Sunday, March 30, 2008
Saturday, March 29, 2008
deal
Finally Friday. The end of a really bad week. Thank goodness.
Because of Eliot's inability to swallow, we have been forced to find a solution that will enable her to continue to feed - without taking food by mouth.
After much grappling, we have decided to proceed with a G-J tube - a surgical procedure that threads a special soft feeding catheter into the small bowel.
The surgery is tentatively scheduled for Friday. It is a quick procedure, and a short, 2-day recovery time. We are rightfully worried and scared, but are confident that this is the best decision for Eliot. Her throat needs time to heal, and the G-J tube will give it the rest it needs. We are hoping that the tube will only be used for the short-term, and that her vocal chord will come back to life soon.
Cried about it? Yes.
Said "It isn't fair." Repeatedly.
Thrown a tantrum? Yes, 7 to be exact.
But, if someone had found me the day I had my 27-week twins - sitting in my 5th floor post-partum room, scared out of my hospital gown - and said: "The twins will be fine. But Eliot will need more time to heal and feed." I would have said, "Done." I would not have hesitated on that deal for a second.
Our NICU story, though scary, is actually a good one. That's what we choose to remember.
Because of Eliot's inability to swallow, we have been forced to find a solution that will enable her to continue to feed - without taking food by mouth.
After much grappling, we have decided to proceed with a G-J tube - a surgical procedure that threads a special soft feeding catheter into the small bowel.
The surgery is tentatively scheduled for Friday. It is a quick procedure, and a short, 2-day recovery time. We are rightfully worried and scared, but are confident that this is the best decision for Eliot. Her throat needs time to heal, and the G-J tube will give it the rest it needs. We are hoping that the tube will only be used for the short-term, and that her vocal chord will come back to life soon.
Cried about it? Yes.
Said "It isn't fair." Repeatedly.
Thrown a tantrum? Yes, 7 to be exact.
But, if someone had found me the day I had my 27-week twins - sitting in my 5th floor post-partum room, scared out of my hospital gown - and said: "The twins will be fine. But Eliot will need more time to heal and feed." I would have said, "Done." I would not have hesitated on that deal for a second.
Our NICU story, though scary, is actually a good one. That's what we choose to remember.
Tuesday, March 25, 2008
results
Unfortunately, the results from yesterday's swallow study were not good. Because of Elie's paralyzed vocal chord, she is unable to swallow without aspiration. This means she will be unable to take food through her mouth, and she will come home on a feeding tube. We do not know how long she will be on a tube, or if her vocal chord will ever heal. It is nauseating to know that a mistake from a routine PDA surgery has caused Eliot so much pain.
We have seen miracles happen, however, and we are praying for another to bless this baby.
We have seen miracles happen, however, and we are praying for another to bless this baby.
Friday, March 21, 2008
blog baby
Wow. There is certainly a lot less time for blogging with one baby at home . . .
Owen was totally different as soon as we walked in the door. He was more alert and interested. He cried and fussed less, ate better, and seemed happier. It's been amazing.
What has been less than amazing is carting his big diaper butt back and forth to the hospital to see his sister every day. :) But, I can't miss out on my Elie time, so we travel without complaint.
Eliot got moved up from the 2nd floor on Wednesday night. When we went to visit her new room on the 7th floor, I saw a different baby. I even checked her monitor to see if it was plugged in; she seemed too stable to be mine. She is still off of oxygen, and handling it beautifully.
Her inability to take bottles is the reason she's still in the hospital, as she is still on continuous tube feedings. We are unsure if this is because of her paralyzed vocal chord, acid reflux, or oral aversion. A swallow study, scheduled for Monday, should provide a lot of answers (give her a bottle, and x-ray as she swallows). I pray this test goes well, and she can start feeding again next week. We need to get her on the road toward home.
Until then, we will continue to enjoy the little one that we have here. This is a picture of my blogging these days . . .
This was right before he spit up on my computer.
Owen was totally different as soon as we walked in the door. He was more alert and interested. He cried and fussed less, ate better, and seemed happier. It's been amazing.
What has been less than amazing is carting his big diaper butt back and forth to the hospital to see his sister every day. :) But, I can't miss out on my Elie time, so we travel without complaint.
Eliot got moved up from the 2nd floor on Wednesday night. When we went to visit her new room on the 7th floor, I saw a different baby. I even checked her monitor to see if it was plugged in; she seemed too stable to be mine. She is still off of oxygen, and handling it beautifully.
Her inability to take bottles is the reason she's still in the hospital, as she is still on continuous tube feedings. We are unsure if this is because of her paralyzed vocal chord, acid reflux, or oral aversion. A swallow study, scheduled for Monday, should provide a lot of answers (give her a bottle, and x-ray as she swallows). I pray this test goes well, and she can start feeding again next week. We need to get her on the road toward home.
Until then, we will continue to enjoy the little one that we have here. This is a picture of my blogging these days . . .
This was right before he spit up on my computer.
