The NICU. This is one post I wish I didn't have to write. And I suppose I do not really have to, but it is such an important piece to this story, that it felt wrong to leave it out.
We spent 19 days in the NICU. 19 days. Those were the longest 19 days of my life. We arrived there just hours after Bren was born. He was started on a cooling treatment. This treatment cooled Bren's body down but the true intent was to stop any secondary brain damage from happening. Cooling treatment lasts for 72 hours. Bren was scheduled to end this treatment and start warming on Saturday morning. Bren had a rough time warming up and did not actually complete the treatment until Sunday afternoon. 4.5 days. That's how long the treatment took. That's how long it took for me to be able to hold my baby boy. You see, I wasn't allowed to hold him when he was cooling because holding him would allow his body to warm up too much. That was hard. Really hard. I couldn't hold and comfort my boy in the early days of life when he was going through trauma.
After the treatment, Bren had an MRI. The nurse told us that since Bren was having an MRI on a Sunday, we probably wouldn't hear anything till Monday. My husband and I understood that and were ready to wait. Just as we were going to head to bed, the on call doctor and a fellow walked into our room and asked if we had a few minutes to talk. The fellow then asked the nurse to close the door. We knew big news was coming because nothing good ever comes when they have to close the door. The on call doctor told us that a preliminary reading of the MRI showed that much of Bren's brain tissue was dead. The doctor said the neurologist would be meeting with us tomorrow to talk about next steps but this doctor did not want us going to bed without talking to us first. The doctor said he was surprised Bren was breathing on his own because according to the MRI, he shouldn't be. Whoa. How on earth were we suppose to sleep after that? I do not know if we got much sleep. I think we were anxious about the information we just heard and how the meeting the next day was going to go.
For the first time in five days, I left the hospital. I ran to Target and to get coffee Monday morning. I was too anxious to sit around the hospital room waiting to have one of the hardest meetings of my life.The neurologist came in and told us that Bren has severe brain damage. He told us to not expect Bren to develop normally and to expect cerebral palsy. I am pretty sure he told us other things too but I don't remember them. My brain shut off . I was numb. I couldn't think. I couldn't move. I was breathing, but I don't remember feeling like I was. I remember just being.
We made our phone calls and texts to loved ones to let them know what was going on. Drew and I talked about how this was not going to change the joys of parenting Bren, the joys would just be different. We wanted to be sure to celebrate every milestone, no matter when Bren reached them. We wanted God to show up big time.
The love and support that surrounded us was amazing. That love and support followed us through the NICU and continues today. The rest of our time in the NICU was spent getting therapies and resources set up for Bren. They never thought Bren would eat orally and a feeding tube was put in. The doctor literally told me to not expect him to eat by mouth. As a mom, that was devastating. How was I going to feed him for the rest of his life? Everything I had dreamed for my child had been shattered in the first 19 days of his life. Would he ever get married? Would he have friends? Would he ever leave our house or would he be living with us forever?
The day we got to go home was so joyful. We were so excited but also anxious. Our son had been hooked to monitors that told us when something was wrong. They still had some concerns about his breathing when he was sleeping, so they sent us home with a monitor but that wouldn't arrive until the next day. The excitement was far greater than the nerves. I am pretty sure we ran out of the hospital.
We loved our NICU team. The nurses, doctors, specialist, etc. were absolutely amazing. But nothing is as good as being home.
This woman wrote a blog post that explains so well. You can read it here
We spent 19 days in the NICU. 19 days. Those were the longest 19 days of my life. We arrived there just hours after Bren was born. He was started on a cooling treatment. This treatment cooled Bren's body down but the true intent was to stop any secondary brain damage from happening. Cooling treatment lasts for 72 hours. Bren was scheduled to end this treatment and start warming on Saturday morning. Bren had a rough time warming up and did not actually complete the treatment until Sunday afternoon. 4.5 days. That's how long the treatment took. That's how long it took for me to be able to hold my baby boy. You see, I wasn't allowed to hold him when he was cooling because holding him would allow his body to warm up too much. That was hard. Really hard. I couldn't hold and comfort my boy in the early days of life when he was going through trauma.
After the treatment, Bren had an MRI. The nurse told us that since Bren was having an MRI on a Sunday, we probably wouldn't hear anything till Monday. My husband and I understood that and were ready to wait. Just as we were going to head to bed, the on call doctor and a fellow walked into our room and asked if we had a few minutes to talk. The fellow then asked the nurse to close the door. We knew big news was coming because nothing good ever comes when they have to close the door. The on call doctor told us that a preliminary reading of the MRI showed that much of Bren's brain tissue was dead. The doctor said the neurologist would be meeting with us tomorrow to talk about next steps but this doctor did not want us going to bed without talking to us first. The doctor said he was surprised Bren was breathing on his own because according to the MRI, he shouldn't be. Whoa. How on earth were we suppose to sleep after that? I do not know if we got much sleep. I think we were anxious about the information we just heard and how the meeting the next day was going to go.
For the first time in five days, I left the hospital. I ran to Target and to get coffee Monday morning. I was too anxious to sit around the hospital room waiting to have one of the hardest meetings of my life.The neurologist came in and told us that Bren has severe brain damage. He told us to not expect Bren to develop normally and to expect cerebral palsy. I am pretty sure he told us other things too but I don't remember them. My brain shut off . I was numb. I couldn't think. I couldn't move. I was breathing, but I don't remember feeling like I was. I remember just being.
We made our phone calls and texts to loved ones to let them know what was going on. Drew and I talked about how this was not going to change the joys of parenting Bren, the joys would just be different. We wanted to be sure to celebrate every milestone, no matter when Bren reached them. We wanted God to show up big time.
The love and support that surrounded us was amazing. That love and support followed us through the NICU and continues today. The rest of our time in the NICU was spent getting therapies and resources set up for Bren. They never thought Bren would eat orally and a feeding tube was put in. The doctor literally told me to not expect him to eat by mouth. As a mom, that was devastating. How was I going to feed him for the rest of his life? Everything I had dreamed for my child had been shattered in the first 19 days of his life. Would he ever get married? Would he have friends? Would he ever leave our house or would he be living with us forever?
The day we got to go home was so joyful. We were so excited but also anxious. Our son had been hooked to monitors that told us when something was wrong. They still had some concerns about his breathing when he was sleeping, so they sent us home with a monitor but that wouldn't arrive until the next day. The excitement was far greater than the nerves. I am pretty sure we ran out of the hospital.
We loved our NICU team. The nurses, doctors, specialist, etc. were absolutely amazing. But nothing is as good as being home.
This woman wrote a blog post that explains so well. You can read it here
My heart goes out to you, so often, knowing some of the trama you are dealing with. I'm thankful that you two are such caring. loving parents to Bren. I think of what your days must be like. I see our two NICU babies here and try to listen to the stories of their lives, not to compare, but to understand the strength it takes to deal with feeding tubes, tests, setbacks, improvements, hope and love from parents. I wish I was closer so I could be a caregiver relief for you. I have over the years helped a dear friend here with a son with seizures, and the many traumas they have faced. He's an adult but needs more care now because his many seizures have caused brain damage more severe as he ages. The strength of his Mother, working to support him, a husband who can't work anymore because of a brain bleed. This world is full of so many in need that medicine just can't fix. Faith holds you up and gets you through so much, I'm thankful you both have a wonderful support group of friends, and caring Dr. & nurses to give you support. I hope we can visit on our next trip this fall. Love to you 3, you are always in my prayers.
ReplyDeleteThank you for your kind comment. May I ask who this is? That way I can connect with you more about your trip this fall and hopefully arrange a visit!
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