I can’t start off this post without acknowledging all the sweet texts, calls, comments and messages we received on my last post. THANK YOU from the bottom of our hearts!! Your love, prayers, and thoughts mean the world to us.Our journey with Ellie was a hard one to write and share, but it’s something we will always treasure. Nick and I have been overwhelmed and beyond humbled to see that our blog post on Ellie was viewed more than 1,000 times. (The fact that actually more than 5 of you read Ellie’s story blows us away!) What a blessing you all are for taking the time to read our story and also the many of you that shared it…Thank you! If our story with Ellie gives hope to one person on how amazing God’s grace is, we are forever thankful.
Shorty after my last post, Ellie was discharged from NICU and our journey home began. Praise GOD! To be completely honest with everyone, It’s still not the journey I imagined. It’s been a tough three months at home and an emotional roller coaster to say the least. Ellie is not a typical infant. Daily, I am reminded of that, and daily, I remind myself to praise the Lord for his amazing grace. I just assumed once we got home everything would be normal; like the life many enjoy daily with a newborn. Unfortunately, having a newborn who is a survivor of CDH (Congenital diaphragmatic hernia) brings a lot of unknown baggage when it comes to their health. This baggage we have gladly accepted and are blessed to have.
Ellie is now 4,5 months old and weighs almost 12 pounds. It seems just like yesterday she was just 31 days old, and we were bringing her home from the NICU. Since leaving the NICU, we have had many doctor visits and tests. We had Ellie home for less than two weeks when we had our first big scare and were told by her surgeon to rush her to the hospital. I was feeding Ellie a bottle and noticed that her arm was turning purple and as I kept watching each limb began turning darker and darker. X-ray’s showed her diaphragm was still in place, stitched to her ribs. Ellie’s heart, respiratory and oxygen levels were all ok as well. Luckily, these episodes started happening at the same time we were already scheduled for follow-ups with her surgeon and cardiologist, so we were able to rule out anything life threatening quickly. Ellie’s episodes of turning purple have not stopped and they are no longer happening just during feedings. She turns purple limb by limb, while holding her, feeding her, while she is sleeping, crying, laughing etc…
In the back of our minds their is a tiny fear of the small chance of Ellie’s hernia coming back one day. So we try to be optimistic and positive, but at the same time be cautious and realistic with her needs as well. In July, Ellie was hospitalized for a few days to evaluate her heart, respiratory and oxygen levels during these “purple” episodes. She was discharged on an apnea monitor. My little purple beauty (rightfully named by her pediatrician) sees a slew of specialist (cardiologist, neurologist, pulmonologists & gastroenterologist) and has withstood several tests to figure out the cause. It’s believed as of right now (pending future tests) that Ellie turns purple due to an immature nervous system. I’m not going to lie, it’s a little alarming when she turns purple. It looks a little scary, but we have faith that God’s in control and that it’s just apart of Ellie’s anatomy. We were told when we met with Ellie’s surgeon at her 2 month appointment that everything normal goes out the door when you have a CDH baby. Their anatomy is not normal (example in Ellie’s case her heart actually sits on top of her liver) due to the hernia. A lot of different things can happen with babies that have CDH, and some babies have more hurdles to overcome than others. Basically, if Ellie is eating, sleeping and pooping then we need to throw our hands up and praise God!
One hurdle that was extremely tiring, emotionally and physically draining as a parent of two is the fact that we struggled so much to put Ellie down the first few months. Sitting in a bouncy seat, car seat or swing has been too uncomfortable for Ellie since her surgery. The pressure on Ellie’s diaphragm in that position seems too much for her to bare at times. Many tears have been shed by all of us. We have spent the last few months holding and holding and holding and rocking a sweet precious baby! We tell ourselves in times we really need a break that God blessed us with Ellie so we will hold her until we drop. 🙂 Over time she has slowly progressed to accepting the pressure and can withstand longer period of times in a car seat, swing and bouncy seat. Last week we hit the jackpot and our arms are leaping for joy. (hence… I actually have free arms to type out this blog..j/k) Nick put together Ellie’s walker in hopes that she might possibly be able to touch the floor enough to balance. We are happy to say Ellie is on cloud nine and so are we! She can stand up straight, be happy and have something supporting her body besides us! It’s a little odd seeing a tiny 4 month old tip toeing around the wooden floors in a walker, but here in our house we are all dancing and screaming, “Go Ellie it’s your birthday…Go Ellie….” you get the point. 🙂 She might start walking before she is able to do a lot of things, but progress is progress, people!!
Another set back has been Ellie’s development. She has high muscle tone in her hands and weak muscle tone in her trunk. She is also having trouble with always leaning towards her right side as well, which is the side her hernia was on. This is all expected with having CDH and especially being in the NICU for 31 days. Ellie started the Easter Seals program last month. Every other week we have an occupational therapist and a physical therapist come to our home to do therapy with her. We were told early on in the NICU to give Ellie time. She’s a fighter, and she will get caught up. Those words are so true, because time has made a huge difference in our journey with Ellie. Everyday she amazes us. Even though the last few months have been so incredibly busy with Ellie and having doctors appointments after doctors appointments ( We consistently have averaged at least one appointment a week.), we wouldn’t trade our life for anything. God has taught us so much through it all, and we are blessed. She is our miracle and these hurdles we face are so minor. In the whole grand scheme of things, these hurdles are nothing compared to what many others face daily!
As I reflect back on the last 4 months, I can’t say it’s been an easy road. It is far from what I imagined. Things are appearing to be getting better, and Ellie is getting stronger and stronger. There have been times that the devil has tried to tear my faith down, and it’s been so hard getting through each day. I wish I had some super power and could honestly tell you all that I am incredibly positive 24/7 (which I try to appear to be on the outside) and don’t throw a “why me God” pity party, but it’s not the truth. I’m human. During the tough days, I look into the eyes of my two precious children (whom both have rare health disorders) and see hope, love, God’s faithfulness and his grace. I then stop throwing my pity party, tossing cheetos or chocolate in my mouth and instead bow my head and pray. Thank you God for your many blessings! I am blessed!!
“The Lord is my strength and my shield; my heart trusts in him, and he helps me. My heart leaps for joy, and with my song I praise him.”
Ellie’s looks have changed so much since birth. We can’t figure out who she looks like the most. She looks like Nick a lot, but my sister sent us this pic below and now we aren’t 100% sure?!!!. This is me at 6 months.