I am completely and utterly exhausted since Will came home. It's not that he's a bad baby, he sleeps really well at night (waking up to eat and then going back to sleep). It's that I don't sleep well. I sleep, but it isn't good sleep. I never hit that deep sleep where you are truly relaxed. I seem to linger at the surface of sleep. I worry too much about Will. What's really amazing is that as paranoid as Iam, I am still much better than I was when Julianna came home.
I am so tired I can't even hold my head up. I am so glad I am home by myself, because all anyone would see is me typing on the computer and then my head suddenly drops when I fall asleep, then I jerk it back upright and try to appear as nothing happened.
I MUST stay awake until 11pm when Will gets his next dose of meds. Seriously, I might end up with whiplash over this head bobbing.
Monday, April 26, 2010
Sunday, April 25, 2010
Thursday, April 22, 2010
To Quote Ozzy Osbourne...
If Will could talk, I am pretty sure he would be quoting Ozzy Osbourne right now...
"Mama, I'm comin' hooooooooooome!"
Wahoo, our little man comes home tomorrow! I am so excited I can hardly contain myself. After an initial diagnosis of HLHS and being told Will would require a series of open heart surgeries and would spend his first few months in the hospital, he is coming home just 25 days after his birth!
As of right now (because it's changed about a million times) his diagnosis is Shone's Syndrome with a hypoplastic (small) left ventricle. Other than possible heart caths, his future does not look like it will include any more heart surgeries. Since the day he was born, when his left ventricle was barely functioning, his heart has continued to improve. As of his latest echo (done on Tuesday) his left ventricle (though still small and mis-shapen) is functioning at an almost completely normal level! He is a little miracle! Thank you to everyone who prayed for Will and his heart. The prayers were definitely answered and we are so thankful!
Will will not be coming home with any equipment, but will be coming home with 6 different meds: Captopril, Digoxin, Lasix, Zantac, Potassium Chloride, & a multi-vitamin. The first 2 are his heart meds, the potassium is to counter-act some of the effects of the Lasix (a diuretic), and the Zantac is for his reflux. His nurse today made a great color coded schedule for his meds, so we can easily see what he gets and when he gets it. She also worked with a pharmacist and doctor to get him on a better med schedule. He was getting meds just about every hour round the clock, now he will get all but 2 at the same time and none of them need to be given in the middle of the night, thank goodness.
Now for the bad news (well bad for most of you). As of tomorrow, our family is officially on lockdown. My fellow preemie moms know what I'm talking about. We will not be going many places, especially where there will be lots of people (the one exception will be March for Babies because it's outside and Will can stay in his stroller and not be touched). We are also asking that you not ask to come see Will if you are or have recently been sick, if anyone in your family is or has recently been sick, or if a sick person has even looked at you funny in the last month (just kidding about that one). But seriously, we do not want to risk Will getting sick, at least not anytime soon (we realize he will eventually get exposed to germs). So our current visitors are going to be limited to family. I'm sure once summer is in full force we will venture out more and let more people meet Will, we really are very excited to show him off!
Tomorrow, I will try to post pictures of Will's homecoming. And you can all see pictures of him completely wire/tube free!
"Mama, I'm comin' hooooooooooome!"
Wahoo, our little man comes home tomorrow! I am so excited I can hardly contain myself. After an initial diagnosis of HLHS and being told Will would require a series of open heart surgeries and would spend his first few months in the hospital, he is coming home just 25 days after his birth!
As of right now (because it's changed about a million times) his diagnosis is Shone's Syndrome with a hypoplastic (small) left ventricle. Other than possible heart caths, his future does not look like it will include any more heart surgeries. Since the day he was born, when his left ventricle was barely functioning, his heart has continued to improve. As of his latest echo (done on Tuesday) his left ventricle (though still small and mis-shapen) is functioning at an almost completely normal level! He is a little miracle! Thank you to everyone who prayed for Will and his heart. The prayers were definitely answered and we are so thankful!
Will will not be coming home with any equipment, but will be coming home with 6 different meds: Captopril, Digoxin, Lasix, Zantac, Potassium Chloride, & a multi-vitamin. The first 2 are his heart meds, the potassium is to counter-act some of the effects of the Lasix (a diuretic), and the Zantac is for his reflux. His nurse today made a great color coded schedule for his meds, so we can easily see what he gets and when he gets it. She also worked with a pharmacist and doctor to get him on a better med schedule. He was getting meds just about every hour round the clock, now he will get all but 2 at the same time and none of them need to be given in the middle of the night, thank goodness.
