it’s code

The interns and residents started coming by at 7:00 this morning.  They like to examine Sophia and ask about her night to get prepared for rounds and questions from the attending doctors.  I started negotiating to get the high-flow oxygen removed entirely–it seems to me that she’s had more problems with it, she doesn’t need it for oxygen, she really dislikes the prongs in her nose; they don’t stay in any way; and it occasionally shoots water up her nose from the humidity; and it doesn’t make moving her around very convenient.  


She lost 10 grams (1/3 ounce) today, so they are  happy with her diet.  While I was dressing her, one of the hospital’s codes came over the loudspeaker–we hear them quite often really but this one struck me harder than the others–code pediatric  in a room just a few doors down.  Medical personnel rushed past our door.  It made me cry to think about all the trauma experienced here and how vulnerable our little ones are–of course, she is safest here, but at the same time it can be a really scary place.  


Our dear friend Christine came by this morning to meet Sophia.  She’s a special education teacher and a friend we both got to know while working at Camp Friendship.   It really got me thinking of how John and I have come full circle. We first met while working with children with disabilities and now were trying to figure out how best to raise our little daughter with Down Syndrome.  Many of the folks at the hospital have made a special effort to tell us how much they enjoy working with children with DS–they say they fight over who gets assigned to them (maybe that’s why we have been having a new nurse everyday.)  They seem to feel better when we tell them that we have both had a lot of exposure to people with DS.  


Coincidentally, we also heard from another couple we met at camp today.  They sent a book called “I Love You Through and Through.”  I read it to Sophia and she cooed–I think she loves us too.


The GI team came in (after I quickly stopped pumping) and said they were embarrassed that they still didn’t know about surgery.  I then started advocating that they let Sophia go home while she waits for surgery since she is doing well.  They agreed that from their perspective we could take her home and would just need to get trained on using the pump for her milk.  We just had to get the permission from the other teams, too.  


Pulmonary came next (while I was trying to finish the pumping I started before GI came in) and I asked them the same thing–and they agreed!  He just warned us that we shouldn’t expose her to kids under 6 (apparently they spread a lot of viral infections) and shouldn’t do any home repair projects that put particles into the air .  This home repair prohibition apparently lasts for the baby’s first year, since her airways are so tiny (Papa was thrilled when he heard this).  The pulmonary team also agreed to remove her high-flow air and she seemed much more content to have that rotten thing out of her nose.  They are starting to think she might have some chronic lung disease (I guess this is common for babies who have been on oxygen for so long).  They also noticed on the x-ray that her lungs were hyper extended, which makes it harder for her diaphragm to work (apparently this isn’t related to John having extra large lungs).   She’ll have another x-ray tomorrow morning to see if there is any change without the high-flow air.  They also discontinued the Nystatin she was on to prevent thrush.  This is really great since Sophia always coughs and gags when she has to take it, even though she doesn’t mind the taste (and the chance to get something in her mouth).    


Pulmonary also wants her to have a bronchoscopy during her G-tube/Nissen surgery.  As it turns out the ENT docs will do that procedure–they’ll put a rigid scope down her trachea and esophagus so they can see whether she has any obstructions that would impact her breathing.  They don’t really expect to find anything given that she doesn’t really make noise when she breathes, but they feel like they should check for every possibility.  


We had G-tube training today to learn how to use the pump, clean the site, etc.  It sounds like home health will also come out to check in on how things are going with it.  We think the plan will be to try to get her up to bolus feeds (the same rate/volume as if she were eating by mouth) from continuous feeds before we go home.  We’ll have a little knapsack for the pump so we can feed her anywhere.  She’ll get a longer tube initially, which will be replaced with a little button (Mic-Key), which is more low profile, in about six weeks.  


When we got back from training, our nurse (another Concordia grad) told us that she had bad news and good news:  “The bad news is you can’t take her home before surgery, but the good news is her surgery is tomorrow at 1:30.”  We were absolutely thrilled to finally have this scheduled.  Now that it is planned, however, I’m nervous again about the surgery and the recovery.  It’s been so fun to have her so alert, wide-eyed and happy, it will be hard to have her intubated and sedated again.  I guess the surgeon likes to keep the babies sedated for a couple of days so that they don’t cough or anything to disturb the site.   We’ll be moving back to 5C–the PICU–after surgery tomorrow.  


Since we will be back in the PICU, we won’t be able to stay with her overnight, so we moved everything home tonight.  Not only did we bring all of the things we’d accumulated here, but we also had two big tubs of breast milk containers.  The charge nurse came in yesterday and asked if we’d be able to bring some home since it was taking up 2/3 of their freezer.  I’m not sure how we got that much in 2 1/2 weeks when she was eating regularly, but we now have two big bins full in our freezer at home!


When the doctor came in to have us sign the consent form for surgery, he told us that since there was a cancellation for tomorrow morning, we’d actually be going in in the morning.  So, Sophia has a 5AM chest x-ray and then will be moved to pre-op.  She’s had her special bath and will stop eating at midnight.


Little Sophia got to take another adventure in her little red wagon.  It was probably be her last trip outside for awhile, so we were glad it was such a beautiful day.  It was probably a little too sunny for newborn skin, so we bought an umbrella in the gift shop and attached it to the wagon.  She looked like a little princess sitting in her throne with her parasol and big collar (neck support)–and a couple of cords hanging down.  She got to make her second visit to Ben & Jerry’s, where mom and dad each got the new lemon meringue pie ice cream–yum!


She’s sleeping peacefully after rocking with Papa–she must know she has an early day tomorrow.  Will update everyone tomorrow after surgery–cross your fingers!