Interesting Day

Today was a big day for several reasons.
1. Joanna had her liver ultrasound done and found that the spot that they had been calling hemangioma is now half the size it was last time. Therefore, it can't be an hemangioma because they don't shrink, but a healing bleed. So, back a few weeks ago when her blood counts were low and the thought this may be the problem it probably was but they mis-diagnosed it as a hemangioma.

2. Joanna also had her echocardiogram today. It was funny because the girl that did the ultrasound saw Joanna's last name and she told me she met another couple recently that had that last name but pronounced it . She recognized the name because her name was Barnard pronounced . Then we both realized that we had met each other when she did Rebecca's echo a few weeks ago. I assured her I didn't have any other infants at any other hospitals. The results of the echo showed she still had the PDA open and now showed another "hole" called a PFO. This is a "hole" that connects the top two chambers by design while in the womb. It is also supposed to close by a flap at some point but hasn't yet. The Dr. said it wasn't an issue now because her blood pressure in those chambers was still ok. They will follow up with another echo in a few weeks. I am unsure if they missed it in her last echo or if they just didn't mention it because it wasn't a worry.

3. The spot in Rebecca's abdomen was not clearly diagnosed by ultrasound so they are doing an MRI tomorrow at 1:00. They think it is a cyst and they said it was lymphatic. They originally thought it was on her ovary but may be on her liver or small intestine. At one point this morning, between 3 different surgeons Jessica got the impression they were going to do surgery today. They decided to do the MRI to get a better picture.

4. The biggest and most upsetting news today was what transpired during doctor's rounds with Rebecca. Yesterday, Jessica was told by cardiology that they were going to try to get her scheduled in the next couple of weeks for her procedure. Today, the cardiology team was at Dr. rounds which is a first that I know of. Out of the blue they changed the plan to hold off on her procedure until she was near being discharged as long as the reason for her still being intubated wasn't because of her heart. Jessica said it clearly caught the medical team off guard. We have 2 issues with this decision. First of all, why are they changing their plan when they have been saying all along between 1.5 kg and 2.5 kg. She is 2 kg today. The other issue is, we have been questioning her intubation for weeks ever since Joanna was extubated. I didn't realize it until I just went back and looked, but Joanna was extubated at 9 days old. They are now 44 days old. Joanna had much worse lungs mostly because of her lack of fluid and more prematurity. Today we are told that her heart condition is not contributing to her still being on the ventilator and they will start weaning her from it aggressively. Needless to say we are quite upset and I will leave it at that until we get more answers tomorrow. After Jessica and I left, cardiology came to meet with us so we will meet tomorrow. As soon as I got here we did talk to her attending doctor and it sounds like they were planning on the procedure being sooner rather than later so they elected to leave her intubated until after the procedure. If they had known cardiology was going to put it off they would have worked on getting her extubated long ago. Anyway, I expect some clear answers in the morning and hopefully it all makes sense.

Aside from all of that, believe it or not they are doing very well. They are both keeping their oxygen saturations up relatively well and seemed to be resting comfortably today. Please pray for an MRI that shows nothing to be concerned with, that Rebecca will transition off of the ventilator quickly, and that their doctors and other staff are providing the best care possible.