Oliver's NICU Fund
Donation protected
The past couple months have been quite the journey. After 82 days in the NICU, Oliver is finally coming home! He has been through so much already, and our strength and faith have been tested more than ever before, but through it all, God is good. As I continuously said throughout the past couple months, “Oliver is in good hands, both God’s and the doctors’”. Thank you for everyone’s love and support who have known and reached out. Even though he is now coming home, Oliver still has a long road to recovery. Here is an overview of his journey so far...
Oliver was born in an emergency induction at 36.5 weeks, weighing 4lb 10oz. We knew he was small, but his APGAR scores were good and everything seemed great, until it wasn’t… over the next 24 hours, Oliver’s blood sugar dropped rapidly and he completely stopped breathing 3 times. The next day, he was transferred to St. Louis Children’s Hospital…
We stayed overnight in Children’s Hospital for the next couple nights. We met with many different doctors over those first few days and quickly learned that Oliver was having seizures every 5-15 minutes… The neurology team put him on heavy sedation medication to stop the seizing and connected multiple wires to his head via an EEG to monitor the seizure activity. Oliver finally stopped seizing about 5-6 days after medication and monitoring. During this time, Nicole, Oliver, and I were surrounded by family support and love, and were honestly in desperate need of it..
The next couple weeks became even more difficult. We met with neurology and neurosurgery teams to learn that Oliver had bleeding in his brain, specifically intraventricular hemorrhage (IVH) grade 3 and a small subdural hemorrhage. We then also learned that Oliver had hydrocephalus, a condition in which excess cerebrospinal fluid (CSF) had built up in his head, likely due to the bleeding. I started shaking uncontrollably as we reviewed the MRI and ultrasound images of Oliver’s brain with the neurosurgery team. The doctors advised that there was no immediate need for surgery at least, and that they would just continue to monitor his head circumference and ultrasound images. The hope was that the bleeding and excess CSF would absorb into his body and go down on its own.
The head circumference seemed to be pretty steady, but then started to expand. So about 3 weeks after Oliver was born, he had his first surgery on his brain, to remove the excess CSF… The neurosurgery team put a small reservoir in the top of his head, to be able to drain the excess CSF every couple days. After about 2 weeks of draining, Oliver seemed to be doing much better and has never had to have the CSF drained again. This was a huge hurdle overcome and the first sign of hope for recovery.
Soon after that, we began trying to feed Oliver from a bottle. He had not eaten from a bottle yet because of his other issues – he had only been eating via nasogastric intubation (tube in his nose). However, he has struggled with eating from the bottle during each feed and continues to struggle with it even until today. It has been hard for him to get the “suck, swallow, breathe” routine down, gets easily distracted, and gets exhausted from trying for long periods of time. Nicole and I, Nicole’s mom, the nurses, the occupational therapist, physical therapist, speech pathologist, and others have worked with him every single day to try to get better at feeding – some days he was not interested at all, other days he improved greatly. However, he still struggled for so many weeks that we ultimately had to make the decision to perform a second surgery on Oliver…
So Oliver had gastronomy tube (G-Tube) surgery last week, which enables feeding directly to his stomach. We will continue to try to feed him from a bottle during each feeding at home, but then supplement with the G-tube after the bottle feeding. We really hate that Oliver has already had two surgeries, but this has enabled us to bring him home to try to get him into a routine and to feed him at home each day. We will also need to check his blood sugar before each feeding. Oliver will continue to have multiple appointments throughout the next few weeks, including some in-home care and more hospital visits. We are very excited to finally have him home, but also very nervous because of his serious issues.
To all the family and friends who have come to the hospital to be with Oliver and us; to all those who have reached out and shared prayers of hope and healing; and to all of the medical staff that have cared so well for our little boy - thank you, thank you, THANK YOU. We are blessed to not have been alone in this journey and are eternally grateful for the love and support from so many people.
Any financial support you can provide for this campaign will go directly towards Oliver's medical expenses that have not been covered by insurance. Most of the expenses have been covered, but there are still multiple that were not and many upcoming appointments and future expenses. He will require in-home therapy for the next 6-12 months and will have the G-tube for at least that long as well. So if you choose to support, THANK YOU from the bottom of our hearts.
