Cardiologist Appointment

Jackson met with his cardiologist again today. The news was good for the most part. During his last appointment, the doctor discovered that there was leakage between the two sides of his heart where a hole had been patched up (he was born with a Ventricular Septal Defect, a hole in his heart which was repaired). Though it's still leaking, it is leaking less than before. This is good news.

Unfortunately, there is another problem. Scar tissue formed around the area where they stitched his pulmonary artery to his heart. This scar tissue has tightened, causing that portion of his pulmonary artery to become smaller than the rest of the artery. For this reason, there is difference in the pressure on both sides of this spot, causing his heart to have small heart murmurs. This is actually a somewhat common consequence of the arterial switch surgery, though ideally it would not have happened. In its current state, it's not a major problem, but they'll have to continue watching it over the months and years to make sure the problem doesn't get worse. If it does, he will require surgery again, though not nearly as major as the first.

Overall, however, he is doing well. The infection in his incision seems to be improving, or at least not getting worse. And as evidence of his healthy appetite, he weighed in at 12 pounds 7 ounces today!! Their scales could be off but probably not by too much. I guess we'll have to stop giving him chocolate cake...

Another Hospital Visit

Jackson had to go to the hospital again today but was fortunately sent home. His incision began looking a little "angry" last night. It developed a red area full of pus. Dr. Bichell (his surgeon) looked it at and thinks it may be one of the sutures (holds the incision together after surgery) may be dissolving and creating the pus. We'll keep watching it, cleaning it, and hoping it clears up.

He'll have his next cardiologist appointment on Monday during which they'll check to see if one of the valves is still leaking.

Pictures!

Jackson's still doing pretty well. We've got another cardiologist appointment on Monday during which they'll check again to see if one of his valves is still leaking. However, he's acting like a healthy little boy so we're optimistic about his progress. I've put some pictures up to share. Click the image below to see them all. Hope you enjoy...

Jackson's Photo Album

Pediatric Appointment

We had our second pediatric checkup this morning. Jackson now weighs 10 pounds: he is in the 75th percentile for weight and 80th percentile for height. He appears to be growing at a normal baby's rate now. The doctor is very satisfied with Jackson's health and his post-surgery progress.

Checkup with Surgeon

We met with Jackson's pediatric cardiac surgeon today, Dr. David Bichell. He performed the arterial switch on September 18th. We received a great report. He said that Jackson's heart sounds good and that his incision is healing very well. In fact, he said that, from the improvement in his incision, it appears as though the surgery was months ago. This was great news since there were originally concerns about infections in the incision. That is the last time we'll ever have to meet with Dr. Bichell unless Jackson were to require surgery again in the future.

Good Echo Results

Jackson had his first checkup today with his cardiologist, Dr. Casilda Hermo-Weiler. She is the doctor who diagnosed Jackson quickly after delivery and has watched him throughout the past three weeks. Today, she performed an echocardiogram and was very satisfied with the results. There was a little leakage out of one of his arteries but that's typical after this surgery and she wasn't concerned. His lungs looked clear and there was no fluid buildup around either the lungs or the heart. Tomorrow morning we are meeting with Jackson's surgeon, Dr. David Bichell, who performed the arterial switch. Dr. Bichell will check Jackson to make sure that he's recovering well at this point.

First Pediatrician Visit

Jackson had his first visit to the pediatrician's office this morning. It's actually the same office (Green Hills Pediatric Clinic) where Juliette works as a nurse and where I went growing up. This was just an initial visit to weigh him and check out his basic vital signs. We received some great news: Jackon's weight is up to 9 pounds 10 ounces (2 ounces more than his birth weight) and he's grown another 1/2 inch to 23 inches. For cardiac babies, returning to birth weight is a big step. We were thrilled to see that he's eating well and that his body is recovering.

He's Home!

