Ups and downs...and dumps

Today was a day of some big changes. The doctors thought today was a good day to get Max and Wes going on the CPAP machine, which is like the ventilator in that it provides some pressure to keep the lungs from collapsing, but it is different in that it does not supplement the boys' breathing at all. They do all the breathing on their own, no "back-up" from the ventilator. The CPAP looks kind of like a SCUBA mask, but it has two lines that go up the boys' noses instead of a tube that goes down their throats into their lungs. Clearly, this is a much less invasive way for the boys to breathe...but let's keep in mind that they are about 14-weeks shy of when most babies start breathing on their own. Let us also keep in mind that my medical degree in neonatalogy is only 10-days old. I am sure you can tell by my tone that things did not go great. Wes made it about 5-hours before needing to be re-intubated and put back on the ventilator. He just wasn't taking enough deep breaths to keep his blood oxygenated, and they had him breathing almost 100% oxygen (compared to 21%, which is "room air"). Max is still on a sort of hybrid CPAP/vent setup where they do not have a tube into his lungs right now, just the CPAP mask with the tubes up his nose, but the vent is still providing him with "breaths" of air periodically, just not directly into his lungs. This may work, may not...they are just going to give it the old college try.

Kate was at the hospital all day and didn't enjoy watching the whole process of extubating the boys and putting them on the CPAP. The other thing that adds some anxiety to the mix is after they (the respiratory people) were done doing what they do, the alarms started to go off. Alarms have become a familiar sound. Whenever the boys' heart rate, oxygen saturation, or respiration (breaths per minute) get outside of their set parameters, the alarms go off. They could be good alarms, or bad alarms, but they are alarms. A few of you may know that I have never met an alarm clock that I cannot sleep through...for hours. I set an alarm clock to wake Kate (or in years past my parents and roommates) up so she can wake me up...just one of at least a billion things that I am sure she loves about me...but these alarms are different. I cannot get a crossword puzzle done around these things much less one wink of sleep. Something about them being directly related to our sons that make them a little more nerve racking. Needless to say, when they put the boys (especially Wes) on the CPAPs, the alarms were ringing ALL day long. Kate is ready for some quiet!!

I made it back to work today, and it really went well. I certainly missed being around the boys and Kate, but my co-workers made it an easy transition. Granted, I did not get a lot of work done between sifting through 100's of emails and catching up with people, but I was really dreading it and it was not so bad. Thank-you to everyone who said a little prayer for me today.

We are super happy that the doctors feel that things are going well enough to try and turn the boys' world upside down. So far the results have been mixed. Please pray that Max can continue to keep himself oxygenated and breathing well with the hybrid setup he is on now, and pray that Wes can recover from his busy day and continue to ween down on his oxygen dependence.

Oh, I almost forgot...it is safe to say that the boys' guts are officially "primed". Wes followed up his earth shattering BM with yet another today...and his mom got to change it for him!! Kate said it was beyond comprehension that it came out of his little body. The nurses were all astounded, too...which makes his dad very proud!! Max made a little mess as well, but I had to change that diaper so it wasn't nearly as cool. They are doubling the amount of breast milk they give the boys tomorrow, so we are hoping that they tolerate that well...and keep pooping when only Kate is around!!

Kate's First Post

This is my first post. I have a lot to live up to, Mark is an amazing writer.

First, thank you to everyone for your thoughts and prayers. We are so blessed by all of your comments and prayers. Words could never describe how amazing it is to feel the prayers for our little family. This journey is the hardest thing we have ever faced. We could not get through this without our faith and the prayers and encouragement of family, friends, and strangers.

We covet your prayers for our little miracles. They have a long road ahead of them. They are little fighters, but they have many months of unknowns.

Also, please pray for my amazing Husband, he is going back to work tomorrow and is having a hard time knowing he won't be able to see the boys as much as he would like. He has been so strong over the last month, I am so blessed to have him.

So, here is an update on Max and Wes. Max had a successful picc line put in last night. He is now enjoying sleeping on his tummy because all the IV lines are out of his belly button. He also had a head scan(brain ultrasound) and it showed improvement with bleeding. Also, improvement in the area of his head that they think may have been a stroke. The doctor said that in six weeks or so they will know more about that. Wes has had an uneventful couple of days. They are still monitoring his blood sugar level, it has been pretty good lately but they are still giving him insulin to keep it under control.

Thanks again to everyone. We are so blessed to have all of you praying for us.

Kate