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Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Monday, July 20, 2015

#9months9tips medical momma version

Hurray!!! Asher is such a fun baby and his whole six weeks of yummy means we are snuggling and smooching on him constantly. The only down side is, he ends up smelling a little like kid breath from all the smooches his siblings deliver.

I was asked to share 9 tips about pregnancy from American Recall Center #9months9tips
While I am not an expert on pregnancy AT ALL. I have just had a baby, all the while Alex got his new heart and MayLee is still dealing with her NEHI and Tethered Spinal Cord Syndrome. So I think it is only appropriate to suggest how we survived. Here you go!!! 
#1- Use your village- When they(who ever "they" are) say it takes a village to raise a child. It truly means a small village of friends, relatives, church members, school staff, medical staff, and even strangers who are willing to step up and help you. Most people want to do something tangible. LET THEM!!! If you feel stressed about having someone else wash and fold your undies..get over it, they wear undies too.
#2-Organize the madness- if you are a pregnant medical momma chances are you have tons of doctor appointments, therapies and regular life things. Get a planner of some sort and write it out. Take that little planner/bible with you everywhere. I planned meals a week in advance in mine just so I didn't have to think. I even wrote out when I assumed meds would need to be reordered so I could order when ready. MayLee is on oxygen and I have to make sure we have enough supplies on hand. I write down what supplies we like too, so I have everything in one handy spot. I love the Mormon mommy planner.. There is a version that doesn't have the scripture references and Mormon quotes for those not of that faith. I highly suggest it. I also am sort of obsessive about to do lists. That means I can see what needs to be accomplished and cross it off as it gets done. If you are a pregnant medical momma and don't make lists, try it, it will change your life. 
#3-Jot it down-in my fantastic planner, there is room for everything my pregnant brain can't think of. I even call it my brain on occasion. You will forget, possibly seconds later, so write it down. 
#4-Take a mommy time out- if you feel amazing during pregnancy.... that is super.....(lucky)! If not, and can't take time from doing meds or vitals or a feed.. Or the bed got fed instead of the kiddo... Schedule a time out. You need to rest. Even if it means you clean up later and snuggle someone while reading a book. A funny thing for me, a quick mental time out, a quick picture. People will not believe you survived and neither will you. 
#5-Find someone to vent to- I am pretty sure if there is something called prepartum depression I had a nasty case. I love the end result of pregnancy, I would do anything for my children. I am just one uncomfortable, short tempered lady. There were a couple of people who really understood that and let me talk to them. Then I would pull up my big girl panties and move forward. Venting may have saved me. Sometimes when we are under medical stress with our other kids, plus we don't feel well ourselves just telling someone alleviates the pressure of it all. 
#6-Every move of the baby or lack there of is a worry and it is valid to feel that way- I have had my world rocked nearly off its rocker more than once with my kids, plus I have been discouraged by miscarriage. I had a doctor say those feelings of worry are not abnormal. I could have hugged her. If those feelings did get a little out of control I would sit down and make a mental list of what I could and could not control. For some reason that helped. Some things are just out of our control. They aren't my fault, they are just going to happen no matter what. 
#7-Follow up with Maternal fetal medicine or your medical child's specialist- I know first hand that the medical world is expensive. I know that sometimes diagnostic test and procedures just aren't in the budget. But if a specialist suggested a test we found a way to foot the bill. With Asher, I saw MFM and we had a fetal echo. I wanted to be prepared, I also wanted to rejoice if he was developing perfectly. Each night before the tests I was a mess, but I was so relieved after each one. The amount of comfort was worth every penny. They can't catch everything, NEHI can't be diagnosed in utro, but knowing his heart looked good made me feel so much better. Take that list of questions with you too. There is currently a study that shows risks when using Zofran while pregnant. Many friends have asked if I was aware of the possible chance that it causes heart defects. I don't get as sick with my boys, so I didn't take it with Alex, but I did with my girls. I looked into this because I wanted confirmation that I didn't cause Alex's heart defect. I read almost every article I could online and then spoke to MFM. It seems that I couldn't have caused the defect. I would have liked this Zofran resource from the Recall center. It is just one more tool in my tool belt of knowledge. 
#8-Don't forget daddy-Dad's are working hard to make sure everyone is comfortable....with like a house, and food, and so you can take care of your kids medical issues. They really appreciate a play by play sometimes. There are lots of dads that get left out. I have done that on more than one occasion. Take a few minutes and teach them about meds and such so in a pinch they can help. Plus, they are usually the most willing to go get food or a special treat.  So call, text or write a love note while you are sitting at all those doctor appointments. 
#9- Rejoice in the child- I remember when I was pregnant with Eden, my number 3 baby. Before we knew her gender people would often ask what we were hoping for and I would say that I didn't care as long as the baby was healthy. Alex in his sweet little voice looked at me and said "but, I was sick did you still want me?" And the answer is YES. A million times yes. We wanted a baby. Being healthy sure has its perks and watching a little tiny baby hurt and be in pain isn't fair or fun. But every moment I have with my children is even that much sweeter. 

There must be more tips out there for medical moms who are expecting. If you have a great tip leave it in the comments. 

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