The Good, The Bad And The Truly Frustrating!

We started off yesterday with some pretty bad pulmonary hypertension. This is pretty typical for CDH babies but one of the most frustrating aspects from a parent's point of view. Andrew was placed on minimal stimulation which means we could briefly touch him or give him a quick kiss when we entered or left the room and that was it. He had Bose headphones placed over his ears to decrease the amount of noise stimulation as well. Any parent would just want to hold their baby and try to make it all better. I know from a medical standpoint, the decreased stimulation is what he needs, but it doesn't make it any easier. Watching and waiting is all that can help.

Andrew also was having trouble keeping up his oxygen levels in his blood. He had a lot of fluid build up (pleural effusion) in his right chest that was preventing his right lung (his good lung) from expanding. His surgeon placed another tube in his chest to drain off this fluid. The scary part about this is patients are on a lot of blood thinners while on ECMO which can make this very bloody. His surgeon wanted to stop the blood thinners for several hours before placing this tube which is also risky because he then has a greater chance of developing a blood clot. Thank God we have a fantastic surgeon and there were no problems!

Andrew has two incisions (one sternal or chest and one laparotomy or abdominal) three chest tubes, one pulmonary artery catheter, one umbilical arterial line, one peripheral i.v., one tube to drain fluid from his abdomen, the ECMO tubes, the breathing tube, the nasogastric tube that drains stomach contents and a tube to drain urine. He is being kept comfortable with Morphine and Versed and is still opening his eyes but does not appear to be in distress or discomfort.

I include some of these details because I want other parents who are facing these obstacles to not lose hope! This journey is not for the weak. It is a long, painful, uncertain and scary road, but worth every part of it when we get to bring Andrew home with us!

Besides the frustration of pulmonary hypertension, another aspect equally painful is going home for the first time without your baby. That is what I did yesterday. I cried as I think any mother would, but then I picked myself back up and actually pumped every 3 hours while sitting in the glider in Andrew's nursery. I found it reassuring and hopeful and it felt like the right thing to do. I know we will bring him home, it is just a matter of time. I was also able to help with one of his dressing changes and it felt amazing to be able to do something for him.

Now for the good! Andrew had a fantastic night last night! His oxygen level in his blood which was only 60's the day before is now over 200, his pulmonary hypertension was at a minimal and they actually weaned some of his vent settings. His chest x-ray looked better this morning- his right lung filled almost the entire side of his right chest, there were no changes with his left lung. The drainage out of his tubes has slowed down and his urine output has picked up! Pumping is going very well- in fact every time we have been completely stressed out by a situation (hearing that he may not qualify for the heart surgery, when they took him to have open heart surgery, when they found the blood clot in his heart that spontaneously disappeared) I have gone immediately to pump over 4 ounces in one sitting! I am hoping that Andrew has inherited my ability to rise to the occasion when under stress and so far it seems that he has! Maybe this has been God's reassuring promise to me that when things look bleak, he knows the final outcome and is still preparing my body for that! The best news yet is that if he keeps up this pace, they will trial him off ECMO on Tuesday!!!!!!! Keep the prayers coming- they are working!

We want to thank you all for the tremendous support you have been for us! We want to thank all the medical staff that has taken such great care of Andrew!!!! We wouldn't be here without each and every one of you and will be forever greatful for your loving and impeccable care!