Thank you, with love,
Oliver and family
Oliver was born in an emergency induction at 36.5 weeks, weighing 4lb 10oz. We knew he was small, but his APGAR scores were good and everything seemed great, until it wasn’t… over the next 24 hours, Oliver’s blood sugar dropped rapidly and he completely stopped breathing 3 times. The next day, he was transferred to St. Louis Children’s Hospital…
We stayed overnight in Children’s Hospital for the next couple nights. We met with many different doctors over those first few days and quickly learned that Oliver was having seizures every 5-15 minutes… The neurology team put him on heavy sedation medication to stop the seizing and connected multiple wires to his head via an EEG to monitor the seizure activity. Oliver finally stopped seizing about 5-6 days after medication and monitoring. During this time, Nicole, Oliver, and I were surrounded by family support and love, and were honestly in desperate need of it..
The next couple weeks became even more difficult. We met with neurology and neurosurgery teams to learn that Oliver had bleeding in his brain, specifically intraventricular hemorrhage (IVH) grade 3 and a small subdural hemorrhage. We then also learned that Oliver had hydrocephalus, a condition in which excess cerebrospinal fluid (CSF) had built up in his head, likely due to the bleeding. I started shaking uncontrollably as we reviewed the MRI and ultrasound images of Oliver’s brain with the neurosurgery team. The doctors advised that there was no immediate need for surgery at least, and that they would just continue to monitor his head circumference and ultrasound images. The hope was that the bleeding and excess CSF would absorb into his body and go down on its own.
The head circumference seemed to be pretty steady, but then started to expand. So about 3 weeks after Oliver was born, he had his first surgery on his brain, to remove the excess CSF… The neurosurgery team put a small reservoir in the top of his head, to be able to drain the excess CSF every couple days. After about 2 weeks of draining, Oliver seemed to be doing much better and has never had to have the CSF drained again. This was a huge hurdle overcome and the first sign of hope for recovery.
Soon after that, we began trying to feed Oliver from a bottle. He had not eaten from a bottle yet because of his other issues – he had only been eating via nasogastric intubation (tube in his nose). However, he has struggled with eating from the bottle during each feed and continues to struggle with it even until today. It has been hard for him to get the “suck, swallow, breathe” routine down, gets easily distracted, and gets exhausted from trying for long periods of time. Nicole and I, Nicole’s mom, the nurses, the occupational therapist, physical therapist, speech pathologist, and others have worked with him every single day to try to get better at feeding – some days he was not interested at all, other days he improved greatly. However, he still struggled for so many weeks that we ultimately had to make the decision to perform a second surgery on Oliver…
So Oliver had gastronomy tube (G-Tube) surgery last week, which enables feeding directly to his stomach. We will continue to try to feed him from a bottle during each feeding at home, but then supplement with the G-tube after the bottle feeding. We really hate that Oliver has already had two surgeries, but this has enabled us to bring him home to try to get him into a routine and to feed him at home each day. We will also need to check his blood sugar before each feeding. Oliver will continue to have multiple appointments throughout the next few weeks, including some in-home care and more hospital visits. We are very excited to finally have him home, but also very nervous because of his serious issues.
To all the family and friends who have come to the hospital to be with Oliver and us; to all those who have reached out and shared prayers of hope and healing; and to all of the medical staff that have cared so well for our little boy - thank you, thank you, THANK YOU. We are blessed to not have been alone in this journey and are eternally grateful for the love and support from so many people.
Any financial support you can provide for this campaign will go directly towards Oliver's medical expenses that have not been covered by insurance. Most of the expenses have been covered, but there are still multiple that were not and many upcoming appointments and future expenses. He will require in-home therapy for the next 6-12 months and will have the G-tube for at least that long as well. So if you choose to support, THANK YOU from the bottom of our hearts.
Thank you, with love,
Oliver and family
Organizer
Rob Puett
Organizer
Chesterfield, MO
