Friday, January 30, 2009
However, today, while we were playing with her dollhouse, she lay down next to me and said, "Mama, wrap me up." As I put my arms around her, she said, "Mama, if you have to go back to Milwaukee and Grandma A____ isn't here, and Grandma Lalee isn't here, and papa isn't here, what will happen?" She sounded so lonely and worried.
"I will take you with me," I assured her. I held her for a long time.
Later, as she ate her afternoon snack, I told her I was going to check the dryer. "NO," she exclaimed and began getting out of her seat. "Do you want me to wait for you?" I asked, thinking she wanted to play in our basement. When she answered in the affirmative, I said I'd just go put away some clean clothes. Again, she got upset and started getting out of her seat. "Are you done with your snack?" I asked. "No," she said. "Do you just want me to sit here with you?" "Yes."
Again, tonight, she didn't want me to leave her room. She needed food, she needed a trip to the potty, she needed another story, she needed me to stay and snuggle longer. She finally settled down after I assured her that I would be here all day tomorrow. She snuggled Teddy Graham and said she'd take care of him tonight. She's taken to calling Teddy Graham, Oliver.
I love her. I love him. If I stay with him, she hurts. If I stay with her, he hurts. No matter what I do, I hurt.
However, that also means the doctors are unsure why he's having labored breathing. They did an echo this morning too. They said his heart's "squeeze" looked good. They said the function is good overall. They noted that his pulmonary arteries are small (which we knew). That means he'll likely have to have a balloon procedure in a year or two. Also, they said he does still have a little hole in his heart where they had put a patch. They said it's unlikely to be a problem though. So, they didn't see anything that caused them any particular concern.
What's next for him? It's uncertain...
Thursday, January 29, 2009
I think about that a lot.
A few days ago, walking down the hallway, I saw one of the research nurses. As I passed her, I remembered back to just before Oliver's surgery. One of the surgical team came in to ask us to participate in two research studies. One of the studies involved using a blood-pressure-lowering medication. My husband didn't want to participate. I pushed him until he agreed. Oliver had to go back on ECMO because his blood pressure was too low. As I walked down the hallway today, I started to wonder....what if I hadn't pushed? What if Oliver hadn't had that medication?
"There is no right way to do this."
A friend recently emailed me, "I know from my own experience that I was too afraid of what might happen to [my son] to fully enjoy spending time with him..., I was always thinking too far down the road and the what ifs were paralyzing."
The what-ifs of the past paralyze me. I don't know the name of the song, or even who sings it, but there is a song with the line, "Breathe, just breathe." One day, when I felt paralyzed by frustration and grief and guilt, the old adage, "one foot in front of the other," came to mind. At that moment, walking seemed out of reach. At that moment, it occurred to me that, sometimes, the only thing I can do is breathe--one breath. After that, I can think about the next breath.
[I've disabled comments on this post. Consider it informational instead of interactive.]
Yesterday, Oliver was having some withdrawal symptoms: sneezing, yawning, fussiness. He was also breathing hard and fast. Ocassionally, his head would start bobbing in time with his breaths. However, he seemed to calm down quickly if I just held him and walked with him. I asked the nurses about his behavior, but didn't think too much of it.
This moring, Oliver wasn't sneezing and yawning so much. He wasn't even as fussy. However, his breathing was even harder. His little head bobbed with every breath. His stomach muscles pulled back up under his ribs to help inflate his lungs. His breathing looked as labored as it was the morning before his surgery.
And, he was again struggling with transitions. He cried when I picked him up, then settled down. He cried when I shifted him from one arm to another and then settled down. He hasn't been so touchy for a few days at least. He also has a bit of upper respiratory congestion.
I didn't mention anything this morning. However, the speech/feeding lady noticed his breathing as soon as she came in. She went to tell the doctors even before she started feeding him. When they came by on rounds, Oilver's NP also mentioned the heavy breathing. I threw in my two cents. This was ten minutes ago. Already, Oliver has his renal sat. patch back on his back (to measure his oxygen levels), has had a chest X-ray (to see if his lungs look wetter) and has been swabbed to test for RSV (even though he had the vaccine on Monday). The doctor also ordered an increase in Oliver's diuretic dosage. Their guess: either Oliver's lungs are wetter (hence the diuretic) or he's caught an upper respiratory infection. Until they can rule out the infection, Oliver's in isolation. Which just means everyone who goes to see him has to wear gloves, gown and mask. He may also be moved to a private room (that would be his fifth room).
