I am sitting in our hospital room with G in my lap asleep, nervously waiting for the neonatologist to come back to tell us whether G can be released today or whether they are going to send her to the special care nursery for a day or two to stay under the bili lights. Apparently her jaundice level is creeping up. My OB has already said that I can go home today, but I’m not leaving without my baby. So if she stays, I will be staying too.

Having her in an acute care setting under the lights would be VERY difficult for me to deal with, so I plan to basically beg the neonatologist to take her home and have lighst set up at our house and take her to the pediatrician every day to have her levels checked. I don’t know if he will agree to that, though, Of course, jaundice can be serious – especially in a premature baby – so I definitely want to take it seriously, but I am soooo hoping that we can find a way to manage her care at home. I really want to take her home…

UPDATE:

Well, as you can see from the photo, G is now under the bili lights. After talking with her pediatrician and getting a second opinion from one of my best friends who is a doctor, we decided that we needed to be aggressive with the jaundice. They did give us the option of taking her home and then getting her tested again tomorrow, but if it hadn’t improved by then, she would have had to be admitted to Children’s Hospital. All of that sounded a lot more unpleasant and disruptive than staying here another night, especially since the incredibly kind nurse practiotioner bent some rules and got the bili lights set up in our room. That’s right, no more being taken to the nursery; she gets to stay here with us in her special lighted isolette until tomorrow morning, when she will be tested again. In the meantime, I can feed her on demand and be right here with her all the time.

As for breastfeeding, I think we’ve turned the corner (knock wood). She still wasn’t latching or even showing much interest in eating until after midnight last night, when my instincts told me that she simply wasn’t getting enough calories or hydration from the syringe feeding we had been doing since she was born. I decided to give her a bottle of pumped milk mixed with the high calorie preemie formula, feeding it to her with a special preemie nipple. Well, she gulped that bottle right down like she was starving – which she apparently was. And within an hour of taking the bottle, she was suddenly much more awake and alert and she began latching on and breastfeeding well. She nursed wonderfully all night. Then this morning she seemed to be lagging again, so I gave her a few ounces by bottle again and now this afternoon she is again breastfeeding like a pro. Her weight was down to 5lbs 2 ozs last night, but I’ll be t it will stabilize and start climbing within the next 12-24 hours now that she is nursing so well.

Jon and I are veeeery tired. I am pretty sore from the surgery and neither of us has slept much (or very well) while we’ve been in the hospital. I’m really eager to get home and get cozy in our bed with Baby G, C, and any of the other children who want to join us.

I’ve had two really special Henry moments while we’ve been here that I’ll write about later – in a day or two – when I am not so tired and can focus better. But suffice it to say that he continues to be present with me in this very special experience of giving birth to G.

Here’s a shot of H after he made it out of the first critical phase after his injury and had been moved to the hospital rehabilitation unit, but before he began experiencing worsening symptoms again. He wanted so much to be able to play his guitar again.

H is struggling tonight.

An update:

H remains in critical condition and in the intensive care unit. The brain swelling hasn’t stopped. He is having cycles every 1-3 hours where his intracranial pressure – which they measure with the monitor that was surgically inserted into his skull – spikes up above 50. When this happens, his heart rate drops – sometimes as low as into the 30s, but generally into the 40s or low 50s. He is deeply sedated and on a respirator. They are trying a variety of medications and other interventions to try to stabilize the wild fluctuations in his intracranial pressure, plus his head is elevated pretty steeply to try to help protect his brain. They finally got a nasal feeding tube in yesterday afternoon, so he’s getting some nutrition now. This morning he is having seizure like activity where he is trembling. This is new. They have now upped the paralytic agent he’s been getting to see if they can stop the shaking. He looks worse to me this morning. His face is more swollen and his tongue is thrust forward in a way that it hasn’t been.

This is hard. My poor, sweet baby boy. It’s all so surreal. Even 36 days into this, I can’t quite believe it’s happening. You read and hear about this happening to other people, but truly, you just never imagine that it could happen to your child, your family

I want to say again how much H’s father, stepparents, younger siblings, and entire family appreciate every single message, email, blog comment, card and letter of support that nice folks have offered and continued to offer. I am so sorry that I am behind on responding directly to people, but please know how much it means to me to hear from folks. THANK YOU.

Oh, and one last thing – I simply cannot rave enough about the amazing care H is receiving at UT Medical Center. He has one-on-one nursing care here in the ICU and the level of attention and skill of his nurses are fantastic. I am also very pleased by the energy, attention and expertise that his neurologist and the neurosurgeons are putting into H’s care. Dr. R in particular (email me if you want to know his name so I can refer you if you are looking for a neurologist) is so thorough and attentive, and he’s really working hard to research H’s somewhat rare condition – the Delayed Post-Hypoxic Leukoencephelopathy. He’s also just plain nice; yesterday he saw how tiring it is for someone 8 months pregnant (that would be me) to be spending hours every day perched on a tiny plastic chair in H’s ICU unit, so he ordered up a comfortable recliner to be placed in here so that I can sit with my feet up when I am with H. That was just incredibly thoughtful of him.

