But as we were preparing to leave, another mom came to see us. They had been through this, and their daughter was in the follow up phase - no harness, just check ups. She came in and assured me that as much as this sucked, we could do it, and then she started giving me tips on how to dress and care for Baby.
Last Wednesday I said something I did not anticipate saying anytime soon to our doctor. I said that if he had another family just starting down this road that I would be more than happy to talk to them, to encourage them, to help them in the right direction. He smiled, and assured me he would offer that to another family.
I did not think the day would come, certainly not this soon!
But let me tell you what I will tell that family should I get the chance, just in case it helps.
- Yup, this really, really, really sucks. No question. But it could be worse, you could not be doing this. In most cases, if treatment is required children do not just outgrow this, in most cases it would get progressively worse without treatment. This sucks, but by doing it you are making sure you do everything for your child to have a healthy life.
- Do what the doctors tell you - if you listen, in almost all cases the treatment works.
- Holding is tough, we usually hold baby diagonally across our body with one arm across her back and one arm between the legs. Or her back against our chest with her sitting on one arm and the other across her tummy to hold her up.
- Diapering is hard. As soon as you finish the diapers you have, go up at least 1 size. It is not really needed, but it sure makes life easier. And the trick is to lace the tab through the back strap and them as you pull it through the front strap open the velcro. Yes, you will velcro the diaper to the harness, but that's okay, it gets easier and is easily fixed. And you will have a blow out that gets the harness dirty, just do your best to wipe it with wet cloths.
- Dressing is not as hard as it seems. Go up at least 1 size. Baby was just moving into the 3-6 month size and we went straight to the 6-9 and 6-12 month clothing. Look for generous leg holes (Baby Gap, Gymboree, and Children's Place are great, Carters is tight in the legs) Our baby lived in onesies and socks with a blanket wrapped around her.
- Swaddling is difficult at first. Best advice is to go to the sewing store and buy 1 and a quarter yard lengths. Zigzag or serge the edges. Place baby in the middle of one side with just the head above the blanket. Bring the left top corner and tuck it under the right hip, right top corner and tuck it under the left hip. Flip up the bottom and tuck it around so that the lets stay loose and can kick. Your baby will alternately look like a 3 point star and a triangle. It really works. When baby is awake I swaddle her with her arms out. We went through the coldest months of the year and she was warm. This tip alone pretty much saved my sanity!
- Nursing is awkward at first. Because the knees cannot come in, hold your baby against your tummy and support your elbow with a pillow. This one just takes practice.
- Bathing is tough! Just do your best with a wet face cloth. You can keep your baby clean that way. Watch the folds in the hips and under the knees. Sensitive wipes work best as the liquid is more like lotion so will soak in rather than leave irritation.
- The most important thing I would tell them though is that it really does get easier. Most people will not understand why this is so hard and why you are so overwhelmed, they will not get it. But know that feeling that way is completely honest and understandable. It is never really easy, but it does get easier.
- When you start getting time out of the harness you will have forgotten how to do things "normally". Try not to laugh too hard at yourself, just enjoy it.
- It really could be worse, you could not be doing this, and that would be bad. In most cases this does not go away without treatment, it just gets worse. So try to hang in there, and remind yourself of this as that is what I told myself on all the days when it was so hard I just wanted to quit. When I was so frustrated and overwhelmed and brokenhearted that I just wanted to sit down and cry...not that I didn't cry, I did plenty of that.
- Lastly, I would tell the family to be gentle with themselves. It really is a big deal and you cannot expect yourself to do everything perfectly even once things settled down. This will always be draining, so cut yourself a lot of slack and be gentle to yourself.
1 comment:
I can only imagine what a blessing and encouragement this information would be for another family in the beginning stages!
So glad you are getting to the other side of it all!
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