And Life Goes On

Elijah turned one month old yesterday. One big new update for him is that he is finally allowed to wear clothes (They are so cute on him! I intend to take pictures today.). Wearing clothes is a big deal. That means that they have graduated him to the next setting on the isolette (incubator). Originally, when he didn't have enough body fat, the isolette monitored his body temperature and adjusted its own temperature accordingly (this is called "skin mode" in nurse-speak.). He couldn't wear clothes on skin mode because that would give the isolette a false reading. Now, they set the isolette to one temperature ("air mode"), and he has to maintain his temperature on his own - hence the clothes. Then, they will lower the temperature in the incubator a little bit at a time until they have him on room temperature. Once he proves that he is comfortable at room temperature for a while, they will take the top off of the isolette, turning it into a bassinet.

Maintaining his body temperature is a huge step forward. It's one of the big bench-marks he has to meet before getting out of NICU. These are the goals he has to meet:

1. Breathe on his own - check
2. Maintain body temperature - check
3. Eat only breast milk without IV support - pending, probably in a few more days
4. Maintain a consistent weight-gain pattern - pending
5. Reconnect his intestines - pending 6 more weeks or whenever he weighs 6 pounds
6. Make sure his intestines work properly once reconnected - pending

As you can see, we have a long way to go, but every step forward is exciting.


On another note, I don't know who all reads this, but I want to express heartfelt gratitude for all of the outpouring of love from our friends and church family. Our church has been feeding us for weeks, and that has been such an incredible blessing. I have been overwhelmed with offers for rides to the hospital, food, things for Elijah, and many other little (and big) gifts. We have felt truly loved in the middle of all that we've been through, and I can't thank everyone enough. You don't know how the Lord has used you to sustain us.

As hurt and frightened as I have been in the last month, I pray that all of these events will bring glory and praise to the Lord my God. I pray that His faithfulness to my husband and me will comfort and confirm His love for others as well. We are weak, but He is strong, and He has delivered us from our fear and our despair. I hope only that whatever is left of me after this is over will remain faithful to Him for eternity. I can't say it any better than this:


But having the same spirit of faith, according to what is written, “I believed, therefore I spoke,” we also believe, therefore we also speak, knowing that He who raised the Lord Jesus will raise us also with Jesus and will present us with you. For all things are for your sakes, so that the grace which is spreading to more and more people may cause the giving of thanks to abound to the glory of God. Therefore we do not lose heart, but though our outer man is decaying, yet our inner man is being renewed day by day. For momentary, light affliction is producing for us an eternal weight of glory far beyond all comparison, while we look not at the things which are seen, but at the things which are not seen; for the things which are seen are temporal, but the things which are not seen are eternal. 

- 2 Corinthians 4:13-18
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As promised!

The baby

The husband

:-D

A Eugoogoolizer...One Who Speaks at Funerals

I do not know how to grieve my brother because I have never lost someone like this before. I still feel like I can text him or call him, and he'll just answer the phone. I wish I didn't always forget that he's gone. Remembering suddenly makes the wounds all fresh again.

I wish I could record all the jokes and conversations and memories we shared over the last 21 years. I have found that writing them just makes them wooden. The memories are alive and brilliant in my mind, but I can't express them without turning them hollow. I looked up the word "bereft" because the word seemed to have all the texture of what I'm feeling. The definition was "Suffering the death of a loved one," but I found the second definition to be more poignant. It also means "Deprived of, lacking, stripped of, robbed of." That one hit the nail on the head. When I remember that I've lost him, I feel like my waist and ribs are eaten away, like part of me has melted off and it will never come back. He was the only one to share those memories with me. He was the only one who understood. I have lost the only person who grew up with me.

If I could see Phil again, I would hold him and tell him how hurt I am that he left me behind. He and I always did everything together; we shared so many of the same experiences. Now, he's gone where I cannot go, beyond my reach. He was supposed to stay here with me; he was supposed to meet my baby and become famous and have many decades-worth of memories with me. We were supposed to complain about our parents and plan holidays and remember our childhood together. He was supposed to taste splendid success. I wonder sometimes which is worse: the pain remembering the things we did, or the pain mourning the things we didn't.

I wish our relationship had not been so complicated in the most recent years. However, we were getting better, so I can only dream that, had he lived, we were on track to repairing some of those cracks.

I'm going to set aside the maudlin for a moment and give you a eulogy in pictures. Enjoy.

We didn't want to leave Mimi's house, so we clung to her and cried.

We still had to leave. Reynolds, GA 1993

Phil was too little to go down the big slide by himself. New Jersey, 1992

Top: Us at the lookout at Raven Rock, NC in 1997

Bottom: Us at the same lookout in 2006

He loved to garden with our Grandbubber (RIP) - Reynolds, GA

Phil and Dad made a REALLY heavy box-car when we lived in NC. 

