Friday - March 13
We were up at 5am with little to no sleep. At 6am, we went to be with Ben before they moved him out of NICU to PICU to be prepped for surgery. What a difficult hour. We just looked at Ben and admired every inch of his body. Hes so precious so fragile. At 7am, they moved Ben down to PICU. It was kind of shocking when they put Ben on a full-sized bed. He looked SO tiny. We were told that was so they would have room for all of his wires, tubes and machines after surgery. At 9:15am, they came and put in Bens lines for surgery and placed him on the ventilator. It seemed as we were just counting down to 11am, the scheduled surgery time. When the anesthetist came to take Ben back to surgery, I was just crushed. It was absolutely the most gut-wrenching feeling I have ever had, second only to when my husband told me that our son, Matthew, had died. I was so nauseous, I thought I would vomit right there.
At 11am, we met Dr. Helseth, the surgeon, for the 1st time. He is not a man of many words, but he exudes an air of confidence about him. I felt if anyone could successfully perform this surgery, he could.
To Ben I wrote:
You are so precious,
You are in good hands,
The agony of waiting to hear from the operating room was intense. Thankfully we had many wonderful friends and relatives with us to help keep our minds off it a little. About 3½ hours after surgery began, Dr. Singh came into the waiting room with a smile!! He said everything went well, and Ben was off the heart-lung bypass machine. Our prayers had been answered.
It was another ½ hour before we could see Ben. When we did finally see him, I was overwhelmed. The sight of seeing my son with so many tubes, wires and machines connected to him was too much. I could only be in his room for a minute or so until I had to leave. It made me nauseous, and I felt as though I was going to faint. We were warned about what he would look like, but until you see it for yourself on your own child, you really cannot imagine the feelings you will have.
We were told the first 48 hours would be the most critical. I had also read that of those babies that do not survive this surgery, 75% of them die within the first 48 hours. So now we just had to wait...and pray.
Saturday, March 14 - 1 day post-op
After a sleepless night, we went in to see Ben. Much to our surprise, we were told he had a "fantastic" night! Ben's heart rate, which had been around 200 bpm right after surgery, has come down to around 178. His ventilator, which had been set to breathe for him 24 times a minute, has been reduced to 20 times, and the chest tubes are draining much less fluid. We were told the chest tubes might come out tomorrow!
We had been warned that most patients who are on the heart/lung bypass machine have some trouble or "crash" between 6-12 hours after coming off the machine. Benjamin made it through this period very well. We feel so happy, but still so scared. He has so very many wires and tubes and machines keeping him alive right now. We are so thankful for the caring and knowledgeable staff. Peggy, Ben's primary nurse right now, is so wonderful. She's keeping us together, as well as Ben. The pit in my stomach has not subsided. This is so extremely difficult.
8:12pm - Ben continues to do well. His vent has been turned down to 14 breaths a minute, and his blood gases look good. As they continue to turn the vent down, the level of carbon dioxide in the blood will increase. This will cause the brain to kick in, and hopefully tell Ben to start breathing on his own. At least, this is what is SUPPOSE to happen.
The doctors have kept Ben paralyzed so that he doesn't work any harder than he has to. Rest is what he needs to heal. We were told they would probably let Ben start waking up a little by the middle of the week.
Sunday, March 15 - 2 days post-op
This morning, the first words we heard were "terrific night". I cannot describe the beauty in those words! I am starting to think that maybe...just maybe...Ben might actually make it through this.
Today, Dr. Helseth removed the chest tubes. Dr. Singh also said that they'd start to let Ben wake up a little, too! I wasn't expecting it for a few more days, but all has gone so well, they think he's ready. We've been told that Ben's recovery is actually going a little bit ahead of schedule!
It's going to be more difficult for John and I these next few days as Ben starts to wake up. We were told that he may cry, but there will be no sound (due to being on the ventilator), just tears and grimaces. So far, Ben's been very drugged and out of it, so we have not had to endure this.
Monday, March 16 - 3 days post-op
Today we played the "waiting game." No big steps forward, just waiting, waiting for Ben to lose more fluid.
Ben had gained about three pounds of fluid as a result of being on the heart/lung machine. That is a huge amount, considering he went into surgery weighing just over six pounds. He needs to lose the extra fluid before they will take him off the ventilator. The extra fluid causes the heart to have to work harder, and we don't want that. We were told another day or two on the vent.
Tuesday, March 17 - 4 days post-op
Same thing today...waiting for Ben to lose more fluid. There's really nothing we can do at the hospital, but watch Ben. They keep him pretty sedated, because he simply needs to rest.
Wednesday, March 18 - 5 days post-op
Ben actually gained a little weight overnight. They have him on diuretics to help get the fluid off, but we were told his body just may not "be ready" to give up this fluid. Prior to surgery, we were told Ben would be on the vent for 5-10 days, so he's just getting there. It is still so difficult waiting.
