~Our Story~
Psalms 27. 13-14
I would have lost heart, unless I had believed
That I would see the goodness of the Lord
In the land of the living
Wait on the Lord;
Be of good courage,
And he shall strengthen your heart;
Wait, I ay, on the Lord!
Upon arrival at CHOP, Jaden was taken to the Cardiac Intensive Care Unit
From my hospital bed at St.Peter’s Hospital, I spoke with Dr. Jack Rychik, his cardiologist. He explained our options: to perform the Norwood surgery on Jaden immediately or wait and continue to give Jaden prostaglandin until he got bigger. Waiting to operate could lead to an increased risk of illness. However, although operating immediately still posed a threat to Jaden’s life, we opted to operate without delay.
Back in Philadephia, doctors informed my husband that because of Jaden’s size, his survival rate had dropped from 90% to 50%. Astonishingly, we later found out that he was the 3rd smallest baby to have undergone this procedure. Pastor Mike Stokes, of Calvary Chapel of Philadelphia, accompanied my husband through this arduous plight. He prayed for our strength, our continued faith and for the survival of our little boy. Miraculously, immediately after the Pastor left the hospital, my husband received the news that Jaden’s operation was a success. PRAISE GOD. Although he was out of surgery, he now had to be monitored closely for infection and complications.
Later that day, I arrived at the hospital. Finally, I was able to see my little boy. This was very traumatic, he was so small, yet so many tubes and machines were attached to his tiny body: a respirator, chest tube, leads on his head to measure seizures, IV lines, catheterization lines, not to mention all the medication he was on. We felt so helpless, not able to comfort our little boy. During my pregnancy, I had decided I wanted to breastfeed. Unfortunately, at this time, I could not. However, I was able to pump and store the breast milk for when he was ready to feed. This was one way I felt I could help him. The doctors and nurses were also very supportive and encouraged me to do so.
Jaden began to do very well, my little trooper! We would wait daily for the doctors to do their rounds and give us a progress report. They all could not believe how well he was doing for such a small baby. The doctors were so incredible and it was always reassuring to get a thumbs up from them. Jaden’s only setback was that he had excessive levels of bilirubin, which caused jaundice. This was treated by giving him extensive phototherapy.
(bilirubin lights) Two attempts were made to excabate him, take him off the respirator. Actually, the first time, Jaden tried to self-extubate, but that did not go well. The second time, he was extubated to cpap, a tube was placed in his nose that would give his lungs positive air pressure. This would assist him with breathing on his own.. He was in CICU for what seemed like 13 long days and finally discharged to their Step down unit (6 West) on August 29th.
Although we were excited about going to the Step down unit, because it was a step closer to going home, we were frightened at the same time. In the CICU, he was watched over by a nurse 24 hours a day. A nurse usually tended to about 2 infants. At 6 West, it was very different. The nurses were assigned to about 4 babies, and would do rounds every couple of hours. The babies were being monitored from the Nurses’ station. At 6 West, we also started his bottle feeds. In CICU, he was receiving his feeds through a NG tube. Many children with HLHS have feeding issues, the sucking motion is such a challenge because their little bodies have to work so hard at it. Thankfully, our little soldier surprised us once again and began feeding from the bottle well. We had tried breastfeeding, but he would have to work harder at sucking from the breast than the bottle and so we decided that we would continue his feeds by giving him breastmilk through the bottle. Before being discharged from the hospital, he would have to drink about 30ccs. While we were approaching his release from the hospital, Jaden had another setback. Unfortunately, his oxygen saturation levels began to drop at certain times, mostly when he would feed. I recall an instance, I was feeding him, bottle in one hand, and oxygen mask in another, and the doctor came in and grabbed him from my hand and yelled, “Jaden” as he shook him. I was mortified. His sats had dropped to 40% and he was becoming very cyanotic. After some tests, it was determined that Jaden had Central Apnea, this was not a Cardiac issue, but a Prematurity issue. This occurs because the central nervous system is immature and the baby cannot regulate his own breathing normally. Due to the Central Apnea, he was also experiencing Bradycardia, a decreased heart rate. Jaden was prescribed caffeine, a medication given to stimulate the respiratory system, and was also put back on cpap. About one week later, we were released from CHOP, but before leaving we had to take a CPR class and had to be instructed on using an apnea monitor. The monitor would be attached via leads on his chest and would record chest movements and heart rate, relaying the readings to a hospital apnea team. When Jaden would have an absence of breathing of at least 20 seconds, the monitor would set off a loud beep which was very frightening. In addition, Jaden was prescribed Digoxin, for his heart, Lasix, for reflux, Caffeine for his central apnea and baby aspirin.
By the Grace of God, we did not come across any problems when we came home. Besides a lot of crying, due to the Caffeine he was on, and some alarms going off, it was nice to be home with our little boy, living as normal a life possible. Before going back for his second surgery, Jaden experienced his first Thanksgiving, for which we had so much to be thankful for, his first Halloween, Christmas, and Valentine’s Day. In February 2003, he was dedicated to the Lord at Calvary Chapel of Old Bridge. We have been blessed tremendously with our little angel. He surprises us everyday with his strength. We know that our ordeal is still not over, but at this time, we just want to enjoy every day with our OH, SO PERFECT LITTLE BOY!!!
To be continued. Stage 2/Bidirectional Glenn