Overdue Update on Devin

It has now been over 4 weeks since Devin’s last open heart surgery.  We apologize for the delay in getting an update posted.  This was the first full week Dan and I have stayed at home with the boys.  Instead of staying in Dallas for the week, we have been driving back and forth to Dallas each day.  So, I had to tend to things like unloading the dishwasher instead of writing an update.  The dishwasher always wins.  You know what doesn’t win?  Cleaning up toys in the family room.  Right now Thomas and his friends have just about completely expanded Sodor to all 4 corners and is totally out of control.  It’s unfortunate Devin has to miss out on all the fun at home.

This past week Dan & I both felt like we had just hit a wall with Devin’s progress.  Every time we tried to wean down his breathing support he would fail, and his lung would get worse again.  We’ve both felt so discouraged after being here so long, and not really making much if any improvement since being extubated 2 weeks earlier.  We were able to attend our monthly prayer service at church last Sunday.  It was a blessing to hear 100’s of voices being lifted to heaven on Devin’s behalf and on the behalf of another heart friend from our church.

Monday I felt refreshed as I walked the halls of the hospital.  That day I had the privilege of meeting 5 mothers who also have little babies in the cardiac ICU.  Talking with them was just encouraging as we shared our stories, and felt a sense of comfort knowing we share each other’s burdens.  Devin also seemed to be doing really well that day.  We were able to make progress in lowering his oxygen, and even switched him from his large face mask, to a small cannula.  With the smaller cannula, he seemed so much more content & happy.  He was still doing pretty well on Tuesday, but by Wednesday we had to go back to the larger mask.  By this time things had moved quickly in the wrong direction and any progress we thought we had made was lost.  Thursday we found out he had a lot more fluid on the lungs than we had thought, and his oxygen saturations started to dip again.  Yesterday, he was put on more oxygen and pressure support to help keep his lung open.  He’s also on a heavy amount of other meds to help keep fluid off, but he does not seem to be responding well to them.

So, we contacted our cardiologist who is out of town this week to discuss if we need to revisit the option of Devin having his diaphragm plicated.  We had hoped that his diaphragm would have healed and gone down on its own, but after 4 weeks post-op; it doesn’t seem to be making much progress on its own.  So, we just ask for your prayers for wisdom as we discuss this with the doctors this week to determine whether we should proceed with this additional surgery. We just want the answer to be very clear about what is best for him.  Obviously no parent wants their child to have another surgery, but the longer we wait there seems to come another set of issues and hurdles that we are faced with.

As we look at pictures of Devin when he WAS at home, we kind of start to forget what it was like having him here with us.  Devin turned 6 months old yesterday, and he has officially spent more of his life in the hospital, than he has at home.  It’s hard to believe he’s been alive half a year, which to us has been such a blur.

One of the moms who I met this past Monday was told her baby was not going to make it much longer.  Yesterday I had the privilege to take pictures for her family as they said their goodbyes to their sweet baby.  Typically my job is to take pictures of newborns and celebrate their lives.  Yesterday as I took pictures, I was still celebrating that baby’s life; but in the complete opposite way.  It was crushing to watch this family say goodbye after two short months with their child.

As Dan and I talked about ALL that happened this week, we know we will never be the same after going through all this with Devin.  Before our life in the hospital there was a sweet ignorance to a lot of pain and suffering. As in America we like to gloss over things that are difficult, ugly, or inconvenient.   Dan made the analogy that it’s similar to someone from the United States going to a Third World country and having their eyes open for the first time to the complete devastation, poverty, and pain that the vast majority of the world lives with daily.  It’s so easy, for myself included, to lose perspective of what is important in life.  With our first baby I was worried he’d take his pacifier to kindergarten, with my fourth baby I just want him to breath unassisted.  Our view of life has completely shifted, and although it hurts, we are grateful.  I pray we don’t waste a second of Devin’s illness and that we would be so aware of all the Lord is teaching us, and our boys during all of this.  I’m praying others would be changed by Devin’s little heart as well!