We just got the "official" call that Parker's surgery will be tomorrow around lunchtime! Today was spent prepping him in the event that the call was made to go ahead tomorrow-- paralyzed for 24 hours, increased and constant suction on his stomach to get all the air out and make it squish back through the hole easier, some extra blood volume added, some extra diuretics and steroids. He was pretty out of it all day (obviously, with that laundry list of goings-on), HOWEVER, I finally got to see some eyeballs!!
I was too beside myself to take a picture. Apologies.
He opened them several times when I first arrived, so I was able to talk to him and rub his sweet little face while they put him under with the paralytic. My heart was (is) happy.
We are, naturally, nervous about the surgery tomorrow. I know we are in the best of hands, but no parent wants to see their 2 week old baby boy, whom we have never gotten to hold and snuggle with, get wheeled into an OR. Mike chatted briefly with the surgeon about the actual procedure, which will take about 2 hours depending on the severity of the hernia. If you have a moment around lunch time tomorrow, please send some thoughts and prayers on down towards Egleston. Mike and I will be in the surgical waiting area-- probably with me sweating profusely from my arm pits and Mike pacing around and playing his nerdy medieval app in which he takes over other people's cities on an imaginary planet (yeah... don't ask. I mock him mercilessly on a daily basis for it. And yet I love him still).
They will go in laproscopically to get a better view of the situation, and if they can, repair it without cutting open his chest. In that case, they will stitch the hernia closed by suturing the diaphragm to itself. This would be ideal, as opposed to a big giant incision under his ribs. If the hernia is large, they will open his chest and fix the diaphragm with mesh and a patch (probably made of Goretex). The risk of re-herniation later in life is greater with a patch, so we'd like to avoid that if at all possible. We aren't too picky, really, so long as the surgery goes well and Parker recovers as quickly as possible!
The mysterious right lung situation mentioned yesterday will probably not be addressed tomorrow. In addition to the three possibilities I listed yesterday, today the surgeon mentioned that it might just be some lung collapse from the right lung having to compensate for the left. Whatever the case may be, they have decided that Parker will be under enough stress tomorrow without adding all that to the mix, and that they can re-evaluate after he is recovered from his repair. Even if it is something that will be have to be surgically removed, that will wait for another six months to a year. We'll be on a regular consult basis with Dr. Parker for a few years, so they can keep a close eye on it. I am more than okay with letting that ride for a while if it isn't presenting any present danger. We have enough on our plates as it is!
Tomorrow is NATIONAL DONUT DAY! It's funny how God's timing has worked this week-- everything has happened sooner than expected, especially given the wretchedness of last week, so that one of the most critical days of Parker's life will fall on the day the rest of the country celebrates his favorite food. We already felt good about Team Parker (baby and doctor), and now combined with National Donut Day-- Jupiter has aligned with Mars, peace will guide the planets, and love will steer the stars, etc. etc. etc. We are ready to roll. We continue daily to see God's hand in Parker's life, and we feel His grace carrying us as parents. There's no way we'd be making it otherwise!
I will update after he comes out of surgery tomorrow.
Thank you so much for your thoughts and prayers.
Thursday, May 31, 2012
Chugging Along
Today was a good, steady day for the P-nut... So much so that there is talk of bumping up his surgery to Friday!! We are thrilled (and somewhat frightened) by this news. Tomorrow's progress will determine if he gets the go ahead-- if he stays where he is or improves, it's a go. Prayers for the doctors to know if he's ready or not!! I trust them, so if they are comfortable with Friday, I will try to be too.
In other news, there is an abnormality on Parker's chest xray. There is a mystery spot on the bottom of his right lung. There are three possible culprits:
1) congenital cystic adenomatoid malformation (a benign cyst. Pretty rare)
2) pulmonary sequestration (lung tissue that develops but doesn't attach to the actual lung, therefore being useless. Can be common with CDHs.)
3) just part of his hernia (Dr Williams feels this is the most likely)
None of the three are life-threatening at this time, and all three can be addressed during his repair surgery. None of the doctors seem to be upset about it. Mike and I of course are not fond of "mystery mass on lung." Still, whatever it is won't delay his repair surgery, and it sounds like all three possibilities can be removed with little to no fanfare. Dr. Parker said he will just deal with it when he gets in there, and doesn't think a CT scan is necessary in the meantime. It's always something-- this little one has quite a bag of tricks that he likes to throw in at various intervals!
I had Storytime Shift tonight. Still no eyeballs for Mommy. I DID get some response-- when I put my "mommy square" (a knitted pot-holder type situation that I wear in my bra during the day and then leave in his bed when I am not there... they say the scent is comforting to him) down next to him, he started sucking like crazy on his breathing tube. He's got the right idea for what to do when mom's around... I'll take what I can get at this stage!
He was not paralyzed today. When I got there, he was all sorts of wiggling around, but minus the angry silent cry sad face from when he was in so much pain last week. He was just squirming tonight. Squirming is good, it helps get fluid off and helps him start to develop muscle tone after the atrophy of 10 days of paralytic. Shortly thereafter, he snuggled himself into his little nest, pulled his little arms in, and fell sound asleep. There is a huge difference between the sleep of a heavily sedated somewhat paralyzed baby and a still sedated but able to move baby. His sleep tonight just LOOKED different-- he looked peaceful and downright comfortable.
I read him "The Little Red Lighthouse," kissed him goodnight, and came on home. Big day tomorrow-- surgery decisions. Please join us in praying for guidance for the doctors to make the best choice for Parker. He's had a heck of a week, and we don't want to upset the apple cart. We also don't want to hold him back when he's ready to push forward.
If his 12 days of life have been any indication, Parker will let us know in no uncertain terms. Strong-willed little stinker. Wonder where he gets that from??