Now for the bad news (well bad for most of you). As of tomorrow, our family is officially on lockdown. My fellow preemie moms know what I'm talking about. We will not be going many places, especially where there will be lots of people (the one exception will be March for Babies because it's outside and Will can stay in his stroller and not be touched). We are also asking that you not ask to come see Will if you are or have recently been sick, if anyone in your family is or has recently been sick, or if a sick person has even looked at you funny in the last month (just kidding about that one). But seriously, we do not want to risk Will getting sick, at least not anytime soon (we realize he will eventually get exposed to germs). So our current visitors are going to be limited to family. I'm sure once summer is in full force we will venture out more and let more people meet Will, we really are very excited to show him off!
Tomorrow, I will try to post pictures of Will's homecoming. And you can all see pictures of him completely wire/tube free!
So Close
We are anxiously awaiting the moment we get told Will gets to come home. Dr Awesome has already said Will is ready for discharge as far as his heart and lungs go. Now we are just waiting for the stupid NICU doctors to OK his discharge. They say that in order for him to come home he has to drink 60ml (2oz) every 3 hours and finish the bottle in under 20 minutes. That seems so ridiculous. I don't know any baby, healthy or sick, that eats the exact same amount at every feeding and I know plenty of babies that take way longer than 20 minutes to eat.
And so we wait...Will has come so far and now he's so close to coming home. I can't wait for the OK to bring him home!
And so we wait...Will has come so far and now he's so close to coming home. I can't wait for the OK to bring him home!
Tuesday, April 20, 2010
Communication Frustrations
Today started out as a bad day for me (not for Will, he's awesome!). Among other early hurdles, I overslept and had to skip breakfast to make it to Will's room in time for rounds. I managed to get there less than 5 minutes before the doctors...whew! Rounds were great! The doctors said he has amazed them with his progress in the last 3 days and overall. Dr S (the heart surgeon) even said he swore that Will would be a typical hypoplastic left kid, and now looking back is truly amazed and knows that the Norwood (first open heart) would have been the wrong thing to do. He said "patience for the patient" was key for Will. I AGREE! He has no more lines in, his only wires are to his heart monitor and pulse-ox, and he is eating like a champ (45-50ml every 3-3.5hrs).
During rounds it was confirmed that Will would be moving to the NICU today. But when was decided. So I pumped, fed Will, met with Dr Awesome, he had an echo, talked with the PICU doctor, pumped again, talked with Dr Awesome about Will's echo (his heart is now functioning at an almost normal level!!!!!), he had a physical therapy session and then I realized I was starving because it was lunch and I hadn't eaten all day yet. So I ran down to the cafeteria and grabbed a piece of pizza to eat in Will's room. When I got back, it was time for his big move, so I had to scarf down the pizza and pack up the last of his room.
His move to the NICU was so cute (I wish I had taken a picture)! They made him a bed in a wagon and he had his first wagon ride down to the NICU. They said he was so stable he didn't need any monitors for the ride there, so why not let him ride like a normal kiddo.
Here's where my day got way more frustrating...
I have been spoiled by both the NICU Julianna was in and by Will's PICU room (mostly by Will's PICU room, it had huge windows and a couch and was very roomy), so I knew there would be an adjustment going to a NICU that had multiple babies in each room, but it is much harder than I expected. Will's room has 7 babies in it (3 in his pod), there are no windows (most NICU's don't have them), and because there are preemies the lights are kept very low. Big change from his PICU room. Once his PICU nurse Laura (whom we really liked) left I felt so alone.
I learned the communication between the PICU and NICU is apparently not that great. They saw him as any other "sick" baby they would get. He was going to be there at least several days for observation to make sure he was stable enough to go home and then he would be assessed for discharge. WHAT?!?!?! I was told by the PICU doctors he was definitely stable enough to go home that he just needed to prove his eating skills. Then they tried to tell me they needed to teach me how to measure and administer his meds, which I had been doing all day up in the PICU already and was told I was checked off on. Then the NICU doctor started to add meds to his regimen...SERIOUSLY?? I was getting frustrated.
Then lactation came down. I was told they wanted him to nurse, which is fine, I would rather nurse than pump anyway. But they said nursing would delay his coming home and that even nursing he would come home with orders to supplement with a bottle at every feeding. If I was still going to have to pump and bottle feed every feeding, why the heck would I try the nursing and delay him coming home. I said I would pump and bottle feed and then I got a huge lecture from lactation about how that isn't a good idea and that my milk supply would never keep up and I wanted to scream at her, but instead I calmly told her a pumped for Julianna and never had an issue with my supply. She still tried to convince me to nurse and wrote up orders for me to put him to breast at every feeding I'm there. She just wouldn't listen to me.
