A Broken Heart

Incidence:
35,000 children are born with heart defects every year (American Heart Association)
Only 1% of those children have truncus arteriosus (many sources, including the Herma Heart Center where Turnip may be treated)
That means about 350 babies are born in the U.S. with the same condition as Turnip every year. (330 according to the Morbidity and Mortality Weekly Report from jan 6, 2006)
Treatment:
Surgery usually happens at 6-12 weeks (EPA, page 4)
15-50% of children require another surgery within the next five years (i.b.i.d.)
All heart valves are replaced after 12 years(i.b.i.d.)
Newborns with truncus arteriosus stayed in the hospital for an average of 30 days during 2003 (CDC, table 2)
The hospital charges for this stay (not including lab tests and doctor fees) ran to $200,000 (CDC, table 2)
Mortality:
In a small study published in 1996, 6% of infants died before surgery and 10% died during surgery (EPA, page 4)
In a national survey, 20% of newborns with truncus arteriosus died in the hospital in 2003 (CDC, table 1)

Friday, January 30, 2009

sibling stress

Evelyn seems so nonplussed by all the hoopla surrounding her little brother. She'll tell you about his broken heart, explain that he had surgery and get excited about wearing gloves, gown and mask. She's very interested in medical procedures--many of our games include someone needing medical attention. I don't mind, becuase when I'm the patient, I get to lie down and rest for a while.

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.

Uncertain

So, Oliver is not in isolation any more. The test for rsv came back negative as well as all the other initial cultures. I guess there are still a couple more pending, but so far, he doesn't appear to have a bug. That means we don't have to wear gloves, mask, gown any more.

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

all suited up


Somehow, things seem much more serious (and harder to bear) when you have to don mask, gowns, and gloves just to go see your baby.

no right way

One day, as I talked to the anesthesiologist about the long term implications of Oliver's heart defect, the surgery, his surgical complications, and the extended hosptial stay, he paused for a long moment. Then he looked at me and said, "You know, there's really no right way to do this. To do what you're doing."

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.]

re-escalation

I've learned two things this morning: the value of critical mass and the speed with which medical staff can respond.

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

scars and a visitor

I realized I've only been posting photos of Oliver with clothes on. I thought he might want to show off his badges of honor!

Aunt Mary came this afternoon. This photo was taken pre-erp. Thank goodness smells don't travel with photos. His formula stinks!!!!

new mobile


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

full disclosure

A friend recently emailed me. She wrote: "X said you sounded completely exhausted over the phone. That's something that doesn't really come out in the posts and your emails...I'm sorry I haven't been more aware of your fatigue."

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

happy baby



Today, I took Oliver for several walks around the 4th floor (thanks, Tamara). ON one of our excursions, we poked around the child-life room where we found a mobile hanger. Perfection! Now, if only it spun!

eating

At 10 am, Oliver took 17 ccs...very slowly (and then got the rest pumped into his stomach). By 12:20 he was rooting around and sticking his fists in his mouth. At 1 pm he took 21 ccs in about three minutes. Then he got the rest through his nose. Last Friday, Angie from speech/feeding said she expected him to be taking around 20 ccs orally by today. So, I guess he's right on her schedule.

PORK! TREAT!


Oliver can hear out of both ears.

hungry


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.

Grandma's Visit



Saturday, January 24, 2009

eats like a banshee

So, Oliver surprised his nurse and me this morning by eating a lot. They turned off his high pressure, high flow O2 at 8:30 this morning. At 10 he ate 50 cc. About 10 times as much as he's been able to get down on his own. Get the eating figured out and off the breathing tubes and he goes home. One doc this morning said about a week... it's possible, I guess. But, I'm not going to get my hopes up yet.

Friday, January 23, 2009

a room with a view


Oliver couldn't have a better view:

how many...


...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.

real boy

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

dilemma

My husband and daughter got sick a three days ago. I've been wearing a mask to see Oliver ever since. Now, I've had a scratchy throat yesterday and today. I let myself sleep in this morning and feel a bit better, but I'm still heading to the store to get some Tylenol. I keep wondering, "did I get what they have? Is it just walking in the extreme cold? What does Oliver need more, cuddling or a sterile environment?" I've decided to stay the course and wear a mask while I hold him today (I turned into an obsessive hand-washer weeks ago).