In other news, there is an abnormality on Parker's chest xray. There is a mystery spot on the bottom of his right lung. There are three possible culprits:
1) congenital cystic adenomatoid malformation (a benign cyst. Pretty rare)
2) pulmonary sequestration (lung tissue that develops but doesn't attach to the actual lung, therefore being useless. Can be common with CDHs.)
3) just part of his hernia (Dr Williams feels this is the most likely)
None of the three are life-threatening at this time, and all three can be addressed during his repair surgery. None of the doctors seem to be upset about it. Mike and I of course are not fond of "mystery mass on lung." Still, whatever it is won't delay his repair surgery, and it sounds like all three possibilities can be removed with little to no fanfare. Dr. Parker said he will just deal with it when he gets in there, and doesn't think a CT scan is necessary in the meantime. It's always something-- this little one has quite a bag of tricks that he likes to throw in at various intervals!
I had Storytime Shift tonight. Still no eyeballs for Mommy. I DID get some response-- when I put my "mommy square" (a knitted pot-holder type situation that I wear in my bra during the day and then leave in his bed when I am not there... they say the scent is comforting to him) down next to him, he started sucking like crazy on his breathing tube. He's got the right idea for what to do when mom's around... I'll take what I can get at this stage!
He was not paralyzed today. When I got there, he was all sorts of wiggling around, but minus the angry silent cry sad face from when he was in so much pain last week. He was just squirming tonight. Squirming is good, it helps get fluid off and helps him start to develop muscle tone after the atrophy of 10 days of paralytic. Shortly thereafter, he snuggled himself into his little nest, pulled his little arms in, and fell sound asleep. There is a huge difference between the sleep of a heavily sedated somewhat paralyzed baby and a still sedated but able to move baby. His sleep tonight just LOOKED different-- he looked peaceful and downright comfortable.
I read him "The Little Red Lighthouse," kissed him goodnight, and came on home. Big day tomorrow-- surgery decisions. Please join us in praying for guidance for the doctors to make the best choice for Parker. He's had a heck of a week, and we don't want to upset the apple cart. We also don't want to hold him back when he's ready to push forward.
If his 12 days of life have been any indication, Parker will let us know in no uncertain terms. Strong-willed little stinker. Wonder where he gets that from??
Tuesday, May 29, 2012
What a Difference a Week Makes!
Just a week ago, we were in a really bad place. We were getting ready to say goodbye to our little boy.
A week from today, we might be in a whole new place. We might be looking at our newly repaired little boy!
Parker had a busy day today-- heart echo first thing in the morning, followed by the removal of his umbilical IV lines. He got stuck in his heel for an arterial line that will do many of the functions his umbilical line was doing, and they pulled out his dried up yucky cord stump with accompanying tape and tubes. Now, he just has a regular old belly with some monitor leads stuck on. He got both IVs out of each hand, so those are freed up now. He's starting to look less like Bionic Commando and more like a lil' boy. His head and neck have been slowly turned back towards the other side (imagine the crick after 10 days of facing the same way!), and the fluid in his head is slowly redistributing itself. Perhaps the most significant moment of his day was being flipped in his bed so that he doesn't face the wall anymore-- he faces out towards the unit like a regular baby! Big stuff happening for the P-Nut!
I got to change his diaper today, which made my heart glad. Ever so slowly, I am overcoming my fear of my 8 pound child. After some prodding and assurances that it was okay to do so, I grabbed both of those scrawny bird legs, hoisted him up, and took care of business. He did not break. His IVs did not fall out or catch on fire. The NICU police did not rappel in from the ceiling tiles. I was so very pleased to be wiping that tiny hiney. It's just adorable, if I do say so myself!
Medically speaking (here's the boring part for most people, but the interesting part for other CDH mommies):
He's on the conventional ventilator. No nitric oxide. Respiratory rates were at 50 yesterday, down to between 38 and 41 today. He's on 40% oxygen level. His blood gasses were great all day, and they will be looking to wean him down as much as possible throughout the week. His blood pressure is a concern (it was too low several times today), but they cut back on his diuretic to help with that. The echo results should come back tomorrow, which will give us an idea of what his pulmonary hypertension looks like now that he's off ECMO and responsible for his own circulation and oxygen exchange. We are praying for good results on that and continued ease of transition to the ventilator!
I am also, selfishly, ready for him to be less sedated. I usually take the day shift, and he's unresponsive to me. (Mike, on the other hand, has now had several eye opening times during Storytime Shift. I got a poopy diaper today. Hmph! I keep reminding myself that once it's milk time, Parker will find me most interesting!) I know that he has to be sedated for many reasons-- pain management, his terrible terrible temper, maintaining his vital signs, and not disrupting the breathing tube. With his surgery approaching, his sedation level will inevitably go up for a while. Still, I am very very ready for him to enter baby rehab and get all of these medicines out of his system. That's many many weeks away, and will be a slow, gradual process. Those medicines are keeping him alive and comfortable for now, and I certainly wouldn't trade that. I've seen him restless during the last week, and I hate it. Restless and sad Parker is infinitely worse than knocked out Parker. It's a tricky balance-- now that he is starting to look more like a normal baby, part of my mind expects him to act like a normal baby. We will get there!
I have to take a minute and say thank you to everyone who sends me Facebook messages or comments on here. I read every single one of them, and I try to respond as much as possible. Please know that all of the support means the world to us, and is a large reason that we are able to carry on with this odyssey each day. Keep the prayers coming-- we have a long road. ECMO was not much of a step forward... It was a measure to pull Parker out of the negative and put him back at ground zero, as he would have been on the day he was born. We haven't even begun to deal with the whole reason we are in this mess- the hernia, the displaced organs, and the fallout with regards to pulmonary function and feeding.
