The beginning of a very big week

David and I are preparing for a very big week with Joshua's recnonnection surgery scheduled for Thursday.  These last few weeks have been a little bit like purgatory as we have been basically treading water keeping Joshua as comfortable as possible as his intestines heal from the last round of surgeries.  He is constantly hungry since he is only allowed a third of an ounce of milk every 3 hours.  Despite the challenging circumstances, Joshua is an incredibly sweet little boy and is developing a laid back and tolerant personality that I know will serve him well in life.  

A huge bright spot in the last few weeks was our physical therapist getting approval for me to take Joshua outside once a day!  I can't explain how satisfying it has been to put Joshua in a stroller for the first time and leave our hospital room.  The sun is way too bright for his eyes, but he has slowly adapted to it as our trips have become more frequent.  I am trying to savor this freedom since Josh will not be allowed to do this for a long time after his next surgery.

Today was a very special day because Joshua was able to meet his cousins for the first time!  Since the weather did not comply, we had to hang out in the lobby of the hospital rather than the garden.  But, I don't think anyone cared.  Ella, Michael, and Henry  (well at least Ella & Henry) were very interested in seeing Baby Joshua and I am quite certain the feeling was mutual.  It was absolutely adorable to see Henry reach out and touch Josh's arm - I have a feeling those two are going to be best buds.

Joshua had a little bit of a rough week since last Monday started off poorly.  On Monday he required a bunch of procedures including two heel pricks, two ostomy bag changes, his PICC line had to be redressed, and he had a blood transfusion that required an IV which took four sticks to get in.  All in all, it was a really tough day for an exhausted little guy who was so agitated he couldn't go to sleep.  It wasn't a walk in the park for mommy either.

The incision sites on Josh's belly have been a cause for concern to the doctors in recent days.  One site is herniated and red and his original gastroschisis closure site has opened up even though it has been healed for weeks.  The doctors do not think anything is infected, but they are anxious to get him to surgery.  During the surgery on Thursday, Josh will have his intestines examined from top to bottom to look for and remove any blockages formed from scar tissue.  The surgeon will also examine his original closure site to determine what is causing the wound to reopen.  And the last, most important step, Josh will have his intestines reconnected. We will then start from scratch with allowing his bowels to heal before very gradually introducing feeds.  I can't wait to be able to give Joshua more than 10 milliliters of milk!

We will need to move out of our private room in the hospital and back into the Ronald McDonald house while Josh is back on the critical side of the NICU.  Although I will miss being with Josh 24/7, I am hoping a few days in the Ronald McDonald house will allow me to recharge and recuperate before taking on the last stint in the hospital.  It has been a long haul so far and we still have a ways to go, but we will be making really exciting progress this week!  Please keep Joshua and our surgical staff in your thoughts and prayers on Thursday.

I will end this post with two of my favorite pictures of Josh that my sister-in-law, Anne, took tonight.  She is so good at capturing how freaking cute he is!!