This morning I woke up to my husband telling me “It’s out, she took it out, let’s go!”

In spite of the little hand mitts that we have enclosed her grabby hands in, she managed to pull the NG tube right out. What does this mean? Either a trip to Jordan or to South Shore Emergency Room to have it put back in but lucky for us it was Visiting Nurse Day and she put it back in after a few tries. It’s not as easy as it looks. You have to make sure that you have lubricant, which we didn’t, so it goes down smoothly. Needless to say there was some screaming and a very unhappy baby who passed out after the last piece of tape secured the tube.

When she was tubeless, it felt great to kiss both sides of her cheeks and to see her start looking like a normal baby. I was hoping Dr. Levine would tell me that we didn’t need anymore because she has gained so much this far but that wasn’t what she said. What she said was that it was great that she was gaining and growing like a weed, but we will probably have the tube in even after she hits the 4 kilo mark because she may not take a full bottle orally. I do see potential on occasion throughout the day but I can see why they are concerned. It’s just another frustrating piece of having a congenital heart defect.

Tomorrow night on channel 5, a fellow HLHSer will have their story told. It’s amazing to see so much recently about HLHS considering prior to March 5th I never knew it existed. I know many moms whose children have HLHS and watch them go through challenges and small victories. One of my favorite people to watch is a 21 year old HLHS young lady named Megan. She is everything I want for Izzie. I try to keep her in mind as I see that the cap of the tube popped off and the bassinet needs to go into the washing machine.


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