Every time I am reminded of that fact, either by myself or by something the medical staff says, I think of the old Bill Murrey movie "What About Bob?"
"Baby steps down the hallway... Baby steps to the elevator... baby steps out the door..."
A week from today, we might be in a whole new place. We might be looking at our newly repaired little boy!
Parker had a busy day today-- heart echo first thing in the morning, followed by the removal of his umbilical IV lines. He got stuck in his heel for an arterial line that will do many of the functions his umbilical line was doing, and they pulled out his dried up yucky cord stump with accompanying tape and tubes. Now, he just has a regular old belly with some monitor leads stuck on. He got both IVs out of each hand, so those are freed up now. He's starting to look less like Bionic Commando and more like a lil' boy. His head and neck have been slowly turned back towards the other side (imagine the crick after 10 days of facing the same way!), and the fluid in his head is slowly redistributing itself. Perhaps the most significant moment of his day was being flipped in his bed so that he doesn't face the wall anymore-- he faces out towards the unit like a regular baby! Big stuff happening for the P-Nut!
I got to change his diaper today, which made my heart glad. Ever so slowly, I am overcoming my fear of my 8 pound child. After some prodding and assurances that it was okay to do so, I grabbed both of those scrawny bird legs, hoisted him up, and took care of business. He did not break. His IVs did not fall out or catch on fire. The NICU police did not rappel in from the ceiling tiles. I was so very pleased to be wiping that tiny hiney. It's just adorable, if I do say so myself!
Medically speaking (here's the boring part for most people, but the interesting part for other CDH mommies):
He's on the conventional ventilator. No nitric oxide. Respiratory rates were at 50 yesterday, down to between 38 and 41 today. He's on 40% oxygen level. His blood gasses were great all day, and they will be looking to wean him down as much as possible throughout the week. His blood pressure is a concern (it was too low several times today), but they cut back on his diuretic to help with that. The echo results should come back tomorrow, which will give us an idea of what his pulmonary hypertension looks like now that he's off ECMO and responsible for his own circulation and oxygen exchange. We are praying for good results on that and continued ease of transition to the ventilator!
I am also, selfishly, ready for him to be less sedated. I usually take the day shift, and he's unresponsive to me. (Mike, on the other hand, has now had several eye opening times during Storytime Shift. I got a poopy diaper today. Hmph! I keep reminding myself that once it's milk time, Parker will find me most interesting!) I know that he has to be sedated for many reasons-- pain management, his terrible terrible temper, maintaining his vital signs, and not disrupting the breathing tube. With his surgery approaching, his sedation level will inevitably go up for a while. Still, I am very very ready for him to enter baby rehab and get all of these medicines out of his system. That's many many weeks away, and will be a slow, gradual process. Those medicines are keeping him alive and comfortable for now, and I certainly wouldn't trade that. I've seen him restless during the last week, and I hate it. Restless and sad Parker is infinitely worse than knocked out Parker. It's a tricky balance-- now that he is starting to look more like a normal baby, part of my mind expects him to act like a normal baby. We will get there!
I have to take a minute and say thank you to everyone who sends me Facebook messages or comments on here. I read every single one of them, and I try to respond as much as possible. Please know that all of the support means the world to us, and is a large reason that we are able to carry on with this odyssey each day. Keep the prayers coming-- we have a long road. ECMO was not much of a step forward... It was a measure to pull Parker out of the negative and put him back at ground zero, as he would have been on the day he was born. We haven't even begun to deal with the whole reason we are in this mess- the hernia, the displaced organs, and the fallout with regards to pulmonary function and feeding.
Every time I am reminded of that fact, either by myself or by something the medical staff says, I think of the old Bill Murrey movie "What About Bob?"
"Baby steps down the hallway... Baby steps to the elevator... baby steps out the door..."
Monday, May 28, 2012
Yeah... About That Peaceful Week...
First and foremost-- I must post the link (several have asked for it!) to Holden's Hut. Emily has so sweetly asked if she can do a fundraiser for Parker this week. I am amazed by her kindness and in love with her monogramming. She has appliqued and personalized bibs, burp cloths, t-shirts, and onesies... including a donut design. Seriously adorable!! CLICK HERE TO VIEW HER SITE! You can also find them on FACEBOOK. Thank you a million times over, Emily!
In other news, you perhaps might notice that it has been 48 hours since I whisper typed about having a nice quiet week with Parker and preparing to maybe talk about possibly eventually coming off ECMO towards the middle-end of this week. My whisper typing is apparently not quiet enough.
Saturday, as I wrote, was quiet and calm and peaceful, minus his two heart speedups (apparently those are called SVTs. You could read about it, but it will hurt your head.). Sunday, we went to church as a family, which was just plain good for our souls. We were loved on and hugged on and fussed over and told a million times that people are praying for us daily. Mike went to the hospital for the day shift, and after he came home for dinner, I took my first Storytime Shift. Storytime Shift happens from 9 to midnight, which sounds wretched to people who are not night owls like we are. It will probably have to end after this week, when Mike will head back to work and we will have to adjust our schedules accordingly.
I loved Storytime Shift. I got to spend the day with Jeremiah, take a good nap while he napped, reheated the first of my Psycho Mommy Freezer Meals, and then headed down to sit with my little swollen conehead P-nut and read him a story. (I chose Farley Goes to the Doctor. It was my favorite when I was a little girl... our copy is 30 years old and well-loved, and I thought it appropriate for Parker's situation. I loved the Sesame Street books. We still have so many of them!)