I hope he just needs more diuretic or that he's caught something. If today's tests come back negative, Dr. Rao mentioned measuring Oliver's levels of BNP, a marker of congestive heart failure. His levels are already above normal as Oliver was in heart failure before his surgery. However, they're only mildly eleveated as of two days ago...
Not that the blood test in and of itself is horrible. I just don't want to think about what that would mean.
Wednesday, January 28, 2009
Aunt Mary came this afternoon. This photo was taken pre-erp. Thank goodness smells don't travel with photos. His formula stinks!!!!
Oliver's nurse got him a musical mobile, this morning. I think he likes it. Hopefully, it will distract him from the lack of drugs. He's totally off the clonadine and will receive his last dose of methadone later today (if I understand correctly). He's been a bit fussier the past two days and has been sneezing and yawning up a storm. The speech/feeding specialist says he'll probably do better with his feedings once he's settled into a non-drugged state. He already does a good job of coordinating eating with feeding. He just gets too tired out by the process.
Tuesday, January 27, 2009
I had planned to share the "reality" of our adventure on this blog. So, to clarify: "Right now, I am tired. Very. I think that comes with new babies, in general. I'm also lonely. I miss Kevin terribly. I think in some ways things will get much easier once we bring Oliver home. Then we'll have each other. We'll be a family, again."
Monday, January 26, 2009
Apparently, Oliver took 36 cc's by mouth at his 7 am feed (for the metrically challenged, thats ~one ounce). Now, he's sitting with the speech therapist getting his 10 am feed. She says he likes the slow flow nipple best...or at least, he's able to suck and swallow a few times before stopping to breathe instead of only one or two. She also suggested giving him breaks duirng the feed to stretch out his endurance...so he doesn't sprint and crash. He's so content with his bottle.
Saturday, January 24, 2009
Friday, January 23, 2009
...people does it take to feed one baby?
The speech therapist (who helps babies re-learn how to eat) said it should take three to six weeks for Oliver to re-master the art of bottle feeding. So far, he's taking 5-10 cc's of (nasty-smelling) formula at each feeding we let him try. It seems like not so much, but, he's no longer stressed out by the bottle. He doesn't scream when it goes in his mouth. He just plays with it. Me make a baby with eating problems????? Dejavu! At least this time, I know its not my fault.
Unfortunately, we'll be in the hospital until Oliver can eat. However, since moving to the intermediate care unit Oliver has gotten a new roommate, a little girl who had heart surgery right around the same time he did. Her parents are also at Ronnies. I'm happy about the change.
Oliver has been acting more and more like a "real boy," a very mellow real boy. He likes to look around and kick and make funny faces. This morning, I even saw a full-blown smile.
Unfortunately, the process of learning how to eat is projected to take a few weeks, according to one cardiology fellow. From what she said, we'll stay here during that time. On a more positive note, Oliver no longer has any oxygen flowing through his cannula. He just has higher-pressure room air...which is getting turned down every day. I shouldn't be too upset about the feeding as he still has a week before he's weaned from his narcotics, anyway.
Thursday, January 22, 2009
Wednesday, January 21, 2009
Nonetheless, I'm irritated that he's having trouble eating and I'm frustrated that he's getting less attention from the medical staff. I realize that his needs--food and drugs for withdrawal--are less critical than those of other children on the floor. However, I'm frustrated that he got his food over an hour late two times in a row this evening, and his drugs three hours late. I'm frustrated because he needs these things and I can't give them to him. I can't even feed him because he still can't manage more than 5-10 cc's (1/3 ounce) from a bottle.
Suddenly, I realized something was missing!