He got evaluated by a speech therapist for his eating abilities. He did well, just needs a slower flow nipple (and possibly my milk thickened) because he aspirated a little bit while eating. She isn't too concerned though because he then coughed and was better.
Because Will is now a NICU patient we have to go through all the discharge hoops. We have to watch all kinds of parent education videos, prove we can feed and bath him, and all kinds of other things that seem silly since he was only supposed to be in the NICU for 24 hours.
Then a resident came in and said they were concerned with Will's heart rate being a little low. I tried to tell them that it had been that low for the last few days and that Dr Awesome wasn't concerned. They said it was a concern. UGH! They added neuro evaluations every 4 hours, why I have no idea! I was so frustrated at this point I left to pump and started to cry. How could one department think he was so ready to go home and then the next think he wasn't stable???
My parents thankfully came up to see Will, and calmed me down and ate dinner with me in the cafeteria. When I got back to the NICU, Dr Awesome had been there while I was gone and, because he is so awesome, straightened out some of the mess. He told them Will is there strictly to prove he can eat enough, that he doesn't need neuro evals or extra meds, that he is a stable patient and can go home as soon as he is eating well enough, which in his opinion he was already doing. I seriously think Dr Awesome is my favorite person in the whole world right now! He has been such an advocate for Will, and we are so thankful for him.
I am hoping that when I head back to the NICU in the morning things will finally be straightened out and there will be a plan for Will and his homecoming.
During rounds it was confirmed that Will would be moving to the NICU today. But when was decided. So I pumped, fed Will, met with Dr Awesome, he had an echo, talked with the PICU doctor, pumped again, talked with Dr Awesome about Will's echo (his heart is now functioning at an almost normal level!!!!!), he had a physical therapy session and then I realized I was starving because it was lunch and I hadn't eaten all day yet. So I ran down to the cafeteria and grabbed a piece of pizza to eat in Will's room. When I got back, it was time for his big move, so I had to scarf down the pizza and pack up the last of his room.
His move to the NICU was so cute (I wish I had taken a picture)! They made him a bed in a wagon and he had his first wagon ride down to the NICU. They said he was so stable he didn't need any monitors for the ride there, so why not let him ride like a normal kiddo.
Here's where my day got way more frustrating...
I have been spoiled by both the NICU Julianna was in and by Will's PICU room (mostly by Will's PICU room, it had huge windows and a couch and was very roomy), so I knew there would be an adjustment going to a NICU that had multiple babies in each room, but it is much harder than I expected. Will's room has 7 babies in it (3 in his pod), there are no windows (most NICU's don't have them), and because there are preemies the lights are kept very low. Big change from his PICU room. Once his PICU nurse Laura (whom we really liked) left I felt so alone.
I learned the communication between the PICU and NICU is apparently not that great. They saw him as any other "sick" baby they would get. He was going to be there at least several days for observation to make sure he was stable enough to go home and then he would be assessed for discharge. WHAT?!?!?! I was told by the PICU doctors he was definitely stable enough to go home that he just needed to prove his eating skills. Then they tried to tell me they needed to teach me how to measure and administer his meds, which I had been doing all day up in the PICU already and was told I was checked off on. Then the NICU doctor started to add meds to his regimen...SERIOUSLY?? I was getting frustrated.
Then lactation came down. I was told they wanted him to nurse, which is fine, I would rather nurse than pump anyway. But they said nursing would delay his coming home and that even nursing he would come home with orders to supplement with a bottle at every feeding. If I was still going to have to pump and bottle feed every feeding, why the heck would I try the nursing and delay him coming home. I said I would pump and bottle feed and then I got a huge lecture from lactation about how that isn't a good idea and that my milk supply would never keep up and I wanted to scream at her, but instead I calmly told her a pumped for Julianna and never had an issue with my supply. She still tried to convince me to nurse and wrote up orders for me to put him to breast at every feeding I'm there. She just wouldn't listen to me.
He got evaluated by a speech therapist for his eating abilities. He did well, just needs a slower flow nipple (and possibly my milk thickened) because he aspirated a little bit while eating. She isn't too concerned though because he then coughed and was better.
Because Will is now a NICU patient we have to go through all the discharge hoops. We have to watch all kinds of parent education videos, prove we can feed and bath him, and all kinds of other things that seem silly since he was only supposed to be in the NICU for 24 hours.
