Saturday, May 7, 2011

Delaney Update: 5/6

One of out biggest fears was that as we shifted home that Delaney would be getting the proper care. From the very beginning when we weren't even sure she would make it, we didn't want her suffering, starving, or in pain of any kind. We trusted our instincts and today got her on the right track .

It was a busy day. Not a lot of time for rest, and we had a lot of energy spent on listening and learning - preparing for this next phase. We were all drained physically and emotionally. New services, nurses, and equipment.

We were pleased to meet the home care nurse and complete our intake. She was very sharp, high energy, and no nonsense. Her focus was baby first and parents second, which is really what we want. In that vein she got through gathering information about our history and then everything else was all about our little rock star. She was weighed and measured, vitals checked, and nutrition needs were assessed.

At her weigh-in we were heartbroken to learn that Delaney has lost a pound since being home, not at all what we expected, although we thought she might be losing a little since building up her stomachs tolerance for food, since the NEC. We just felt awful that we've failed to get her feeding right to this point in time. We are now on our first day of Human Milk Fortification, which should help increase her calories. We will be getting biweekly weigh-ins and the nurse will help us to monitor her nutrition, hydration, etc. It's good to know that we will have the support we need with our goal for recovery, we want nothing more but for our sweet baby to thrive.

After our intake with Home Care, we had to quickly get ourselves together and head down to Children's Hospital for our cardiology appointment. We met with Dr. Summerfield who was anxious to see us and we caught her up on all the developments with Delaney. She was amazed and thrilled.

As for the medical side of the visit, we learned that the Coarc has not retracted much, if at all. We were glad because this means that we still have time to address all of her other issues and not have to worry about open heart surgery, just yet. They assessed her blood pressures on all four limbs which is important to be able to note any difference in upper and lower extremities. In her case, today we are within a healthy limit. She explained that while the catheterization was sufficient, open heart surgery would improve this much more but there isn't any rush on that.

She added that some more work should be done to fully assess her pulmonary function, the whirlwind of getting Delaney home we never got a good picture of what was happening with her lungs. You see, the Ventricular Septal Defect (VSD, "Heart Murmor") has an impact on her lungs that forces more blood in that direction. As a result, there is higher stress on that organ and within a lot of fluid accumulation. Apart from the VSD, there was a notable issue in her left bronchus where there is a slight narrowing. We are hoping that a pulmonary specialist may be able to find out what's going on and find a solution. So, now we need a pulmonary specialist. (If we get her lungs in good shape perhaps we will have less issues with secretions and worry less about clearing her airways and in turn get more sleep. The thought of that is heaven.)

This trip to CH is what drained us the most today. We anticipated an hour or two and it ended up up lasting three hours. It was stressful on us, so poor Delaney really had a hard time towards the end. She's still so fragile and we could tell that her breathing was much more labored as we got ready to go home. It's taken a few hours being home to see her calm down and breathe easier, I think she knew where she was...we weren't happy either so I'm sure she picked up on that too.

We know we are doing the right thing and putting our baby girl in the best position possible for this second chance at life. It's hard for us, because it isn't one or two "things"'s four BIG things. We are driven to our wits end from time to time. We are so tired, and hate that we have to be in this position. However, our resolve is strong. Our minds are clear, and our faith is keeping us going.

Prayers for rest and strength. would be best served today.

Love to you all!

B & L & d

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