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We Love You Andrew
Andrew was born on Feb 6, 2009. After a 3 day stay in the NICU for transient tachypnea (he just did not transition well during birth and needed some support to breath.) He recovered quickly. For the next 5 weeks, he was a normal baby. He has always been a laid back, happy guy. He is happy as long as his diaper is clean and he has a full belly!
On March 11th, Nicholas (big brother) was diagnosed with mild pneumonia. During the night on March 13, Andrew seemed to be a little congested. The night of March 14 was much worse related to stuffiness/congestion, some spitting up and coughing. March 15, we took Andrew to the Aurora ER for evaluation. Diagnosed with URI (upper respiratory infection), since he did not display any unusual symptoms during the visit. Monday, March 16, Andrew was more sleepy and did not breastfeed as well. In the evening, he was with daddy while I put brother to bed. I got up and breastfed Andrew, he ate well. After eating he coughed hard and cried/screaming (very unusual for him). Daddy was holding him and trying to console him. Then he stopped breathing......
It all seemed unreal, was he really not breathing? Daddy called for an ambulance. Before they arrived, he had a few episodes where he stopped breathing, kind of snapped out of it with stimulation, breathing again and then screaming with some arching of his back. He cried the whole way to the ER at St. Vincents. We do not live far from St Vincents, so the EMT stated we would go there. This was ~8pm Monday night. In the ER, they monitored vitals, took blood and contacted the pediatric intensivist. He intubated (put a breathing tube in) right away and provided sedation. We really did not understand why he needed a head CT, but they were concerned that he possible had a seizure. The CT results showed a massive brain bleed. Plus he tested positive for RSV. We could not understand why he had this bleed. We were told that per protocol, they would need to report this and ask us questions regarding suspected abuse. Working in a hospital, I understood that this is what they needed to do, but knew we had not done anything to our child therefore naively thought things would be okay. During the night, a drain was placed into his head to drain off blood/fluid. The drain later clogged.
During the morning they put Andrew through a series of x-rays to cover the whole body, looking for signs of abuse, while he was bleeding and fighting for his life. Later morning, I was told that people were here to talk to me. A detective and 2 child protective service workers. I felt ill. We had not slept since Sunday night, had not eaten, our baby was extremely critical and then we were questioned.
he read my rights to me. It was just like on t.v. The detective started off with... 2 doctors say your baby has Shaken Baby Syndrome. I gasped. He said that I should not act like I did not know that. I was questioned for over an hour. He asked everything that happened from the previous days, did we have financial problems, it there any abuse in the home, every detail, etc. He said he has never been wrong in 13yrs and either my husband or I did it. He kept saying, your baby could probably die. He even threw the Kleenex box on the table away from me when it was offered and threw it on the floor when a CPS worker offered it a second time. It was awful. They did not question Les as long, but the detective tried to say that I had post-partum depression. Our stories did not provide what they wanted. They wanted a confession or either one of us to accuse the other. They then spoke to us together, they would have to take the boys away from us. Andrew would be a ward of the hospital and Nicholas would go in foster care. They felt Nicholas was not safe in our care. We had to sign the boys over. They presented it in the way that it was our fault this was happening and if we told the truth, that we could get help. But we did not cause harm to our child. Les convinced CPS to allow his mother to take custody of Nicholas. She could live with us, but to never leave us alone with him. Nicholas had never been away from us and another arrangement would have been so traumatic for him. We were scheduled to be in court the next day. By ~2-3pm, an MRI was finally ordered. The doctor came in and told us, we did not do it.... he had a brain aneurysm. Everyone went trough so many emotions. Children's Hospital in Milwaukee was contacted and transport was set up. We regained custody of our boys immediately. They were wrong. The social worker there offered to tear up the papers and I let her.
If only they had done the MRI right away and did an Ophthalmology consult. So much time was wasted and Andrew along with the whole family endured a terrible experience. After arriving in Milwaukee, Andrew suffered another bleed/stroke. He was then going to surgery that night instead of waiting until morning. At ~2am he had a coiling (titanium coils and glue were used to repair the vessel). At ~5am, he had another surgery, a craniotomy. The neurosurgeon cut the skull, providing the brain more room to swell due to the massive bleeding/strokes. The neurosurgeon also cleaned out some of the dead brain tissue and blood. He was unable to remove it all. Another drain was placed for blood and fluid drainage.
Andrew and the rest of the family went through a lot as he recovered. Day by day was posted on our website to update everyone. Andrew impressed doctors, nurses, therapists, etc. Family, friends and strangers were so supportive in so many ways. We have been so thankful, we thank everyone for anything they have done for us.
Andrew was in the hospital for 3 weeks. Per his last CT (we reviewed the scans with the neurosurgeon), he lost almost 50% of his brain (almost the whole right side, a small portion in the front was spared). His age has been a benefit and he is such a tough guy. If all of this happened in an adult, the results would be detrimental. He takes an anti-seizure medication for now, as a precaution. He needs a lot of therapy as he reaches developmental milestones. Neurosurgeon feels he will be weak on his left side, he has lost the peripheral vision in the left eye and he will have difficulties with fine motor skills ie. learning to write.
They feel that this aneurysm was there at birth. My OBGYN again reviewed my prenatal ultrasound and there is no evidence of it. It was actually a pseudoaneurysm, a vessel was not connected and the brain was protecting it for 5 weeks. His neurosurgeon feels that the coughing/vomiting from RSV caused the aneurysm to finally give causing the massive bleed. The thought is that this is genetic. This is very rare. We will get an MRI done on Nicholas. We should also get tested per his Neurologist.
He will have surgery again on May 11th to do a cranioplasty (plates and screws will be used to put the floating skull piece in place and they will repair holes made during the last surgery.) They project being in the hospital 2-4 days. As long as he recovers well and continues to be a tough guy.
Neurosurgery, Neurology and Rehab will continue to follow him as he grows. He will have home therapy as needed.
At this time, he is doing well for all he has gone through. He moves his left side as well as the right. He has started cooing/talking more. He is a laid back, happy guy. We are so thankful to have him in our lives and pray he continues to be a tough guy through all his therapy to come.
The doctors and staff at Children's Hospital have been very informative, supportive and have been taking excellent care of our little guy.The most important thing we need to remember is how many people prayed for little Andrew, and how God listens to all prayers...With out God and everyone's answered prayers our lives would have never been the way we are today. I'm just not sure how to express the Appreciation to everyone that had Prayed, helped, loved. and been with us through this trying time.COMMENTS?
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