Jackson was discharged from Vanderbilt Hospital yesterday at 12:30 PM. He and Juliette arrived safely at home and he's now resting in his new room (when he's not crying relentlessly). It's a great feeling to have him home, although it was quickly obvious that life here will never be the same again. :)

Here's a picture of the new family coming into the house for the first time:



And a few of the little guy himself:

Preparing for Home

Jackson's incision is looking clear now, so the antibiotics have been doing their job. Thus, the doctors are beginning to talk about sending him home sometime soon. Juliette and I are going through different types of training (Infant CPR, wound cleaning, etc) so that, when the time comes, we're all ready to leave. Juliette is able to spend the days with him at the hospital and is glad to see that Jackson is feeding very well. He's eating almost three times what they want him to eat during each feeding period. That will greatly help his recovery and keep him getting stronger each day.

Juliette Recovering Well

Well, I must confess that it was difficult for me to even write or talk about Juliette's delivery for a while. However, now that she is recovering well, it's a little easier so I wanted to give you all an update on her too and let you know what she has gone through.

Juliette had an emergent C-Section. I was in the room with her and have never witnessed anything so brutal. Everything was going fine until they laid her down on the operating table. We believe that, at that moment, his head must have pressed against the umbilical chord. Whatever the cause, Jackson's heart rate dropped suddenly. That set everything on fire. Suddely people were screaming, metal instruments were hitting the ground, chairs were falling over. Jackson was stuck in multiple places and three doctors were hitting and pulling to force him out. Her body was tossed up, down, and sideways as I held onto her. She had to grip the table edges to keep her body on the operation table. We later discovered that, after the delivery was over, the doctors left the room and wept together it was so overwhelming for them.

Thanks goodness, Juliette is recovering well now. She's shown great strength through this and is already walking around all on her own (no wheelchair now). She even gets to hold Jackson and feed him at the hospital. It's wonderful to see the two of them, healthy, together again.

Jackson Update 15

Jackson's oxygen tube came out last night and he is now breathing on his own and maintaining healthy oxygen levels in his blood. This means that the surgery was successful and achieved exactly what we were wanting: that his heart can oxygenate his blood by routing it to the lungs and back to the body.

The infection seems to be getting better which is also a very good sign. The doctors plan to keep him on antibiotics for maybe another week. If that completely clears up the infection, they may start to talk about discharging him from the hospital. It will be a great day when he gets home.

Jackson Update 14

Jackson's incision appears to be clearing up, though slowly. Part of it is infected, but we're hoping that continued antibiotics will clean that up. Otherwise, he's doing well at this point. He is reguarly feeding out of a bottle and is gaining weight. After birth, his weight dropped as with many babies, but he also had to go a few days without food which increased his weight loss. Fortunately, he had some weight to lose and he's now back to 9 pounds 4 ounces. At this rate, they anticipate him to weight 50 pounds by October 13. (kidding)

Juliette is recovering well. She is walking around now with ease. By next Friday, she will be able to drive on her own which will make hospital visits easier. We have both spent the night at the hospital the past two nights (Friday and Saturday).

Jackson Update 13

Good news: Jackson was discharged from the Critical Care Unit late in the night and taken to a normal recovery room. The doctors are encouraged by his recovery and he even ate from a bottle. We'll begin spending the nights with him to help with feeding as enough tubes have been removed for us to hold him now.

His incision is still red and swollen. Fortunately, the area around his incision has somewhat cleared, but the doctors are still wanting to see the redness leave his incision. He still doesn't have a fever which is a good sign. If his incision does clear up, he should be in good shape to come home in a couple of weeks.

Jackson Update 12

Although Jackson is still in stable condition, we're a little disappointed with the news tonight. His incision is still red and swollen. They're concerned about it still being like this three days after surgery. Therefore, he'll end up staying in the hospital longer than originally planned. We don't know yet when he'll get out. This was the first setback (and disappointing news) after surgery: we're praying that his incision will clear up and that no infection will spread to his body. He doesn't have a fever, which is a good sign, and they're performing more tests to see if he might be getting sick.

They also tried to insert a new line today which was unsuccessful. They wanted to get a new catheter to his heart to help give him more antibiotics. They worked on him for about 5 hours total, so he's fairly bruised from all of the attempts. For now, they'll leave his old lines in to apply the antibiotics. But he is still doing well overall, which is a blessing. His heart is beating fine, his lungs are breathing well, and his other internal organs seem to be returning to normal.