H made it through the night. He remains in critical condition and on a respirator.

This all started yesterday afternoon.

He had been deteriorating over the past week and more rapidly in the past 48 hours. He was having frequent “autonomic storms” that were difficult to watch because we could tell he was in such terrible distress. He continued to vomit much of what we tried to feed him. He was sleeping far more than he had previously and speech was becoming more limited. For the first time, he started using nonsense words or in one case, a very distinct made-up word that he used as a toddler and hadn’t used since.

The doctors tinkered with his medications, but decided yesterday to do another CT Scan to see if there was a change in the swelling in his brain. They were pretty shocked to see that the swelling had increased to a huge degree since his last CT Scan last week. His brain is under a lot of pressure and the decision was made to move him immediately from the neurology floor to the intensive care unit. By this time, he was only semi-conscious.

We met with several doctors who explained that his heart rate was dropping and his blood pressure was up. We were told that we will now need to take things hour to hour instead of day by day. The neurologist told us he’s never seen someone deteriorate this fast this long after the original brain injury. It’s the worst case of delayed post-hypoxic leukoencephalopathy (DPHL) he has ever seen.

DPHL is a complication of certain types of drug overdoses. It’s related to both the toxicity of the types of drugs the person has taken, as well as the period of oxygen loss to the brain when the OD happens. It occurs weeks or more after the original overdose, when the myelin sheaths in the brain suddenly start breaking down and deteriorating. In some people, it happens after they have almost recovered from the overdose and have resumed normal activities. With H, it started at a point when his brain injury baseline was still very severe – he was barely talking and hadn’t yet walked.But he WAS making tiny improvements overall until the DPHL started.

There isn’t a lot of medical literature on DPHL yet, but what doctors know is that it is most common with overdoses involving inhaled heroin, which wasn’t what H used. It can also occur when a toxic brew of certain drugs come together in the body, and that’s what happened to my son. When H overdosed, his bloodwork showed opiates, cocaine, marijuana and the class of tranquilizers that includes xanax and valium. Friends of his have told me that he mentioned taking methadone in the days leading up to the overdose. Whatever mix of nasty poisons he ingested, it is still wreaking havoc on his brain 36 days later. And of course, H was also hit in the head and chest very violently, which considerably compounded the original brain injury.

After he was moved to the ICU, he was intubated and placed on the respirator to provide hyperventilation. An intracranial bolt was placed in his skull to monitor brain swellling on a continuous basis. A central IV line was placed in his chest.

Since they began monitoring his intracranial pressure last night (ICP), it has cycled every hour or two from near normal levels up to levels considered fatal – or beyond fatal. This sort of consistent fluctation and cycling of ICP is apparently somewhat unusual. I suspect that it shoots up every time he experiences one of the autonomic storms.

Jon and all three of the other kids were supposed to leave for our long-planned beach vacation this morning. We had decided that he and the kids should go even though I would be staying here to remain on the job and be with H. But everything is on hold now that H’s condition is so critical. We brought J and E to the hospital last night to spend a few minutes with H in the ICU. It was really difficult for both of them. They have been through so, so much with all of this and they love and miss their big brother so much. C is staying with Jon’s parents for the time being. I miss her like crazy. Other relatives may go ahead and take J and E to the beach today as planned with the understanding that they may need to be brought back to Knoxville quickly.

Right now I am sitting in the family critical care waiting room waiting for shift change to end so I can go back to the ICU and be with H. Thank you for all your kind words and messages. It means SO MUCH to our whole family that so many people are thinking of our swweet boy and praying for his recovery. The next few days will be critical for H. Every hour matters.

Give your children an extra hug today. Tell them how much you love them and how special and perfectly amazing they are. Never miss a chance to tell them that. I’d give anything if H could hear me telling him that now.

-Katie

Please keep H in your thoughts and prayers. He has taken a turn for the worse and is in extremely critical condition and on a respirator due to a sudden increase in swelling in his brain.

We’re back in the ICU family waiting area, just as we were a month ago when he was first admitted. I can’t believe it.

I got the results of H’s neuropsych eval back yesterday. The report notes that when H was tested during his inpatient addiction treatment in 2009 – when he was 17 – he tested at the 99th percentile for verbal ability and comprehension for kids his age.

Now my child can’t speak or read.

Stupid drugs. Stupid drug dealers.

Talk to your kids about drugs and alcohol. Talk some more. Do it today. Dig deeper. Look more closely. Trust your gut no matter what your teenager is telling you. Err on the side of doing too much rather than not doing enough. Please. I don’t want H’s injuries to be for nothing. I want other people to learn from our family’s experience.

