little probe with a video camera down into his lungs and look around then it will spray saline into his lungs and suction out all of the junk. When the doctors came by this evening they seemed to think that his 4:00 x-ray showed improvement in his lung so hopefully by morning it will be all better.
           

<3--------------------------------------------------------<3

            In situations like these, I have found that it is easy to become bitter. It wears on you over time and you start to feel your attitude change. When Jack was born and they told us that he had a heart condition, bitterness was unescapable. I had to work to rid myself of that emotion and it took time and some serious soul searching to come to terms with our new way of life and future. 
            When I went into the hospital in January to give birth to my son, I assumed that it would go exactly as I had pictured it a million times. I never dreamed that it would turn out the way it did. When Josh told me that there was something wrong with Jack's heart, my first reaction was fear and second was bitterness. Why Jack? Why us? Why me? Why not the lady who smoked when she was pregnant? Or the woman who talked about how there's nothing wrong with a drink or two?

           I had to go through a grieving period of some sorts. I experienced the seven stages of grief. First there was the shock and denial. (How is this possible? Is this a dream? This can't be happening to us.) Then pain and guilt. (Was it something I did? Is it my fault he's sick?) Next was anger and bargaining. (I'll do anything if you'll just make him better, God.) Then depression, reflection, and loneliness. (I'm scared of what will happen. I cry all the time.) Then there was the upward turn. (Maybe it's not so bad. If he has to be sick, at least it's this and not that. Things could always be worse.) Next was reconstruction and working through. (I don't like this but I can't change it so I'll just face it.) Then lastly I reached acceptance and hope. (Jack is going to be ok. We will trust God and watch him work a miracle. I'm thankful that He has chosen to use us.)
            As I have come to terms with my son's condition and accepted what our life as a family and Jack's life will be like, I have realized that I would never be strong enough to handle this hand we've been dealt without the love and peace of God in my life. On the days when I start to try to take control of everything, including myself and my emotions, away from God and into my own hands, I sink quickly. Yesterday was one of those days. 
           After 11 days in the hospital... 11 days of not holding my son... 11 days of watching him hurt... 11 days of being constantly terrified... 11 days of watching monitors... 11 days of listening to doctors... 11 days of tears... I got mad. 
           When they made me leave the CICU at 6:30am for shift change, everything looked good. Jack had a good night and was sleeping like a lamb. His sats were up and temp was down. We were thinking that when we went back at 8:30 we would be ready for extubation. However, when we did go back in, things were not how we had left them. His sats were back down and temp was back up. The doctor told us that part of his right lung had collapsed and he had a touch of pneumonia. 
           I was like, "You're kidding, right?" I mean, just when we thought we were on the right track, more bad news? Grrrr.... Right from the beginning of the day I allowed my attitude to plummet. I let anger and frustration rush in and take over. I was suddenly mad at everything and everyone. Baby Jack's soft spoken, ordinarily overly optimistic mom was on hiatus. I was bitter. 
          I won't go into details about everyone who made me mad... We'll just say it was a rough day. I can only imagine what everyone was saying when I wasn't around. "Stay out of Crystal's way. She is in a foul mood." I was just so tired of seeing my baby in that bed. I was tired of watching them stick needles into his skin like it didn't hurt. I was tired of watching the monitors get better, then worse. I was tired of hearing the doctors say maybe tomorrow. I was tired of the new nurse telling me stuff I already knew. Mostly I was just tired...and probably spread a little too thin. 
           Bitterness creeps in like a thief in the night, robbing us of our peace. Even in the midst of the biggest storm of our lives, we can have peace. Ultimately its up to us. We can choose bitterness or we can choose peace. As a result of my day of bitterness I ended the evening feeling guilty, heavy-hearted, and nauseated. And as a result of my bad mood, pretty much everyone else was in a bad mood too. I noticed that everyone else was talking about what a terrible day it was. What an awful nurse we had. What bad news we had received. I realized that as the mom, I set the tone of the day for everyone. I can take yucky news and make it sound like a pretty good report. Or I can take decent news and make it sound like the worst report ever. I guess since I'm the mommy, I get to decide...indirectly, of course. I suppose that nobody wants to be happy if I'm sad and nobody wants to be sad if I'm happy. 


            Natalie Grant describes the battle with bitterness well in her song "Held." 


"This hand is bitterness. We want to taste it. Let the hatred know our sorrow. The wise hand opens slowly to lilies of the valley and tomorrow. This is what it means to be held. How it feels when the sacred is torn from your life and you survive. This is what it is to be loved and to know that the promise was, when everything fell, we'd be held."


