Eva Update...

I thank you all who continue to check in on us and those who are respecting our needs and not calling. I do want to talk to everyone but have been so exhausted and experiencing a mix of emotions. Please bare w/ me.


I'll attempt to start at the beginning w/ hopes to not jump around too much.


We arrived at the hospital around 6:45am Monday morning and things moved very fast. I mean so fast that I was on my way to the OR at 8:25 w/ my doctor and anaesthesiologist and my nurse had no clue where I was. Boy was she mad at those boys! I was given a spinal...Vinnie barely made it as he was waiting in the waiting room by accident instead of in my room where he should have been. So no one could find him either. He made it though...just in time..."scrubbed in" and all!


Eva was delivered at 8:47am. I saw her for a second...she was extremely blue w/ a low heart rate and needed some assistance to start her breathing. Once she got the little bit of help she pinkened up, her heart rate inceased and she began to cry. Music to my ears! Vinnie held her for 20 seconds, they turned her to me, took off her hat revealing that full head of hair...then whisked her away to the NICU. I then puked several times due to the movement from OR table to recovery bed and was heading back to my room to recover by 9:03. Now that's what I call a speedy delivery.


It only took a couple of hours to feel my toes and move my legs, thank the Lord! We then met w/ our pediatric cardiologist and neonatologist to get a report. At that time Eva was doing pretty well, on some oxygen and not too bad off. The echo revealed what we already knew, the 4-5mm VSD and the mitral valve defect. The MVD is (as we previously thought) pretty bad, maybe even worse than we expected. And another defect was seen as well. Something w/ the aorta flaps where there are usually 3 and Eva has 2 (not sure on the medical lingo for this).


Even though these things were seen, our case was discussed w/ the surgeons at Children's Hospital and we were advised that it was likely that Eva would be considered a surgical candidate for her heart. This was surprising to us because of the T18 but the docs knew our desires and wishes and were treating her as a "normal" baby. So we vouched to have the transport set up and to have Eva transferred to Children's to be monitored and evaluated. We felt that if she couldn't "room in" with me at the hospital that I am in then why not have her where she could get the attention she needed for her heart from a surgical stand point. Now please understand we did not want anything done surgically if she would likely not make it. Then again they would not do a procedure if it were harmful to her in any way but at this point we needed a more thorough evaluation before making such decision.


So on that note, the transport was set up and we went to spend some time w/ her before she was to leave. This was the first time I was really getting to see her. By this time she had gone from the minimal oxygen to the cannula to C-PAP (not a good sign if you ask me). We were able to get some picture w/ our NILMDTS photographer w/out the tubes but only lasted maybe 3 minutes because her color started to change drastically. So our photo shoot was cut short and she was put back on the C-PAP which got her color back, back to where she was at least. I got to hold her for those 3 minutes, not even and then sat next to her for an additional 10 minutes or so.


Right before Eva was ready to leave and in between Vinnie taking our family in one by one to see her she began having greater issues w/ her breathing which required her to be put on a vent. This was upsetting to me, not because they put her on (as we wanted it done if necessary) but it was just upsetting that she had gotten to that point. So after the vent was placed and she was stabilized she was ready to leave. Again, upsetting to me cause I then didn't want her to go now that she was on the vent but felt a sense of peace about it...praying for angels to surround her as she travelled just a few miles from here.


I received a call a little later from her nurse at Children's stating that she was doing well and was being evaluated. Next call came from a doctor stating that her vent tube had become clogged w/ blood (must have been from the placement of the vent causing irritation and bleeding) and it needed to be removed. He wanted to know if we wanted it replaced. Ummm, hello...Yes, we wanted it replaced, dummy! If she needed it and was depending on it than put it back in! Anyways, it was put back in but then needed to be set higher than it was for whatever reason. So again, more upsetting news.


I need to back up a few...before Eva left to go to Children's she had an ultrasound of her brain due to an enlarged spot which appeared to be fluid to the neonatologist. The findings from this was that she has an enlarged ventricle on/in her brain w/ blood in it. This was new to us. This was never visible or at least never brought to our attention prenatally. So knowing this and her being on the vent prior to being transferred seemed to me that she would no longer be a candidate for surgery. And after it being brought to the teams attention at Children's they still insisted her coming over to evaluate her heart regardless of the T18 and the other now known issues. They said that it didn't matter.

Short and sweet...Eva is no longer a surgical candidate due to a number of reasons. Reasons being the T18, the numerous heart defects (would require multiple procedures to fix), the lung failure and the need for bypass to fix the heart which it is likely she would have difficulties coming off of the bypass if put on. All in all she would likely not survive surgery so we and they have vouched against it.


***In a nutshell - Eva left to go to Children's Hospital on Monday around 2:30pm and returned Tuesday around 5pm. She is still here, in the NICU and on a low vent setting until at least tomorrow. We have many other obstacles to overcome. From the looks of it w/ her heart disease causing lung failure, her lungs disease causing heart failure, the bleed on her brain and now intestinal issues causing the concern to feed once off the vent it is likely that she will not be a long-term survivor like we had hoped. There is always a chance of her heart failing even on the vent. It is likely that if we have her weened off of the vent, stable w/ oxygen and on iv fluids and nutrition we may get her home for a day or two before her heart and/or lungs fail . She doesn't appear to be a Tristan, Jacob, or Molly. We are not giving up nor losing faith. I always knew that our story would be our story and that God's plan for us would differ from all the rest. I still pray that things will get better but know that if it's not meant to happen than it won't. God had provided more than enough and we pray for him to continue to provide and bless us w/ more precious time.***

Please pray for wisdom for us as well as for all of our doctors. Pray for peace for whatever decisions we are asked to make. We already feel at peace w/ where we have come so far but have further to go and need to know we are doing all that can be done. We know that God is in control and he will meet our needs as well as the desires of our heart. I hoped that I wouldn't have to give Eva back to God so soon and still pray that I won't have to at all but I am extremely content w/ knowing that I will, no doubt, see her again. I can rest knowing just that...