The Story of Laurel Marie's Month in the NICU

Laurel Marie was born on 11/11 at 6:54 AM, one week before her due date and after 28 hours of labor, including five hours of pushing (and with no drugs involved except for the antibiotics that were given to me because my water had broken at the beginning of the labor; ironic given the amount of drugs our poor baby has had since...). Her 1-minute Apgar was 6, and she was whisked off to the nursery because she was having some difficulty breathing (grunting a lot). Her 5-minute Apgar was 8. Her pediatrician was called, and although her breathing straightened itself out, it was noticed that she was extraordinarily irritable and tests were run, including a CT scan. It was discovered that she had had bleeding in the ventricles in her brain, and the decision was made to transfer her to a hospital with a Level III NICU. The transport team noticed that she was having seizures. The seizures were extremely difficult to stop; it was three different drugs and several days before they were under control. Meanwhile, I was still back at the original hospital, dazed with severe anemia (I lost a lot of blood upon delivering the placenta because of the way it tore) and with having only seen my daughter for about five minutes before she left. The whole thing seemed like a bad dream. My midwife was somewhat reluctant to discharge me because of the anemia, but when it became clear that that was the only way I was going to see my daughter, she let me go on Sunday afternoon (the 12th)...that night as I was wheeled to the NICU at the other hospital for the first time and I saw my tiny daughter unconscious from the drugs and hooked to myriad tubes and wires, reality came crashing down.

In the next few days, the new pattern for my life was established...attempt to sleep, breastpump, more attempt to sleep, pump, eat breakfast, shower, pump, go to the hospital, pump, eat lunch, watch our daughter sleep, pump, go home, nap, pump, eat dinner, back to the hospital, pump, more sleeping daughter, pump, then do it all over again...the days passed, the seizures got under control, and we had a meeting with the doctors that Friday (the 17th). They were going to start cutting the seizure medication (removing all of one medication and half of another - she had not been given the third, a short-acting drug, for a while), they said, and if her EEG that Monday showed no seizures they would look at taking her off the respirator she’d been put on. We were warned that she might not tolerate being off the respirator, and told that if she couldn’t it might be best to just let her go. We were told that her prognosis could be anything from being a completely healthy little girl to being mentally retarded, physically disabled, or both, but since it had taken so long to get the seizures under control they were beginning to fear it would be worse rather than better. We were shown her MRI film, with the bleeding in the ventricles and a diffuse bright pattern across her cerebrum, which, we were told, could either mean that there had been an episode of lack of oxygen to the brain (hypoxia) or could just be due to the seizures; if the latter, it would go away with time and not be seen in later MRIs. At that point, they thought it was probably not hypoxia because there were no other signs (such as other organs damaged) but were completely baffled as to what might be causing the seizures. We were scared but hung on.

An anxious weekend passed. She got through the weekend with no visible seizures...but two seizures were seen on the EEG on Monday (the 20th), and the level of one of the drugs that she had been on was raised again. Removal from the respirator was out of the question for the time being. Then she started to have episodes of low heart rate and apnea. Another MRI was run, because additional swelling in the brain could have been the cause. The good news - no further swelling was seen. The bad news...the bright area was still there (meaning that there had been hypoxia) and there was evidence that cells were dying throughout her cerebrum and that it was shrinking. The doctors told Bob while I was in the "family room" pumping. He came in and told me. We both wept hysterically. He said various things I didn’t want to hear about her future - I remember yelling "You don’t know that!" at him repeatedly (heaven only knows what the people in the NICU on the other side of the door thought). Funny thing - I never got so much milk as I did that time. So much for being relaxed and thinking happy thoughts! I finished and we went out and talked to a doctor. She told us that she was very concerned that our daughter would be severely disabled. We told her we were worried that Laurel would be a vegetable. She nodded in agreement. We told another doctor we were worried that Laurel would be a vegetable. He said, "Well, vegetable’s kind of a strong word..." We were beside ourselves. Bob threatened to tear the nursery down. We worried about going bankrupt if we had to institutionalize her. We worried that I’d have to quit my job to take care of her. We talked about whether we would try again for another child if she was a vegetable or if she died. I kept pumping even though it seemed pointless...and then on Thanksgiving night, she opened her eyes for the first time since the day she was born. And REALLY looked at us. We knew then that she would not be a vegetable, and were the most truly thankful we’ve ever been. She was increasingly wakeful and had no more low heart rate/apnic episodes, and by Saturday (the 25th), the decision was made to remove her respirator. She did just fine. We took pictures of her without her tube and I had the first real opportunity to hold her since she’d been born (we had one real tentative sort of "holding" while she was hooked up to the respirator, but it had involved a platform of about 15 blankets and hadn’t felt much like holding a baby at all).