Wednesday, January 21, 2009

frustration

I shouldn't be frustrated. Oliver is breathing slower (25-75 breaths/min). He's pooping every three hours without straining. He's not fighting his ng feeds and is beginning to get feeds from a bottle.

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.

missing

Today, when I arrived at Oliver's room, I saw this:
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

Oliver's first TV show

Today, Oliver and I watched the inauguration while we rocked in his hospital room. Grandma said she and Evelyn had the TV on at home. Kevin planned to listen on the radio as he drove back for his first day of classes. I didn't want Oliver to feel left out. He quieted down for Biden's oath and the John Williams piece but started fussing again during Obama's speech.

misconceptions

On Sunday, I drove my daughter back to Madison to pick up Grandma. As I hopped into the driver's seat, she nearly squealed in delight: "Mama, you can drive!"

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.

he has a forehead...



...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).

for John Poppy


You say C-PAP, I say elephant! Oliver has been getting 5-minute breathing treatments four times a day.

Monday, January 19, 2009

milky, milky, II



Our newly borrowed freezer is nearly half full.

catch-up post


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.

Getting hopes up...

It's hard to get my hopes up. Things have been taking so long. At least it feels that way. The doctors are talking about some next steps, but I don't even want to write about them here for fear that they won't be able to move forward with plans. When I first came in this morning, he was a little upset. They took out his Foley catheter--that's the one the urine comes out. That didn't seem to bother him too much. But, they also reduced his O2 flow, and that seemed to bother him a lot. Or, it could just be that he's waking up and realizing how uncomfortable he is. Yesterday, he was more mellow. Lots of crying and flailing today. I held him for a while as he cried, but with him turning red they wanted to suction him and increase the oxygen. So, they increased the flow again and gave him a pressure treatment. He's sleeping now, although I just went to comfort him as he cried a bit. He got food yesterday, and they're increasing the food today (special low fat formula to prevent chylous issues). If the feedings go well, they'll remove the chest tubes tomorrow. This afternoon they're even planning to let me feed him by bottle to see how that goes.

Sunday, January 18, 2009

Breathing tube out for now

The doc took his breathing tube out today. He said that Oliver seemed fine after doing it and that it went fairly smoothly. He said that they were worried Oliver might not be strong enough, but that his breathing seems fine and his strength level is good. The nurse just now took a blood sample to make sure that his blood gas numbers look okay.
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

blech

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

hospital humor


This made me laugh today...until I asked what HOT stands for...Hematology, Oncology, and something else scary that starts with a T

more alert


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

career plans

I just talked to one of the docs who assured me Oliver will...

...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.

one month


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).

gratitude: I & J

I is for internet
J is for Jay Leno

early bloomer


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

fun at the hospital and the house


big sister - little brother



Some progress

The doctors managed to get the central line in through the artery/vein in Turnip's groin today on the first try (I guess they tried a few times yesterday). I had threatened to start jabbing needles in their groins if it didn't work. This new line is good news because they can take out two other heart lines and a drain tube. They also say he's making progress towards being able to take out the breathing tube and hope to do so in the next couple of days.

gratitude: H

H is for hands...

...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.

ruffles have ridges

I am a potato chip. At least that's what the radiologist said. The ultrasound would have picked up any nastiness. It also would have picked up a clogged duct. Although they could easily feel my lump, neither the tech nor the doctor could see anything. "It's a hard tissue ridge," explained Dr. Schaeffer (sp?). "Just pay attention to it. Make sure it doesn't change." What a relief. Last night I told my husband, I didnt' think they'd find anything. But, I felt so much more cheerful after my appointment. I think I was worried without realizing it.

Monday, January 12, 2009

big sister




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.

forward progress

After my doctor's appointment (ultrasound scheduled for tomorrow at 9 am), I walked back to Oliver's room. I rounded the corner, intending to put my purse down before washing my hands. However, I fell back after my first glance. I saw Oliver's little body draped in deep blue surgical cloths. Actually, I couldn't see his body. The drapes covered his entire bed and four medical personnel blocked my view: two on each side of his bed--all in surgical scrubs: masks, booties, gloves, etc...

