A rather odd anniversary

Today is our anniversary, but it has by no means been a normal day.  Just the same, we are so glad that God has given us one another, that these boys are still with us, and that we are together in our greatest trials.

Last night I (Frank) took my blood pressure at the University of Cincinnati fitness gym and it came back high.  Very high. Stage two hypertension.  I took it five minutes later and it came back still alarmingly high.  Nicole's nurse told me to go to the emergency room because my numbers were stroke numbers (180/110), but I punted cause it was a machine and machines are not always calibrated right.  So this morning we have a very important Echo Cardiagram on the heart of both boys, however, most of the attention is obviously paid to Bryce in these affairs.  The results were very welcome!  There has been no meaningful change in the overall condition of his heart over the last two weeks.  He continues to defy expectation and hold so strong.  His pulmonary valve is not leaking, blood is effectively being thrust through the body in spite of the sever regurgitation in the tricuspid (coming before the PV).  His heart has not enlarged any further.  He has not developed an arrhythmia, the pressure is high, very high in his heart but that is actually good.  His walls have thickened, but that is good as well, a good reaction to a bad condition.  This was such a great relief!  All of it.

We spoke at length with the head of Fetal Cardiology at Cincinnati Children's and while he was candid about the odds, meaning, he admitted that many kids with a heart sick like this are lost after birth, our Bryce has not only tolerated it well but his heart has actually responded well and does not appear to have become alarmingly sick.  While there is absolutely no way to know which way he will go, the Dr. also said that it is possible he will require no assistance and could be released relatively quick which would mean after around 30-45 days post delivery.

The obstetric findings yesterday seemed to argue for a delivery sooner, as in at 32 weeks (this Monday) rather than 34 weeks and cardiology said they did not feel that it made much a difference either way from their position.  So all the information was turned over to the Fetal Care team, Dr. Habli, Dr. Polzine, and Dr. Lim to fashion a game plane that weighs the risks of keeping the boys in (Mono/Mono) against the risks of taking them earlier than we might otherwise.  We are still waiting on our consult with them to map out a plan of delivery.  Whatever that plan may be, it may change at any moment if the boys have different designs or if entanglement puts them in a compromising position.  And speaking of entanglement, Bryce's heart rate dipped for a prolonged time during a contraction in this afternoon's monitoring keeping the monitors on Nicole an hour extra.  While it did send off alarm bells, the rest of his chart looked great.  Finally, both boys measure over 3 lbs. now and their growth has beens steady but the rate of growth has slowed lately and is below normal.  This is not abnormal for twins but it may contribute to a decision to take the boys sooner (32 weeks) rather than latest (34 weeks).

So I did step into the ER today and started to check myself in but backed away.  I would really like to be able to wait to deal with the hypertension till we have some plan with the boys and I would like to do it with the Heart Institute at Children's. Cincy Children's has an adult heart institute focused on congenital heart disease (such as Bryce's) and Dr. Michaelfelder is writing a referral for an Echo on me.  Their fetal team all recommended I have my heart checked (it never has been) because my dad had a congenital heart defect (leaking Mitral Valve) and one of my son's has one in the form of displastic Tricuspid.  It would be my preference to look at the whole cardiac picture at one time and to plan that around the boys but I did feel very strange all day and I think the knowledge of the problem might have compounded the problem by creating more stress.  I felt deflated for a moment.  I have been the one on my feet, on the go, doing what has to be done for Nicole, the boys, the family and so on so it was discouraging to think that something might compromise my ability to perform right now.  That said, realistically, I believe it can be corrected and I am optimistically doubtful that they will discover any leakage or long standing heart defects in my own Echo.  I think I just about hit a wall for a moment when Nicole called and said that Bryce had dipped alarmingly long and I ran back from the RMH to Good Sam, but my walls tend to be only short fences that need jumping over.  Nicole did take matters in her own hands as she panicked and repositioned her body - rolled over which almost immediately relieved the Bryce's cord compression and his pulse recovered.

So, tonight we have big plans to take it easy in the room.  I grabbed her some clothes from a thrift shop so she could fancy up a touch for our anniversary, bought some flowers and a vase, and I am going to get indian take out and we are going to watch the new Les Miserables for our big night of doing nothing much.  God's presence and goodness have been blatantly obvious to us through this time.  The love of our family, friends and church family has been amazingly encouraging and even empowering.  And we know, come what may, we will be in God's perfect plan and will have been strengthened so much along the way, not only in our faith and spiritual life, but in our love for one another, our trust in one another, and even drawn closer still to our wonderful, beautiful, amazing kids who have been remarkably durable and adaptable.  I would also like to mention how very little Nicole has complained through all of this.  She has undergone some significant family of origen drama, taken from her children including her Eden and confined to a bed or sofa since February and here in a Cincy hospital heading into week three and she has not shown self-pity nor a speck of bitterness at her state.  She has submitted to whatever has been called of her for the sake of rescuing our smallest and weakest.  I have no idea how God took such as mess as she had made of herself and made such a good-hearted rock, but mysteriously, in his love, He has fashioned quite a woman and I am blessed to have her.