Our Heart Boys

Patrick had a follow-up appointment at the heart center this morning and they were pleased with how well he is doing post-op. He has gained weight (tipping the scales at 15 lbs 1 ounce) and his “zipper” is healing nicely. Patrick’s head was in the 40th percentile before surgery and despite the amount of blood that backs up in a baby’s head after the Glenn procedure, he is still only up to the 50th percentile for head size. That means he only has “Glenn head” minimally.

Patrick’s cousin, Jeremiah,  is settled at Primary Children’s Medical Center. His lungs are stronger than they had initially thought and they have been talking about ECMO (a machine that will put oxygen in his blood) and surgery today. From what I have heard, they have had some ups and downs, but Jeremiah continues to fight and to surpass expectations. Thanks everyone for your prayers for him. Be strong baby J, we love you!

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No Place Like Home

Patrick was finally discharged last Wednesday, Feb 2nd. Happy Groundhog’s Day to us!

On a side note, Patrick’s Aunt Aubrey also came home from Brazil that day–she had been serving as a missionary for over a year and a half. A good day all around.

Here he is with Dr. Lane, one of the Pediatric Intensivists, and Dr. Nigro, Patrick’s heart surgeon:

Ready to roll out:

Patrick rebounded really quickly with the feeding tube (NG tube) in the hospital–we were able to keep his belly full. Unfortunately, it was a bit TOO full most of the time and he had a lot of trouble keeping the food down. I don’t think he like the Portagen any better in reverse…

I had to put the tube in to prove that we could handle it at home in order to get discharged. Here I am using my lovely plastic stethoscope to make sure the tube is in the right place. If I could hear air “popping” into his stomach when I pushed it through the tube then we were good to go.

We were pretty excited when one of the Nurse Practitioners suggested that we try Enfaport, another non-fat formula. It is new or not-as-common or something like that. Patrick likes it much better and although he came home with a feeding tube–it came out the next day and we have not needed to put it back in. He is eating on his own, and getting closer and closer to the amount of formula they would like him to have each day (about 25-28 ounces).

We are also allowed to give him breastmilk now as long as we remove all of the fat. We thought Patrick would be delighted to have breastmilk again–but he didn’t really react much. Maybe it isn’t as delish without the fat? I can’t blame him. At any rate, he likes the Enfaport just fine so we are sticking with that to play it safe. After this month his lymphatic system should be well enough to go back to our regularly scheduled feeding program of the fatty-fat milk.

Patrick is thriving at home and we are so grateful for all of the prayers and support that got him (and us) through this adventure. I can’t even tell you how nice it was to have people feed us, visit us, write/comment, and I am still amazed by Patrick’s fantastic grandmas who helped care for him in the hospital. Thanks to them I was able to spend some nights at home in my own bed, leaving Patrick in good hands. He is one loved little dude!

Patrick’s bedtime schedule is still a little out of whack from the hospital, but that is a small price to pay for his heart to be working so much better ♥.

Too Smart

We have their attention today because P is so miserable. He refuses to eat the formula, so we finally let them put in a feeding tube. As much as we hate it, it is better than starving the poor kid. He’s onto our tricks and won’t be convinced to eat the nasty Portagen.

Here he is asleep with a chocolate dribble down his cheek. The nurses had us try mixing chocolate syrup into the Portagen to improve the taste…it helped a little at first, but now he will probably just hate chocolate milk forever.

Vent

11pm-12:30 tried everything to get Patrick back to sleep. 12:40 finally put him back in bed (keeping the chest tube safe AND avoiding hitting the metal crib with any of the monitor attachments, among the regular precautions one must take when putting a sleeping baby down). 12:45 the charge nurse arrives to assess the patient. 12:50 Patrick is wide awake to play with the nice man with a British accent. I wanted to cry, but it was just too classic…Now it is 1:30am and P is asleep in his crib once more and that means it is time to go try and feed him in his sleep.

[Yes, I know I’m not helping things by venting instead of sleeping…]

[And I am extremely happy that Patrick is mine and that he’s doing well enough to drive me crazy…]