Then a resident came in and said they were concerned with Will's heart rate being a little low. I tried to tell them that it had been that low for the last few days and that Dr Awesome wasn't concerned. They said it was a concern. UGH! They added neuro evaluations every 4 hours, why I have no idea! I was so frustrated at this point I left to pump and started to cry. How could one department think he was so ready to go home and then the next think he wasn't stable???
My parents thankfully came up to see Will, and calmed me down and ate dinner with me in the cafeteria. When I got back to the NICU, Dr Awesome had been there while I was gone and, because he is so awesome, straightened out some of the mess. He told them Will is there strictly to prove he can eat enough, that he doesn't need neuro evals or extra meds, that he is a stable patient and can go home as soon as he is eating well enough, which in his opinion he was already doing. I seriously think Dr Awesome is my favorite person in the whole world right now! He has been such an advocate for Will, and we are so thankful for him.
I am hoping that when I head back to the NICU in the morning things will finally be straightened out and there will be a plan for Will and his homecoming.
Monday, April 19, 2010
Updates...
Update on my little man:
~His art line (arterial line) was taken out today, no more hourly labs.
~He was taken off his milrinone (IV heart med) and has been holding his own!
~He was taken off his nipride (IV blood pressure med)
~He is now on captopril (oral blood pressure med)
~He is also now on an oral diuretic to keep his fluids down
~He is attempting to breastfeed
~He is consistently taking 40-45cc's of milk at his bottle feedings
~He still has his central line (IV) but it will be removed this evening
~The only wires/tubes he has left are for his heart monitor & pulse-ox
~He should be moving to the NICU tomorrow!!!
~Once he is eating enough he will come home!!!!!!
Update on my girlie:
~She still has a nasty cough, but her breathing is much better
~She once again dislikes mommy & daddy for leaving her
~She thoroughly enjoyed her "vacation" at the RMH
~She was spoiled rotten by Grandma H this past weekend
Update on mommy & daddy:
~Joe is going back to work tomorrow. I think he's actually excited
~I am still chillin' at the RMH until Will comes home
~WE ARE READY FOR WILL TO BE HOME & BE A FAMILY
*Please disregard any mispellings concerning Will's meds or medical treatments, I am totally guessing on most of them.
~His art line (arterial line) was taken out today, no more hourly labs.
~He was taken off his milrinone (IV heart med) and has been holding his own!
~He was taken off his nipride (IV blood pressure med)
~He is now on captopril (oral blood pressure med)
~He is also now on an oral diuretic to keep his fluids down
~He is attempting to breastfeed
~He is consistently taking 40-45cc's of milk at his bottle feedings
~He still has his central line (IV) but it will be removed this evening
~The only wires/tubes he has left are for his heart monitor & pulse-ox
~He should be moving to the NICU tomorrow!!!
~Once he is eating enough he will come home!!!!!!
Update on my girlie:
~She still has a nasty cough, but her breathing is much better
~She once again dislikes mommy & daddy for leaving her
~She thoroughly enjoyed her "vacation" at the RMH
~She was spoiled rotten by Grandma H this past weekend
Update on mommy & daddy:
~Joe is going back to work tomorrow. I think he's actually excited
~I am still chillin' at the RMH until Will comes home
~WE ARE READY FOR WILL TO BE HOME & BE A FAMILY
*Please disregard any mispellings concerning Will's meds or medical treatments, I am totally guessing on most of them.
Sunday, April 18, 2010
Great Strides
So many things have changed with Will since my last post. He was put back on the ventilator about 3am on Thursday morning due to cardiac failure (his heart just couldn't do all the work it needed to). It was one of the worst moments ever. He was technically in congestive heart failure, a term that just scared the crap out of me. He had a rough day on Thursday trying to get himself back to where he was before he was taken off the vent. His chest x-rays looked bad and he was improving very slowly. Friday went much better, and yesterday morning at 10:45 he was extubated again. This time he has stayed off the vent!
When they take kiddos off the vent they put them on VapoTherm (basically oxygen and water shoot up their nose). They said he could be on it for a few days or for weeks, it just depended on how well he did. Just this afternoon he was taken off VapoTherm and put on a small amount of oxygen through a nasal cannula. A big step! They are actually thinking he will be able to come off the oxygen completely this evening! His breathing has improved SOOOOOO much in the last 2 days!