Parker DID NOT enjoy Farley. He spent the entire time I was there just plain pissed off. He was flailing. He was pouting. His blood pressure spiked. He shifted his cannulae and set the ECMO machine into a tizzy. All his numbers were fine, minus some occasional blood pressure and 2 more SVTs, but he was just plain ornery. I stayed later than I meant to so I could be sure he calmed down, and crawled into bed around 2 am.
At 6:30 this morning, my cell phone rang. Any NICU parent can tell you, those wake-up calls are the ones you never ever want to receive. I managed to swallow the bile rising in my throat long enough to croak out a greeting of some sort. It was the on-call neonatologist.
"Hi, Mrs. Knoll. *insert pleasantries* We have been having to push a lot of blood products into Parker overnight."
Heart failure. Last time we heard those words, we almost lost our little boy.
"The ECMO circuit is starting to get clogged and is consuming much of the platelets that we have been giving. At this point, the machine is starting to do more harm than good, and we are going to take him off this morning."
Pause long enough to be pleased that penis bleeding is not the issue, then panic as realization sets in. Thankfully, she had to click over to the other line to talk to the surgeon and said she'd call me back. I used those few minutes to wake my sorry self up and nudge Mike. She called back, and I asked how long we had. "It will pretty much be now, as soon as Dr. Parker gets here."
Breathe huge sigh of relief that it is Dr. Parker (we met with him prenatally-- he is very kind, scary scary smart, and everyone around that hospital has the nicest things to say about him). Fly out of bed, jump into shower, drag Jeremiah out of bed, place frantic phone calls to Sister to arrange last minute childcare (She lives 8 doors away from me and I am everyday grateful. Love you Sister!), get husband and child and self out the door. Hold tight as husband driveswell above slightly above speed limit.
I did use that car ride to do something I have never done--we were in such a hurry this morning that I actually had to utilize the car adapter for my breast pump. Yep, we were "southbound with the hammer down" as my brother-in-law says, with me attempting some modicum of decency with a dishtowel draped over my seatbelt. I always wondered why on earth they include a car adapter. NOW I KNOW.
We got to the hospital in plenty of time to see Parker before the decannulation. They had "capped off" the ECMO circuit, which means that it was still circulating blood for him, but it was not contributing any oxygen whatsoever. They turned up his ventilator to the settings they would use after the surgery, and took some blood gas measurements. They were spot on, combined with the results from his oxygen challenge the day before. The window of opportunity had opened, and I am happy they made the choice to go on through. Had the machine not started to get gummy, we might have waited a few more days. I like to think Parker's restlessness the night before was him saying, "I am ready! Get these tubes out already!"
Dr. Parker arrived and walked us through what would happen. He would remove the two large catheters stuck in his neck, and stitch the openings closed. He would also put in a temporary central line using one of the holes to deliver the medicines that Parker was getting through his ECMO circuit. It's pretty straightforward, but also dangerous (obviously). We kissed him and loved on him and told him to be strong. I snapped one last picture of our bedspace before...
**shout out to nurse Sarah! Woo woo! Love and adore her. She dealt so nicely with my hormonal sweaty armpit nervousness and my husband's incessant questioning and pacing.**
We waited in a consult room for about 45 minutes before Dr. Parker came in to tell us that all had gone smoothly (Parker did throw in one last SVT right before they started, just for fun), and that he was doing just fine. We can expect these first few days of transition to a ventilator to be rough, due to the fact that his heart and lungs are actually having to work now. He said that we should start looking towards next Monday or Tuesday for Parker's hernia repair, which will allow him to rest and strengthen his lungs as much as possible this week. Shortly thereafter, we went back to our greatly improved bedspace (they did the whole shebang right there in the NICU and never had to move Parker at all!)...
There's enough time to worry about all that this week. We are going to bed tonight so immensely proud of our boy-- it was a less than ideal way to get yanked off ECMO, but the doctors truly felt he was ready and that the timing was right. It was a scary day, and an exhausting day, but we are beside ourselves with relief. He's so much less scary to us now. We can approach his bedside so much more easily, we can actually touch him and rub him and smooch himwithout with less anxiety of knocking something over, and he will be able to eventually be less sedated and more aware of his surroundings soon. He has shown us, time and time and time again, that he's a fighter. Thank you, God, for this tiny miracle!!
In other news, you perhaps might notice that it has been 48 hours since I whisper typed about having a nice quiet week with Parker and preparing to maybe talk about possibly eventually coming off ECMO towards the middle-end of this week. My whisper typing is apparently not quiet enough.
Saturday, as I wrote, was quiet and calm and peaceful, minus his two heart speedups (apparently those are called SVTs. You could read about it, but it will hurt your head.). Sunday, we went to church as a family, which was just plain good for our souls. We were loved on and hugged on and fussed over and told a million times that people are praying for us daily. Mike went to the hospital for the day shift, and after he came home for dinner, I took my first Storytime Shift. Storytime Shift happens from 9 to midnight, which sounds wretched to people who are not night owls like we are. It will probably have to end after this week, when Mike will head back to work and we will have to adjust our schedules accordingly.
I loved Storytime Shift. I got to spend the day with Jeremiah, take a good nap while he napped, reheated the first of my Psycho Mommy Freezer Meals, and then headed down to sit with my little swollen conehead P-nut and read him a story. (I chose Farley Goes to the Doctor. It was my favorite when I was a little girl... our copy is 30 years old and well-loved, and I thought it appropriate for Parker's situation. I loved the Sesame Street books. We still have so many of them!)
Parker DID NOT enjoy Farley. He spent the entire time I was there just plain pissed off. He was flailing. He was pouting. His blood pressure spiked. He shifted his cannulae and set the ECMO machine into a tizzy. All his numbers were fine, minus some occasional blood pressure and 2 more SVTs, but he was just plain ornery. I stayed later than I meant to so I could be sure he calmed down, and crawled into bed around 2 am.
