The waiting game

We are now 10 days post Norwood, and we are playing the waiting game. We are waiting for Wyatt's body to completely rebound from surgery. We are waiting to be able to feed him a bottle. We are waiting to wean him off all his meds. We are waiting to go home. After all the "excitement" of surgery, and those first few imperative days, this slower paced, not as stressful way is a relief. But, at the same time, it makes me ache for all these things to happen so I can take my baby home.

The thought of going home is one I dwell on everyday. I can't wait for Wyatt to be in his own house, with his own things. To be able to be with both of my sons, and my husband, every night. To be able to pick Wyatt up and hold him whenever I want, not just when we are told its ok. But, I am scared. I know that the time between the Norwood and the Glenn is a very scary, important time. I won't have nurses, and intensivists, and cardiologists, and monitors to constantly tell me how Wyatt is doing. I won't have all those things to help me know that he is ok. All I will have is my own brain, my gut instinct, a pulse ox machine, and a scale.

Also, the thought of going home is a reminder that even once we do go home, this battle isn't over. We have to do this all again when the time comes for Wyatt to have his Glenn, and then AGAIN when it comes time for the Fontan. It's a reminder that HLHS is a HUGE deal, and a never ending fight. A reminder that life isn't fair, and that my poor baby has to endure more surgery, more healing, more tubes, more discomfort. Shouldn't once be enough?!

I am so proud of Wyatt. He is such a strong, amazing baby. When I start to wonder if I am going to make it through this, I remember that Wyatt is the one who is really doing all the work, he is the one fighting the fight, and I will do anything in my power to support him. Forever.

These past few days I have been dwelling on the fact that life isn't fair. That Wyatt shouldn't have to go through this. That we should be at home, reveling in our new baby, and life as a family of 4. That Austyn should be getting to enjoy his baby brother, not visiting him in the hospital on occasion. That Wyatt's grandparents, and aunts and uncles and friends should be able to hold him, and love him. I know there is nothing I can do to change the situation, but damnit, I wish there was.

On a side note, I had my two week post op appointment at the OB yesterday. I had called them two days prior because I had a large, swollen "lump" that was really hard and red that I was pretty worried about. After describing it to them, they said everything sounded normal. Then, two nights ago, around 5 pm, I noticed my incision was seeping a little bit. At 10pm, there was still just a little bit of the seepage. At 11:30, the pad I had over my incision was sopping wet. After sleeping for 4 hours, the pad, my pants, and my blankets were all soaked from seepage. When I got to the doctors office and they looked at my incision, the nurse, NP, and doctor all said something like "that's impressive" or "whoa". The doctor poked a hole through my incision with a swab, and tried to drain the liquid out. He said the small hole would not be sufficient. He wanted to take me to the OR to re open the incision, and get it all drained and cleaned out. He checked his schedule, and found a time, but I had eaten too recently. So, they got some lidocaine, numbed the area, and quite literally pulled my incision back open. First, he tried opening it with the stick of the swab, which just snapped in half. Awesome, huh? After they cleaned out this new "hole", they packed it with wet gauze, and told me the dressing had to be changed twice a day. They tried to teach DJ how to do it, but he nearly fainted looking at it (apparently its about 4 inches deep- I don't blame him). Thankfully, I have a friend who is a wound certified nurse, and she has been able to help me and change my dressing for me. On Monday I am going to go back to the doctor and hopefully get a wound vac. I will have to carry a machine around with me until it heals (around 2 weeks) but the alternative is to continue to figure out how to get the dressing changed twice a day, and a much longer heal time. While this infection is NOT what we needed added to our plates, I am super thankful I have Natalie to help me out until I can get this wound vac. My mom would also be able to change the dressings for me, as she is also a nurse, but I really lucked out that Natalie is wound certified. So- anyone who has a C-Section and ends up with a large, swollen, hard lump under your incision- call your doctor right way and demand to be seen. You may be able to avoid being ripped back open and dealing with this mess.

I'll end with a picture of my sweet boy, who was wide eyed after Rachel and Steve's visit :) And also a photo of big brother Austyn from his visit today :)