Recap

Thank you all for your kind words, love and prayers. The last few days have been incredibly hard for us as we recovered from the scariest day that either of us have ever experienced. We have done a lot of crying for our son because he can't cry for himself. We have asked the doctors and nurses millions of questions because little Lo can't ask for himself. And we have held each other, because we can't hold him. It is hard to put into words all that we have been through, where we are now and where we are headed but we will try. I apologize in advance for the length of this post - part is to share with everyone that is following our story, but mostly it is to have something to show little Lo down the road, so he always knows how amazing he is.

On Wednesday, we thought we had lost him. Lalo had started back to work on Monday and I had been commuting into Baltimore every morning. Lalo had been at work for only 15 min or so before he got a call from our dr that he should come in because they saw something on the brain ultrasound and we had to make some decisions. As we found out, little Lalo had experienced bleeding between his brain and skull, which was pushing his brain to the side and creating brain damage. As I think we mentioned previously, the biggest risk to being on ecmo is that they have you on heparin, a blood thinner, to prevent blood clots. Tuesday night before we went to sleep we called and found out that an IV line in his leg that they had been unable to use for the last few days was being blocked by a blood clot. In order to prevent this from becoming an issue, they needed to increase the heparin, which ended up contributing to the bleed in his head. The only way to attempt to drain the hemorrhage would be to remove him from ecmo. This was very risky, since the last time he had a clamp test, he had not done very well. Really we had no choice though. We had him baptized while we waited for the surgical team to prepare. They also gave us the opportunity to hold him, which is seldom done. A baby is almost never moved while they have cannulas in their neck and it took a team of 7 or so people to move this little 8 lb angel. While it was something we had wanted since he was born, it was very scary as his stats quickly started fluctuating and they needed to take him back within 30 seconds. It then was a waiting game of worrying if he would remain stable while they waited for the blood thinner to diminish enough to proceed.

As Lalo wrote the other day, the drain did not work. That night we had to make the decision to send him into the operating room. We were told that this was probably one of the riskiest operations that they do at this hospital. If he became unstable at any point, there would be little they could do because he was no longer on ecmo support. We were basically told that the outlook was "grim" but it was our only hope.

Little Lalo is the strongest little guy you could ever imagine. He survived the surgery and has remained stable up to this point with little support (compared to what he was on prior). His kidneys have started to function a little better and we can even tell that he is less swollen. In our minds, he made the decision for us that he was ready to be off ecmo and start doing all the work for his heart and lungs on his own. The extent of his brain damage cannot be predicted. This is frustrating to not have answers but really it does not matter.

It's a little bit strange to us on how much his medical focus has shifted in the last 3 days. The surgery to repair the hernia is no longer of immediate concern. It will most likely be a few weeks before they would want to put him through another surgery. They want to give him a chance to heal from brain surgery before they put him through any additional stress or trauma. We met with his team of doctors this morning (the attending for the PICU, 2 neurologists, the surgical fellow and our nurse). We asked many questions, but the most important answer we got is that from a cardiac and pulmonary (heart and lungs) perspective his prognosis is pretty good. This is very encouraging to us. Several times over the past few days I have asked the surgeon, the attending and the fellow if they thought little Lo would have made it if he hadn't gone on ecmo. Everyone of them has told me that without a doubt, he would not have survived. We are so lucky to have him and look forward to our future with him.

We can't offer enough thanks for all the help we have gotten over the last few days. It is amazing to see how much people care about us and our family. We feel truly grateful and blessed. From what everyone tells me, we have half the world praying for little Lo and I'm pretty sure that's what has helped him to be so strong.

Love, Lalo and Sarah

Sent from my iPhone