*
*
Just last week Ben was rounding the final bend and into the home stretch. I mean, Big Ben was moved to an open crib, he was nursing on a regular basis, and he even passed the car seat test… my little man was really pushing for that ticket out of the NICU. Our hearts were set on bringing him home towards the end of this week and Pam had everything ready for his homecoming. Everything was perfect….but there was a setback.
It turns out that Ben was not responding to the meds they gave him to close the hole in his heart after all. His heart rate began dropping about three days ago and it hasn’t stopped since. The doctors had told us the murmur was gone, but when they performed an echocardiogram on him yesterday, not only did it confirm that the hole was still there, but that it is a very large hole (the fact that it is very large is probably why they couldn’t hear it any longer).
At this point they are stepping the meds up as a last ditch effort to get him to respond, but the doctors are not real optimistic that it will do the trick. There’s a big chance that Ben will need to have an operation. Pam and I are a bit shaken by this turn of events.
To easy our minds a bit, the doctor put us in contact with a mom in Carbondale, Sheryl, whose child had to go through this operation. We called her up and she agreed to meet with us. We took an afternoon off and drove up there. She was really helpful.
“I was very scared,” she told us. “Haylee was not even a month old and was already having major surgery? I couldn’t wrap my head around it.”
“Same here,” Pam said. “It’s hard seeing my son go through that. I keep asking, ‘why him?’ you know?”
“I know. I was just in your shoes a couple of months ago. This decision was by far the hardest I had to make. That being said, it was also the best decision I made. Haylee is a new baby.”
“I know it will be the better option for him, but...it’s hard not to think the worst, that he could be one of the small percent that doesn’t make it,” Pam said teary eyes.
“Did they give you an option to wait to do the surgery?” I asked.
“Yes, they did. But I decided to go through with it.”
“What made you decide?” Pam asked.
“I didn’t want this condition to hinder her later on. I wanted her to grow up normal, you know? I didn’t want her to be the kid with the condition.”
Pam and I picked her brain for a while longer and she definitely eased our minds. It helped us come up with a game plan, which is to wait and see if the meds will work. If they don’t, we will go on with the surgery.
This decision was made with a heavy heart.
I’d be lying if I said the stress isn’t getting to us….. It is. As it is right now, Pam and I go to the NICU every morning and afternoon. And it’s getting harder and harder to balance our time around, work, home, and the hospital. I thought that once Ben arrived, things would calm down. I was wrong. The stress just shifted.
Pam is really struggling with not having Ben home (separation anxiety). The day she was discharged was very, very emotional. She cried all the way home. I remember my heart being so tightly knotted in my chest that I lacked words to comfort her. Guilt had us both in a choke hold.
I know Pam doesn’t say it, but I know she blames herself for all that’s happened. I know she cries at night. I kills me that there’s nothing I can do or say to remedy it. Talking to Sheryl helped, but I wish she would talk to me. Nowadays, our conversations don’t go beyond Ben and Cece. And I miss her, like, really, really miss her. She is my soul mate, she’s everything to me. I’m always scared she will reach her breaking point and will come to me and say, “Jim, I can’t do this anymore.”
I know I can’t push her to talk to me, but I’m here for her. I hope hasn’t forgotten that.
Did I ever tell you that Ben has her mouth? He also has her nose.
I’m typing this (one hand- I’ve become a master at that) while Benny is curled up on my chest, inside my button-down shirt. It turns out that the most effective way to raise his heart rate is to do a skin-to-skin hold. I hadn’t held him like this since he graduated from the isolette to an open crib. He is a little bigger now (a whopping 5 pounds) and he moves and stretches his arms and legs a lot more.
He is back with the nasal cannula and because he is sleeping more since they up-ed of the meds, he also has the feeding tube in his nose. Our hope is that he comes home soon, but more importantly that he comes home when we are 100% certain that all his issues are resolved.
**
I planned for this post to be a little longer, but it’s been about 3 hours since I last wrote the sentence above. The machines Ben was attached to began beeping and a sea of nurses was around me in a span of a few seconds. They pulled him away from me and it was like they were ripping my heart out.
I didn’t know what was going on and I panicked. A few hospital personals had to escort me out of the NICU room. Yeah, it took a few of them. Enough about that…
Turns out, Ben’s breathing rate dropped and his oxygen levels were dangerously low. They had to intubate him.
He is not lying on my chest anymore. He has so many tubes, wires, IV's that makes it impossible for me to hold him. All I can do is kiss his fuzzy head and tell him over and over how much I love him and that I can't wait for him to get better and come home.
I called Pam, but not until I knew everything was okay. She is on her way here. She stayed home because our eldest chill bug has a bad cold, along with a nasty fever that persisted all through last night.
My thoughts are scattered all over the place. I don’t know what’s going to happen. The doctor wants to operate on him now (within the next 24 hours). We are having a meeting with the cardiologist as soon as Pam gets here. I don’t really know if I’m mentally prepared to deal with that.
Pam’s coming down the hall right now and oh boy, she has Cece draped over her shoulder- not good. She looks like what I think I look like right now.
I have to go.
-Jim
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© 2006-2023 More Than That | Skin created by Kali
© 2006-2023 More Than That | Skin created by Kali