When should I start stressing?

Thursdays surgery is fast approaching and I think my brain is slowly starting to react. I keep getting asked "how are you feeling, no really how ARE you feeling?" or "Are you stressing out yet?". The answers to these questions are fairly simple, I feel very optimistic and I'm not stressed out, yet! I don't want to go in with my head held too high and act like Eli is untouchable. I know that at any second horrible things could happen and life changes in an instant. With that said I refuse to be pessimistic about it either. I trust these doctors and surgeons and have great respect for the work they do.

Rafe and I were talking  and the way we describe Dr. Ilbawi (Eli's heart surgeon) is, he is nothing short of a miracle worker. Obviously he can't save everyone and somethings are beyond his control, but he will never turn a child away. He wants to give all of these babies a shot at life. He gives everyone hope and you just know he will try his absolute hardest to find a fix for these little hearts. I look forward to seeing him this week after Eli's surgery, I may even work up the nerve to give him a great big hug!

Monday, Eli has a 2-3 hour pre-operative physical, should be a ball of fun. They will do blood work and an xray among other tests to make sure Eli is cleared to go for surgery. Dr. Marra the ENT cleared him for surgery last week and said that his vocal cords and throat were good to go. He doesn't want Eli to be intubated for longer than necessary because we don't want to go back to that "scary place" of noisy and labored breathing.

We should be getting a call Wednesday evening to tell us when to get to the hospital for surgery. We are figuring Thursday at 5:30am is when they will want us there since surgery is at 7:30am. Nurse Katie said to plan on a 5 hour surgery, some of that being time to clear out scar tissue, being put on and taken off of the heart lung machine, and about 45 minutes of them watching Eli post surgery to ensure everything is working properly. I may post another blog before then, when I start to freak out :)

We ask that you keep us in your prayers, thoughts and well wishes. Our whole family is grateful for everyone who has kept up with Eli and sent positive feelings his way. Please pray for his surgeons, doctors, and nurses as well! Thank you and Eli sends big kisses your way as well as big smiles!

4 Months Old

As I sit next to my happy smiling baby, it amazes me that 4 months have already passed. Sometimes I feel like there's no way its only been 4 months. We are now awaiting Thursday October 27th, the day of his next open heart surgery. I am so hopeful in all the great improvements we should see after this, but I am not looking forward to seeing Eli all hooked up and sedated. It will be another month where he isn't able to be picked up from the armpits or be able to do tummy time (which he hates).  I would say he is about 90% with the neck control and he is developing right on target. He has such a great personality and loves to smile for almost everybody. 


This next surgery is called the Glenn. What is the Glenn procedure?
The Glenn procedure, the way it is currently performed involves hooking up the superior vena cava to the right pulmonary artery and detaching it from the right atrium. The bi-directional Glenn Shunt is a direct connection between the superior vena cava and the pulmonary artery, diverting half of the "blue" blood directly to the lungs without the assistance of the ventricle. It is usually performed between three and eight months of age, when the lungs mature to the point that blood flows more easily through, and ventricular force is no longer necessary. It is used as a procedure when there is only one good ventricle and more blood flow to the lungs is needed. ( I cut and pasted this). 


A few days before the surgery Eli will have to go in for a pre-operative check up to make sure he is healthy enough to undergo surgery. I have been very good about keeping him away from sick people and being very selective about the places we go. I was informed that right before he has the procedure, Dr. Marra the ENT who took care of him previously will do a broncoscopy to make sure his pipes are good to go. Never mind the fact that Eli was just intubated in order to do the cardiac cath lab. This will happen in the operating room minutes before the open heart surgery begins. I am sure everything will check out fine because he has been doing so well since his last hospital visit. 


Once again my parents will be with us for the surgery, they are a great support team. His hospital stay is expected to be 4-6 days. We may never get a chance to make it into the Ronald Mc Donald house since they usually have a waiting list. I am curious to know what his restrictions will be after this next surgery and how his medications may change. We have a clinic visit this Friday so I may ask and see if they can fill us in a little. He also hasn't seen the therapists in about a month so I'm sure they will be quite impressed with his improvements. Physical therapy always loves to play/test him. We'll see what they say!!!

On a totally different topic, I have been getting very annoyed with complete strangers! People always want to come up to us and ask us how old he is, but first they start with "ohhh he's so tiny". When I tell them how old he is most either say "wow, he's small for his age" or give us a look like Eli is deformed or something. He is small because of his heart problems, and if we tell people that they still look at us all confused. I know most people can't comprehend such a small baby having heart problems. It's all about how you approach us, I get sick of hearing how small he is everyday. I am lucky he is alive, I don't care if he never grows another inch, he's alive!!! If these strangers knew what this "tiny" little guy has gone through in just 4 months, maybe they wouldn't be giving us the stink face. That's my rant!