I looked at the floor in front of his bed:
Indeed, the collection boxes are nowhere to be seen. His last two chest lines were removed about 45 minutes before I arrived. Later in the day, the nurse removed his femoral line. This evening, he got approved to move to the step-down ICU on the fourth floor. As there were no beds available, he made a temporary move to room 14 and will most likely move upstairs tomorrow.
Tuesday, January 20, 2009
I suppose she hasn't seen me driving since that sunny day back in November when we drove to the hosptial. But still, I was surprised. "Did you think I would never drive again?" I asked.
"Yes," she said. But she said it with such affection, that I know she would have loved me even if I had never taken her to gymnastics again.
"Are there any other things you thought would be different after Oliver was born?" I asked.
"Yes," she said. "I thought your tummy would be open."
I'm sure glad my tummy is not open.
...and cheeks! Oliver lost his forehead patch and one of the tubes that drains fluid from his chest (his mediastinal (sp?) tube) early this morning. He got 11 cc's (1/3 of an ounce) of his special low-fat formula from a bottle around 3 pm. A few minutes ago, we weighed him: he measures a whopping 3.82 kilos (in case you're not my husband, that's about 8 # 6 oz).
Monday, January 19, 2009
I took Evelyn back to Madison yesterday. We picked Grandma up at the airport. I took my camera with me. I left my laptop with papa. Hence, a 24 hour delay in posting this video clip.
Evelyn was so thrilled to hold him. She didn't want to let him go. She didn't want me to help her. She is sitting in her own chair. I'm just sitting really close behind her.
Sunday, January 18, 2009
I should note that in the last post, J talked about Oliver screaming. He couldn't really scream with the breathing tube down his throat, we could just tell when he was yalping. But, now that the tubes are gone we can again hear him! So, far it's just been a quiet eeeh, but he can again make actual noise. I can't say that I thought I'd be glad to hear a baby cry...
Saturday, January 17, 2009
Early this morning, Oliver's ventiltor settings were turned down. Then at 9, his fentanyl got halved. by 9:30 he was agitated. The next 2.5 hours he screamed, spiked a fever, flailed his arms and legs, turned red, pushed his heart rate over 200 and his respiratory rate close to 120. The video shows him during a moderately calm period. It took a cocktail of more fentanyl, morphine, atavan, and ketamine to finally calm him down.
On the one hand, I'm glad he has the energy and heart function to get so mad for so long. On the other hand, it hurts to watch, unable to soothe him in any way. I left after his meds kicked in. I want his ventilator out. I don't think he needs it if he can pull this kind of stunt.
Friday, January 16, 2009
I held Oliver once on the 14th, twice on the 15th, and (hopefully) three times today. The first day I held him, he screamed every fifteen minutes for five minutes. On the 15th, he screamed a little less. This afternoon, he was placed in my arms awake and alert, stayed that way for twenty minutes then happily fell asleep. He only woke up angry once and settled back down quickly. At the end of an hour and a half, he started waking up happy again.
I discovered that he likes "How Great Thou Art." My daughter's cradle song was "Amazing Grace," so I guess that works.
Thursday, January 15, 2009
...most likely be exempt from the draft.
...not qualify to be an astronaut, but he could be a rocket scientist (more career longevity, according to the doc).
...be able to go diving with the Old Man.
...need to avoid big contact sports, like hockey, football and Big East basketball, although, he said, Big 10 basketball would probably be fine.
Don't worry...the huge tubes are just his ventilator. The white stuff on his face is just tape. The grey thing on his forehead is a sticker that measures his oxygen. And, dum, dum, dum, the turquoise thing in his mouth is a sucky-sucky (pacifier).
Most parents don't need to worry about drug addictions until their "babies" are much older. Last night at dinner, several other parents talked about the methadone treatment their children were receiving--their 4 and 10 week old children. Apparently, as the babies get weaned from fentanyl (a pain medication) they go through withdrawal. Some of them benefit from methadone. Oliver hasn't gotten weaned all the way down yet. He will continue getting his pain meds while he has his chest tubes in. However, the nurses do score him for withdrawal symptoms every day -- yawning, tremors, sneezing, irritability, etc...
