Monday, July 18, 2011

Bringing baby home

I had no idea what I was up against when I brought Maaike home.  Thankfully it is doable, but there are definitely some things I wish I had known before.

1. Before you are discharged a nurse and and respritory technician should be scheduled to meet you at home.  They are not coming empty handed.  They will bring at minimum 4 machines and several boxes and about 15 bags of medical supplies.   When you are at the hospital there is a giant supply room where they hind all the stuff you didn't know you where using and many of the machines are built into the walls of the hospital.  So have someone clear out a closet. And take home any bins they offer you at the hospital to organize all that stuff.

2. Take notes. Amazingly you will remember almost everything you have been told about how to care for your child, but for the 10% you don't remember and for teaching other's how to properly care for your child in the future, you are going to want every detail.  On our first night home the RT didn't leave until midnight.  I was exhausted, didn't take notes, and it would take many phone calls to get some simple information.

3. When we were discharged my husband Sid was still back in China with our other two kids so my mother-in-law drove up to follow me home.  I was therefore alone in my car with Maaike in the back seat.  Her pulse-ox alarmed several times and I found myself scrambling for places to pull off on the free-way.  Don't drive home alone.  I could have easily arranged for someone to be in the car with me, but I had no idea how nerve racking it would be.

4.  Don't discharge on a Friday.  It may seem like the best idea, especially if you spouse or family is more available on the weekends to help you get settled into your new life, but the problem is that many services, yes, medical services, are not open on the weekend should you need the help or have a question.

5. Just say "yes".  If someone offers to bring in meals or help watch your other kids or mow you lawn let them do it.  An old neighbor of ours organized friends in a different city to drive up meals to us for 15 days after we got home.  I tried to graciously decline the excessive service, but my dear friend is stubborn and wouldn't have it any other way.  I don't know what I would have done without their generous offering.  We needed every single one of those meals and all the leftovers to make it through that first month.  If no one has offered such help this is the time to speak up and let your stubborn friends know that you are going to need some help and could she/he please take care of it. Just say "yes".

6.  Take time to just be a mom and not your child's nurse.  This amazing advice came to me from another trach mom Somer.  She said, "Remember that Maaike is not as fragile as she may seem.  She is still a baby and will love baby things.  I had a therapist tell me to stop treating Maisy like a patient and start treating her like a baby and it made a huge difference.  I started to remember what my other kids liked at that age and to really play with her instead of just taking care of her."  

7. Take a deep breath and remember this is possible and you can do it!  This can be such an isolating time, but the fact is that you are not the only one who has or will go through this.  After all, I'm here. 


  1. I love this post, Rian. Do you mind if I share it on kidz? Just email and let me know! ( Thank you so much :) Tara

  2. My son is 3 months old today and the doctors said he should be coming home in the next month. He has a trach and a gtube. I am more nervous about the trach than anything! I am most definitely comfortable doing his cares for it but I also have a nurse with me while I do it. I have major mixed emotions about him coming home. I am very excited because he will finally get to meet his 3 yr old brother that he hasn't gotten to meet yet plus all of his cousins and friends. I am also scared that my 2 youngest will mess with the machines and break something. I am trying to "assign" the older kiddos to special tasks that will help with baby every day. I will also have a nurse 6 days a week but I still feel overwhelmed. I have already gotten a lot of things set up for organizing the supplies and heck, I even color coded totes for the supplies. (Blue trach, green gtube) Reading this made me realize that it is ok to be scared/nervous even though this is not my first baby to bring home. I am definitely more nervous about car rides though. Just trying to think of how I can manage to pull over to be able to do what I need to do when he sets his monitors off. Luckily I have an awesome friend that made me a sticker for my car that says may make sudden stops for child's machines. This will also help when I am pulled to the side and an officer pulls up behind me. There is light at the end of the tunnel and we are almost there.