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.

gratitude A-G

A is for aunts and aunties
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

an indecent proposal

Before anyone gets worried, no, I'm not that hungry. This is a proposal of a different sort. I'd like to propose a race. A race to the finish with my sister, if, that is, she's still thinking of weaning her small fry. What are your plans, little sister?

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.

a lump

Yes, that kind of lump. I get to have an exam later today...if my insurance covers a visit in Milwaukee. Otherwise, I'll be heading back to Madison ASAP.

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

food for Oliver

When my daugher and I didn't master the art of breastfeeding, my mother encouraged me to feed her formula. "It will be so much easier," she said. At the time, I disagreed. I continued to express milk for her for six months. I vowed I would never do it again.

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.

chest tubes

Oliver started getting food through his ng tube yesterday. Unfortunately, it didn't make it through his system. His digestive tract sprung a leak and the food has been coming out of his chest tubes (at least that's how I understand it). It's not a huge concern. The leaks usually heal just fine. It's just another setback. He will not get food to his stomach again for 24 hours. Then he'll get to start on some low-fat formula.

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

head patch

Two days ago, I came to see Oliver while the nurses were changing the big patch on his head. At first I couldn't figure out what looked wrong. He looked like an alien baby. Today, Jackie the PT said, "I'm sure you'll be glad to go home and just have a normal day with him." "I don't know," I said. "I think it will be weird to see him without his head patch. The monitor is part of him now and he doesn't look like my baby without it."

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.

plusses and minuses

Oliver had a bumpy night, but looks good today. He's trying to breathe on his own and is awake and aware. He has begun getting food through his NG tube again...which is good. I've been told that an active digestive tract helps fight diseases. It's also good to get all of his body systems up and running so we can take him HOME! On the down side, he has swollen back up because he was on vecuronium (the paralyzing drug) again. Now that he's off and moving...and still getting edema massages...the swelling should go down again.

Friday, January 9, 2009

evening update

Oliver continues to struggle with his newly closed chest. His main troubles seem to be breathing and low blood pressure. The nurses and doctors told us to expect these problems and they do seem to have everything under control. However, I left a bit early tonight. I get nervous when his monitors keep alarming and the nurses begin scurrying in and out and calling the doctors for consults.

I'm so excited Evelyn will be here tomorrow.

PICU-the wide angle view


morning update

All quiet on the mid-western front. Oliver had a rocky night and got re-paralyzed and re-sedated. His response to the chest closure was not outside of the normal range. He's still peeing like a ....racehorse (I was going to put camper, but that doesn't really work) and has less fluid coming out of his chest tubes (both good things). However, his aortic valve looked more leaky on the echocardiogram he had last night (now its mild to moderate).

I just woke up from a nap in the hospital parent room.

late update


The computer lab at Ronnie's was closed by the time I got back at 10:30 last night. Oliver was closed. He seemed to be doing well when Aunt Mary and I went to see him...all except for one measure of oxygen in his blood (his back sats). The doctors and nurses felt the problem was with the monitor, however, not his actual level of oxygen, so they were running lab work on him every hour to make sure nothing turned sour in the night. I'm heading back over in a few minutes.
Last night, he looked frail. I think its becasue he was completely sedated and his body looked so much smaller with his chest wound closed. I hope he eats like his big sister did!!!

Thursday, January 8, 2009

Oliver's bad morning...mama's bad morning

When I got to the hospital this morning, Oliver was purple and screaming. Well, I suppose he wasn't screaming as he can't make any sounds, but had he not had a tube down his throat, I'd have gotten an earful. His IVs went bad overnight, he was in pain, and the nurses couldn't get any pain meds in. I sat there during the first four attempts to start an IV. Then, the doctors rounded on him. The anesthesiologist (who I like) enthusiastically excoriated the resident who gave report on Oliver. "What are his X? What about Y? What does that mean? Why did you do this? How much food is he getting? How come its not more? He's not getting enough calories. Look at him. His cardiac output is fine. He's stable. But he has muscle wasting. His extremities are spindly and he has a bulging abdomen. At some point, nutrition becomes a medical emergency."

