Isabelle is now officially 5 months old and I have been meaning to write this post for 3 months now. As you can tell I haven’t really had too much time for the blog lately. I’m just trying to keep up with the weekly gratitude and book review. But lately I have been a little bit more active on the omphalocele support Facebook group and it reminded me that I’ve been meaning to write this blog post. Maybe someone will come by this going through a similar situation and feel comforted. So here is my top 5 list of things I would tell myself if I can jump into the Delorian and go back 1 year:
You can do this, you and your family are stronger than you think
During our pregnancy I remember being consumed with the idea that Isabelle’s condition would be more than I can handle. Was my marriage going to be affected? Would my older child feel neglected? Will we have financial troubles? All of this seemed insurmountable. Being a mother of a toddler and newborn seemed stressful enough, how would we ever manage? Well pregnant self, you can do it. It’s hard, it’s tiring, but you can do it. Yes, there will be days that you and your husband will fight. There will be days where it feels like you are losing your mind. There will be days where Addison is sad because she feels like little sister is getting all the attention. There will be days where you gotta skip the latte since you already had 5 in a row and it’s getting expensive. There will be days that are medically hard. But nothing will happen that you can’t handle, or your family can’t handle. You are a mother and a wife, you will pull through.
Everything is possible but not probable
During our first appointment with our geneticist he went through the probability of other defects or chromosomal defects. All the odds were incredibly low. But all I heard was “she might have a birth defect. Maybe a lung defect. Maybe a chromosomal defect.” Then I saw online other babies with giant omphaloceles and I started to think “she’s going to need a trach. She is going to need a g tube. She’s going to be in NICU for months” Everything in my mind was either a possibility of an eventuality. It made me so anxious. Then Isabelle was born. She only had the omphalocele defect. She needed nasal prongs only for a couple of weeks on and off. She was breast feeding within a week. Her heart and lungs are strong. She had skin closure within 4 months. There are so many things that I worried about that never happened. Of course it is possible, and even fair to say that the probability is higher to have associated defects. They have happened to others before. But there were also many babies similar to Isabelle that I ignored in favour of worrying about all the possible issues. It is something that a lot of energy was wasted on. Some things did come true, like the fact that she has trouble gaining weight and has reflux. But the array of possibilities is so huge and there really is no way to prepare yourself for each one. By all means, familiarize with what might be possible, but try not to think of each complication as an inevitability. Take it one day at a time. Each and every child is different and you can never road map her recovery before she is even born.
Isabelle is still just a normal baby who just happens to have her liver outside her body
All through my pregnancy I wondered if I would bond with my baby with an omph as much as I bonded with my eldest. I wondered whether or not I would miss out on special baby bonding time while she was in hospital. I also worried that she would be sickly and fragile so I would have to be extra delicate with her. Well guess what? Isabelle is a normal baby. She cries. A lot. She has reflux, like many babies do. She poops and pees. She sometimes gets sick. She loves being held. She hates being put down. She smiles at me and pulls my hair. And predictably, I love her just as much as if her liver wasn’t outside her body. Yes there are differences. For a month she lived in the hospital. For four months we had to change her wound covering everyday. Now she wears baby spanx. She has no belly button. But none of that changes the fact that she is just a baby that can do all the things that babies can do. Her liver is just outside her body right now. Don’t panic. She can do anything. You guys can do anything.
Right before I had Isabelle, hubby and I found the omphalocele Facebook support group. (Search MOO — Mothers of Omphaloceles). After I gave birth to Isabelle a very nice mummy from Edmonton wrote me an email to offer up support. It took me a long time to reach out and talk to these ladies. I think that if I had reached out earlier in my pregnancy I may have been a bit less anxious. Since then I have witnessed ladies helping each other out on the Facebook page. It is really cool to see wave after wave of mummies and daddies join the group and the ones who have just been through similar situations help with words of encouragement and unique advice. Many of my friends and family reached out with offers to help as well. As previously discussed, I am no good at asking for help. I am much better at it now but I wish I knew how much relief it can be when others help out by cooking a meal or bringing over groceries. Reach out. Accept help. Make your life a little bit easier whenever possible.
Take care of yourself
When I look back at my pregnancy I can now admit I probably was consumed by anxiety. I stopped exercising. I was eating junk. I always felt tired and overwhelmed. Don’t get me wrong, I didn’t fare much better during Addison’s pregnancy. I hate being pregnant. I just get fat and unwieldy and emotional. But I think if I had taken better care of myself I would have been able to handle the anxiety better. After Isabelle was born, I started going to yoga again, I did a baby and mommy barre (not bar) class and I took part in David Suzuki’s 30 day challenge. Being outdoors everyday and going to classes once a week really uplifted my spirits. Taking care of yourself physically will help you mentally and emotionally when you get better.
I am not sure I would have listened to my future self when I was pregnant. But this is what I would have said. Also, I would say this: It gets better. You’ve got this. It’s worth it.