who said there are no free lunches?

Happy May Day!  John and I celebrated by going to Potbelly in Dinkytown for sandwiches in between feedings.  The manager/owner was working and was really friendly, asking us what trouble we were getting into today, etc.  I explained that we were just on a quick break from the NICU.  He said that if our baby needed any help learning how to eat, she should talk to him--then he told the cashier that our lunch was on him--what a nice thing to do!  So if you’re ever in the neighborhood, stop on in … [Read more...]

aren’t you going to wear a coat?

Today started out with Grandma arriving at our house at 6:30AM (like she does most days she doesn’t work) to get to the hospital in time to wake Sophia for her 7 o’clock feeding.  On the way out the door, she said to me:  “Aren’t you going to wear a coat?”  Without hesitation, I grabbed a coat.  Guess you never stop parenting, even when your child is 36!   Hopefully Sophia will be as willing to wear her coat just because Mom said so (fat chance, I know).   In rounds today, the discharge nurse … [Read more...]

another first

This first isn’t the type parents are normally proud of--she had her first explosive diaper, the kind that leaks out.  Unfortunately, it happened while she was nursing, so she left some on my clothes too (so much for the idea of a winter white wardrobe hiding all of the baby messes).   The first that we are really excited about is that she took 40 ccs (almost 1.5 ounces) breast feeding--and took a full bottle on either side of that.   The picture above is her “after” picture--on her scale. I … [Read more...]

momma needs Ben & Jerry

In rounds today, the weekend doctors were especially concerned about the fact that Sophia really hasn’t gained any weight since she’s been here.  They spent a lot of time debating how to get her more calories--breast milk analysis, formula, increased fortifier, etc.  One recommendation was that I eat more high fat dairy products--that’s an easy one to follow!  They ended up agreeing to wait to see how she did on the synthroid medication before they gave her a known amount of calories (from … [Read more...]

hypothyroidism

Yes, Sophia has another diagnosis consistent with babies with Down Syndrome.  Her test results came back really high (meaning her thyroid isn’t working properly), so they have started to give her synthroid to counteract this.  They think this will make her more alert and gain more weight--we are really hoping that this will be true.  It will take a week or so to kick in, so I expect we’ll have another couple of weeks here.  They have talked about putting a “G tube” into her stomach if she isn’t … [Read more...]

Sophia’s due date

I told Sophia all day that since it was her due date, she was now old enough to eat like a full-term baby.  She did eat really well for a few of her feedings; stayed off all oxygen and air flow all day long (and lost the stickers on her cheeks for the nasal cannula); gained 50 grams; didn’t have an emesis all day; and seemed to figure out that if she squawked a little bit, Papa or Mama would pick her up.   The cardiologists started her on another diuretic to keep the fluid off her lungs and … [Read more...]

bottom’s up!

Today was a day of milestones. Sophia slept on her stomach for the first time today, which, according to the nurses, aides in digestion and it really seemed to work since before her feeding she only aspirated 1ml which is the least she has ever had remaining from the prior feeding. She is strapped into a “Danny sling” to keep her from sliding down her crib since the head of her mattress is elevated so high. At times she looks like a little rock climber. She’s getting pretty coordinated at moving … [Read more...]

bye bye oxygen, hello home!

Although she was briefly put back on a flow last night Sophia has been going all day without oxygen and her stats are remaining steady. She has also refrained from spewing all over me... for the most part, which means that all in all she is doing very well. Now if she can just keep this up and put on some baby fat then we are well on our way to taking her home for the first time. It’s so fun to finally see those cheeks again and put clothes on her that have to go over her head! It seems that she … [Read more...]

heart surgery day

Today at 8AM Sophia went in for surgery to repair a coarctation of her aorta. The two of us and her two grandmas got to the hospital really early so we could hold her before she went under the knife. It was hard to watch them take her away, but we were very hopeful about the outcome. We learned that her surgeon, Dr. John Foker, is one of the most respected and accomplished surgeons in the field of cardiac surgery and we immediately fell in love with him. He is a towering old Englishman with a … [Read more...]