Wednesday, March 19, 2008
Monday, March 17, 2008
pass
Elie did not test positive for an infection. Awesome news. The doctors were initially worried because her belly got round and distended suddenly, but it turns out she was just full of poop. They gave her a laxative, and they are letting her take her time emptying her intestines. She literally has her own little corner on the 2nd floor where she poops, smiles, passes gas, and smiles some more.
And speaking of passing, the little guy got an A+ on his car seat test (second time's a charm). He's coming home tomorrow! The last thing we have to do is get trained on his home monitor.
The doctors asked if we would sleep better if Owen went home on a monitor to measure his heart rate and oxygen saturation levels.
"Of course," I said.
"No problem. We can set that up. How long do you think you will want it?"
"Ummmm . . . until he's nineteen?"
"No, Ms. Axt. We were thinking just a couple of weeks."
"Riiiiggghhhht."
So, Owen will be home tomorrow night. Home. He will be in this house that we bought with kids in mind. He'll meet his dogs and see his room. I'll change his diapers on the changing pad that I've been staring at for months. I'll feed him when he's hungry, and I'll be there when he cries - every time he cries. I'll hold him and love him and snuggle him for as long as he can take it. Owen is coming home. Pass the tissues, please.
And speaking of passing, the little guy got an A+ on his car seat test (second time's a charm). He's coming home tomorrow! The last thing we have to do is get trained on his home monitor.
The doctors asked if we would sleep better if Owen went home on a monitor to measure his heart rate and oxygen saturation levels.
"Of course," I said.
"No problem. We can set that up. How long do you think you will want it?"
"Ummmm . . . until he's nineteen?"
"No, Ms. Axt. We were thinking just a couple of weeks."
"Riiiiggghhhht."
So, Owen will be home tomorrow night. Home. He will be in this house that we bought with kids in mind. He'll meet his dogs and see his room. I'll change his diapers on the changing pad that I've been staring at for months. I'll feed him when he's hungry, and I'll be there when he cries - every time he cries. I'll hold him and love him and snuggle him for as long as he can take it. Owen is coming home. Pass the tissues, please.
I'm ready mom and dad!
Sunday, March 16, 2008
no surprise
The soap opera continues for Elie Mak. After a few severe apnea episodes, she was rushed down to the 2nd floor today (critical care) with a suspected infection. When we left her bed at 9:30pm, her blood tests and urinalysis had returned negative. They will repeat all tests in twelve hours, so we should have more information in the morning.
As if that wasn't enough, Owen failed his car seat test today. He made it 45 minutes, and then dropped his heart rate. This was his first time sitting in a car seat, and he had a stressful eye exam today, so we weren't totally surprised. We've been staples in the NICU for three months now; nothing surprises us anymore.
As if that wasn't enough, Owen failed his car seat test today. He made it 45 minutes, and then dropped his heart rate. This was his first time sitting in a car seat, and he had a stressful eye exam today, so we weren't totally surprised. We've been staples in the NICU for three months now; nothing surprises us anymore.
makin' his way home
Owen is scheduled to come home on Monday - one day before his due date. I can't believe it.
Here's our discharge list:
circumcision: ouch, but check
eight bottles: yummy check
eye exam: "can't see great, but I'm not even supposed to be born yet" check
hearing exam: Monday morning
one-hour car seat test: today (Mike and I are prepared to hold our breath for the entire hour)
I don't even know how I'm feeling. This whole experience is totally surreal. Most people go to the dry cleaners to pick up their clothes; on Monday morning we will go to the hospital and pick up our kid.
Results of the car seat test will be posted soon. Stay tuned as Owen makes his way home . . .
Here's our discharge list:
circumcision: ouch, but check
eight bottles: yummy check
eye exam: "can't see great, but I'm not even supposed to be born yet" check
hearing exam: Monday morning
one-hour car seat test: today (Mike and I are prepared to hold our breath for the entire hour)
I don't even know how I'm feeling. This whole experience is totally surreal. Most people go to the dry cleaners to pick up their clothes; on Monday morning we will go to the hospital and pick up our kid.
Results of the car seat test will be posted soon. Stay tuned as Owen makes his way home . . .
Wednesday, March 12, 2008
almost
Owen continues to do well with his bottle feedings, and they have increased his volume to 60 cc's (2 oz.) eight times a day. They will be scheduling his circumcision for sometime this week, which is a great sign that he'll be getting discharged soon (well, it's a great sign for us; it sucks for him).
They tried Eliot off of oxygen on Monday, but put her nasal canula back on 24 hours later. She's getting close to not needing her O2's anymore, but she's not there quite yet. She will not attempt to feed for at least two more weeks while they work on getting her acid reflux under control. So, it looks like I will be hauling my big, fat, lucky boy back and forth to the NICU to see his "shit always happens to me" sister. :)
I didn't go to the hospital yesterday because I have a head cold. It was the first time I haven't seen the twins since they were born. I wouldn't be able to stand it if I got them sick, so I stayed home and experienced an uncontrollable nesting instinct that kicked in when they told me Owen would be coming home soon. The nursery is almost complete, laundry is finished, dogs are bathed. When I bring home my baby, and my life changes forever, I'd like it to appear as if I'm together enough to handle it.