In other news, Oliver once again has a chest! The doctors removed his dressing yesterday. Now I can see his scar. Isn't he a handsome man!
Tuesday, January 13, 2009
...my husband's hands holding our son.
...the surgeon's hands healing his heart.
...the nurse's hands caring for him in ways I can't.
...my daughter's hands, that have clung to mine since we've been back together.
...the hands of my family and friends typing messages of support, dialing the phone to say, "we love you," shoveling our walkways, and clasped in prayer.
Monday, January 12, 2009
Evelyn loves to visit her little brother. She rubs lotion into his dry skin and touches him with her gentle hands. Tonight, she even kissed the top of his head goodnight (after she helped him say his night-night prayer..."I love my mama. I love my papa. I love my big sister. Help my big sister have a big sleep. Help me be a concentration. Help my papa have a good sleep.").
She especially likes to help his bear, Charlie. Yesterday, she put Charlie in Oliver's bed. Then she gave him a tube and a bandage like Turnip. She got quite upset when we couldn't find any more tubes for Charlie. I got a little nervous that she might "appropriate" some of Oliver's. She gives Chalie oxygen and baby medicine with a syringe to help him sleep. Yesterday, she had a mask. We didn't get a new one today.
I felt my face go white and I leaned (abruptly) back against the wall. A passing (nurse?) asked, "are you O.K.?" I could barely make my mouth function. "What's going on in there? Why are the? What is?" tumbled out of my mouth. "Do you want to talk to somone? Do you want to sit down?" she asked. "Why is he covered in a blue sheet?" I asked. "Is that your child?" she asked. Then she went over and waited. "They are all busy," she said to herself. Then she caught nurse Suzie's attention. "Mom's out here," she said. "Can you tell her what's going on?"
Suzie came out and explained that they were putting in another line--a central line. "We have to put it in before we can take the heart lines out," she explained. "So we have access. He's been given lots of drugs so hopefully he's not aware of anything. It won't hurt him. We thought about calling you, but we knew you were in an appointment."
"It's o.k.," I said. "You're putting the central line in so you can take the heart lines out?"
"Yes. It's not as finicky. He can be held with a central line."
"So," I asked, "this is progress? After his heart lines come out, I can hold him?"
"Yes, He's just fine. We should have called you. We won't take the heart lines out today. Probably not until tomorrow or the next day, but it's definitely progress."
It's about time. This morning, I almost asked Oliver's nurse if he was really making forward progress or whether they were just postponing the inevitable.
B is for Bartkoviaks
C is for Children's Hospital of Wisconsin
D is for drugs and drug development
E is for Evelyn
F is for friends old and new, far and near
G is for grandparents and great-grandparents and unofficial grandparents
Yesterday, the cardiologist on duty told me that Oliver will be on his low-fat formula for four to six weeks. If I weren't so emotionally labile, that would have sealed the deal. As it is, the deal may be sealed anyway.
This does nothing for those tears waiting in the wings.
update at 1:06 pm: the insurance will cover my check-up and an ultrasound...I won't have to head back to Madison unless a biopsy is ordered.
I'm hoping its just a plugged duct or something else boring like that.
Sunday, January 11, 2009
I should learn to never vow anything. This time around, however, even I can see that it would make life more manageable if I stopped. I'm not talking easier, I'm just hoping for managable. Like, if I stopped, I'd have 2.5 more hours a day to sleep or pay attention to Evelyn. I would have more energy because fewer calories would be pouring out of my body. I figured (using a FDA calculator) that I produce 959 calories of milk every day...and that's just the caloric content of the milk. It doesn't take into account the energy needed to make the milk. Yet, at the same time, I want Oliver to have a chance to try to learn to breast feed. I can't think straight any more.
I'm feeling rather frustrated. I'm tired of having a fractured family. I'm tired of being tired. I just want to take him home and settle back into some sort of sustainable routine. Our current set up is near its breaking point. I get so upset when Oliver's alarms start going off, yet I don't want to leave him. I want to spend time with Evelyn, but I get worn out so easily. I've been near tears for the past few days.
