Monday, October 06, 2008

Baby Story, Part 3: Continued Hospitalization and Saying Goodbye

This has been slow in coming, and I underestimated how long it would be going into it, so this is a long and rambling post. You may need to pace yourselves.


In the weeks previous, I had been slowly getting over a persistent cold and was left with a cough. While it had been a dry cough for several days, it suddenly turned into a more raspy, wet cough in the hospital. This raised concerns of the possibility of pneumonia, so they were frequently listening to my lungs, which were still sounding good.

Throughout several nights, I was monitored with an oximeter, a small instrument clipped to my finger that measured the level of oxygen in my blood and my pulse. The first one I was on only beeped an alarm if I dropped below 94 percent oxygen in my blood. I think I was initially placed on this since there was a concern of possible sleep apnea. If the beep sounded, I was to cough and take deep breaths to increase my oxygen level. Unfortunately, I regularly dropped below 94 percent, so I felt that every time I drifted into a heavy sleep, I was immediately brought out of it due to the incessant beeping.

When I was switched to the Post Partum wing, the oximeter I was on was different in that it kept a steady beep with my pulse and then only increased in intensity if I dropped below 88 percent. Eric and my sister Heather would take turns staying with me through night, and I pitied all of us for the constant noise that kept us from a restful sleep. I think there were only three nights where I wore the device, but I was happy for it to go.

After Katherine was born, a lactation consultant came to speak with me. One of the best things they told me I could do for Katherine was provide milk for her, or 'liquid gold' as one person called it. They explained it may take some time to come in since I was only 24 weeks along, but we began the preparations, and while it was slow going, it was more than enough for her at the time. They started her with 1 ml every three hours, and by the end, they had increased it to 3 ml/feeding since she was doing so well.

My hospital routine consisted of a restless night with frequent blood-pressure checks and medications followed by a day of steady naps and television and wheelchair visits to see our little girl in the NICU. My eyesight wouldn't allow me to read or knit, so I depended on friends and family to entertain me or the occasional movie.

While I was still too weak and needed to be taken in a wheelchair down to the neonatal intensive care unit, Eric would fill the time in between my visits with updates, telling me about the little toy skunk the nurses placed in the incubator with her, and what he called her 'sunglasses' she wore while under a UV light.

On two consecutive mornings, even though I wasn't feeling myself, I took the opportunity to visit Katherine and later admitted that I needed to listen to my body, as they ended quickly when I became sick (I think I traced it to taking my morning medications on an empty stomach, although with my blurry vision I had to be careful to close my eyes to keep from getting dizzy while I was wheeled down the bright hallway). Fortunately, afternoon or evening visits fared better.

Each day, even though the doctors would only admit to being cautiously optimistic, we grew more and more hopeful. We were told the first 2-3 days were important, and when those passed, we looked ahead to future milestones. From Eric's updates:
It's 9 AM Saturday. Katherine is nearly two days old; given her condition, she is far from out of the woods, but the neonatalogist tells me that he is 'cautiously optimistic.' Her lungs haven't been inflating in the way that they were hoping for (which is not surprising, given her age), so they've switched her to a different ventilating machine. The old machine gave her 40-50 'deep' breaths a minute, making her breathing more natural, but since her lungs aren't fully inflating, that method wasn't getting enough oxygen into her bloodstream. So they have now put her on a machine that gives her up to 900 tiny breaths per minute; apparently this allows her lungs to get enough oxygen even if they don't fully inflate. When I checked on her this morning, they had just gotten the first readout of her blood-gas levels after hooking her up to the new machine, and the O2/CO2 levels in her blood were much more encouraging than they were last night.
And two days later:
Monday morning is here, and Katherine is still doing well. She has a very long way to go, but her first four days have been a promising start. She is drinking milk now (though only about 8 mL/day) and seems to be digesting it well. Her biggest problem remains her lungs; it appears that it will be a while (weeks, perhaps), before she is ready to breathe normal atmosphere on her own. This is basically what her doctors had expected all along, though they were hoping that her lungs might have been slightly more developed by now.

Also, today she will have a head ultrasound to discover the state of her skull and brain; there have been no signs so far that anything is wrong, but babies as premature as Katherine sometimes develop bleeding in the brain. If the ultrasound returns good news, then it seems like our little girl might be out of the darkest part of the woods for a while.

Faith's condition is also improving. She is able to walk around a little, occasionally sits in the glider or on the couch in her hospital room, and has made the trip by wheelchair to the NICU to see Katherine at least five or six times now. Her blood pressure has still been bouncing around a little; if it is relatively stable today, she may get discharged from the hospital this evening. Her eyesight is still a long way from normal, but she tells me that her vision in her right eye is much better than it has been for a while.

Beginning Monday, August 25th, doctors began discussing my pending discharge. It was dependent on my blood pressure being stable and my platelets steady or increasing. My blood pressure stayed high, and the doctors had me on three different medications, trying to rein it in. Even with those three, the results weren't encouraging. And my platelets had been dropping without explanation. So each day they would check my blood and delay my release for another day. I felt that I could heal more comfortably at home, so each delay discouraged me more. By Wednesday, I was nearly in tears, beginning to wonder if I would ever get home and wondering if something serious was wrong.