On Sunday, the nurses prepared to move Laurel to the transitional area of the NICU...and she had another low heart rate/apnic episode. Then her temperature dropped, and she had to be moved to an isolette to keep warm. On Monday (the 27th), she was hooked up for an EEG and had another heart rate/apnic episode. And the EEG results, given to us late that night by a low-level resident, showed another seizure. We were sure she would have to have her medication upped and would be unwakeable again. I lost it that night. I literally howled in despair. I thought she would never be able to make it on her own. Bob is the one who carried me through that night. And the next day, we talked to a higher level doctor and discovered that the doctors had decided that the seizure was so insignificant (10-15 seconds with no outward signs) that her medication was not changed, except that it had been shifted from intravenous to "oral" (actually given by a tube through her nose) as planned. She was back to being impossible to awaken, though. And the apnic episodes meant that she had been taken off of my breastmilk (also administered by the tube through the nose) and put back on an IV. Meanwhile, Bob found a message board for parents of children with Hypoxic Ischemic Encephalopathy (her diagnosis, meaning abnormal brain activity due to a lack of oxygen due to a lack of blood) and we became more depressed, reading the stories of other parents whose stories had started out similarly to ours and whose children had multiple disabilities. Also meanwhile, she got hot and was taken out of the isolette. And then got cold and was put back in the isolette. Out of the isolette, into the isolette. Thursday the 30th she woke back up again. And on Saturday December 2nd, she came out of the isolette again, this time because she had had explosive diarrhea (my breastmilk wasn’t keeping up with demand, and guess who turned out to have inherited her mother’s milk allergy?) and it had to be sent out to be cleaned. And that, it turns out, was the last time she was in the isolette. As the week went on, she needed fewer and fewer blankets. And had no more episodes of low heart rate/apnea, and went back to being fed. BUT...she was not learning to eat. Swallow? Yes. Suck? Very occasionally. Both simultaneously? HA! An occupational therapist has been working with her every day, but she’s just not getting it. So the decision was made, because the tube through her nose would be hard for us to maintain and very hard for us to replace if it came out, to install a (removable) tube into her stomach. That was done on Thursday (the 7th). She started being fed again today (and these last few days, with her being wakeful but hungry, have been absolutely heartbreaking), and once she is up to "full feeds", she will be discharged (somewhere around the end of this week). The only other issue we are a little anxious about is her body temperature, which is a bit cold again, but if it holds through the morning she’ll move out of the NICU. Also, she has been found to have a low level of cortisol (a hormone secreted by the adrenal gland), and has started to receive hydrocortisone. It’s possible that this may actually be a genetic issue and not related to her injury, as her grandfather had adrenal insufficiency. We’re awaiting the results of further testing, but this isn’t an issue that will slow down her release.

We’re still not really sure what Laurel’s future will bring. The doctors remain baffled by her, because she did not sustain the major organ damage she should have if the hypoxia had occurred during labor or delivery. So, they conclude, it must have happened before, but then why didn’t the seizures start until several hours after her birth? Most of the doctors are still unwilling to offer a prognosis because of their confusion, but one doctor from a children’s rehabilitation center who evaluated her thought that she appeared more likely to have a physical disability than a cognitive disability. When she's awake, she's a very alert and attentive baby who enjoys making eye contact, looking at her immediate surroundings, and listening to music, but some observers, including the doc from the rehab center, think she may tremble more than your average baby (cerebral palsy is one possible outcome of the type of brain damage she has had). It's still too early to tell if there's a real problem. The doctor was also hopeful about her ultimate ability to learn to eat; we will continue to work with her and will have someone from the county visit regularly to help us with her therapy. So mostly now it is just waiting and seeing.

One positive thing we have gained from this whole experience is a much brighter view of the goodness of human nature than we used to have. We have found that we have more friends than we ever knew. We have received numerous beautiful cards from friends, relatives, fellow church members, co-workers, and people we met once at a party. We have eaten more bean soup and bread (from our vegetarian friends) and roasted birds (from our non-vegetarian friends) than we knew existed. Laurel has received many gifts, including a mama bear, a lion for courage, and an angel of hope to watch over her bedside. She has been prayed for/sent healing vibes/sent positive thoughts by Christians of many denominations, Unitarians (what we are), Jews, Buddhists, and pagans. We are astonished and grateful at the outpouring that she, and we, have received.