C asks all the time when H is coming home and if he’s “all better yet.” And last night, when some family members asked H what he was thinking about, he answered “C.” He was thinking about his baby sister.

H was first admitted to the hospital one month ago today. And now we are heading back to the same hospital to begin again.

Today H will be transferred back to the acute-care, higher level hospital where he spent the first two weeks after his injury. For the past two weeks he’s been at another hospital’s in-house neuro rehab program, but to be honest, he hasn’t made much progress and in fact, his condition has deteriorated over time. Then, in the past 48 hours, he had a significant seizure episode and has become rapidly less aware or able to communicate or follow simple instructions. A new CT Scan yesterday (which I had to insist on being done) revealed increased edema in the frontal lobes. He is also in significant pain from a bad headache, a new development.

Yesterday afternoon, I headed over to the hospital after work. While H was asleep and I was perched next to his bed, I wrote a blog post about the negative changes we were seeing in his overall condition. Then I spent some time on the phone with his doctor, talking about the changes. His doctor admitted that he was very concerned, but said he wasn’t quite sure what needed to happen next. He said he would consult with a neurologist in the next day or two to consider our options. I hung up feeling worried. My gut told me that H needed to receive more focused care immediately. I just knew that something was changing with him, that something was very wrong.

After I wrote the blog post in the late afternoon, I posted a link to it on my Facebook page. A neighbor of mine, who is my friend on Facebook, saw the post and became concerned when she read about how H’s condition was worsening. She asked her husband, Dr. R. a well-respected neurologist in town who hasn’t been treating H, to take a look at what I had written, which he did. Dr. R. was concerned enough by what he read in my blog post that he called another mutual friend/neighbor of ours (he didn’t have my number) to ask her to get in touch with me. So she called me and explained that Dr. R had read my blog post and was worried about H. She gave me his number and asked me to call him.

To make a long story short, I called Dr. R. He quickly came from his house right over to the hospital, which happens to be located in our mutual neighborhood. He examined H and gave me his opinion that H currently needs a higher level of care than the rehab center provides; his condition has deteriorated since he was moved from hospital #1. Dr. R. was concerned about the seizure, H’s continuing “mini seizures,” the edema on the brain and other issues we’re seeing. After spending some time examining H, Dr. R. called H’s doctor, whom he knows, and within an hour it was decided that H would be transferred today back to the acute neurology unit at the higher-level hospital where Dr. R is on staff. Dr. R is admitting him, and his group will be treating him. H is having an MRI today to find out more about the source of the edema and the seizure activity, and H’s doctor agreed with Dr. R’s recommendation that he be started on depakote, an anti-seizure med. He had his first dose last night.

After Dr. R. left, H’s nurse came in to his room, shut the door and told me quietly that she was SO GLAD that Dr. R. had gotten involved because she had been very worried about H. She said several of the nurses had been talking about how H needed to sent back to the acute-care hospital where neurologists would be overseeing his care.

“You did the right thing getting Dr. R over here. He’s the best.,” she said to me. “You’re a good mom.”

I really appreciated her saying that because as a mom, I feel so incredibly helpless in this situation most of the time.

Today I am feeling pretty indebted to Dr. R and his wife. And also pretty grateful for community – both virtual and real. You hear a lot of horror stories about social media, but not enough about stories like this one.

H keeps getting quieter and quieter. For the past two days he’s drifted in and out of what I would describe as a semi-conscious state. This is markedly different from the awake but sort of catatonic affect he had previously. Now he rarely opens his eyes except to take a few bites of food when prompted. And they don’t open all the way; they flutter and then settle closed again, like he’s just too tired to hold them open. He can’t sit up in a chair like he could before.

His legs and arms – now so thin that they feel like ropes – repeatedly tense and flex involuntarily as he lays in his hospital bed. His body’s movements seem totally disconnected from whatever is going on inside of his head. Sometimes a tremor passes through his whole body and he looks terrified for just a moment. He grimaces – still never opening his eyes – and I stroke his forehead and sing quietly to him to try to get him to relax.

This change for the worse started over the weekend after he had some sort of seizure episode – we’re not completely sure what it was – after which he lost consciousness for several minutes. During the time he was out, he instantly became drenched in sweat, something that hasn’t happened before. At first the doctor didn’t seem that concerned about the episode, but after seeing how different he was in the hours after the seizure, I insisted that they do a CT Scan, which they did yesterday. It apparently showed some edema around the brain – that’s new – so now they will do an MRI to get an even better look inside his head. They tried to do the MRI today, but he can’t stop tensing and twitching for the test. So he will have to have general anesthesia with intubation, and that requires him to go 12 hours without food or drink. So tomorrow. Tomorrow.

He’s so quiet. So thin and quiet.

I’ve realized that if I look out the window of his room, I can see across the hospital’s courtyard to the maternity floor where he was born. That was such a happy day.