The boys have had a pretty good couple of days. There have not been any huge changes to speak of. Max is still at a pressure of 33 on the jet vent, but his oxygen needs have come down quite a bit...even into the 30s for the better part of the last few days. He is getting albuteral and palmicort, which are both very common inhaled treatments, or so I am told. They seem to be doing something because his oxygen needs are down so much, but they certainly don't make him happier. It doesn't take a rocket scientist or even a senior commercial credit analyst to tell how much Max hates the jet vent. He is now big and strong enough to actually clamp down and close his ET tube to momentarily stop the thumping in his chest. He does this until his oxygen saturation drops so far that he gets faint and his body relaxes and allows the ventilator to help him breathe. Once he regains his strength, he does it all over again. It so tough to see him struggle against the very thing that is sustaining his life. They have upped his dosage of Valium to keep him more docile, but we don't like that either because he just doesn't act like himself. We are continually reminded that he just needs time...and that is fine, we will keep coming to see him everyday, keep singing Sanctuary with him and keep praying with him...but we just want to know he is somewhat comfortable and it is so clear that he is not. Please pray with us that the Great Healer will touch little Max's body and help to grow and develop his lungs so that he no longer needs to be on the jet vent.
Does this kid (his new nick name is Puff Daddy) look happy to you?
Wes is doing well. He is still on a CPAP of 5 (that is the lowest setting they use on the CPAP), but his oxygen needs have actually been climbing a little bit into the higher 40% range. No one seems too concerned about this, but it does mean that he doesn't get to try breathing with out the CPAP. The doctors indicated that he needs to be in the 20s before they will do regular trials off the CPAP. That is a bummer for us because I am convinced he would be a happier child without those prongs shoved up his nose...pretty weird, huh? What kid doesn't like stuff shoved up his nose? He has been very stable overall though, so we have been able to hold him everyday. Grandpa Blauwkamp even got to hold him for a little while today. Those of you that know Kate's Dad will likely know he is afraid of small children, but between Kate and nurse Lindsay, he didn't have much of a choice. Once he found out that it is good for the boys to be held, he got used to the idea...and maybe even liked it a little bit. I have included a picture below as proof that he actually did hold Wes:
Perhaps the biggest news of the weekend had nothing to do with the boys. We found out that Kate no longer has a job. Many of you know that Kate has been a nanny for more than a decade now, but has been with the most recent family for more than 5 years. Kate loved her job very much. I think God is really impressing upon us that He is our provider. That is something that I have such a hard time with. We desperately want to seek God, to follow where He leads, to trust that He will provide...but that is so difficult some times. Maybe He hasn't fully convinced Kate and I that we are not in control. I have often wondered what 2009 will look like in a few years. Will it be a good year or a bad year? It seems to change from day to day. I feel like I am whining so I am just going to stop...but for all of you faithful and amazing prayer warriors that have lifted up my wife and our sons in prayer...if you have an extra moment, please pray that God will calm our anxiety and reveal His plan for us. Pray that we can hold fast. We are willing to go where God leads us, whatever it may be...but the uncertainty of knowing where that is seems like too much to handle along with all of our concerns for our sons. God has been faithful throughout the last 3-months. He has calmed the storms when I thought I had not only lost my two babies but my wife as well, He has carried us through so many nights wondering if the boys were going to survive, He holds us in His arms as we grieve the loss of Kate's Mom...so we know with our hearts that this is not too big for Him. Sometimes it is tough for me to believe that with my head, though. I just want to know that we will be able to provide for Max and Wes. Everything else seems so meaningless right now.
I thought I would put one more picture on hear as kind of a "scale" shot to show how big the boys are. As you can see...Wes is at least 10 times smaller than I am!! Notice the stylish bright yellow gown that I am forced to wear because it is the only size that allows for a full range of motion. The nurses call me a "big ray of sunshine"...and I don't think it is a compliment.