Saturday, January 10, 2009
Jackie's been working in the NICU for decades. She told me that many moms go through a period of grief when they take their babies home. They've come to recognize their baby with all of the monitors attached. When the monitors come off, its as if part of their baby is missing, or they've been given a new baby. She said that it is also hard on mothers whose children have very severe cleft palates or other obvious physical abnormalities. The surgery to repair the palate is sometimes deferred for years. When it does happen, the parents go through a period of intense grief because their children no longer look like themselves. I get it.
Friday, January 9, 2009
I'm so excited Evelyn will be here tomorrow.
I just woke up from a nap in the hospital parent room.
Thursday, January 8, 2009
By the time the doctors had finished rounding on Oliver, I had to go make him some more food. I missed the anesthesiologist (why do I like every anesthesiologist I've met here?) getting IV #5 in with no problems. By the time I got back, the little boy had settled down quite a bit.
The intensivist came back in to make sure I wasn't too upset about the mornings shenanigans. Apparently, she'd noticed me getting upset. Later, the anesthesiologist came by to check in as well. His blunt attack on Oliver's treatment actually comforted me. I understand blunt. I liked seeing someone expressing strong opinions in strong language on behalf of my son. I know the ICU docs try to be kind, and they are. But, I come from a family of vocal, opinionated individuals. All of the quiet consensus I've seen in the ICU hasn't bothered me, but I realized today that it's felt a bit foreign and disinterested.
It was hard to hear the doc say Oliver looked wasted. It was hard to watch him get poked over and over again with no success. It was hard to say goodbye to Kevin as he left for Middleton this morning. It was hard not to go back with him to see my Dooder-McScooter (Evelyn). This morning was just hard.
But, Oliver settled this afternoon and slept quite soundly. When I got back from lunch, my Aunt Mary was there talking to him. I took a nap this afternoon. And, currently, the surgeon is in attempting to close Oliver's chest.
Wednesday, January 7, 2009
Also, it turns out his yawning and alertness have a simple explanation. His Fentanyl (sp?) dose was decreased from 5 to 3 (whats to what I don't know). Apparently, yawning is one of the signs of withdrawal from this narcotic.
Oliver has gotten visibly thinner through his trunk and abdomen. The occupational/physical therapists say he also feels much less edematous (hee hee!). The nurses and doctors say that he's putting out less fluid from his chest tubes (the large yellow/red tubes running from his bandages into his blankie). I think the edges of his wound are beginning to come together as well.
We brought in a blankie given to Oliver by Kevin's co-workers. We aren't allowed to cover his entire body because he's still under a heat lamp, but we can lay the soft fabric over his little legs. He looks so comfy to me.
Today, I get to wash off his neck, which is finally visible now that the swelling has gone down. I also saw him yawn a few times, something I hadn't seen him do before. He's much more awake today than he has been in the past. He likes to look around even though he can't really swivel his head, just his eyes. He does kick his legs a bit, but he has a tough time getting his arms to move. The braces for his IVs prevent him from moving.
(Just as an orientation, the coiled blue wires are for the pacemaker, which he hasn't used since the day of surgery. Each arm has a sort of IV and a brace to hold the IV in place. He still has a respirator heading off to the right of his face and a feeding tube (even though he's not being fed orally now). The big patch on his head measures blood flow to his brain. He has a matching patch on his back that measures blood flow to his kidneys. The small patch on his chest measures heart rate. He has a small bracelet around one foot that measures the amount of oxygen in his blood, and he has a central IV line (PIC line) heading from the other foot up to one of the major blood vessels right next to his heart. He's currently hooked up to 12 infusion pumps that are sending drugs, blood and saline through his various IVs. The lines from the pumps all converge on one or the other of his IV lines....it looks a bit like a river delta, with lots of branching streams. I'll take a wide-angle shot later so you can see his pumps, monitors and respirator).
