(Wow--we look wasted)

"I know God will not give me anything I can't handle. I just wish that He didn't trust me so much." ~Mother Teresa

Please forgive the shameless array of photos below--they decided to take Isaac of the CPAP for one hour each day while we hold him, so of course I had to take lots of pictures while his face was actually visible.

It took him a few minutes to settle down on Jaska. It was his first time out of his isolette without the CPAP or the vent--he was like, "I'm free! I'm free!". He was lifting his head all around and basically trying to jump off. I think he scared himself because he started crying (still no sound coming out--but a definite cry nonetheless). It was pretty hilarious.

Lovin on Dadda

Nap time

As much as I love holding Isaac, I love the time right after just as much when the nurse first puts him back in his isolette. He is usually super alert and inquisitive and will look around for me. Today, since he was on the oxygen cannula instead of the CPAP, he had nothing on his face when they put him back in. I could hardly believe it--- nothing on his face! I realize that I am biased here--but what a cutie pie!




Overall Isaac is still doing really well. He is up to 18-20 mls (30 mls is an ounce) of milk every 3 hours and tolerating it just fine. He weighs 3 lbs 4 oz. and seems to finally be getting over that 3 lb mark that he's been hovering at.

He only has one week left on his 6 week Ganciclovir treatment. There is talk of perhaps extending the time he is on it since his white blood cells have been fine. His platelets have dropped a few times though to a level that warranted a transfusion--the latest being yesterday.
No decisions on that one yet--we need to meet with the neonatologists and the infectious disease doctors again and make a decision about that. I'm still on the fence about it.

There has also been talk during the last couple of weeks of trying a round of steroids. It usually gives a significant boost in getting preemies to make real progress on the vent, but it also has some real side effects as well. The most obvious is immune suppression, which Isaac obviously doesn't need. There have also been some recent studies showing potential effects on the brain for preemies who were given steroids--basically smaller brain size. The preemies studied were given much higher doses and for much longer than would be given to Isaac however. The good news is that Isaac has been doing so well on his own, that they've held off on the steroids.

The other main issue is his feeds--while he's doing really well with the Progestimil formula--it's still formula instead of breast milk. Apparently the CMV really did a number on his digestive system and just won't tolerate the breast milk--at least for now. This week, a couple of different people told me there was a definite likelihood that Isaac won't be able to have breast milk for a long time, if ever. It's pretty likely that he will be on the formula until he leaves the hospital.

So in the meantime--I'm still pumping. It's hard enough to stay motivated to pump without a baby close by, never mind the fact that he hasn't even been taking my milk. Now that the very real possibility is looming that he may never take it, it's even harder to motivate myself. If I weren't me, I would tell myself to give myself a pat on the back for a job well done and be done with it. But--I'm having a hard time doing that. My gut is telling me that I should keep pumping--so I'm still pumping.

I'm still weirded out by the fact that he can't tolerate breast milk. I can't help but think as he gets better and bigger, his digestive system will figure it out and he'll be able to take all this milk. I certainly hope so.

Emotionally--we're still hanging on. Something I didn't expect is that it's actually becoming more difficult in some ways as Isaac gets better. As he becomes more and more like the chubby inquisitive newborn he was intended to be, it makes the fact that he is not home with us more and more glaring.

It is very traumatizing to have a baby born so early for many reasons. As weird as it sounds, it was hard to think of him as a real baby at first. We knew he was ours and we totally fell in love with him, but he looked so different from what we associate in our minds with a newborn that it was hard to make the connection that he was in fact our newborn baby.

My brain has sort of compartmentalized the experience. I've been going to the hospital to see and hold my baby. He lives in a plastic house with all kinds of tubes and wires, sleeps 24/7 and hardly moved until a couple of weeks ago when he finally started getting better. My brain has sort of kept this part of things separate from the idea that at some point this same Isaac will get better and come home. Thinking about him coming home up until this point has been a bit alarming to me because it seemed so bizarre. All I know of Isaac is in the hospital as this fragile funny little thing. As he becomes more stable, grows and actually becomes more like an infant, I've been able to make that connection of him coming home. Now as he's getting better, it's harder to leave him there each day. I can visualize him home with us just hanging out and becoming integrated into our family.

I am so glad we have made it this far and that he is doing so well. I really do try to be grateful for what we do have--a wonderfully opinionated, sweet strong little man who has blessed our lives so much. We have a hospital close by that is equipped with the technology and staff needed to care for Isaac and they do so with compassion and competence. We have finally reached the point where Isaac is stable, growing and improving every day. We have a sweet natured little toddler who can tolerate 1-2 hours at a time at the hospital. We have wonderful friends and family who have helped so much throughout all of this. We have had our testimonies of God and His son Jesus Christ strengthened beyond what we thought possible. We have so much.

Once again, I have to be patient. I am happy that Isaac is where he is, because it means he is getting the care he needs. It is a necessary step that we can't skip over to get to the end. (However desperately I wish it at times) It's hard to be apart from him and I do wish it were different sometimes. Despite that longing however, I still wouldn't change a thing about this experience even if I could. The journey of life is such an immensely vivid and valuable thing--I don't want to miss a single step.