A Good Anniversary to Forget - Part II

...continued

The day before his surgery (March 23, 2010), we went to the hospital for pre-op procedures. Jacob and I were taken to the Cardiac Intensive Care Unit (CICU) where Jack would recover and saw the babies there, with their many machines. It was impossible though to envision our healthy, big baby in this setting; these babies looked so small and sick. The most helpful part of this day was sitting with Jack's cardiologist and looking at Jack's heart on the ultrasound machine together. The thick muscle bands were so obvious (even for me, someone who has a hard time making sense of anything on an ultrasound) that it helped to be able to SEE the problem and know that this surgery was going to hopefully fix it.

We had to be at the hospital at 6:00 am, and Jack wasn't supposed to eat after 3:00 am. I set my alarm so that I could nurse him right before 3:00. It was a sweet moment; I was pretty calm that morning and able to just look at him and love him and feel at peace. I clearly remember putting him in our bed next to Jacob so I could go ahead and get ready and just looking at them together, sleeping sweetly. I hope I always keep that memory.

My parents and Jacob's mom were with us for a while and then went to the waiting room while we waited for it to be time for Jack to go to surgery. We met one of the two surgeons for the first time to sign some papers and go over the procedure and I think it made us both feel reassured. At around 8:00, we went down to the surgery holding area with Jack. We were both still calm. Two nurses came to get Jack from me and we managed to keep it together even as we kissed him and they took him. But then as we walked out of the holding area, panic hit and it felt so insane to have just let someone take my baby away. We pulled it together and went to sit with our parents in the waiting room. Jacob suggested we go get something to eat in the cafeteria so we headed that way. As we were walking, we passed the other surgeon, whose nurse gestured toward us as the parents of Jack. He nodded curtly and kept walking and that about did me in. My reassurance went away and I got so scared again that my baby was with people I didn't know. Jacob calmed me down and the rest of the waiting time was fairly calm/mundane.

Jack underwent open-heart surgery. This meant he was put on a heart-lung machine for the duration of the surgery. The surgeons' goal was to close his VSD with a patch and remove the muscle bands in his right ventricle. It ended up taking about 6.5 hours. There were two complications. First, Jack must have inherited my veins bc the doctors couldn't get an IV in his groin and so ended up having to go in his neck. (He had massive bruises on his inner thighs for months afterward as a result of their efforts.) Second, the surgeons thought they had finished and were about to close up, when the cardiologist did an echo (standard procedure) to examine the work. At that point, a second VSD was noticed and so the surgeons went back in to close it as well. Jack did great throughout the surgery.

It took an additional hour for him to be moved over to the CICU. We waited anxiously to see him. We had been prepped for how he would look but when Jacob and I finally were brought in, it was like being punched in the stomach. My eyes scanned the room and then all the sudden landed on my baby, but looking not AT ALL like him. Post open-heart surgery, patients are kept on a paralytic for several days to allow their bodies to heal; this means they need to be on a ventilator, so Jack was stretched out on the bed, not moving, with a machine breathing for him. He had three tubes coming from his chest draining blood from the surgery, a catheter in, and many lines going into the central IV in his neck. He also had wires in his chest in case the doctors needed to use them as a pacemaker. He was puffy from the fluids given during surgery. There were lots of machines around tracking his vitals. I clearly remember his heart rate was teetering around 200 (normal being 120-140). We have pictures of these early days but they still horrify us a little and we've never wanted to post them.

The initial shock quickly wore off and we spent the next several days just holding his hand and talking to him. We were able to sleep at the hospital so we were never far and I got to have frequent visits day and night as I was pumping breastmilk every 3 hours to keep up my supply while Jack couldn't eat. The CICU was closed for 2 hours each morning and night and we used the evening time to go home, eat dinner, and shower. By the second night, it started to feel really old seeing Jack paralyzed and hooked to so many machines; the happiness of the surgery's success was starting to wane and I just missed my baby. I didn't like being in our house without him.

Jack did excellently post-surgery and was a textbook recovery case. The doctors started to wean his paralytic 2 days post-surgery and we slowly watched him "wake up." This was a mixed bag as with consciousness came an awareness of pain and unfamiliar settings. The nurses actually tethered his wrists to his bed so he wouldn't be able to dislodge any tubes or lines. One of the hardest parts of the hospital stay was seeing him awake but still on the ventilator. He would periodically need his throat suctioned to remove secretions, which meant disconnecting the ventilator and nurses manually doing this. It was obviously stressful and scary for him not to be able to breathe and he would get agitated and start to cry. With the ventilator in he wasn't able to make any noise, so all he could do was silently shed tears which Absolutely Broke My Heart - Repeatedly. We would do our best to calm him down afterward.

Thankfully, by the next day he was able to be extubated and to just have a nasal oxygen cannula. He had to wait 24 hours before he could be fed and as the day waned, he became increasingly upset as I'm sure he was hungry. This was also pitiful to watch bc his voice was weak and he could only cry hoarsely. I also felt useless as my presence seemed to make matters worse since I was nursing him and seeing me only frustrated him as I wasn't offering food like I normally did.

Jack's first hospital bed - day 4

Once he was awake and crying, he got moved into a more secluded part of the CICU

On day 5, he was able to eat again, but only through a bottle since he still was connected to so many things. Jacob gave him pumped milk in a bottle which worked for the first feeding but then we gradually had to resort to a medicine dropper over the day because he was upset and not wanting to take the bottle.

At this point, he was also being weaned on his pain medications and I think he was just agitated in general as he had more pain and was dealing with some withdrawal. I was given the chance to hold him at one point which was momentarily wonderful as he did calm down but he had so many wires coming out of him that the process of getting him back in the bed (helped by multiple nurses) put him in pain and upset him and I ended up wondering if it had been worth it.



Finally on day 6, enough lines were removed that I was able to hold him more easily and was able to nurse him again - which, thank God, he took right back to! This day he experienced a good bit of withdrawal from the pain medications and some awful bloating; it was really pitiful to see him like this and not be able to make things better.

On day 7, he was discharged from the CICU to a regular room in the hospital and the next day, after a "looks great" heart echo, we were sent home.

The next few weeks were difficult as Jack seemed detached, probably from the incredibly jolting experience in an otherwise happy life, and was dealing with physical pain. He had two daily medicines he took for about a month and we couldn't pick him up under his arms for 3 months. He saw his cardiologist a week out and looked so good they said they didn't need to see him for 6 more weeks. At that appointment in May, his heart looked just as healthy as any fully formed heart and we were told we didn't need to come back for 6 MONTHS!

This was huge news bc at that point, Jack himself wasn't even 6 months old. His heart defect and surgery had defined his first 6 months of life and all the sudden we found ourselves in the clear. This end result has only gotten better - the 6 month check-up led to a "we don't need to see you for a year" and that checkup led to "we don't need to see you for TWO YEARS!" (we'll go back right before Jack's 4th birthday). Jack's heart is fully repaired and there is an extremely low likelihood that he would ever have any issues in the future. He can do anything any other child can do and the only lasting reminder of the surgery are the scars on his sweet chest (which, see picture evidence below, have GREATLY diminished with time.)

A little over a week post surgery

1 year post surgery

2 years post-surgery

So it was incredibly refreshing to be able to forget the surgery anniversary after having Jack's heart be the focal point for the first 25% of his life. He is now such a healthy, active, inquisitive, charming little boy that it's easy to forget he ever had any health challenges. WHAT A BLESSING - we are so thankful to God for the medical advances that have given our little boy a normal life in a healthy body!