Wes had a very good holiday weekend. The big change with Wes is that they went down to a pressure of 5 on the CPAP. That is a big step because that is the lowest they go with the CPAP, so next step would be breathing all by himself with maybe just a little oxygen. If he continues to do well with the pressure of 5, they may start trying him off CPAP for an hour at a time by the end of the week.
Max did not have such a good weekend. He went back on the jet vent on Sunday morning. That is not a huge deal, the jet vent just works a little differently than a conventional vent, and it works better to get rid of CO2. When they switched him back to the jet his pressures were at 35. This was too much, and by the time we got to the NICU on Sunday morning, he was down to 25. That was great news...but then his blood gases started getting bad. He had a few gases where his CO2 was in the 90s, which is WAY too high. They have made a number of changes over the last 36 hours or so, all of which were to higher pressures. He is currently at a "top" pressure of 32, but this will be adjusted upward based on a gas that nurse Ashley pulled at 8:00 p.m. which showed his CO2 in the 80s. The other disappointing news we got with Max is that he has pneumonia...again. We can just tell he doesn't feel well, and he is starting to get really puffy again. That poor little guy has been through so much. It seems like every step forward is a huge step, followed by a bunch of little steps back. I would say that his overall trend is slightly in the right direction, but it certainly feels like we are treading water a bit. I just want to take it all away from him.
Kate and I continue to struggle with celebrating Wes' off the charts status while his older brother continues to be on life support and very sick. I don't know if that is just us or if that is human nature. We know that God has a different road planned for Max than He does for Wes...it is just tough for us as parents to walk both paths simultaneously.
Here is an update on their stats:
Wes weighs 3 pounds 9 ounces as of Sunday night and is 16 inches long
Max weighs 3 pounds 11 ounces as of Sunday night and is 15 inches long
Mark, Kate, Max & Wes,
ReplyDeleteWe can't even begin to understand what your everyday reality looks like... but we know you are doing an amazing job parenting both your precious boys!
I read this over the weekend and thought of you all... When hard times come you have all the more reason to be excited about the future. The bigger the mountain, the greater the view on the other side.
We are confident that your view on the other side of all this struggle will be absolutely breathtaking.
Praying!
Jason, Mary & Bella
Praying for you guys. It has to be incredibly hard having such up and downs with your boys, but your faith in knowing God's hand is guiding them and with them is astounding. I dont know if I could be that strong as a parent watching my child go through that. Still praying for you guys, and Wes and for Max. Praying!-Ryan and Megan DeVries
ReplyDeleteOne moment at a time is what my mother in law reminds me of often...other wise everything is just to overwhelming it seems like. My life verse is Provers 3:5-6 Trust in the Lord with all thine heart and lean not unto your own understand but in all your ways acknowlegde Him and He shall direct your paths.
ReplyDeleteWe do not have to understand we just need to obey Him by Trusting Him. In His Time Everything will be beautiful!
He understands your frustration, hurt, worry, fears, His shoulders are big enough to handle all of it!
You are doing an amazing job of loving and caring for Max and Wes...
I am very thankful for all the nurses, doctors family and friends who are surrounding you and helping you care for them, each using the gifts and talents God Blessed them with!
May God bless you and keep you , Wes & Max safe in His love,
Pam