HI! Thanks for stumbling across my blog. I am a wife and a mother. That sums it up! I am lucky enough to be able to stay at home with my three little ones! I have a school aged girl, Lil Miss, who loves everything pink yet thinks Spiderman is super cool! My little boy, Lil Man, is so "boy"! Mischievous in everything he does, even if it's stealing kisses! And our baby, Lil Sis, who is the such a cuddler but I have a feeling she'll be the one who gives me grey hairs!
Our family has had some major obstacles to overcome. Lil Miss was seemingly healthy until the Dr started noticing a drop in weight gain. At her 18month check up we decided to see a nutritionist about the topic. 3 days later she developed "lucky pneumonia", as we like to call it now. The x-ray technician saw that her heart was enlarged and we were sent to the ER immediately. It turns out her slow weight gain came from a hole in her heart- something no one saw coming! Her diagnosis is Complete AV Canal. The next few weeks all seemed to run together and so unreal! Her cardiologist known as Dr Doom and Gloom, said things to us as new parents that no parent should have to hear ".. she could be too old.. lungs might not be able to adapt.. well then it would start a honeymoon period.." Thankfully, all of her preliminary tests came back great and within 6 weeks of first diagnosis she was scheduled for open heart surgery. She did amazing! Her Drs were amazing! Heart is repaired and she is doing fantastic!
Now, our little guy! He is my son to teach me patience and to slow down (or run and keep up somedays!) We found out we were pregnant with him while our daughter was recovering from surgery. Great timing right?!? Pregnancy went well and we took all the extra precautions with his little heart. All of his cardiology tests came back great (before and after birth) But then we got the call from the hospital- "looks like his newborn screening test has come back unclear for a metabolic disorder"- more tests were needed. SERIOUSLY?! More blood work was done and sure enough our little guy has a rare metabolic disorder, MCAD. We were explained that his body can't digest or store fats (medium chain fats) properly or at all. So basically he can't fast for a long period of time or else his body will start breaking down on it's self. This is a newer disorder. The first documented case was just from 1985- after the little girl died of what they were assuming was SIDS (sudden infant death syndrome) The specialists have no idea how many SIDS babies really were MCAD or similar disorders instead.
There definitely was some scary moments when MCAD was being explained to us. But we are lucky and it's manageable! As an infant he needed to eat every 3-4hours. By 1 we were able to move up to 6-8 hours. At 3, he was able to move to 12 hours without eating!! Yes, we were exhausted from waking up to feed him in the middle of the night, but a healthy child is worth the lack of sleep!! If you are reading this and you are another MCAD parent.. remember not all MCADers are the same. Some are more severe than others and some Drs are more conservative than others. We have chosen to drive out of the county, to a specialist team that we feel so comfortable with and who are on the conservative side. We'd rather go slow with pushing his fasting limits than end up in the hospital because we went too fast.
You'd think with 2 medical children and what we've been through that we'd be done having kids right?! Well, after Lil Miss turned 5 and Lil Man was turning 3, we got realizing that something was missing and the reason we didnt have a third was the fact that we were scared. Fear was running our lives and our choices. After months of praying it was clear we should stop fearing and see what happens. You know what happens.. We were blessed with Lil Sis!
I often wondered what it would have been like to know about Lil Miss' condition from day 1. How would it have changed things. We were able to experience that with Lil Sis. She was diagnosed with transitional AV Canal at her 24 hour old tests. Dr Doom and Gloom was in our room again to give us the news. She will need surgery to repair her two holes and the one valve. It could have broken us down, but I think we've found a way to fully enjoy her! She will have surgery March 2014 to repair the one hole- yes I said one. By the grace and amazing healing power of God, one of her holes has closed.
In the end our family works out pretty well. We have three special children that need to be on special diets and it just so happens that a "heart-healthy" diet is what they all need! Heart-healthy diet just means 30% or less comes from fats. And we try to stay away from the bad fats. We try very hard to get our children to actually enjoy fruits and vegetables! I don't know many children that enjoy artichokes, but mine do! Because we've introduced it to them and don't give them many other options. If they don't want to eat the broccoli served with dinner than they can have leftover green beans. I mean, don't get me wrong we have had dinnertime battles! I'm not always Super Mom, but I'm trying and I wanted to share our journey with whoever wants to listen.
Enjoy!