Tuesday, January 6, 2009
This morning, I saw Angie's (name changed) parents packing up their food from the McDonald House pantry. Angie has struggled in the NICU with multiple medical conditions for more than a month. "How are you?" I asked. "We're going home today," replied dad as mom pushed the vacuum cleaner to their room. "Is that a good thing?" I asked. "Angie passed in the night," he said. "We have some food in the refrigerator, lunch meat and stuff like that. Do you want it?" As I got my breakfast, one of the volunteers came upstairs to tell Angie's mom she didn't need to clean their room. "You don't need to do that," she said. "Just go home."
"I'm so sorry," was the only thing I could say. When I went back to our room, I cried.
Two families...two very different ways to go home.
Monday, January 5, 2009
Aunt Mary loves to see Oliver's peepers. Today, he anticipated her arrival and opened his eyes seconds before I heard her cheery, "Hello, hello, hello!" They spent at least 20 minutes chatting while I had my post-op doctor's appointment. My incision looks good. I can't believe how thin the line is (too thin to walk, all of you Cash fans (ahem, mom and Mary)!).
Oliver is still loosing fluids (good). However, he's loosing them slowly. When I asked today, Dr. Musa said she thought he'd get closed in a week. One of the PAs on the CV surgery team thought the surgeon, Dr. Mitchell, might have a go at closing him up on Wednesday or Thursday, when he gets back from vacation. Although I want to hold Oliver and take him home, I'd rather the doctors not push him...I'd rather they take things slowly and follow Oliver's lead.
Sunday, January 4, 2009
I also met the mom of the Oliver's neighbor tonight. His neighbor had heart surgery at one week. She's almost stable enough for her mom to hold. We traded stories after we got back to Ronnie's.
Apparently, I've filled the freezer. The nurses asked me to start taking milk back to Madison. One of them even suggested making a bread pudding with the excess (I'm pretty sure she was joking). Whoever goes home next will travel with a cooler.
In a similar vein, one of the nurses today told me about her sister-in-law, who nursed each of her five children until age two. The sister-in-law recently broke her foot and her doctor wants her to get a bone scan. Apparently, "sharing" calcium isn't really sharing...it's more like giving away.
Saturday, January 3, 2009
Friday, January 2, 2009
Today, nurse Cindy told me that closing Oliver's chest will seem like a set back. He will be more heavily sedated, and will most likely struggle to adapt to the increased pressure on his heart. I'm tired of him struggling. I want him to be better now (I never have been strong on patience).
Big sister was sooo excited to see Oliver. She wanted to touch him and tell him that she loved him. She touched him so gently and was thrilled when he moved his leg in response. On a more age appropriate note, his pee-pee tube (catheter) fascinated her. She wanted to know if his chest tubes were also catheters. She wanted to see where the fluids went.
When it was time to go for the night, we had a family prayer. She wanted him to say it. We let her help him. Apparently, "gaa gaa gaa gaa gaa gaa gaa gaa gaa gaa," translates as, "I love mama and papa and Evelyn, Amen."
Due to this morning's procedure, Oliver received more drugs. He's now much more sedated although he seemed to be waking up and wiggling a bit more as I left a few minutes ago. He's also begun gagging on his respirator and feeding tubes. He wants them out of his throat.
Today, when Dr. Hoffman came in I asked him, "What should I tell people when they ask how Oliver is? What words should I use?"
Dr. Hoffman thought for a while and responded in part: "He is still in critical condition, but we expect him to be fine. We expect to discharge him with full organ function although his psycho-social development will be delayed because he hasn't been at home, lying on mom for the past few weeks."
Later, the nurse explained that psycho-social development just meant bonding. And, she reassured me that he will bond and that my being there and touching him is part of that process. She also brought me a chair to sit in while I touch his head and legs. Now, I'll be able to sit with him for longer.
Thursday, January 1, 2009
What's next: Closing the chest
When: The surgeon will try tomorrow
How: Two steps. Oliver has a metal strut holding his chest open extra wide. Step 1: remove the strut and allow his chest to relax. Step 2: Close and suture the wound.
Where: The nurse says that the closure may be performed in Oliver's room, not in an O.R. The less he gets moved, the better.
Future plans: After the chest is closed, the monitoring wires, chest tubes, and respirator can all be removed. After those are removed and he's eating by mouth, Oliver may be moved to the step-down ICU on the fourth floor.