At 6:30 this morning, my cell phone rang. Any NICU parent can tell you, those wake-up calls are the ones you never ever want to receive. I managed to swallow the bile rising in my throat long enough to croak out a greeting of some sort. It was the on-call neonatologist.
"Hi, Mrs. Knoll. *insert pleasantries* We have been having to push a lot of blood products into Parker overnight."
Heart failure. Last time we heard those words, we almost lost our little boy.
"The ECMO circuit is starting to get clogged and is consuming much of the platelets that we have been giving. At this point, the machine is starting to do more harm than good, and we are going to take him off this morning."
Pause long enough to be pleased that penis bleeding is not the issue, then panic as realization sets in. Thankfully, she had to click over to the other line to talk to the surgeon and said she'd call me back. I used those few minutes to wake my sorry self up and nudge Mike. She called back, and I asked how long we had. "It will pretty much be now, as soon as Dr. Parker gets here."
Breathe huge sigh of relief that it is Dr. Parker (we met with him prenatally-- he is very kind, scary scary smart, and everyone around that hospital has the nicest things to say about him). Fly out of bed, jump into shower, drag Jeremiah out of bed, place frantic phone calls to Sister to arrange last minute childcare (She lives 8 doors away from me and I am everyday grateful. Love you Sister!), get husband and child and self out the door. Hold tight as husband drives
I did use that car ride to do something I have never done--we were in such a hurry this morning that I actually had to utilize the car adapter for my breast pump. Yep, we were "southbound with the hammer down" as my brother-in-law says, with me attempting some modicum of decency with a dishtowel draped over my seatbelt. I always wondered why on earth they include a car adapter. NOW I KNOW.
We got to the hospital in plenty of time to see Parker before the decannulation. They had "capped off" the ECMO circuit, which means that it was still circulating blood for him, but it was not contributing any oxygen whatsoever. They turned up his ventilator to the settings they would use after the surgery, and took some blood gas measurements. They were spot on, combined with the results from his oxygen challenge the day before. The window of opportunity had opened, and I am happy they made the choice to go on through. Had the machine not started to get gummy, we might have waited a few more days. I like to think Parker's restlessness the night before was him saying, "I am ready! Get these tubes out already!"
Dr. Parker arrived and walked us through what would happen. He would remove the two large catheters stuck in his neck, and stitch the openings closed. He would also put in a temporary central line using one of the holes to deliver the medicines that Parker was getting through his ECMO circuit. It's pretty straightforward, but also dangerous (obviously). We kissed him and loved on him and told him to be strong. I snapped one last picture of our bedspace before...
**shout out to nurse Sarah! Woo woo! Love and adore her. She dealt so nicely with my hormonal sweaty armpit nervousness and my husband's incessant questioning and pacing.**
We waited in a consult room for about 45 minutes before Dr. Parker came in to tell us that all had gone smoothly (Parker did throw in one last SVT right before they started, just for fun), and that he was doing just fine. We can expect these first few days of transition to a ventilator to be rough, due to the fact that his heart and lungs are actually having to work now. He said that we should start looking towards next Monday or Tuesday for Parker's hernia repair, which will allow him to rest and strengthen his lungs as much as possible this week. Shortly thereafter, we went back to our greatly improved bedspace (they did the whole shebang right there in the NICU and never had to move Parker at all!)...
Look at the space! Dance party, anyone?
We took a Proud Parent shot with our much less frightening baby.
We instigated Operation Cure Parker's Conehead and got to see his face straight on for the first time!
Parker celebrated by taking the first poop of his whole life. Yep-- he had gone 11 days without ridding himself of the dreaded meconium. So he ridded himself today. Over and over and over and over and over again. We love poop from Parker-- it means that his intestines are emptying, which will greatly aid the hernia repair process. The nurses have informed us that they will happily hand off dirty diaper duty soon, and I cannot wait to wipe that scrawny little fanny for the first time.
The next few days will focus on helping him adjust to the ventilator (he's doing well so far! Some minor hiccups with his carbon dioxide numbers, but his oxygen has been great!), trying to de-puff the marshmallow man (he's on diuretics and peeing *and now pooping* up a storm), and warding off pulmonary hypertension. He has some (it would be a miracle if he didn't), but it's not too concerning just yet. We'd like it to go away real fast, because that is what gets CDH babies into trouble.
There's enough time to worry about all that this week. We are going to bed tonight so immensely proud of our boy-- it was a less than ideal way to get yanked off ECMO, but the doctors truly felt he was ready and that the timing was right. It was a scary day, and an exhausting day, but we are beside ourselves with relief. He's so much less scary to us now. We can approach his bedside so much more easily, we can actually touch him and rub him and smooch him
All day today, as I was praying and pleading for this to go smoothly, and then praying and praising for God's mercies, I had this verse running on a loop in my head:
"This is what the Sovereign Lord says to these bones: I will make breath enter you, and you will come to life. I
will attach tendons to you and make flesh come upon you and cover you
with skin; I will put breath in you, and you will come to life. Then you
will know that I am the Lord."
--Ezekiel 37:5-6
He put breath into Parker's body today. Granted, it's with all sorts of mechanical assistance, but when push comes to shove, God made sure Parker was ready to come off ECMO. And we know, as we have been reminded so often during this journey, that He is the Lord. Amen!
Saturday, May 26, 2012
Quiet Day
Ssssshhhhhhh... do you hear it? That's the sound of peace and quiet from Parker's corner of the NICU. For the last 23 hours, 59 minutes, and 40 seconds, he has been happily snoozing with no drama.