              I like the part where she says we want to let the hatred know our sorrow. Sometimes when we grieve, we just have to get mad. It's part of the process. Even though I've been through the grieving process, I am revisiting some of those steps right now. Bitterness is a tough one. It's easy to fall into and hard to pull ourselves back out of. Anger is easy. Why not? Why not blame anyone and everyone else? Why not yell, scream and punch walls. Why not? 
            I don't think God gets made at us for getting angry. I think that He wants us to trust Him and believe in His plan. I think that the more disciplined I become, the less bitter I will be. God's word is full of precious promises that remind us that there is no reason to be bitter. He has a reason why he allows things to happen. He has a plan to get us through. He only allows us to go through as much as we can handle. So, when things seem really bad and our mountains seem really tall...we can rest assured that it only means that God thinks we're strong enough to handle it and brave enough to be tested and used. 


And at the end of every stormy, bitter day... We can always be brought back to life, brought back to our optimistic, uplifted selves by one of God's precious promises... A rainbow. 


Here's my rainbow from yesterday. God is still good. His promises are still steadfast. 

"I have set my rainbow in the clouds, and it will be the sign of the covenant between me and the earth."       Genesis 9:13

             

Post-Op Days Five and Six

Post-Op Day Five


            This was a relatively uneventful day. Since they decided to let Jack stay on the vent for a few days, there really wasn't much going on. Dr. Dabal came by and talked to me. He told me that Jack does have an infection but they weren't sure where it was. He said that infections are really common and they would just treat it and then try to extubate again. He told me that when babies are on so many pain medications, they become addicted very easily. So, they were going to start him on Ativan and Methadone to help ween him off of the Morphine and other medications he has been on. He said that it was something they pretty much always have to do and really wasn't a big deal. Jack pretty much just slept all day and rested.


Post-Op Day Six


            Jack's temperature started to go up this morning and it scared me, of course. When the doctors came by doing rounds they told us that he had an infection in his airway caused by bacteria in his vent tube. He said it was a common kind of infection and was very treatable. It's called Tracheitis. He is getting two IV antibiotics and one inhaled antibiotic. Our nurse explained to us that he should react well to the antibiotics since he has never had any before. God willing, those antibiotics will knock the infection out completely in the next couple of days and we won't have to worry about that anymore. They did run a test this evening on his inflammation and it came back significantly less than it has been which was a really good sign that the antibiotics are working.
          The main problem right now with the infection is that they can't extubate him again until the infection is gone. The plan to extubate went from hopefully Wednesday to hopefully Thursday or Friday. We are nothing if not patient so we don't mind the wait. We just want our boy better, doesn't matter how long it takes.
           In other news, Jack had two ginormous poops today. I know you probably don't care about my son's poop but he has been having trouble going so it was a big deal. Way to go Baby Jack! Haha :)
           We should get the results of the cultures they drew tomorrow afternoon and hopefully they'll be better than they have been, meaning his infection is dying. His sats are still sitting mostly in the 60s but are slowly improving. They're giving him Tylenol to treat his fever but hopefully that will start to go down too and we can drop the Tylenol. He's getting his PICC line right this minute. By the time we're allowed back in at 8:30 they should be done with that and that will lower his risk of infection related to his Central line which they are taking out as soon as they get his PICC line in.

<3-----------------------------------------------------<3

         We're making progress slowly but surely. Today Dr. Dabal told Josh that he doesn't consider Jack a sick baby. That was reassuring to hear. This situation is such a roller coaster and there are ups and downs every single day. This morning I was bawling my eyes out, terrified. This evening I was laughing my head off, comforted. You never know what they day will bring. My faith in God is the only thing that brings any sort of stability right now. I truly don't know how people go through this without God in their corner. For me, I just constantly remind myself that we are going through this for a reason...BUT we're only going through. It will all be over pretty soon and we'll look back and be able to see the evidence of God being with us through this whole experience.
         I believe in my heart that God does have a plan for Jack far beyond this moment in his life. I believe that God has a plan for Jack as an adult. I always have. Sometimes when fear creeps in it becomes harder to see the bigger picture. It becomes hard to see past this moment. However, I know that God ALWAYS sees the bigger picture. He wrote it. He knows exactly what day Jack will take his first step. He knows that Jack's first word will undoubtedly be "Momma." He knows who Jack will marry. He knows how many souls will spend eternity in heaven because of the impact that my sweet Jack had on the world.
          My comfort is in knowing that Jack is having and will continue to have an impact on this world. God sometimes allows us to go through trials to teach us lessons and also to use us. I believe that we are most certainly learning lessons right now. We're learning about having faith, about how to trust God completely, about how to be patient, about how sometimes God's plan works out so much better than you could have imagined when you just trust him and allow him to do things in His own timing. Sometimes we look back and think, thank goodness that God didn't give us what we were asking for. He most certainly always knows best.

"And therefore the Lord waits to be gracious to you; and therefore He lifts Himself up, that He may have mercy on you and show loving-kindness to you. For the Lord is a God of justice. Blessed are all those who wait for Him, who expect and look and long for Him." Isaiah 30:18

"For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." Psalm 139: 13-14