When you experience a premature birth, you’re bound to be changed. Here are a few things I’ve learned about prematurity…
1. Be patient – I find there are so many situations where I need to adjust and just breathe. Things are going to happen that you aren’t expecting. Relax, go over the situation in your head and then make the best choice for the situation.
2. Expect the unexpected – As I mentioned above things are going to come up, we don’t plan to spend time in the hospital, or driving to doctors’ offices that are two hours away but things happen. An example of this is just this past year, we spent Christmas in the hospital because Kendall wound up having RSV. Were we planning on being in the hospital for Christmas? NO! Did we still make the most of the situation? YES!
3. Scars are appreciated – Scars are something that comes with the territory. Surgeries are very common with preemies and I have learned to appreciate them. Of course I am terrified of how kids will react if they see Kendall’s scars. I was thinking about it last night and came to the conclusion that I will have her embrace them. I want to tell her that if she sits and looks at all her scars she will realize that they kept her alive. We made the decision to have the surgeries because we wanted her to live, they were necessary for her survival, and that in itself is AMAZING!
4. Milestones will come – Delays are common in preemies. I had twins and I remember being so frustrated because their milestones were so different. I then had to step back and realize that Brooke was in the hospital for three months and Kendall for eleven so she has been through more and had more traumatizing events. This makes for milestones to come at different times. The point is to not fear, with time the milestones will come, they may be days late, months late, or even years late but they will come and you will still jump up and down and encourage them to meet those milestones.
5. Therapy is necessary SOMETIMES – I feel like this is a big topic. Therapy is sometimes necessary in my opinion. We went through all kinds of therapy with Kendall and some were necessary and some weren’t. With physical therapy she flew through it, as her body thrived she gained momentum and graduated from physical therapy in no time. Kendall was very slow to learn eating and when we would go to occupational therapy I felt like it wasn’t helping. They wouldn’t do anything different then what we would do at home, I felt like we were wasting our time and money for things that weren’t helping. We ultimately made the decision to stop with therapy and just worked extra hard with her at home and we were successful.
6. Help from the government – The one thing I learned quickly, thanks to a super awesome social worker at the hospital, was there is financial help out there. We learned about Help Me Grow, Supplemental Social Security (SSI), Bureau of Children with Mental Handicaps (BCMH), Caresource, etc. There are so many different companies out there who can help. My advice to you is to sit down with the social worker and ask. There are times when people don’t speak up but there are also times when you are new parents, like we were, who have no idea of anything because let’s face it who expects to have preemie babies? We had no idea of our options and luckily the social worker sat us down and let us know of everything that was out there that could help us financially.
7. Stay calm and positive – This will be one of the hardest tasks for any of you preemie parents, TRUST ME!!! There are so many things that are going to go wrong and things that you are not expecting but the best advice I can give is to remain calm and positive. Whether we like it or not, things will go wrong and we can’t change them so stay positive. They always say your kids feed off your vibes and feelings and I 100% agree with that. Although they may be too young to know what is going on or barely out of the womb, they can sense it so stay positive to they too can be positive.
8. Always be prepared – As I have mentioned a couple of times things are going to go wrong and you will eventually more than likely end up in an ER in some point in your preemies life. Don’t freak out it is just going to happen. Then once you get there they are going to hit you with 100 questions about your child and that is the tricky part. When you have a preemie like Kendall who was in the hospital for 11 months, been through 6 surgeries, 3 broken bones, and several blood transfusions all the doctors and procedures start to run together. In cases like these we have a medical folder that we carry around with us. It is her discharge papers from the hospital explaining everything she had been through while in the hospital and then as things happen while she has been home, we have been adding to it. Every medical thing she has been through is in that file, we call it Kendall’s medical bible because it literally has her life in it. You can hand this to the nurse or doctor and then they can see all the information they need in order to diagnose his/her case and move forward in what they are thinking.
9. Know your child – Kendall has had RSV now twice and I can tell you we have probably saved her life twice. Most kids go through spells and parents just brush it off and then a day or two later their child is back to normal. In a preemie especially one with lung issues you can automatically tell when something is wrong. Their breathing is crazy and you automatically hit that door running because you know something is wrong. Which leads me to #10.
10. TRUST YOUR GUT – When we first brought the girls home, I would tell family and friends we were going to the hospital and they would tell me I was being over protective, BOY were they wrong. Each time we have taken Kendall to the doctor or ER something has been wrong. Call it that mothers intuition or whatever you want but as moms and dads we know when something is wrong. I can tell just by the changes in Kendall’s personality when things are wrong and immediately go into medical, help Kendall mode. With preemies we don’t have much time to react so we have to make sure we are on top of things and prepared for the things that are going to follow. ALWAYS TRUST YOUR GUT!!!