Let me start by saying that,
Yes, I of all people know how important our baby's health is.
For some reason, any time I express less than thrilled feelings over all that we have
and are currently going though, someone chirps up with
"What matters is a healthy baby."Without meaning to, what this statement communicates is that somehow I have put my feelings above the needs and health of the baby.
And I also disagree.
There are a lot of things that matter. The baby matters.
The experience matters. The memories matter.
I have spent years supporting women after they have been released from the hospital with their baby as a clinically physically healthy "duo", only to struggle with the effects of their experience for weeks, months or even years. Depression or post traumatic stress due to birth trauma are very real and very devastating.
Feelings matter, too.
I sent a flurry of emails, first to my Perinatologist, but the responses were very neutral and distant, stating that he was in support of what ever the Neonate recommended. I contacted the Nurse Manager and other Perinate, and they tried. Finally, yesterday afternoon the Head Neonate who set it all in motion called us to actually explain to me what is happening.
This is my attempt to explain it.
First, a few important points that we have learned: When a woman is pregnant, she is two patients in one. Some of the problems a baby has in-utero are very "different animals" once baby is out of the womb, and in this case much worse
An OB is only the baby doc when baby is in, once out, the baby is lobbed like a football into the field of the Neonatologysts.
There is not any contact with the parents and the neonates until baby is out.
RH iso-immunization means my blood's antibodies have been attacking baby's, but to what degree we don't know.
After the baby is born the antibodies continue attacking the baby's red blood cells for up to four months.
In response, the baby's bone marrow makes a huge surplus of red blood cells.
Those blood cells are tiny at first and don't cause a problem, so by the time the problem manifests itself as deterioration in the baby, the problem is much bigger than it appears.
The faster the least invasive treatment is used, the less likely the more invasive treatments will ever be needed.
As we learned, our baby could be born and appear to be fine, only to become very sick days or even weeks after going home. By the time the disease manifests itself in a sick baby, the remedy is far more extreme than it would have been if treatment had been anticipated and started early, including blood product based medicines and double blood volume transfusions.
Because my titers have increased, showing active sensitization, and because the level has reached the borderline between safe and dangerous, we have decided to birth at the high risk hospital.
Sadly, losing access to the labor tubs becomes a small matter in this situation. The least invasive treatment for the baby is phototherapy. This will mean that when the baby is about an hour old, they will take it away from me and put it in the NICU under intense bili-lights completely naked, not even a diaper. The baby will be allowed out of the lights for 15-20 minutes once every 3 hours to breastfeed, and will stay for a minimum of 4 days, but more likely a week. If baby does not respond well, we start getting into scary territory.
I am working my way through what this means, what we will be losing and otherwise forced to deal with. Keep in mind that I usually push out my babies, pick them up into my arms and don't put them down for days. I spent last night in tears. I spent today in research. I don't know what tomorrow will bring.
What I do know is that this is hard, and I am sad and overwhelmed. We have a lot to figure out, and we still don't have an actual plan. There is a lot more, too much more really, but a few of those things are:
The NICU is two floors away from the Postpartum ward.
They can offer me a reclining chair to use in the NICU.
I will be allowed to touch the baby, but I will not easily be able to reach unless I am standing up.
I will be dealing with my blood clot and postpartum bod.
I can only stay on my feet about 1-5 minutes right now.
I will not have nursing care for me when I am with my baby, and will be required to return to my room for all scheduled care, vitals, etc.
Baby turned last night back to head down while I slept. I am praying it will stay head down. If it does not, I will have a cesarean. Now go read that list above again.
I know God has a plan.
I have no idea how it will play out.
Knowing that doesn't make it much easier.
I pray a lot.
I am exhausted and hurting and not sleeping much.
I am waiting.
I am trying to stay positive.