If we ever started a family band, this would have been the album cover. 1998

Phil liked to catch bugs, lizards, and, in this case, crayfish. Helen, GA 1998

Phil's make-up artist class - I was his guinea pig - Florida, 2007

An example of the many, many hours we spent on the back deck in Tallahassee, 2008

This is exactly what it looks like. Tallahassee, 2008

Christmas Eve, 2007. We spent Christmas Eve on the beach in Sarasota,

and we made sand-people instead of snow-people.

This is one of my favorite memories with Phil. 

Yes, the sand-man is smoking a cigarette.

St. Pete with our friends

PHILIP SCHWALM 1990-2012

Best Laid Plans of Mice and Mandys... Pt 2, or Baby's First Easter

I need to write this down before I forget it all. Now that Elijah is 3 weeks old and I've had a million and one things happen since his birth, I'm already forgetting little details. (Just remembered a detail; after labor, my face, neck, and chest were really tender and my throat was hoarse. Turns out that labor is so intense that all the muscles from the chest up get used way more than I realized, and my throat was sore because they had me on an oxygen mask for the last hour of labor to keep the baby from losing oxygen).

My last narrative left off when the nurses finally let me off of bed rest for the 24-hour magnesium drip surveillance. My first stop was going to be the NICU to finally see my baby after giving birth to him the day before. I got into the wheelchair (and realized why they had me on bed rest... I think a wet noodle has more stability than my legs did), and a nice orderly wheeled me through the labyrinth of the hospital to get to the Neonatal ICU.

I got to the NICU room where my baby lay. The little plastic incubator (called an isolette) was in a private room. There were monitors everywhere, and the room was dark. The isolette had a blanket on the top of it, keeping the incubator even darker to mimic the womb. All in all, it looked like something in a sci-fi horror flick.

I sat in a wheelchair, my heart pounding. I didn't know what to expect even though I had seen pictures of him. I looked under the blanket.

Part of me was terrified. Another part of me was guilty. Still another part of me was dumbfounded. The larger part of me, however, was overwhelmed with love for him. I wanted to put him back, where he was safe and warm and nothing bad or uncomfortable would happen to him for two more months. I wanted to eat for him and breathe for him instead of a bunch of tubes. The nurse had the discretion to leave the room as tears streamed down my face.

The orderly took me to the room that I would recover in for the next 24 hours. We got settled, took a nap, then went right back to NICU. I spent all that day going back and forth from the NICU to my room. I couldn't walk at first, then I was able to shuffle on my own. I couldn't believe how the magnesium had sapped all of my strength. I could barely walk.

We were out of the woods. Everything was smooth sailing for almost two weeks. Grandparents were fawning over him and posting pictures left and right on the internet. We were all analyzing every feature, trying to figure out whose nose, ears, etc. he had inherited. We decided he had Adam's nose and my eyes - the best of both of us. He started on just a little bit of milk and then graduated to a bottle and breastfeeding. We were all exuberant with expectation and looked forward to him coming home. It seemed that he would be out sooner than his due date if he kept the course he was going.

Easter Sunday, my grandmother drove down to come to church with us and meet Elijah. We went to the service together, and then Adam and I drove home to pick up some things before we went to mom's for Easter dinner and then the hospital to see our baby. However, when we got home, there was a message on Adam's phone from the hospital. The hospital policy is "No news is good news," so the fact that they were calling us did not bode well with me. We called Elijah's nurse to get the update. 

At his 8 am feeding, he had been doing great. His color looked good, he ate his food like a champ, and he had all of his usual energy. Three hours later, at his 11 am feeding, he wasn't doing so well. He had turned gray and mottled, his stomach was distended and hard, and he was lethargic. He had turned into a different baby in a few short hours. The nurse wanted permission over the phone to do a spinal tap to make sure his spinal fluid wasn't infected (to screen for meningitis - thank God it wasn't that), and then they would perform blood work and x-rays to try to diagnose him.

I wept and wept and wept (I've cried a lot in the last three weeks). All of our great hopes and comfort about his progress evaporated. I can't think of a time when my heart was more broken. I called mom and told her that this was a bad day for my grandmother to meet him. We had to eat, so we had a miserable Easter dinner with Mom and Mimi before driving to the hospital. I could barely swallow a bite, but I didn't know when I would eat again, so it seemed a necessary chore.

As soon as we arrived, the nurse in charge of his care caught us before we went into his room and told us the update. His spinal tap was clear, but his x-ray confirmed that he had what was called necrotizing enterocolitis, a malady that I have already explained in previous posts. I cried (again), and the sweet nurse gave me a hug. Adam and I braced ourselves and went into his room.

