I was speaking with a friend the other day who has been through the ringer medically with one of her children. At first she didn't quite know how to deal with the weight of it all and sought advice from her priest. "Well, you will just find your new normal" he told her. And so we do.
Since my 18th week of pregnancy with Steuart I knew that we were facing a long road ahead of us with many unknowns. The baby was less than half baked and already had some pretty serious issues that I have explained in a previous post. Since that time it has been a game of waiting. And waiting. And more waiting.
We FINALLY after two delays had our appointment at Children's Hospital of Alabama in Birmingham. We went up last Monday and went right in to have a CT Scan with contrast of his chest to see what the mass on his left lung had done and whether or not we would be having surgery. The last few weeks of my pregnancy the mass had not gotten larger or smaller- it had just stayed the same. Poor little Steuart had to have two IVs run because the first didn't take the way they needed. I think it was worse for me than it was for him.
After they took the pictures they needed we went downstairs to meet with our pediatric surgeon, Dr. Anderson. Obviously we were nervous and anxious but ready to hear FINALLY what was going on with our baby boy.
He informed us that the mass was about 20% of his left lung. The feeder vessel they found towards the end that goes from the lung to the aorta is still there. The diagnosis is still a CCAM/ BPS. BUT......when they were able to see more detailed pics with the CT they also found a second vessel that hooks around to the right lung. The surgeon has never seen this before. He called on several members of his surgical team- none of whom had seen this either. The CCAM diagnosis is rare- only 1/25-35000 pregnancies. The BPS hybrid make it even less common and now the second vessel super rare- obviously if they have never seen this.
So, April 25 Steuart will have the lower lobe of his left lung removed. The surgery will take longer than anticipated due to the second vessel. They don't totally know what to make of it yet and will know more once they get in his chest. He will have a tube in to drain fluid and that will cause him some discomfort and pain. The average hospital stay is 4-7 days but could be as many as 10. Hoping that will not be the case with us.
Since the lungs regenerate until around the age of 6-8 he will eventually have two full lungs. Dr. Anderson said that although he may never be an olympic marathoner, he should live a completely normal and full life. He will be able to play just like a normal child and do normal things as he grows up. We will need to be careful with respiratory illnesses because those can be problematic at first but otherwise he will be ok.
So. Now we work on the new normal. Trying to find a good balance between caring for Steuart and making sure Hunter is getting the attention he needs as well. I don't want him to feel ignored or any less important. We will figure out a way to be in Birmingham and Mobile at the same time and learn how to care for a newborn with medical issues.
The good thing is that Steuart made it here and we have him and are able to care for him. It will be hard I am sure because they cannot tell you at that age that they hurt and I am also sure it will be harder on me than it is on him. I hate seeing my babies sick or hurt. Especially when there really is not much I can do to make them feel better. Luckily babies are resilient and he will be just shy of 5 months so he will not remember this.
We have had a wonderful support system in our friends and family. I'm not sure we would have gotten through this so far without them. And, at this point I don't know how I will make it through this with my sanity in tact but I am sure I will find a way. I'll find my new normal.
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