Wednesday, January 4, 2012

The NICU Rollercoaster Ride

UGH! Our NICU is a rollercoaster ride for sure!

Walker has ROP (retinopathy prematurity, google it) and we opted out of the laser surgery treatment for the injections of Avastin in both eyes. Seems to be working. Crossing fingers. The reasons for not choosing laser surgery, that is the most common procedure for ROP is because Walker would definitely lose all peripheral vision. He would have to be intubated, taken to the OR and put under anesthesia. We didn't want to subject Walker to another surgery when there are other options. The injections of Avastin, often used for cancer treatment, is not approved by the FDA but studies have been done that have seen a great regression in ROP. So we went for that. We know that we are a fantastic hospital and that they have many treatments that aren't approved by the FDA and as Dr. Steinkuller said, "They aren't approved, because, well, we don't ask for them to be". This is the second study that Walker is a part of.

Making these decisions weigh heavy on my heart. We pray we are making the right decisions and choices for Walker. I research everything that they bring up. I speak with the nurses, my friends that are nurses, The Bump Preemie board, and I pray.

Walker started having feeding intolerance and we found out tonight that there's a blockage. Thankfully not a hole like they suspected, but a blockage means very minimal feeds for at least 3 weeks until they are able to go back and connect everything and take the blockage out. This would mean in possibly three plus weeks, he would go under anesthesia, be intubated (anytime a baby goes under anesthesia they are intubated), and he would have recovery time. It took about two and half weeks for us to try feeds again. I've calculated this all out and he would be feeding again in 20's of February some time. A couple of days ago, our hearts really thought he would be discharged earlier than we expected and then this all occurred. Who knows when we will be able to talk Walker home and for him to be completely off machines and on feeds. 

We haven't spoken with the surgeons yet. They could come back and say something completely different. He will be on full TPN, which is horrible for the body for long term periods; that's why he's on omegaven. He's yellow. Some many other things....

I look at Walker and I see complete beauty. He is a gift and he is gorgeous! When they talk about all these things happening I look at my baby and in my head I'm thinking, "They are talking to the wrong person. Look at him, he's perfect".

Then I think about "what the hell happened to my beautiful pregnancy followed by a healthy, beautiful, full term, baby boy". I was robbed.

And then I think about my Bump friend and how she lost her twin boys a short while after having Walker. They were preemies also. I think about my friend losing her baby about the time we found out we were having a boy. And we have Walker here. We give praise, even when we don't want to, we give praise for having Walker here another day. We give praise for the littlest of things. But the biggest thing we give praise for, is that for some unknown reason, God choose us to parents to this amazing little boy.

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