He looked terrible. He just lay there, not moving or responding to us. His skin was gray-toned and uneven. Every once in a while I could see his eyebrows go up a little, reminiscent of his wonderful, dramatic facial expressions we had gotten used to over the days we had known him, but without all the spark. He suddenly seemed so much more frail than he had looked before.

The next few days were excruciating. We had to wait and watch to see what the disease would do. The worst experiences we had were on the third day that he had Nec. He had not needed any respiratory support up to that point, but on the third day he was getting really tired. They tried to put a PICC line on him, but every attempt they made didn't take, even after three tries. Each attempt wore him out even more. That evening, he started having really bad respiratory "events," as the nurses called them. They were periods where his oxygen levels would drop (called "desaturating," or "desatting" in the nurses' abbreviation) and his heart rate would decrease dramatically. Normal oxygen levels are supposed to be at 99-100%. Elijah's would drop to below 10%. I can't remember where his pulse dropped to. The nurses would rush in and try to stimulate him back into breathing, but he was too worn out. They tried to give him oxygen, but after a while even that wasn't working. Finally, they had to intubate him and have him on a ventilator.

I was sent out of the room every time they had to do one of these procedures, so I spent a total of four hours in the waiting room. Maybe it was watching him stop breathing, but I started to panic. I kept seeing them trying to revive him from his events, and the image replayed over and over in my head. I began to despair. I stopped having the mental fantasy of bringing him home. Instead, my image of bringing him home was getting replaced by awful pictures of having to tell Adam that he didn't make it, that he stopped breathing, that the infection ate him up, that we lost him. I couldn't keep it together. I wept shamelessly in the waiting room. The nurses started to gather around me, trying to tell me that he was doing ok, that intubating him was going to keep him from working too hard, that the PICC line would keep them from having to stick him too much, that these were good things which were going to help him. They were very kind, but I was inconsolable. 

The next few days showed slight improvement. On Friday, however, as I have already mentioned, we got the call that they were finally going to have to operate. The risks of this operation were way lower than if he had ruptured, and they felt very confident that (1) this was necessary, and (2) he should improve greatly once they operated and removed the sick tissue in his gut. I sat in the waiting room with my friends, waiting for news of the surgery and marveling at Phil's sudden death.

Since his surgery, Elijah has been improving wonderfully. He's breathing completely on his own again, and he's starting to act like himself again. He's getting that spunkiness back that he had before he got sick. We are blessed. I got to hold him last night for the first time in over a week. It was like a salve on my spirit. His pain has been well-managed, and the nurses have been able to back off his morphine doses.

One unfortunate result from all of this is that his homecoming has been pushed back considerably. We are unlikely to bring him home before June. He has to start over with his feedings, and it took us two weeks to get where we were the first time. They have been honest that he still might have complications once we add food again, and he can even contract Nec again. I am no longer going to get ahead of myself with his condition and progress. We have to take everything with Elijah one day at a time. If I live in any moment but the present, I could be setting myself up for another awful disappointment. So, we take it a day at a time. As Jesus said, "Sufficient for the day is its own trouble." I don't need to waste a single calorie worrying about tomorrow.

Things I Need

Friday morning a few hours after I wrote my last post, I woke up to hear my husband's phone vibrating. He was asleep, so I jumped out of bed and ran to it, thinking it might be the hospital calling about Elijah. I was surprised to see that it was my mother's house phone.

"Hello?"
"Amanda?"
"Yeah?"
"Is Adam there?"
"Um, yeah, let me wake him up."

Adam took the phone, and I crawled back into bed. I could still hear mom's voice through Adam's earpiece.

Are you in the bedroom?
"Yeah."
Can you walk into the living room for a minute?

...which is when I figured out that something was horribly wrong and mom didn't want me to hear what she had to say. I prayed that whatever this was, God would sustain me and give me the strength to face it.


Adam came back into the bedroom and told me that my brother had died the day before.

Phil went swimming in a river in a state park in St. Louis. He had a snorkel, a mask, and flippers. In my mind's eye, I saw him buying them in Walmart for the express purpose of going swimming that day. I saw him in a snorkel and mask, dancing on the side of the river in his flippers. They found a flipper before they found him. He had drowned in 8 feet of water, 15 feet from the shore.

I had almost called him the night before. I wanted to tell him about Elijah, but I decided not to. I remember looking at the clock on my phone a little after 7 and deciding not to bother him. He didn't know Elijah was sick, and I didn't feel like telling him about it. I'm glad I didn't call. They found his body at 7:30. Even if I had called, he was already gone.

My last conversation was a good one. I talked to him on Saturday, the night before Elijah got sick. Phil had panicked when I went into labor because he thought I was going to die. He told me he had cried and wailed and that he was so sorry for all the bad things he ever said to me. We laughed at his dramatic response, and I told him how beautiful Elijah was. We made plans for when he was coming to Florida in the summer.

