Since we are now considered parents with a "terminally ill/disabled child", David and I have been assigned our own doctor and Chaplin through the NICU. They are solely there to provide us with emotional support and help. I think it's great they have this program. Deep down I know we need someone to talk to and help us through this.
We finally sat down and talked to them last night. And of course, just like all good psychiatrists and Chaplins, they were casually chatty with us at first - but before we knew it David and I were both sitting at Aiden's bedside crying.
They brought so many emotions to the surface that I've been trying to bury. Feelings of guilt that I'm not a good mom right now as I'm split in two, feelings that this is my fault, and feelings of uncertainty for the future. Now that they are no longer buried, I'm having a rough day.
I've tried so hard to be strong and positive through this. But today I'm feeling very lost. And feeling this lost is making me panicky since we are only 2 weeks into this journey. I'm beginning to wonder how I'm going to get through this.
I keep telling myself I did nothing wrong and this isn't my fault. I know that logically it can't be my fault. But I can't seem to shake the feeling that I did something to cause my poor little boy to suffer this way. The fact that the geneticist is so interested in the line on my hand terrifies me. What if I am the carrier of the mutated gene that caused all this? The fear that it's possible keeps me up at night. I pray I'm not the carrier. I don't know how I'll be able to live with the guilt if it's indeed from me.
Having a baby in the NICU is something I wouldn't wish upon even my worst enemy. It is an awful experience to live through.
I keep reminding myself that they had to perform CPR on Lydia twice. And she's still with me and as bubbly and vibrant as ever.
The NICU rollercoaster has started again. Aiden isn't having a good day either. Thankfully he hasn't dipped down as low as his last bad day, but his ventilator settings have had to be brought up. His red blood cell count is low again, so his third blood transfusion has been ordered for this afternoon.
His right lung has collapsed again, so they propped him up on his side to help take off the pressure and open it back up. When he's propped up in that way, he gets agitated and his CO2 levels go up. It seems to be this loop of events that snowball off each other. And they have usually started around his lungs collapsing and not being able to sustain themselves.
It's on days like today that I have to remind myself that we need to take things one day at a time. I can't try and look too far into the future or else I feel like I'm going to have an anxiety attack.
Positives of the day:
- His swelling looks even less today. Especially in his head. His skull is appearing more and more! In fact he has lost a total 100 grams in weight so far. Any other baby that would be a big concern, but with him that's awesome news.
- Now that the IV in his hand went bad and they took it out, he has a free hand I can actually hold. When he hears my voice he reaches out to me, and holds my finger so tightly. I'm sure he feels the same level of comfort that I feel when we get to have that small connection.
- The nurses figured out that he loves to have his head covered. It seems to give him a sense of security and helps him stay calmer.
- His squishy old man face is to die for.