How was everyone's weekend? Here in Minot we are still covered in snow, as a matter of fact we got another 3-4 inches over the past 2 days. Like we need more snow! Needless to say it's hard to get in the mood for spring and Easter. I haven't even started decorating for Easter yet! It's this week! I also still need gifts for the kids. Usually we do an Easter brunch the Saturday before but this year we won't. Nia's friend is having her birthday party that day and honestly, I haven't been very focused on my domestic duties lately, lol. I tend to have one really productive day where I have the motivation to clean and organize and if someone doesn't stop me, even rearrange. And then that's it for at least a week. I don't know, my motivation must have left with the birds when winter came... At least getting my new vacuum cleaner helped a little. I get excited when I get new gadgets for the house. Yes, I even get excited about a vacuum cleaner! But no worries, it doesn't take long before it becomes a chore again and I'm like "meh".
However, I have been REALLY motivated about my little job! I say little cause it's just 8 hours a week, although I spend more hours on it, brainstorming, researching, etc. I just got done with my online training for the ND Parent to Parent Program. This program was designed for "new" parents of a child with a disability to find support from support parents of a child with the same disability. The new parent can contact the P2P coordinator and they will match them with a support parent who then reaches out to the new parents. I seriously wish I had known about this program when we first found out about Isaiah's stroke. Thankfully, I found CHASA shortly after but having a parent from the same state to talk to would have been helpful. The preparations for the NICU family support group are in full swing too! We're working on a support group for parents (and family) of babies who are in the NICU. From our own experience in the NICU we've learned that it really makes a difference if you have someone to talk to, to ask questions, who has been in your shoes. We've seen so many parents struggle to talk to their babies, struggle to touch or hold them. It's not easy, you dream of that perfect birth experience (really, there's no such thing, unless you think excruciating pain is perfect!!!) and the perfect baby. Seeing your baby hooked up to all those cables and machines cna be so devastating! I remember my husband was so scared to hold Nia because he was afraid to break her, tiny as she was. With Isaiah it was an entirely different scenario. With him being on medication, there was little to no response from him and for some time we were not allowed to hold him and could only touch him with protective gear. As weird as it sounds, I thank God for the experience we had with Nia. It somewhat prepared us for Isaiah's time in the NICU. Obviously, we had different worries this time but we knew how important it is to touch and talk to your child.
For a first time parent in the NICU, this is much harder. Many feel left alone in coping with the situation. Yes, there are the NICU nurses but they're taking care of the babies. If the NICU is full they may not have as much time to talk to you about how you feel, they have to focus all their attention on the babies. For some parents this is frustrating but that is the NICU nurse's job. To take care of those precious babies. Other parents just find it hard to talk to doctors and nurses. They may feel silly for asking certain questions, some feel intimidated or feel like they won't understand. Sometimes it's just easier to talk to another parent just like you. Someone who has been through it, someone who won't think you're silly for asking a million questions. Someone, who has shared your worries, your fears, your guilt. That's what this support group is for. In addition, it will provide you with helpful information about services, programs, etc. When your child is taken to the NICU, a lot of the information brochures the hospital staff hands you don't get looked at, the things they tell you that don't pertain directly to your child's health go in one ear and out the other. Your one and only focus is your child's health, everything else becomes secondary. Parents don't necessarily have to come to this group right from the start. They can come whenever they're ready. Some topics may not be interesting for them then since we'll talk about becoming a parent in the NICU, how to care for your baby while s/he is in the NICU and how to cope with going home before baby amongst other things. Honestly, that was one of the hardest things for me! "Leaving" Isaiah, with Nia I was in the hospital til we brought her home. They gave me a room and I saw her every 2 hours (also cause I had to nurse every 2 hours). I remember the staff telling me it's ok if we want to go have dinner and spent some time together, Joseph and I. That was impossible to me! She was there for only a week and the hospital had rooms available at the time. With Isaiah, I felt so guilty for leaving him, once home, I didn't want to do anything but prepare for when I went back to the NICU to see him. I knew he was in good hands but as a parent you can't help but feel somewhat guilty because you feel it is YOUR job and not somebody else's to take care of your child. But there was no way I could've stayed at the hospital and this time we had Nia, who we had to care for as well.
I seriously hope I will be of help to the parents and the families. This is a huge responsibility so while I'm excited I'm also nervous. Next week will be the first time I'll be talking to the parents, eek! I have a lot to do til then!!! By the way, this week will also be Isaiah's speech evaluation. I know he'll be fine but I still want to find out why he out of a sudden stopped saying the words he's been saying for 2 months! As a mom, I can't help but worry about him. It's not that I don't trust that God is in control, He's shown me more than once that He is, but it's just part of the life of a parent. Let's hope it's nothing and I'm wrong, lol.
Back to Easter, what are y'alls plans? Have you decorated yet? Hopefully, I'll get that done tomorrow! I'll have both kids home since Nia has a cold. Wish me luck!!! I'll post pictures when I'm done, if I get done that is!!! Alright, I meant to write more since it's been a while AGAIN, I KNOW, but I'm T.I.R.E.D!!! So I'll
Love,