I cried for 30 minutes on Friday morning. Then the phone calls and texts started pouring in. Apparently, the news had hit Facebook before it even got to us. My friend came over with chocolate and flowers for a few minutes before the phone rang again.

This time it was the hospital. Elijah had not improved the way they had wanted him to, and now the surgeons needed us to be at the hospital as soon as possible to explain the surgery to us and get us to sign consent. So, with the news of my brother only an hour old, Adam and I drove to the hospital to submit to major surgery on our baby.

I spent the entire day in the hospital. Elijah did great through the surgery. They had to remove part of his small intestine where the large and small intestines meet. They brought the bowel to the surface and attached an ostomy. I'm still not sure how it all works, but suffice it to say that his bowels are unattached, his matter will evacuate from the ostomy, and they will reattach him in a couple of months when he's bigger. The surgeons felt really good about the operation, and provided he finishes the antibiotics and bowel rest without event, this should be the end of Nec. If it happens again, which is rare, it will be a completely unrelated case of the disease.

People keep asking me if I need anything. I have decided that these are the things I need:

I need to hold my baby again after not being able to hold him for over a week
I need see him growing and getting stronger
I need to see him come home
I need to hear Phil's voice one more time
I need to wake him up by jumping on him one more time
I need to laugh with him about memories we have with our dogs, cats, and hermit crabs
I need to tell him one more time that I love him

If anyone can give me those things, please contact me.

If not, prayers are appreciated.

Holding My Breath

Elijah's x-rays are showing improvement. They showed me his x-ray from the day he got sick and the one from yesterday; there was marked improvement. He doesn't have any of the air they were worried about rupturing him anymore. Now they are watching to see if his bowels start moving like they're supposed to. If they move around well, then it is likely that he doesn't have any dead or damaged tissue and they won't have to open him up. If something isn't moving like they want, they'll keep and eye on it and make a decision on whether they need to cut him and look for the sick/dead tissue. We are praying for good peristalsis.

We aren't quite at the place where I feel free to breathe a sigh of relief... I don't think I'll be there until we get him out of the hospital. This thing struck so suddenly and HARD; I don't think I'll ever be comfortable or complacent with his progress again.

He's been very restful the last couple of days, so I think he's been getting good sleep. He tries to open his eyes when we talk to him, but he's too tired or drugged or both. I can't wait until we can hold him again.

New and Exciting Maladies

I'm interrupting my labor/delivery/NICU narrative to give some fairly dreadful news. Elijah has necrotizing enterocolitis. The nurses are calling it nec for short, so that's what I will call it. This evil-sounding condition is common in preemies, but being common does not make it less dangerous. Right now, the doctors are treating it with antibiotics and keeping a close watch on his bowels with x-rays. Worst case scenario, his bowels could perforate or sections of them could die - hence the x-rays. In the event that this happens, immediate surgery will be necessary, and this particular operation has about a 25% death rate. Basically, they would remove the damaged/dead tissue, and later on, when he is bigger and stronger, they would reattach the intestines. That's if only a section of the intestines were damaged. There are rarer cases where the entire intestine is damaged, but I don't want to think about that. Best case scenario, the antibiotics kill the infection, and there is no permanent damage.

I overheard the doctor explain to the nurses that the first 48-72 hours is the most dangerous window for perforation, but he wouldn't say that to me. To me, he said that it could happen at any time the infection is still alive in Elijah's gut. That didn't stop me from marking time, though. We are almost out of the 72 hours today. He came down with it very suddenly around 11 AM on Easter Sunday, so 11 AM today will be 72 hours. Unfortunately, this could happen again, even if the antibiotics kill it and we can start feeding him again. As disheartening as that was, I'm glad they told me, so I won't be surprised if we face this again a month from now.

Even if everything is fine and infection is killed, this is a considerable set-back on when he can come home. He will be on bowel rest (no food) for at least 2 weeks, which means we have to start over with all the progress we made since he was born 15 days ago. I can't get to far ahead of myself, though; at this point we really are just fighting for his life - we'll worry about homecoming once he gets better.

He has been fighting pretty hard. They had to intubate him yesterday (I should get an honorary nursing degree after all of this is over - I think I'll know everything). That means he has a tube going into his trachea that breathes for him. They are also going to implant a picc line so that he has a stable, more permanent IV instead of getting poked every time one of his IVs goes bad. They couldn't get a vein on him yesterday - they tried 3 times and none of them were in the right spot (the line kept coiling up before reaching his heart). They wanted to put it on his head, but I hope they put it somewhere else. He likes it when we stroke his head.

He's on morphine, so he's pretty out of it, but at least he isn't hurting. We are taking this thing a day at a time; any more than that would make me lose my mind.