Baby Peter: Days 45-50

by Tracy on Tuesday, November 22, 2011 at 2:36am

Monday November 21, 2011

Happy seven week birthday, Peter!

It’s been kind of a rough week for Peter. Everyone in the family got a cold (including him) and has been coughing with sore throats and achy bodies. It is pretty heartbreaking to see a little baby coughing and sounding so awful.  Nothing better to make you feel useless, and all that we could give him was a very small amount of baby Tylenol to hopefully help him feel better. On top of that Peter has managed to pull out his feeding tube twice more since last Saturday’s adventure. Each time he had to wait for at least an extra hour past his feeding time, most of which he spent crying and exhausting his little body with the effort.  Each time after we finally got a new tube down his throat and re-taped to his chin, we fed him and he passed out in exhaustion.  It felt like each episode probably shortened his life by three days!  Somewhat of a traumatic experience each time for his fragile body. 

My brother Boyd flew in on Thursday night from Utah to spend two weeks with us for Thanksgiving.  It has been awesome having him here, and I am so glad he was able to meet Peter and also spend the holiday with us.

On Wednesday or Thursday when Peter was getting one of his feeding tubes replaced, the hospice worker noticed that he wasn’t doing as well, and estimated that he had 7-10 more days with us. Then on Sunday he sounded so awful coughing and wheezing that Zach called her up and she came over to check him again. She said that he now had fluid in his lungs and that he likely had 72 hours left with us. She said that he has terminal congestion. He has also started to have more residual when we feed him and each feeding is taking longer. As a result, we have decreased the amount of food we give him from 39 ml to 20 ml. We have also started giving him another prescription medicine (along with his usual lasiks) to help him relax and be more comfortable as his little body struggles to breathe through his sickness.  He sounds very congested, and sneezes and coughs with lots of effort.  The medication he is on is an anti-anxiety medicine which calms him and it also makes him sleepy, which is good because when he is sleeping his breathing is more relaxed and comes easier. When he wakes up he has a harder time breathing and is wheezing and coughing.

It has been hard to watch him be so sick, and I know that when his time comes it will be a release from any pain he is in, and that he will be in a better place.  I’m not afraid of death, or of him dying, and know that it is an important part of the plan, and a good thing,... but it’s hard to say goodbye, even though I know it is only for a short time.  Even though I know this, it doesn’t make it hurt any less. I know that it will be a good thing for him, but it’s hard for us – those that he leaves behind.  

I will miss him so much, and think about him all the time, but I am so grateful for every day we have had with him and that he was able to spend so much happy time with us. I’ve learned a lot throughout this whole experience and am grateful for beautiful memories and moments I’ve spent with him. 

I will love my sweet baby forever, and can’t wait to be reunited with him in the eternities.  

Peter aka Choir Boy

Snuggling with Cowboy, his blanket.

Lovin' the love from his NICU nurse who came to visit.

Reading Peter my favorite book, The Great Divorce by C.S. Lewis.

Uncle Boydie

Happy Week Seven Birthday!