On April 8, 2019, my wife woke me up with water-soaked bed. Her water broke. We rushed to the emergency section of the hospital. Due to non-reassuring fetal heart status (her condition suggests that the baby may not be getting enough oxygen), she had to undergo delivery thru emergency CS. She gave birth to our son, Axel, with gestational age of 29 weeks old (8 weeks earlier than his due date). He was 1,340 grams and considered a low birthweight baby.
Axel gave out a loud cry before he was rushed to the Neonatal Intensive Care Unit (NICU) for close monitoring. His stay in NICU/hospital has been a rollercoaster ride for us – each day is 1 step forward, while some days are like 3 steps backward.
He had to be intubated in the first 24 hrs of his life to help in his breathing. We felt a little triumphant that he was extubated the next day and we were told that his breathing only needs to be assisted through the high flow nasal cannula (HFNC). Each day, we look forward to news of adjusting the settings of the HFNC until it is weaned off. But his body is not ready yet. On the 2nd week, he had episodes of desaturation, tachypnea (fast, shallow breathing), and episodes of apnea (not breathing for more than 20 secs). He needed to be intubated again.
He also had jaundice and had to be on and off photolight therapy, depending on his bilirubin levels. One cause is ABO incompatibility – his mother’s blood type and our baby’s blood type is incompatible which made the mother’s immune system produce antibodies that react against our baby’s blood, hence, the baby’s red blood cells breakdown. It leads to more bilirubin being produced than normal, thus resulting to jaundice.
We learned then that his progress in NICU will not be linear. We learned to let go of our ideals in his progress and celebrate his little victories instead. We also considered “no new news” as a victory for him.
In his 2nd week in NICU, he was noted to be pale and with poor activity. He had bacterial meningitis. He needed to be isolated as the bacteria was strong and infectious. It took a shift to stronger antibiotics and stay of two weeks in isolation, before he was cleared.
Nearing his 4th week in NICU, his newborn screening results showed that he has Hemoglobin H Disease. Upon consultation in UP Manila National Institutes of Health (NIH), we discovered that this is a genetic disorder that he inherited from us. This disorder reduces the production of hemoglobin, and also causes his anemia and jaundice. We are stunned. Since it is genetic, there is no medication that will remediate this condition. He will live with it through his adulthood. We are praying very hard that he will not be dependent on blood-transfusion. So far, he already had 4 blood transfusions.
In his 5th week, with steady progress in his breathing and unremarkable laboratory tests, he was transferred to Intermediate Care Unit (IMCU) of the hospital. We are beyond ecstatic, we are a step away of being discharged from the hospital.
In his 8th weeks, his Pediatrician noted a bulge near his groin area. His ultrasound showed that the inguinal canal of our little one is open allowing abdominal contents to protrude causing a bulge. We were advised to perform a surgery to avoid complications, especially in Axel’s case where we have to carefully consider his blood condition. We agreed to it. The surgery was successful. He was retuned to NICU for close monitoring due to apneic episodes (probably because of the anesthesia).
In his young and fragile state, Axel has already gone through a lot - that most babies (or even adults) are lucky to have never experienced. We feel blessed that despite everything, our little fighter rallied and showed us that he can get through it all. We just have to keep the faith and hold his hand in his journey.
Axel has been in NICU/hospital for more than 11 weeks now. Me and my wife are asking for financial assistance. Our health benefits in our companies do not cover this type of hospitalization. All of the expenses are out of the pocket and we have exhausted all our savings. Any amount that you can give would be very much appreciated. We would like to request to please include Axel in your prayers. Let’s keep his ray of hope shining as he grows to a healthy baby boy.
For pledges outside GoGetFunding, please see the accounts below:
Bank Name: Metrobank
Account Name: Jeejay G. Castillo
Account Number: 292 3 292 64566 0 (Savings)
Bank Name: Robinsons Bank
Account Name: Jeejay Castillo or Joyce Ann Castillo
Account Number: 1039 301 00001811
Name : Jeejay Castillo
Account Number: 0998 996 9728
Name : Jeejay Castillo
Account Number: 09178394803