First, a quick explanation on the picture to the left. The diaper you see there is the diapers that the preemie babies in the NICU wear…smaller than a dollar bill!!! The picture of Casey and I was taken three weeks ago when she was 20 weeks pregnant! Moving on…
As if our week wasn’t crazy enough with our little hospital excursion, we also had a meeting on Thursday called a Patient Care Conference where we met the team of people who will be involved with Casey’s and the babies’ care once we get closer to delivery. There were nurses, doctors, clinicians, neonatologists, perinatologists, obstetricians, a rep from legal, a couple VP’s of something or other, and even one of the chaplains. In all, there were 20 people in the room, not including Casey and I. Twenty people who represented different teams that will be responsible for making labor and delivery of our babies a success…WOW!!
We had already been told that there will be at least 18 doctors present at the delivery (3 assigned to each baby and 3 just for Casey), but we found out that there will be at least 30-40 people involved at any one time while the C-section is performed. The hospital has organized teams of doctors and nurses who have volunteered to be on-call 24/7, including holidays and weekends, starting at 24 weeks and continuing until the babies arrive to ensure that they have all of the needs covered when the time comes.
A Herculean effort to be certain, which we knew was coming, but seeing all of the folks in the room and hearing them describe their role in the birth of the quints served as a little dose of reality as to the magnitude of the situation we are faced with. The doctors discussed several of the different risks involved with premature birth as well as the probabilities of survival and disability and they have asked us to make a few decisions in regards to resuscitation efforts (resuscitation was defined for us as any use of breathing tubes or other equipment necessary to keep the babies alive).
Probably the most striking statistic that was thrown at us was the survival and disability rate as it relates to gestational age of the baby when it is born (the number of weeks that Casey has been pregnant which is 22 weeks as of today). At 24 weeks, the survival rate is 25% and of those that survive, 95% have long term disabilities which may include Cerebral Palsy and severe mental retardation. At 28 weeks, the survival rate is 95% while the disability rate is only 5%. What a difference 28 days can make!!
Casey and I have already made the decision that no resuscitative efforts will be attempted prior to 24 weeks. The likelihood that any of the babies could survive if born that early in their development is highly unlikely and if they did survive, it would only be through incredible intervention that would be very hard on the babies. Beyond that, we have been asked to decide what level of resuscitative efforts we will allow assuming they make it past 24 weeks. Will we allow a breathing tube, chest compressions, or anything beyond that? I don’t know what all of the different levels are, but it is something we will be talking with our doctor about at our next appointment on Monday.
After the meeting, a couple of the nurses took us through the NICU and allowed us to see a few of the babies they were treating. That was an incredible sight to see!! These babies were SOOO little!! It was cool to see the wall of baby prints that they had on display and see how tiny their little hands and feet were. It’s hard to imagine we’re going to have five of these little guys in a couple short months!
All in all, the meeting went very well and we were thrilled with the level of concern that the hospital is taking in preparation of our arrival. We had been counseled on the risks and probabilities of survival and disability when we first found out about the quints so we were not disheartened by this news. We were actually advised to undergo a selective reduction at the very beginning to get down to two babies because the risks are so high. Clearly, this was not an option for us!!
As far as our mindset is concerned, not much has changed. We knew from the beginning that this was going to be a dramatic experience in our lives and it has certainly lived up to expectations! Casey and I have leaned heavily on our faith in Christ to get us to this point and we will continue to do so to get us through the next couple of months. We can use all the prayers we can get so please continue to pray for the health of the babies and for Casey’s body to remain calm as it continues to grow and change rapidly! Please specifically pray for guidance and clarity with the decisions we must make in regards to resuscitation. We’re wading into really murky waters with what is the right thing to do and can use some guidance on this one! Thank you all so much for your love, prayers, and support!!
God bless,
Ethan
