March 28, 2016

Rough Day For Mommy

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. 


  1. Oh all the unknown is havoc on your brain. We still don't know what happened with Owen. There for awhile i let it take me down. And at some point you have to let go of the "why". Even if you are a carrier it does not mean you could have prevented it. (Btw, i have that line too!). All that matters is that aiden is loved so much no matter what, by wonderful parents! That is unconditional love! And that is a success in my eyes! I can't imagine what you are going through but you are an example of strength and love to me!

  2. Never your fault. Take it one minute at a time if you have to. If I were nearby, I'd give you a hug and tissues. I can't imagine how hard this is for you guys. Remember, with God, all things are possible. I'm sure you don't need an emotional coach from me, so I'll just end with I'm thinking and praying for you guys!

  3. I love that in spite of all the emotional roller coasters, you always find some positives in each day. And his whole adorable self is sqishable!

  4. Our prayers are with your family, keep doing what you feel is best in the moment and your loved ones and the spirit will fill in the rest. Please let your ward family know where we can help. Keep up the hard work.

  5. When you need someone to blame you will always start with yourself. There is no one to blaming; there is no one to ask why and no one to answer your questions. If you need someone to blame, blame Mother Nature all of her millions of little chromosomes. Then go ahead and kick them all in the ass.