I suppose I was overdue to have a breakdown.
We have been through a lot this past week, and honestly, I felt I was doing fine up until today. We've had a lot going on, but there has always been something for me to do. On Dominic's birthday we met about a million different doctors that would be helping him for the next few years of his life, we met counsellors that would help us through the process of coping with all of his difficulties and travel for surgery and stuff. Then there were the plans we had to make when we found out that we would have to travel to Edmonton for his surgery earlier than we initially thought. Then once we got to Edmonton we had a lot to do to get settled and manage the situation here, get to know in and around the hospital. It seemed like that all sorta wrapped up on Friday, we got settled in the hotel, got groceries, got an official date for Dominic's surgery... Being busy helped me keep my mind off of everything that is difficult. If I had a job to do, I was distracted enough to not really think about how my son is going in for open heart surgery in less than 2 days, or that I am over 500km away from my home and my daughter...
I actually think that it sorta started to hit me last night. I had been waiting all day to hold Dominic but something always got in the way. X-rays, blood work, nursing shift changes, etc... So when I finally got to hold him it was about 10pm, and it was somewhat of a process to get him into my arms. He has so many tubes and cords and wires coming out of him right now, I couldn't really move around that much. I determined that I didn't really like holding him when he was like that because I was worried I would accidentally pull something or move wrong and it would hurt him. Plus he is sedated, so I don't get to see those big beautiful blue eyes because he is too tired to open them. So I feel that it's not best for hold him right now, and I have no intention of asking to do so until right before he goes for surgery on Monday.
Then today his Oxygen and Carbon Dioxide levels were all off, and somewhat unpredictable, so they needed to put him on a drug that would paralyze him so that they had more control over his breathing and thus, more control over those levels. This drug can cause problems with his gut and so they need to feed him though his IV, and would be doing so until he goes for surgery.
Taking a step back, it is important to note that Dominic was not being breastfed or fed from a bottle prior to this. He has a feeding tube because he often needs to be sedated (and is until after surgery now because of this paralysis medication), so he can't bottle-feed. So I had been going in routinely (6am, 9am, noon, 3pm, 6pm, 9pm, and midnight) to hold the syringe for his feeding tube so that I could somehow be involved in the job that my body really aught to be doing for him. A job that almost all mothers get to take part in. I also like schedules and routines, so it gave me a time to go in next.
Now, I don't need to go in for those times, and I don't feel that there is anything I am doing for him now. I hold his hand, or stroke his forehead, but I am not really DOING anything for him. I am not taking care of my baby. There is nothing for me to do.
The other thing that was devastating, is that I decided to skip the 9am feed this morning because I was SO tired. I went in for the 6am one, but could not get myself out of bed for the 9am one. I figured I was going to go in for rounds anyway, I would just hang around until his noon feed and make for an extra long visit to make up for my skipped feed this morning. But instead, I found out at rounds that his noon feed wouldn't be happening because of this drug. So I skipped the last opportunity I had to feed my son before his surgery in exchange for an extra hour of sleep. It was NOT a good trade.
So I hung around for a bit, and tried to ask some questions, but I kept tearing up. I kept it under control and was able to avoid any tears actually falling, but as soon as Dominic's nurse asked me if I was OK, I broke. I bawled. I told them that I missed the last chance I had to feed him, and that now I couldn't do anything for him. And I wasn't sure he would even know I was there if he was all sedated and paralyzed. I was now useless to him. His nurse and doctor assured me I was not, but I still felt like it. I left there at about noon, and came back to the hotel to cry in bed for a few hours.
Basically, I started to have everything catch up to me. Without a routine or something to really do, I started to think about everything. I started to feel the gravity of Dominic's situation, and I started to feel sorry for myself. And I still kinda do.
Really, all I want is to go home. I want to be with my son with his heart all healed and perfect. I want to hang out with Rosalie and be there for her routines. I want to be at home with my family like most people are when their babies are a week old.
But that's not possible right now. Maybe in a couple of weeks...
Huge hugs, mama. You are doing great! You are his world--feeding or not, he knows your voice. He knows your smell. Your presence comforts him. Stroking his hand IS HUGE!!! Trust me that there is research to support all of that. Just being there gives him his world. You are doing so, so great. Thinking of you nonstop. Hoping you have some good books that you can read out loud to him--if that feels right. I'm sure he will love it, and know you are there. You are so, so strong. Lighting a candle in Halifax to send courage! Meg
ReplyDeleteHang in there momma! I know it is hard to escape the feelings your are having of being of no use to your precious son. Hang in there, moms are naturally worried sick for their child's well being. Speaking from experience with a baby who has special needs, I know that no amount of encouraging words and support can change the way you feel when you have a little human who is a part of you, lying in front of you with full trust placed in someone else's care that is not your own. I want you to know that, you are a great use to him right now. Ask all the questions you need to the doctors and take on the support. Being there for him is the best thing you can do right now, he can feel your strength! Push through with positive energy, prayers and the support of strangers, your hard work and deep emotions will be what helps your son thrive through this dark, difficult time. We are rooting you on and we are here for you . Your cries will be answered and your son will come along with a stronger heart because of the bond you have with him.
ReplyDeleteLike you said, it was bound to happen at some point. This is a situation that is enormously stressful and it's amazing that you'd held it together for so long before this.
ReplyDeleteBut you do have to give yourself a bit of a break. Don't be so hard on yourself. You are dealing with a lot more than most mothers ever think of. At least your crash came after he started those meds and not when he was awake. For now, just let yourself rest (physically and mentally), and trust that the professionals are looking after them as best as they can.
It will be better soon.
Love and happy thoughts!
-JMcQ
Annie,
ReplyDeleteYou just have to be there and talk to your little boy. Babies are "warriors" and are strong and can go through difficult situations, like this one. My daughter went to hospital during her first 3 weeks and had all the tubes... I know it is a hard and long time. You are going to be exhausted and you will pass through different feelings. But I know that you can do it. Just being with your baby is the best thing you can do and your baby will feel and know it. Talk to him, read him stories, put a tee-shirt with your smell on it, sing him a song... Just be there. Now the doctors are going to do their best. I send you a lot of energy to go through all of this!!
Courage.
Emma
Thank you so much for sharing everything you have with us. Try to be gentle with your soul- you have every right to want all of those wants!! Who wouldn't? <3
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