Our NICU primary nurse, Jeanie, and Peggy from PICU, are SO wonderful. Today, Jeanie brought down special blankets for Ben from NICU, because she thought he deserved something better than the standard PICU blankets. Peggy gave Ben a bath, then the two of them dressed him and changed his blankets. They take such good care of him. I do not know how we can ever repay them, or all the other wonderful nurses and staff here. Shannon is another of Ben's primaries who keeps us sane. When she is watching Ben at night, we can sleep much better. She takes such good care of him.
Thursday, March 19 - 6 days post-op
Well, Dr. Singh ordered an echo on Benjamin's heart today, and found that fluid has built up around his heart. This can cause heart failure if not drained, because it forces the heart to have to work harder to pump the blood. Dr. Helseth had to reinsert one of the chest tubes to drain the fluid. This is our first step backwards. Ben has not been able to get rid of the last 1/2 pound of fluid, and this may be why.
I did get to hold Ben for the first time since surgery today! It felt very good, even though he was heavily sedated and back on the paralytic. It did, however, remind me of holding Matthew after he had died, too, so it was extremely emotional.
Friday, March 20 - 7 days post-op
The vent was turned down to 8 breaths a minute today. Ben has started to do more self-initiated breathing. Our primary nurses are Peggy, Shannon and Kathy W. We have been so happy with them. We could not ask for any better!
Saturday, March 21 - 8 days post-op
Ben is 12 days old today, and just got his first "taste" of food. He was started on breastmilk, but gets it through an NG tube, which is a tube that is inserted in his nose and goes down into his stomach. As for the vent, they are now saying early next week.
So far, we don't get much of a response from Ben. He is still drugged up a little. He will open his eyes and just stare at us, but not much more.
Sunday, March 22 - 9 days post-op
Finally...the chest tube was removed! Ben was also moved out of the large hospital bed into a crib! What a difference that makes!
Monday, March 23 - 2 weeks old
Today was going to be such a good day. The plan was to hold Ben's sedation at 4am, so that he'd be good and awake to extubate (remove him from the vent) him. He needed to be ready to breathe on his own. The only trouble was, even after they held the sedation, Ben just wanted to sleep. He slept ALL day, so they would not do the extubation.
Tuesday, March 24 - 11 days post-op
Benjamin surprised us when we got to the hospital this morning! We had slept at home for the first time last night, and when we walked in to Ben's room this morning, he was already extubated!!!!! It took 11 days, but he finally did it!
Ben still is having some problems with high blood pressure and a possible addiction to chloral and/or morphine, which is causing him to have trouble sleeping and to be crabby, but he's doing wonderful.
Wednesday, March 25 - 12 days post-op
Well, we discovered one downfall to being off the ventilator today. It is that we don't get our primary nurses as much, if at all. We have had a new nurse every shift since yesterday morning, and that has been VERY hard. The new nurses do not know Ben, and all the little things that help him, such as laying on his left side, how much chloral to give him and when,etc...just the little things you can only learn by being with him all the time.
Ben's blood pressure is still up, but the doctors are not too concerned.
Thursday, March 26 - 13 days post-op
Ben was nearly put back on the ventilator today, due to excessive mucous buildup in his lungs. The respiratory therapists started more aggressive lung care, including doing the nebs every two hours, instead of three, and increasing the suctions and "back pats" (beating on his back to loosen the mucous so he can cough it up). He seems to be holding his own.
Friday, March 27 - 2 weeks post-op
Ben had a bottle for the first time ever, today!! He did not know exactly what to do with it, but sucked a little bit. Getting Ben to feed will be the next big step. It's very common for heart babies not to eat well.
Saturday, March 28 - 15 days post-op
Ben was moved out of PICU to the general pediatric floor today. HOORAY!! Ben is also eating very well, much better than the doctors had anticipated. He weighs 6lbs, 9 oz., which is five ounces short of his birth weight.
Sunday, March 29 - 16 days post-op
Ben had his NG (feeding) tube and neck line removed today. Both have been in since surgery. He looks so good. It is his first time since birth that he is tube, wire and needle free!! Ben nursed for the first time today, too, and actually did pretty good. He does get more tired nursing, however, because it is more work than bottle feeding.
Monday, March 30 - 3 weeks old
We were told another 2-3 days in the hospital, because Ben lost weight overnight. Everything else looks great, including his sats, which are running 80-90%, which is right where they want him to be.
Tuesday, March 31 - 18 days post-op
Unbelievable! I was feeding Ben this morning, when our cardiologist came in and said, "So, how would you like to go home?" I just about dropped Ben! I could not believe it. We were actually going to take our little miracle-man home for the first time. We had to run out and buy some diapers, wipes, bottles, blankets, etc. before we left, but at 6pm today, we were home as a family.
The deeply intense feeling of joy is indescribable. As I rock Ben and look into his eyes, I am overcome by tears of joy and happiness. I really never imagined this moment would come. The Lord truly does work miracles.
BEN's FIRST TIME HOME!!
(April 1, 1998 - June 1, 1998)