Spending time with Charlie before his Norwood surgery
Mommy snuggling Noah
Noah gets a tan
Our brave little boy, a few hours post Norwood procedure
As we are sure many of you figured, today has been quite a roller coaster ride. We went to Children's early this morning to be with our little buddy before surgery. We got to hold him and snuggle him, and remind him that he needs to be strong. He listened quietly and attentively, and we dropped him off at the surgery wing with his CICU nurses at around 8:15am.
Josh remained at Children's with Mina's dad, and Mina went back to WHC to be with Noah. Josh had a pager which gave him surgical updates, which he posted on Facebook and texted to Mina to make sure everyone was in the loop. His surgery went pretty smoothly; towards the end he had trouble stabilizing his blood pressure and we were unsure whether he would have to be placed on ECMO (Extra Corporeal Membrane Oxygenation) or not, however, he stabilized and was able to return to the CICU without it. Mina was able to come back from WHC in the evening to see her boys. Josh is staying the night with Charlie in the CICU.
And so now, the hardest part begins. So far he has been relatively stable. His oxygenation is pretty good. He had a bit of bleeding (expected with this surgery), so he is currently being transfused. His lactic acid levels are slowly rising, which as of now, the doctors are keeping a close eye on. He is also not putting out a lot of urine, so they are also keeping an eye on that. His heart rate and blood pressure were not stable, so they lowered the dosages of Dopamine and Epinephrine. Since then, his BP and heart rate have stabilized.
So, thus far, the news is mostly good. We did not expect to come out of this with no issues, so we are taking it in stride. It is difficult to see our little pumpkin this way, but we are so proud of him for being so strong so far. Charles Matthew is truly one amazing little guy!
As far as Noah, due to his prematurity and his breastfeeding issues, he is now pretty jaundiced. He is getting his little suntan in the nursery at WHC, which is why Mina spent a fair amount of time here - making sure he's getting fed and his jaundice is getting under control so that he can come home tomorrow with her.
Another answer to a huge prayer - somehow, although they have been full for a while, the Ronald McDonald house has just enough room for us starting tomorrow after discharge from WHC. We had been told at first it was full; we were then told only two people could stay there - Noah counting as one of the people. Now, all three of us can stay together! Pray that Noah is able to come home tomorrow It has already been quite a beginning, but there's one thing we are both quite sure of...we are both possibly the luckiest people ever to be blessed with such wonderful babies! No matter the hurdles, they're already teaching us so much. There have already been lots of tears, of course - but lots of joy too. We can't wait until our family is all together again!
We will update as we receive more information, probably towards the end of the day. Sorry if we don't get back to people personally - we are a little overwhelmed, but trust us when we say we appreciate every single little word of prayer and encouragement. Yet another reason we are blessed.
Love,
Josh and Marina
We are thinking of you so much, and keeping you all in our prayers - especially little Charlie.
ReplyDeleteIt was strange to see your photos - we have some virtually identical ones of our Charlie (now six) - pre and post-Norwood. It is a rollercoaster ride, but keep hanging in there -just take it step by step and day by day.
We are watching your blog for news, and walking beside you every step of the way.
With love xxx
thank you guys so much for the updates!! we are continuing our prayers!!! :)
ReplyDeleteHi, I recently started following your blog. I am also a heart Mom. My daughter had HypoPlastic Right Heart Syndrome, and she received a transplant about five weeks ago. That is such a blessing that he was able to avoid the ECMO machine, and I am glad he is doing well despite the bumps in the road. I am praying for sweet little family. Stay strong and if you ever need anyone to talk to please don't hesitate!
ReplyDeleteI'm so glad RMCH had an opening for you all! What a blessing. You are doing an amazing job with all of this. We're so thankful that no other problems have arisen for your boys. Continuing to pray for rest for you all & a quick recovery for your boys.
ReplyDeleteThanks for the updates. Everyone I know that prays is praying for you guys and I'm thinking of you all constantly.
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