*I wish I could type in whispers. 'Cause that's what I feel I should be doing so he doesn't overhear me and start acting a fool*
I have to reserve 20 seconds of the last 24 hours for his two tachycardic episodes-- one last night and one this morning. For about 10 seconds each time, his heart rate shot up into the 190s to 200s (he normally cruises around 130). By the time the ECMO specialist could adjust her dials or the nurse could push the button to silence the monitor, it was over. Unknown causes.
My initial fear was that it must be some sort of seizure. Nope. They thought it might be from the ECMO cannula "tickling" his heart. Could be, but doesn't look like it from the xrays. The general consensus is that he has run out of other tricks, and has resorted to this to keep everyone awake. Nobody's really concerned about it, as ECMO can have all sorts of wacky side effects. There are zero other indicators-- no change to his blood pressure, oxygen levels, or outward appearance. Still, I'm his mommy and I'd like it to go away.
Apart from those two 10 second intervals, Parker has been remarkably well-behaved today. He continues to pee what seems to be impossible amounts from his tiny little body (granted, they are pumping alot of fluid into him, so alot comes out... but he's managing to pass all the fluid they are giving him PLUS some extra. This is good news as it helps greatly with his swelling.) His stats were AMAZING today... yesterday they tried to bump his ECMO down to .28 and his oxygen started plummeting. Just 24 hours later, he is at a .22 and his oxygen has been 96+ all day. His blood gas draws have been spot on. PRAISES FOR HIS IMPROVING ABILITY TO OXYGENATE HIMSELF AND GET RID OF CARBON DIOXIDE!
*Here's where my whisper typing gets even quieter*
Yesterday, Parker's ECMO was at .31. It is currently set to .22 and he's doing great. Dr. Williams' goal for him is to be at a .20. Just sayin'.
They have ditched the paralytic, but have increased his sedation. Obviously, I would prefer a baby who isn't as drugged up as he is, but that's what it takes to keep him calm. He REFUSES to be still unless he's sedated, and we simply cannot have him thrashing around while he's on ECMO. Believe me, he does thrash-- I've seen it. He can wiggle a good bit now without the paralytic, which is helping with the fluid reduction. There will be plenty of time for him to flail his arms and legs when he doesn't have giant tubes stitched into his neck.
All in all, it was a quiet day of rest and progress. The ECMO team has a saying, "ECMO is 95% boredom, and 5% sheer terror." I'd like to think we have used up our 5% of terror for our ECMO run and will finish up with some smooth sailing.
Just don't tell Parker. :-)
*I wish I could type in whispers. 'Cause that's what I feel I should be doing so he doesn't overhear me and start acting a fool*
I have to reserve 20 seconds of the last 24 hours for his two tachycardic episodes-- one last night and one this morning. For about 10 seconds each time, his heart rate shot up into the 190s to 200s (he normally cruises around 130). By the time the ECMO specialist could adjust her dials or the nurse could push the button to silence the monitor, it was over. Unknown causes.
My initial fear was that it must be some sort of seizure. Nope. They thought it might be from the ECMO cannula "tickling" his heart. Could be, but doesn't look like it from the xrays. The general consensus is that he has run out of other tricks, and has resorted to this to keep everyone awake. Nobody's really concerned about it, as ECMO can have all sorts of wacky side effects. There are zero other indicators-- no change to his blood pressure, oxygen levels, or outward appearance. Still, I'm his mommy and I'd like it to go away.
Apart from those two 10 second intervals, Parker has been remarkably well-behaved today. He continues to pee what seems to be impossible amounts from his tiny little body (granted, they are pumping alot of fluid into him, so alot comes out... but he's managing to pass all the fluid they are giving him PLUS some extra. This is good news as it helps greatly with his swelling.) His stats were AMAZING today... yesterday they tried to bump his ECMO down to .28 and his oxygen started plummeting. Just 24 hours later, he is at a .22 and his oxygen has been 96+ all day. His blood gas draws have been spot on. PRAISES FOR HIS IMPROVING ABILITY TO OXYGENATE HIMSELF AND GET RID OF CARBON DIOXIDE!
*Here's where my whisper typing gets even quieter*
Yesterday, Parker's ECMO was at .31. It is currently set to .22 and he's doing great. Dr. Williams' goal for him is to be at a .20. Just sayin'.
They have ditched the paralytic, but have increased his sedation. Obviously, I would prefer a baby who isn't as drugged up as he is, but that's what it takes to keep him calm. He REFUSES to be still unless he's sedated, and we simply cannot have him thrashing around while he's on ECMO. Believe me, he does thrash-- I've seen it. He can wiggle a good bit now without the paralytic, which is helping with the fluid reduction. There will be plenty of time for him to flail his arms and legs when he doesn't have giant tubes stitched into his neck.
All in all, it was a quiet day of rest and progress. The ECMO team has a saying, "ECMO is 95% boredom, and 5% sheer terror." I'd like to think we have used up our 5% of terror for our ECMO run and will finish up with some smooth sailing.
Just don't tell Parker. :-)
Friday, May 25, 2012
Lifestyles So (not) Rich and Famous
First and foremost, it is Parker's one week birthday! Happy birthday to my precious boy!
I have to be honest. I usually internally mock the people with the "My baby is 467 days old today!" status updates. NO LONGER, my friends. If there has been anything we've learned in this last 7 days, 14 hours, and 39 minutes (see, I can do it too!), it is to treasure every blessed second. So so proud of my boy.
Today was fairly quiet-- no real changes on anything except that they upped his diuretics with no upset of his blood pressure. He peed and peed and peed and peed and peed all day. *Note to others-- celebrating your child's pee might seem strange. And it is. But, after entering the phrase "scrotum sling removed today" in my journal, strange is a relative term.* He's getting less puffy by the day, and it makes me glad. ESPECIALLY because, as I sat here typing, Mike texted me a video from Storytime Shift:
We have eyeballs! The whole thing just makes me want to fall on the floor and laugh and cry and sing praises to God. Best One Week Celebration Ever!