Because he is stable, however, they are moving him out of the ICU. He'll be with other cardiac patients at Vanderbilt. Because he's not on 24/7 watch in his new room, Juliette and I will need to begin spending the nights in his room to help with feeding. Thus ends our nights of rest :) However, the most important thing is that he stays healthy and that no infections spread through his body.

Jackson Update 11: September 21

Jackson is still recovering well. They have removed a few more of his tubes and have discussed possibly moving him out of the ICU tomorrow. However, they are concerned that the chest area around his decision is quite red and hasn't responded well to any antibiotics yet. They'll continue to monitor that closely and have requested the surgeon come inspect it this afternoon. However, that is currently the only concern which is certainly better than what it could be. The doctors are optimistic by his recovery and how quickly he has come off of medicines (from 8 IV medicines yesterday to 3 today). As long as his incision clears up, he should continue recovering very well.

Jackson Update 10: September 20

Jackson is now improving very well. Today, they took him off of his ventilator and stopped giving him blood pressure medicine. Both of those changes are signs that his body is recovering well and getting back to its normal processes. They are slowly removing the various tubes and lines in his chest, arms, neck, and legs. Today, they removed one of the two large tubes coming out of his chest and a few of the other small lines. Incredibly, the doctors think the could be in a regular hospital room (not intensive care) sometime tomorrow.

A Week After Birth

It's been a week now since Jackson was born. This has been the most difficult week of both my life and Juliette's. In the midst of the fear and chaos, however, we've been absolutely amazed at the outpouring of support and love from people all around this country. As we begin to settle down for the recovery (still a long road ahead), we can start taking the time to thank all of you. I can not express how much your friendships have meant. We could not have made it through this past week without all of you around us.

To continue the good news, Jackson was taken off of the pacemaker this afternoon. Also, his kidneys are starting to function again (they shut themselves off during major surgery, thinking that the body has sustained a major injury). If he continues to progress at this rate, they may be able to take him off of the ventilator tomorrow.

Also, I'm able to share some pictures with you now. These were taken during the days between his two surgeries when he was most "tube and wire free."

Jackson Update 9: September 19

Well, praise the Lord, Jackson is doing well at the moment. He is responding just as the doctors expected at this stage after surgery. His heart has been running via an external pacemaker until his heart rhythm "re-synchs" itself. It appears that his heart is already doing this, so they may turn off the pacemaker today. His blood pressure is also a little low, but that typically happens about 12 hours after surgery so it was expected. Also, they were able to close his chest after surgery which is what we were hoping for.

He is actually looking pretty good too: better than I had expected. Although there are countless tubes and wires coming out of him, not to mention a very large scar running down his chest, his skin color is still normal and his eyes/face are not too swollen. He started to open his eyes a little bit today, but they'll make sure to keep him asleep so that he won't feel the pain from his surgery. Hopefully, today will be a relatively quiet day and he'll continue to recover.

Jackson Update 8: September 18

He's out of surgery! Jackson's surgery finished up after 6 hours and he is stable and recovering. The surgeons feel that the surgery went very well. They are watching a few of his coronary arteries in case they're too weak: that's a typical problem with these surgeries. They'll monitor Jackson closely for the next 12 hours as that's when most complications occur. However, he is certainly over the biggest hurdle and we're incredible relieved after this long day. The strong hand of God guided this day and we're so thankful for all the support we've received. We want to thank all of you for helping us through this time and praying for this boy. We'll keep you up to date over the next several days as Jackson recovers. Assuming everything goes well, he'll hopefully get to come home in 2 weeks. It will be a great day.

Jackson Update 7: September 18

Jackson has 30 minutes left on the bypass machine which runs his heart and lungs (as they stop his heart during this surgery). He is still in good condition. After this portion has completed, they will determine whether to seal his chest or leave it open while swelling and fluids around the heart subside (could be open a few days).