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We had a couple of appointments this week for our little Paxon.  Both of them lasted practically all morning and we just want to thank our friend, Melissa, for taking care of Asher so we could both be freed up to go to these appointments together.  Melissa has been our babysitter savior and we’re so thankful for her love for our family!

Our first appointment was pretty hard.  We met with our Neonatologist, who will be taking care of Paxon when he comes.  She described herself as being our “contractor” and will make sure that Paxon is getting the best care for whatever he may need.  I wish we would have started our time out with the ultrasound, because I always feel a little hopeful when I see him wiggling around.  Instead we started with her sitting us down and again running through the clinical diagnosis.  She kept shaking her head saying, “I don’t know what to tell you.”  She acted like this was the first time we had either heard the news, or we didn’t understand the severity of it before.  She said, “Unfortunately, you’re 26 weeks along and there’s nothing we can do about it now.”  Sigh…thankfully Jeremy handled this whole conversation with her because I wasn’t able to control my tears and she wasn’t helping the situation.  She recommended that we call and setup a tour at the NICU so that we can see where we’ll be staying when Paxon comes.  I know we need to, but the thought of walking around there seeing all those babies hurting and hooked up to machines makes me well up right now.

Then we got to see our boy.  He was sucking on his little toes and I swear I could have watched him do that for hours, it was so precious.  They showed us his cleft palette, which to me looked like it took over the whole right side of his mouth.  The ultrasound tech said it’s about 7 mm.  Seems big to me for an itty bitty mouth.  This whole topic is still terrifying me.  I just have so many concerns about how he’s going to be able to eat…and what he’s going to look like when we see him…Jeremy said I really need to start preparing myself for this…

We met with another doctor after our ultrasound and he said that Paxon’s growth overall is looking good.  He said that his head size is in the normal range – this is great news.  Smaller heads is one of the markers for this chromosome deletion, and with that comes a whole slew of problems.  A small jaw is also a marker and can cause a lot of eating problems, and the neonatologist said this may lead to difficulties if they have to intubate him.  They weren’t able to clearly see his jaw in this ultrasound, so we’re really praying that is growing at a normal size as well.

The doctor told Jeremy and me that he wanted us to start thinking about how extreme we want to be in monitoring our baby now, as well as the care we want him to have when he comes, or if we’ll be letting things happen the way they happen.  And here lies pretty much what we’ve been thinking about since our appointment.  How are we supposed to make these decisions?  We’re talking about emergency c-sections and aggressive care to keep Paxon alive.  Decisions like these would be easy if we were talking about a little baby with a hopeful future.  We’re just not sure what Paxon’s quality of life will look like and whether our little boy has much of a future.  We don’t want to give up on our boy, but we don’t want to cause him unnecessary pain and procedures if we’re just delaying him in spending eternity with our Father in heaven.  Our minds are reeling and we feel so burdened by all these decisions.  Please pray for us.

Then we went to a neonatal pediatric cardiologist to have him get a better look at Paxon’s heart.  We left there kind of encouraged.  The doctor said that right now he doesn’t see anything that would requite him to need immediate surgery, or require us to deliver at Phoenix Children’s Hospital.  He said that Paxon’s heart has as a whole developed well, everything is connected and he doesn’t see any holes.  This is encouraging.  What he did see he called a mild dilated cardiomyopothy meaning that his right ventricle is slightly enlarged, and his valves between his ventricles are thicker than they should be which is causing some leaking of the blood back into the ventricles, and he said his heart as a whole isn’t pumping quite as strongly as it should be.  We need to go back in 4 weeks to see how, if at all, these things have changed.  Unfortunately he said things can get worse, but right now there’s nothing too major going on.  The stuff he was seeing at this point should be able to be fixed with medications.  And, since we’re a drug happy home already, this is no big deal to us.

So that’s how our little boy is doing.  He still needs a lot of prayer.  He’s 26 weeks along right now, and weighing in at 2 lbs…even though I look like I’m ready to deliver now, ha!  When we were in ND Jeremy took a few belly shots of me, and I thought I would share one with you so you can see that he’s growing :).  Love you all.  We cannot thank you enough for all your love for our family.  We definitely don’t feel like we’re walking this path all alone and that’s such a blessing!!!!