So many people have already commented on what a tremendous husband I have. Trust me, I am aware. He has amazed me this week. I thought he was a fantastic Daddy before, but he has reached a whole new plane that I can't really describe to you. I don't have to, 'cause you can hear it in his voice during that video. Love that man.
In other news, Parker's day was, as I said, pretty quiet. They weaned down his ECMO a bit, but it's going slowly because the pressure on his lungs isn't going down as fast as they'd like. I am much more fine with going too slowly than too quickly. Dr. Williams stopped by before she left for her long weekend, and said that she expects him to still be on ECMO when she gets back Tuesday, but that her focus next week will be hitting it hard to get him off. He's improving daily, his blood pressure is under control, and his xrays show lung growth every day. We are hopeful.
Medically speaking, that's about it. We were treated to many visitors today-- my boy is famous! Parker has the honor of being "the ECMO kid" right now, meaning he's the only one in the hospital on it. He is now one of the stops on the Egleston tour for visiting dignitaries. Today we saw many groups pass through, some of IT/tech people looking at the electronic chart systems and some of physicians. They all stopped to see Parker's setup, which I must admit looksscary as crap impressive to bystanders. I told Parker they were all coming to tell him happy birthday. I don't think he bought it.
What also has amazed me is how many of the staff members know about Parker and keep up with him. Lots of people who aren't technically assigned to his care swing by to see how he's doing. Our sweet sweet transport team from Northside to Egleston stops by each time they bring in a new baby (which is too often, in my opinion. So many sick babies!). One of our ECMO specialists said he logged on from home on Wednesday to check on Parker after the Terrible Tuesday episode. It makes me happy that so many people are invested in his care. And our care, to boot-- anybody who works in a NICU is taking just as much care of the parents as they are the babies. Bless their souls. I would have kicked us out by now.
We are all settled back in our house now-- we retrieved our sweet Maggie, who has spent the last day collapsed in a pile of exhaustion from playing all week with her brother. We slept like the dead in our own bed last night. Jeremiah has been most pleased to be reunited with his baseball bat and glove. We sure do miss JeanJean's Bed and Breakfast, where you eat until you burst and are fussed over 24/7. She took such good care of us all week and I love her to bits. It was so nice to be close to the hospital, and she gave us a key to keep so we can crash there whenever we need. JeanJean rules.
We are trying to set up our "new normal" routine, factoring in a drive that is now 45 minutes each way and the fact that Mike may be headed back to work in 10 days. It's hard, and tiring, but it's nothing compared to sweet moments with both my boys. Jeremiah asks every day when he can play with Baby Parker. Our standard response is "Parker is too sleepy to play right now." Now that he's opening his eyes, i.e. waking up a little, we are one step closer to having two little boys tearing around the backyard with baseball bats and swords. Hurry hurry hurry.
I have to be honest. I usually internally mock the people with the "My baby is 467 days old today!" status updates. NO LONGER, my friends. If there has been anything we've learned in this last 7 days, 14 hours, and 39 minutes (see, I can do it too!), it is to treasure every blessed second. So so proud of my boy.
Today was fairly quiet-- no real changes on anything except that they upped his diuretics with no upset of his blood pressure. He peed and peed and peed and peed and peed all day. *Note to others-- celebrating your child's pee might seem strange. And it is. But, after entering the phrase "scrotum sling removed today" in my journal, strange is a relative term.* He's getting less puffy by the day, and it makes me glad. ESPECIALLY because, as I sat here typing, Mike texted me a video from Storytime Shift:
We have eyeballs! The whole thing just makes me want to fall on the floor and laugh and cry and sing praises to God. Best One Week Celebration Ever!
So many people have already commented on what a tremendous husband I have. Trust me, I am aware. He has amazed me this week. I thought he was a fantastic Daddy before, but he has reached a whole new plane that I can't really describe to you. I don't have to, 'cause you can hear it in his voice during that video. Love that man.
In other news, Parker's day was, as I said, pretty quiet. They weaned down his ECMO a bit, but it's going slowly because the pressure on his lungs isn't going down as fast as they'd like. I am much more fine with going too slowly than too quickly. Dr. Williams stopped by before she left for her long weekend, and said that she expects him to still be on ECMO when she gets back Tuesday, but that her focus next week will be hitting it hard to get him off. He's improving daily, his blood pressure is under control, and his xrays show lung growth every day. We are hopeful.
Medically speaking, that's about it. We were treated to many visitors today-- my boy is famous! Parker has the honor of being "the ECMO kid" right now, meaning he's the only one in the hospital on it. He is now one of the stops on the Egleston tour for visiting dignitaries. Today we saw many groups pass through, some of IT/tech people looking at the electronic chart systems and some of physicians. They all stopped to see Parker's setup, which I must admit looks
What also has amazed me is how many of the staff members know about Parker and keep up with him. Lots of people who aren't technically assigned to his care swing by to see how he's doing. Our sweet sweet transport team from Northside to Egleston stops by each time they bring in a new baby (which is too often, in my opinion. So many sick babies!). One of our ECMO specialists said he logged on from home on Wednesday to check on Parker after the Terrible Tuesday episode. It makes me happy that so many people are invested in his care. And our care, to boot-- anybody who works in a NICU is taking just as much care of the parents as they are the babies. Bless their souls. I would have kicked us out by now.
We are all settled back in our house now-- we retrieved our sweet Maggie, who has spent the last day collapsed in a pile of exhaustion from playing all week with her brother. We slept like the dead in our own bed last night. Jeremiah has been most pleased to be reunited with his baseball bat and glove. We sure do miss JeanJean's Bed and Breakfast, where you eat until you burst and are fussed over 24/7. She took such good care of us all week and I love her to bits. It was so nice to be close to the hospital, and she gave us a key to keep so we can crash there whenever we need. JeanJean rules.
