I cannot thank everyone enough for the outpouring of support for our family. It never ceases to amaze me how blessed we are to be surrounded by such amazing people! After I wrote the Scary Mommy blog I realized that there is great power in being transparent and enjoy connecting with other people all around the world. With Eli’s latest surgery behind us, I thought an update was long overdue! I plan to blog more frequently because it is a great way to keep everyone informed and it is certainly therapeutic for me. I did put my Scary Mommy post on my blog page as well so if you never go the chance to read it – take a look! “Why I No Longer Care When People Call My Baby Ugly.” To say that it changed my life is an understatement.
First things first… Eli is doing great! For those of you that don’t know what has been going on I should provide a bit of background. Eli was born 6 weeks early and had a growth restriction my whole pregnancy due to a marginal cord insertion. I was high risk most of my pregnancy. I’ll spare all the details but we had scares for many different things from hydrocephalus to down syndrome. When he was born his face was so swollen from a very rough delivery we didn’t see much wrong. As the swelling went down we knew something was “wrong” (I hate that word) and we were transferred to the MUSC NICU. This could be a whole book but to make a long story short we don’t know what caused Eli to have the issues he has right now. We did genetic testing to rule out any significant syndromes that would require further care. We stopped testing after that point because we decided it didn’t matter and it was taking a toll on us and on Eli. At 6 weeks Eli had a surgery to lift his left eyelid because he couldn’t open it. He was also getting regular MRIs because he had bleeding in his brain from his delivery. The bleeding healed itself and the eyelid lift preserved his vision. Wins! We knew there would be another big surgery down the road and that was supposed to be this past Monday.
For months we were preparing for Eli’s big eye surgery. The plan was to redo the eye lid lift to fix any drooping and make it look better cosmetically. He was so small when he had the first we knew that was part of the plan. At the same time they were also going to work on his right eye. The tear duct system is not working properly and he has some webbing that lifts it to an abnormal angle. It of course does not look like it should but it is also effecting him in ways such as delaying walking because his peripheral is not very good (think blind spots). He has always had a bump where his tear duct is on that eye and everyone also assumed it was the tear duct.
A few weeks before surgery they decided to do a CT scan and an MRI to prep. When they did this, it was revealed that Eli had a hole in his skull above his eye which was allowing brain membrane and tissue to come down. That bump was coming from his brain. Ummm freak out moment?! The eye surgery was cancelled and the neurosurgery was scheduled instead. Luckily we were going to be working with the same pediatric neurosurgeon that we worked with in NICU and love him.
Of course one of my first questions was how did we not know this?? Well, it wasn’t always there. Apparently Eli’s bone was abnormally thin above both his eyes but that defect usually corrects itself by thickening over time. He actually had no bone at the bridge of his nose when he was born and now he does. The body is an amazing thing folks. One eye still looks good but the other became eroded essentially due to the pulsing and pressure of the brain. This allowed brain tissue to make its way down to his eye. They used to tell us to massage his tear duct because they thought that would help the bump. We were massaging his BRAIN?? The neurosurgeon thought that was funny and assured me it was fine…
Cut to surgery day (pun intended). We anxiously waited and started getting nervous as it seemed it was taking a little longer than expected. The doctor finally came out and he said “Well, that was interesting.” Blahhhh! Once he got in there he saw that the brain membrane had ruptured once before and healed itself. We never even knew it. He said it could have even happened when I was still pregnant. When that scar was created, it acted as a tether pulling down the brain tissue. He said think of it like a hernia. The tissue got itself out but couldn’t get itself back up. Good grief… He was able to fix everything by putting the tissue back where it goes and using a sugar mesh to keep it in place. He also patched a hole in the brain membrane that was allowing fluid to leak. The idea is that now the bone can heal itself and that sugar mesh will dissolve within 18 months. We have decided that Eli will one day love telling his friends that he has a scar because his brain was coming out… And it will be true!
So, ya. That’s what has been going on the past few weeks! Eli is so strong and we learn so much from him every day. In fact, he proved his strength by fighting his bandage so much that was supposed to stay on until Friday that it came off on Tuesday. That of course caused me to panic because we are trying to make sure that membrane doesn’t rupture again causing fluid to leak out. That would be another emergency surgery – no thanks! Luckily the amazing neuro team at MUSC has calmed my nerves and taught us what to look for just in case. Thanks E, like your Momma needs another thing to be neurotic about.
Once Eli is all healed up, like 3-4 weeks we will schedule the eye surgery that was originally supposed to happen. That is the one we are looking forward to (for lack of a better term) because it will be life changing for him and we are hopeful we can just move on after it. He will have more surgeries in his life, but hopefully not for years after this one!
He is a happy, healthy, amazing little 18 month old. He is doing well developmentally. He is very slightly behind the curve but nothing that anyone is too worried about. We have opted to get him evaluated for free in home physical and speech therapy through the state just to stay ahead of the curve. Like all parents, we just want him to have every possible opportunity!
Lastly, I can’t leave out sweet baby Abraham! He is doing so well. He is huge! He just turned 5 months and is now wearing 9 month clothes. He loves Eli and is so clearly working hard to be able to get mobile and play with him! He is just as smiley and giggly as Eli and to have our house filled with the laughter of not one, but two sweet babes makes us blessed beyond belief. Brian and I are hanging tough! We are tired, emotionally and physically. But we are also so grateful to have each other and walk through this crazy amazing life with our heads up and know that we always have each other to lean on. Pretty great, huh?
Until next time…
The Swacks
Being Swack 