As it was, Wednesday started as normal. Eric made his regular morning trip to the hospital to see me and Katherine, then sent out the following update:
Faith is still in the hospital. Every six hours or so, the doctors tell her that they'll probably let her go after the next blood test, but every time the blood test comes back with negative results. (For those of you with medical backgrounds, we're told that her platelet count is low, and they keep expecting that it will bounce back any day. I really have no idea what that means.) The latest news is that she might get to go home tomorrow, but we'll see what happens.

Katherine is still doing well and keeps doing a little better every day. They've increased her feedings twice in the last two days; she is now taking 3 mL of milk eight times a day, which is six times what she was eating just four days ago. She should really start putting on some weight soon, given the amount of calories they're giving her.

We still have not received the official report from Monday's ultrasound on her head; they have to send the pictures in to some lab to be read, and that lab is apparently backed up right now. But the doctor who performed the ultrasound said that she didn't see anything that concerned her while she was taking the pictures, so that's promising news for the time being.

Also, they did an EKG on Katherine's heart yesterday. I'm probably butchering the explanation here, but my understanding is that there is a blood vessel between the heart and lungs that is wide open in the womb, but that is supposed to constrict after birth. It's not uncommon for that vessel to stay open in premmies, and, indeed, Katherine's was wide open. They are currently giving her medication which is supposed to cause that vessel to constrict.

I paid Katherine a visit early Wednesday as well. The doctor encouraged me to touch our daughter in the incubator, although she reiterated that while it was yet too early for me to hold her, before we knew it we would be changing her tiny diapers.

Eric called around 11:30, asking how I felt if he stayed on campus until his afternoon class, then spending the evening with me. I understood this schedule had been grueling on him, making an average of three trips to the hospital every day as well as attending classes. My sister was with me, so I told him we were fine.

Maybe ten minutes passed before the doctor entered my room to inform me that Katherine's heart rate was dropping and she was giving up. I called Eric before Heather and I headed to the NICU.

Nurses were surrounding her incubator, giving her chest compressions and pumping breaths. I was still holding out hope, thinking maybe everything would stabilize, but I realized the truth when they asked me to sit down so they could hand Katherine to me. Eric realized it when the chaplain joined us and offered to baptize her.

Together Eric and I held our little daughter for the first time as she was baptized and we said goodbye. I don't think I want to detail that time now -- suffice it to say we were brokenhearted to lose our daughter when she had just joined us.

What I wanted most after losing Katherine was to go home and mourn in peace. Unfortunately, the test results kept me in the hospital. My doctor was sympathetic to our sorrow, but he said I was one sick person and he couldn't discharge me until they figured out what was wrong.

It didn't help matters that not everyone noticed the photo of the white rose on our door, the sign to doctors of our loss. The morning after Katherine died, the resident entered my room as usual. He had looked at my numbers and said, "Yesterday afternoon wasn't very good on your blood pressure, was it?"

"No, but it was a hard day for us," I replied.

"Why do you think that was?" he responded.

And incredulously, I said, "Because our daughter died." He admitted he was unaware of that development, apologized, and left our room.

Finally they ran some extensive tests on my bloodwork and diagnosed me with HELLP Syndrome; Wikipedia calls it "a life-threatening obstetric complication usually considered to be a variant of pre-eclampsia". In my case, since I was already receiving treatment for preeclampsia, nothing more needed to be done since my platelets didn't drop to the point where I needed a blood transfusion to stave off any spontaneous bleeding, whether internal or external. One doctor was able to increase one of my medications to finally control my blood pressure, and within twelve hours, my vision began improving and my platelets began to increase. Two days after our daughter died and maybe 18 hours after the HELLP diagnosis, I was finally released from the hospital.

It has been a hard few weeks since everything happened. My eyesight has cleared up and I have returned to work. Our departments have embraced us during this time, providing meals the last few weeks and being sensitive to any help we might need. We held two memorial services, one in Indiana and one in Iowa. And life is resuming a routine, but there are still triggers that set us off and we know the pain is going to stick with us.

Once in a while, I get responses that I wouldn't recommend using in similar circumstances. The "You're young; you can have other children" observation is not welcome (said by someone I only know by sight at church when I began crying during a child dedication). We're aware that it is possible we will have other children, although this is made more dangerous due to the raised risk in future pregnancies now that I've had HELLP Syndrome. We wanted to keep this one and another child, whether biological or adopted, will not replace her.

A mother of two asked, "Do you miss her?" Of course we do. We didn't have weeks or years with her, but she was our daughter and we had been anticipating this event for a long time. Even friends who miscarried or had a stillborn have shared of their great pain.

While I've written much here, there is still plenty more I could have added. But as far as an account of what we experienced, here it is.


Rachel said...

Thank you for sharing your story. We are praying for you and Eric.

Snot Head said...

Thank you so much for sharing this story. Sometimes people say things that are completely unhelpful. The whole, "She's in a better place now," bit doesn't make a mourning person feel better. We already have that understanding with no need to be reminded.