We are trying to set up our "new normal" routine, factoring in a drive that is now 45 minutes each way and the fact that Mike may be headed back to work in 10 days. It's hard, and tiring, but it's nothing compared to sweet moments with both my boys. Jeremiah asks every day when he can play with Baby Parker. Our standard response is "Parker is too sleepy to play right now." Now that he's opening his eyes, i.e. waking up a little, we are one step closer to having two little boys tearing around the backyard with baseball bats and swords. Hurry hurry hurry.
Thursday, May 24, 2012
The Small Things in Life
Will I EVER stop being afraid to be excited at the end of the day? Will I ever stop waiting for the other shoe to drop? Will I ever be able to go to bed without thinking that the phone will ring in the middle of the night to tell me we are back in
Sarah, today's nurse, asked if I wanted to wipe his eyes and mouth. I think I probably looked completely taken aback, and the first thing out of my mouth was "Can I do that???" You'd think she had asked if I would like to fly to the moon. She told me that OF COURSE I could wipe his eyes and mouth and that it's something he very much enjoys. I saddled up and grabbed hold of that little wipe and went to town.
(um, sorry for the sideways)
All in all, it was a tremendous day. We left today feeling like parents, for the first time in a week. We were walking on air, especially considering how far we've come in 2 days. It's is *almost* laughable what a difference a matter of hours makes to us now. That being said, it plays right back into my fears I mentioned at the top-- we could go from blissful peace to Tuesday all over again at the drop of a hat.
It's not worth living in fear. I am choosing instead to go to bed happy with the day we had today, and riding high on the fact that I got to help take care of my baby boy!
Pastor Ron came by again today-- he heard about how wretchedly bad things had gone since his last visit, and he wanted to check on us. I was most pleased to report to him that we were in a far better place. He prayed for Parker again, and in doing so asked God to surround baby Parker and help him feel how loved he is. We can't hold him and snuggle him, but I know without a doubt there are hands holding him in our place. Mike and I are not the only ones taking tremendous pride in Parker's steps forward. It is the greatest comfort to know that we can say to Parker:
THE PIT OF DESPAIR???
I hate that it has to be that way now, but so it goes in the NICU.
Today was a fantastic day. The P-nut is OFF HIS DOPAMINE and his blood pressure is maintaining quite nicely. He is off of the preventative dialysis from the circuit change. He's off his paralytic, and there is no sign of bleeding. Instead, there is movement, and breathing efforts, and the sweetest attempts at opening his eyes! His eyelids are still a bit too puffy to get them all the way open, but he is trying so hard. They started him on Lasix, which is a diuretic, to get some fluid off. He's peeing up a storm, so it will hopefully work soon. I can't wait to see his little eyeballs!
We had THE SWEETEST NURSE today. I am so used to sitting in my chair trying very hard not to knock into anything. Every so often, I will go to Parker's bed, rub his arms and legs and head, talk to him, and then go back to my chair. The ECMO machine takes up a huge amount of space, and the whole setup is so very delicate, I am terrified of stepping on something. I am terrified of knocking his cannulae (the big tubes going into his neck) out of whack. I am scared of my baby.
Sarah, today's nurse, asked if I wanted to wipe his eyes and mouth. I think I probably looked completely taken aback, and the first thing out of my mouth was "Can I do that???" You'd think she had asked if I would like to fly to the moon. She told me that OF COURSE I could wipe his eyes and mouth and that it's something he very much enjoys. I saddled up and grabbed hold of that little wipe and went to town.
(By "went to town," I mean "placed approximately 4 featherlight touches on his eyes and 1 sort-of swipe of his mouth, all the while holding my breath and being petrified of ringing sirens and NICU police descending upon me) She told me that he particularly likes to have his lips moistened, and that he's trying to lick the wipe. Sure enough, he did! As I wiped his eyes, he tried so very hard to open them to see me.
I was completely beside myself. Fell all to pieces but tried to maintain some dignity and also tried not to blow snot rockets on the child. Amazing how something so very small, so insignificant when I did it to Jeremiah, could turn my whole world around. Today was the first day, **do I dare say this out loud???** that I felt like he might make it after all.
When Mike joined me (he and Jeremiah had been to the park for the afternoon), he got a turn and also got to do some baby stretches to work some fluid through. I put on some eye cream for him.
All in all, it was a tremendous day. We left today feeling like parents, for the first time in a week. We were walking on air, especially considering how far we've come in 2 days. It's is *almost* laughable what a difference a matter of hours makes to us now. That being said, it plays right back into my fears I mentioned at the top-- we could go from blissful peace to Tuesday all over again at the drop of a hat.
It's not worth living in fear. I am choosing instead to go to bed happy with the day we had today, and riding high on the fact that I got to help take care of my baby boy!
Pastor Ron came by again today-- he heard about how wretchedly bad things had gone since his last visit, and he wanted to check on us. I was most pleased to report to him that we were in a far better place. He prayed for Parker again, and in doing so asked God to surround baby Parker and help him feel how loved he is. We can't hold him and snuggle him, but I know without a doubt there are hands holding him in our place. Mike and I are not the only ones taking tremendous pride in Parker's steps forward. It is the greatest comfort to know that we can say to Parker:
"The Lord your God is with you,
he is mighty to save.
He will take great delight in you,
he will quiet you with his love,
he will rejoice over you with singing.”
he is mighty to save.
He will take great delight in you,
he will quiet you with his love,
he will rejoice over you with singing.”
-Zephaniah 3:17
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