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

closure?

Apparently, the surgeon came by after we left for dinner. Oliver is now the 3rd add on for surgery tomorrow. What does that mean? He may get his chest closed early in the morning. He may get his chest closed late at night. He may not get his chest closed at all. Love the uncertainty?

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.

thinning out


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

snowfall


The snow began falling again today. It looked magical as I drove home from the hospital. Fluffy flakes swirled in the street lights. A pale blanket covered cars and sidewalks.

two families

On Sunday, I encountered Edward's (name changed) parents as they were loading up their car. Edward was born a few days before Oliver, had open heart surgery two days after Oliver and went home on Sunday. "We're praying for Oliver," said Edward's dad as he pushed his bags towards their car. Aha! I thought, with a surge of joy, these babies do get to go home!

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.

another day in the ICU

Oliver is quite boring--still hooked up to all of his whistles and bells, still trying to pee off all of his extra fluids. The doctors stopped his oral feeds today. They're giving him IV nutrition in the hopes that he'll stop putting so much fluid out of his chest tubes. They can't close him while he's 1) so puffy and 2) producing so much fluid in his chest.

Monday, January 5, 2009

Hello, Aunt Mary


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

sweetsie

This evening, Oliver was awake and alert for at least ten minutes. He looked around and tried to follow me with his eyes. He also opened his mouth when I stroked his chin, as if to say, "Hey, mom, where's the food?" The nurse (Patty) brought me a pacifier which I dipped in sugar water--I think its called sweetsie. Oliver really lapped it up. It was so nice to see him alert and comfortable--no grimaces of pain tonight.

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.

milky, milky

This is a post for my sister....

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.

I got to hold Oliver

Oliver's swelling has gone down quite a bit. The fluids come out either through his Foley catheter or through his chest tubes. Today, so much fluid came out that his chest tubes started to leak (not a problem) and soiled his sheets. When nurse Cathy changed his sheets, I held Oliver. I didn't get to snuggle him, just support him a foot above his bed while the nurse quickly swapped out the soiled linens. Still, I supported his entire weight in my hands. The tears welled up.

Saturday, January 3, 2009

J*** McDonald

Evelyn loved the Ronald McDonald House, particularly the play place with all of the tunnels. Just like the play places in the restaurants, this one has a bench with a statue of Ronald. The only problem is, we have a family friend named J*** McDonald. The first time I took Evelyn to the play place, she didn't pay much attention to the statue other than asking what the lady was doing (I guess she's not used to men with big, red hair). When Kevin took her back, he introduced her to Ronald. Evelyn got confused and kept calling the statue J***, then quickly correcting herself.

he held my hand

Oliver has been more awake today. Unfortunately, he's been making sad faces. I don't know if it helped him any, but I sure felt better when he grabbed my finger so hard his little knuckles turned white.

Friday, January 2, 2009

frustration

I have finally gotten frustrated. I don't like staying at the hospital. I don't like our fractured family. I don't like all of the tubes and wires. I just want to pick Oliver up and take him home. I want to take care of my daughter. The uncertainty unnerves me.

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's Visit


h


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."

Big Sister coming to visit

Kevin went home to pick up Evelyn this morning. I'm so excited for her to see her little brother. I'm so excited for her to be with us. I want us to be an entire family.

inter-operative update XI

The surgeon took the strut out of Oliver's chest this morning. The surgical team will assess the feasability of closing the chest all of the way on Sunday. Dr. Hoffman said Oliver now looks like they'd expect a baby to look on post-operative day 4. This is day 6 for Oliver, so he's a bit behind the curve, but then again, he did unexpectedly go back on ECMO after surgery.

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.

How is Oliver?

I have struggled with how to answer this question. Sometimes I say, "good," but honestly, his chest is open, he's connected to a respirator and currently has 30 wires and/or tubes coming out of him (Kevin counted yesterday!). He's not good.

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

inter-operative update X

Good: Oliver opened his eyes today, is receiving more food via the NG tube and has belly sounds, is less swollen (edematous, in Dr. speak. I always think the doctors and nurses are talking about the hairy beans served with sushi--edamame--when they talk about his swelling) and is wiggling more.

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.