6 Days til Surgery

We have known about the hole in Claire's heart from the time that I was 33 weeks pregnant (I still vividly remember crying in the car and calling Justin from the parking lot) and from that moment on, open heart surgery has become something that "might happen in the distant future," to something that would "likely happen," and then a little less than two weeks ago we were told that it was no longer a possibility but a necessity.  Today, it became very real.  Today Justin, Claire and I spent the morning (a little over 3 hours) at her pre-op appointment.  We met with her surgeon (Justin for the first time), anesthesiologist, RN, had a lot of blood drawn so that they can get blood ready for her transfusion, and had an additional set of X-rays done of her heart and lungs.  The surgical team was amazing (and we were emotional! and full of questions).  I don't know how we are supposed to function the rest of this week but I know we will!!!  The Lord is our strength.

We met with the RN first and she went over everything we can expect before and after surgery and recovery, she also showed us what additional things we need to do to get Claire prepared for surgery - clean and cut her nails very short, things to watch for, etc.  In addition to what we've already started doing and all of the medications she is on, we have a nasal ointment that we have to do twice per day starting tomorrow to help kill bacteria and a special soap that we have to start bathing her with daily on Friday.  We are still doing irrigations and dilations as well to keep pressure off of her heart and lungs. We'll be up at 1am on the day of the surgery to stop formula through her feeding pump, then at 3am to stop breast milk, and then she will get sugar water through the pump until 5am. We check into our room in the PICU at 5:30am and she goes to surgery at 7am.

They expect her to be done with surgery sometime in the early afternoon if all goes as planned.  She will be put on full heart/lung bypass and receive a blood transfusion; because she is so small, her body doesn't have enough blood in it on its own to complete the "circuit" for the heart/lung machine. The surgeon will repair her VSD (hole between the ventricles) and ASD (hole between the atria) with patches and he will ligate the PDA (valve that didn't close).  Because she has pulmonary hypertension, he will not completely close her ASD during this surgery as it can act as a "pressure release valve," which would mean that if she were to have a respiratory event, it would allow her body to still receive some oxygenated blood.  Once her pulmonary hypertension is gone and her lungs have recovered, we will go back to the hospital for likely just a one-night stay to have it fully repaired.  Both the surgeon and anesthesiologist went over the risks of the surgery in great detail - they both agree that she is at less risk because of the actual surgery then she is because of the state of her lungs - so her specific risks during the surgery are higher (more than double) what they would be if she was just having open heart surgery without the breathing issues.  If anything were to go "wrong" that is what they feel it would be (a respiratory episode & loss of oxygen to vital organs) and they are taking all of the precautions they can to treat it now, during surgery, and during recovery - they also feel that her recovery will be longer than what is typical because of this. I'm sharing all of this so that you can know what to prayer for - decreased pressure in the pulmonary arteries so that she can get oxygen to her whole body!

They expect her to be in the PICU for about a week and then get moved down to the floor we were on two weeks ago for another few days before going home - this is just an estimate and could be shorter or longer depending on how she recovers.  Most of her recovery will be finished in the first 1-2 weeks but it will take her sternum (breast bone), which will be held back together with permanent wires, about 6 weeks to heal so we will be taking precautions with how we hold her for about that long.

There was a LOT more information but that's all of the major & important things ;).

Oh and she FINALLY gained weight yesterday, until then we've been trying lots of different things.  She is still on the continuous day/night feeding pump and we finally found a "calorie cocktail" that works - I'm not a fan of it at all (and it makes her stink :( ) but it's working and we only have 6 days left so we're pressing on.

If you see us in the next week please have patience, our heads are elsewhere and we aren't functioning like we usually do....  Thank you for your continued prayers, we appreciate you all so so so very much!  "He's got [her whole heart] in His hands" <3.

Claire's first Buddy Walk on Saturday

Claire's Buddies!

The Girls <3!