We took a little 'hit' this morning (it's a Tuesday again, and last Tuesday was the really BAD day). My husband mentioned in his previous post that Lucas had a fever last night of 101.5 degrees. The really sweet picture of me holding him last night was great, but during the course of holding him, I realize quickly how sick he was and how uncomfortable he was. Not only with the tube in his mouth, but with how hard he was fighting to breathe, and the rumbly sounds coming from his lungs did not bode well. By the end of 20 minutes of holding him, he was clearly uncomfortable, and was turning away from me. We quickly replaced him in his bed, re swaddled him, and tried to make him as comfortable as possible. The nurse suctioned his lungs and out came some white goopy stuff. He had cough a few times while I was holding him. I helped change his diaper (first time changing a boy's) since it's easier to manage without that UAC line from his umbilical cord. And tried to calm and make him comfortable. Even with an extra dose of morphine (I know, it's really upsetting to see him needing so much morphine), he was still irritable. After we settled him down and fed him, I mentioned to the doctor on call he had a fever and they immediately took action. Blood, urine, and lung secretion cultures were taken, and he was put on a broader spectrum antibiotics. Tomorrow morning we'd know more. All we can do now is wait. I went to pump.
The next morning, we met with the doctors at the 8:30 am Rounds. We were told his breathing was more labored so they adjusted his VENT settings up to help him breathe. His bilirubin count is up, so they are administering a medicine to help with that (can't remember the name at the moment), he's being given benedryl to help with his presumed itchiness (high bili counts have been known to case itchiness) and irritability. Now we wait. We wait til this afternoon to see how he responds to the change in the vent settings, the broader spectrum antibiotics, the culture results from this blood, urine, and lung secretions, and see if he's more comfortable.
My husband and I are down. This feels like a step back (perhaps several steps). He clearly doesn't want us to bother him. The nurses keep noticing that he's increasingly 'feisty' and irritable when they do their routine care on him. It's sad to see him like this. I'm feeling like I'm losing any connection or relationship I had with him while he was in my womb. He has more of a relationship with the tube in his mouth than me at this point. And I have more of a relationship with the breast pump. And depending on how long he stays in the NICU, I feel so helpless--will he even know us as parents?
Mean while my other child at home needs us too. My parents are taking very good care of her, but she is starting to rebel. How do I try to be a good parent to both? It's also Christmas time, and one of my favorite times of the year. But it's so hard to be cheery and merry--I had imagine doing all the fun holiday things as a happy family: finding a great tree, decorating it, baking cookies and decorating them, you know, the festive things we do this time of year. How can I take the time to do these things with a sick child in the NICU? But I hate that my older child is missing out on these things too. I don't even have presents for her or Lucas to put under the tree, let alone a tree.
I know the road to recovery is a long one, one with many steps forward and some back. I'm glad he is off ECMO. That's a huge step forward. I guess my strength to keep moving forward is pretty low at this point after realizing we have yet a steep mountain to climb. It's exhausting. Keep putting one foot in front of the other. Must. Keep. Going.
Jessemine, our hearts are with you and your family. Your sweet babe knows you are there and hears you and feels your presence. He is so lucky to have you - and you will bond and know him just as you do your daughter. Erika
ReplyDeleteOh, the NICU is such a hard place. They say it is "two steps forward, one step back." I guess today is one step back for little Lucas. We had a lot of setbacks and bad days in the NICU too.
ReplyDeleteI remember being very sad that I could not hold Lily until she was about 10 days old. I wondered if she would even know me. And then when I'd hold them, they'd have "As and Bs" (have you learned about those yet? apneas and bradycardias). And they'd have to take the girls away from me because they were having difficulty. I felt like I was a bad mother because I was causing the As and Bs. But they bonded with us just fine, and are now totally well-adjusted toddlers!
But you are doing an excellent job by being there so much and talking to him and trying to hold him as much as he'll allow. He WILL bond with you, and he knows who you are. He knows your voice and your touch. Just keep pressing on, and things will get better and easier as time goes on.
Is there a parent support group at the NICU there? I got a lot of support and ideas from the other parents at the UW NICU support group. I bet they'd give you ideas about how to handle a toddler at home too. I wish I could give you advice on that, but we didn't have other kids at home when our girls were in the NICU. I do remember my neighbor mom in the NICU who had a 3 year old at home. She would spend half her day in the NICU and half her day at home. The rest of the time, the grandmother was in the NICU with the baby. Maybe you could spend more time at home now that Lucas is more stable? Just a thought.
This is so hard, but you guys are doing an amazing job!
I remember a time when you danced the lead role in The Firebird to a full auditorium while suffering from the aftereffects of chicken pox. That takes a strength and courage which you've always had in great quantity.
ReplyDeleteLove you, J.
Thank you guys for all your encouragement and great advice. We've been trying to see our daughter at least once each day, either here at the hospital or at home when we refresh our laundry and gather resources. There's a great playroom and a swimming pool here that she loves to play in and she even likes some of the food at the cafeteria. Visits here also allows my parents a chance to visit Lucas while dad and I have some special time with her. Little Lucas is so unhappy now, and is really sensitive to touching him too much (though he seems to like having his feet held and tucked in), and to sound. We want him to be as comfortable as possible, but not to agitate him too much. We're just do ready to be parents
ReplyDeleteJess, you are a strong mom, the best mom I have ever met. You are doing an excellent job with little Lucas. You can be down sometime because you need a break. Don't be too hard on yourself. Faith, Hope, Love.
ReplyDeleteJess, you are the best mom! I wish there was something more I could do to help. Do your parents need help with Tessa? Please let them know they can call me whenever they need anything. Will they be bringing her to story time tomorrow? We miss all of you!
ReplyDeleteThis isn't the same, but Emma didn't really like to be held as an infant. You fed her and put her down. No backrubs, no rubbing at all. She liked having her feet held. It was hard because when she wasn't well she didn't want to be touched, but still wanted us. Somehow, we got it worked out. I loved her, just didn't do a lot of cuddling. She grew out of it. I don't know if this ramble helps, but you will get to know him. It says a lot about a baby that he is feisty and fighting for his life and you are there to stand by his side.
ReplyDeleteJessemine, Ben and I are thinking of you and your family; we're sending positive thoughts and energy your way. I'm praying for strength and a speedy recovery for Lucas. Take care, be well.
ReplyDeleteLeah and Ben
He knows both your voices and Tessa too. Even if you are not talking directly to him, he hears you. You're a great mom, so trust your instincts with Tessa. Sometimes toddlers really need some together time and sometimes moms do too. So if you need an NICU cooking baking break then so be it and try too enjoy it at least somewhat (not sure if that is possible but I am guessing Tessa can turn on some mighty charming magic).
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