During the night shift last night, Will pulled his NG tube out. They decided before they put another one in that they would try a bottle feed. He has now had his last 3 feedings completely by bottle! AMAZING! This is such a BIG deal for several reasons. But the main one is that we were told that if his heart was working too hard (a bad thing) that he would be too tired to eat from a bottle. Dr Awesome was so pleased that he was able to eat. He wasn't able to eat more than a few ml at a time before surgery because he would just get too tuckered out.
The nurse still has to help burp him due to all his wires and tubes.
Friday, they took out his chest tube and closed up the rest of his incision. This morning they took out his catheter (he's much happier now) and one of his IV's, so at this point his wires and tubes are down to his arterial line in his right arm (this is how they do his blood draws and monitor his blood pressure), a pulse-ox on his foot, the leads on his chest (5 of them), an IV in his right leg, and his nasal cannula (soon to be removed). The spaghetti mess of wires is getting smaller!
Julianna has spent the last3 days here at the hospital with joe, my mom, and myself. I was so tired of not seeing both of my kiddos whenever I wanted and when we were able to get a room at the Ronald McDonald House I was excited she could stay with us. She did really well until today, and I think she was just really ready to get out of the hospital and be somewhere else. We spent our days amusing here with the various toys at the hospital and RMH, and going for wagon rides, and elevator rides, and escalator rides.
She loved getting cups of ice & water, she felt like such a big girl.
Sibling jealousy reared its head yesterday when Julianna and Joe returned from a nap at the RMH to find me holding Will. She kind of flipped out temporarily. She suddenly wanted to sit on my lap and tried to climb up even with all Will's wires. That amazed me because she has wanted nothing to do with me since I got home from my hospital stay almost 3 weeks ago.
When they take kiddos off the vent they put them on VapoTherm (basically oxygen and water shoot up their nose). They said he could be on it for a few days or for weeks, it just depended on how well he did. Just this afternoon he was taken off VapoTherm and put on a small amount of oxygen through a nasal cannula. A big step! They are actually thinking he will be able to come off the oxygen completely this evening! His breathing has improved SOOOOOO much in the last 2 days!
Will on VapoTherm (seriously I cannot get over how cute he is!)
During the night shift last night, Will pulled his NG tube out. They decided before they put another one in that they would try a bottle feed. He has now had his last 3 feedings completely by bottle! AMAZING! This is such a BIG deal for several reasons. But the main one is that we were told that if his heart was working too hard (a bad thing) that he would be too tired to eat from a bottle. Dr Awesome was so pleased that he was able to eat. He wasn't able to eat more than a few ml at a time before surgery because he would just get too tuckered out.
He's now eating an ounce and a half every 3 hours!
The nurse still has to help burp him due to all his wires and tubes.
Friday, they took out his chest tube and closed up the rest of his incision. This morning they took out his catheter (he's much happier now) and one of his IV's, so at this point his wires and tubes are down to his arterial line in his right arm (this is how they do his blood draws and monitor his blood pressure), a pulse-ox on his foot, the leads on his chest (5 of them), an IV in his right leg, and his nasal cannula (soon to be removed). The spaghetti mess of wires is getting smaller!
He is still on IV meds for his BP and to help "optimize" his heart function. They have started to wean him from the IV blood pressure meds to an oral one (he needs to get on an oral one in order to come home). And his diuretic is now oral as well (they are trying to keep his fluids low to help his heart work "smarter not harder"). We are not getting any time lines for him to come home. The doctors say it's all up to him, and that they don't pass final "judgement" on home until he is packed up & in our car.
He's no longer a naked baby! He doesn't particularly like clothes.
Julianna has spent the last3 days here at the hospital with joe, my mom, and myself. I was so tired of not seeing both of my kiddos whenever I wanted and when we were able to get a room at the Ronald McDonald House I was excited she could stay with us. She did really well until today, and I think she was just really ready to get out of the hospital and be somewhere else. We spent our days amusing here with the various toys at the hospital and RMH, and going for wagon rides, and elevator rides, and escalator rides.
Today she got to play with a mask (Joe and I had to wear them while one of Will's dressings was being changed).
She loved getting cups of ice & water, she felt like such a big girl.
Sibling jealousy reared its head yesterday when Julianna and Joe returned from a nap at the RMH to find me holding Will. She kind of flipped out temporarily. She suddenly wanted to sit on my lap and tried to climb up even with all Will's wires. That amazed me because she has wanted nothing to do with me since I got home from my hospital stay almost 3 weeks ago.
Both the kids are doing really well and I cannot wait for us to all be home as a family and get some sense of normal life again.
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