They tried Eliot off of oxygen on Monday, but put her nasal canula back on 24 hours later. She's getting close to not needing her O2's anymore, but she's not there quite yet. She will not attempt to feed for at least two more weeks while they work on getting her acid reflux under control. So, it looks like I will be hauling my big, fat, lucky boy back and forth to the NICU to see his "shit always happens to me" sister. :)
I didn't go to the hospital yesterday because I have a head cold. It was the first time I haven't seen the twins since they were born. I wouldn't be able to stand it if I got them sick, so I stayed home and experienced an uncontrollable nesting instinct that kicked in when they told me Owen would be coming home soon. The nursery is almost complete, laundry is finished, dogs are bathed. When I bring home my baby, and my life changes forever, I'd like it to appear as if I'm together enough to handle it.
Monday, March 10, 2008
just one
Different day, different doctor. Different doctor, different perspective. Different perspective, different orders.
Instead of halting bottles on Owen, our new neonatologist added one (the docs rotate all the time). Owen is now on five - six bottles a day and doing great. He's got the routine down: wake up hungry, take bottle, then rest for a couple of hours before the next feeding. He only needs to take eight bottles to get discharged from Northside, which means he's on the fast track toward home. This news, however, is bittersweet.
Eliot is still struggling. Is it me, or is Eliot always getting the bad news? Her voice has been very hoarse for over a month now, but we figured it was due to reflux, intubation, extubation - any number of things. Finally, our doctor scheduled an ENT appointment, and we found out yesterday that her left vocal chord was severely damaged during her PDA ligation (Project Heart Heal). Worst case scenario: she will have a very soft voice, with some hoarseness. That's the worst case - which is good because she will still be able to speak. Best case scenario: the paralysis of the vocal chord is temporary and her right vocal chord, which is moving great, will compensate and give her a stronger voice. This news hit us hard. I mean, really. Give the baby a break.
Her reflux also continues to delay her progress. Now that we know the extent of the injury to her throat, the medical team will be treating her reflux more aggressively to ensure that the acid doesn't irritate an already damaged area. She has not attempted a bottle in over two weeks.
The fact that Owen could be home soon is amazing. But I keep thinking about driving home from the hospital and seeing two car seats - one of which will be empty. How will I ever leave Eliot? My life doesn't work with just one.
Instead of halting bottles on Owen, our new neonatologist added one (the docs rotate all the time). Owen is now on five - six bottles a day and doing great. He's got the routine down: wake up hungry, take bottle, then rest for a couple of hours before the next feeding. He only needs to take eight bottles to get discharged from Northside, which means he's on the fast track toward home. This news, however, is bittersweet.
Eliot is still struggling. Is it me, or is Eliot always getting the bad news? Her voice has been very hoarse for over a month now, but we figured it was due to reflux, intubation, extubation - any number of things. Finally, our doctor scheduled an ENT appointment, and we found out yesterday that her left vocal chord was severely damaged during her PDA ligation (Project Heart Heal). Worst case scenario: she will have a very soft voice, with some hoarseness. That's the worst case - which is good because she will still be able to speak. Best case scenario: the paralysis of the vocal chord is temporary and her right vocal chord, which is moving great, will compensate and give her a stronger voice. This news hit us hard. I mean, really. Give the baby a break.
Her reflux also continues to delay her progress. Now that we know the extent of the injury to her throat, the medical team will be treating her reflux more aggressively to ensure that the acid doesn't irritate an already damaged area. She has not attempted a bottle in over two weeks.
The fact that Owen could be home soon is amazing. But I keep thinking about driving home from the hospital and seeing two car seats - one of which will be empty. How will I ever leave Eliot? My life doesn't work with just one.
Thursday, March 6, 2008
awhile
When we got upgraded to the 7th floor a few weeks ago, it was an awesome feeling. The great thing about the 7th floor is most of the babies are close to going home. The bad thing about the 7th floor is most of the babies are close to going home - except mine.
Every day, another baby is discharged from the NICU, and I have to watch. Another car seat test is passed, another dad comes in smiling, another mom talks about her angst and worry during her NICU days, and how happy she is that they are over. Today, a doctor told a woman that her baby would have to stay in the NICU for three days. She started to cry. Three whole days. Wah. We've been there for 80. (Yes, I count.)
I had never dared to ask about my own children. So, I did it. The unthinkable. I asked the doctor when the ETA might be for the Axt twins . . .
"It's going to be awhile," she said.
AWHILE? What?
"Owen might be ready to go home in 3 - 4 weeks at the earliest, but Eliot will need more time."
Sinkity, sank went the heart, and the hope that the twins would be home in March. The acid reflux is holding both babies back from feeding. Owen couldn't finish four bottles yesterday, and won't be allowed to try for at least one more week. Eliot couldn't even attempt one.
Another month at Hotel Northside. I don't believe it. I don't feel like I have another month in me. Up in the morning, drive to the hospital, stay all day, drive home lonely. It's as if I never gave birth. Mike and I certainly don't feel like parents. We joke that we have "Rent-a-Twins." You can look at the babies, hold the babies, even love the babies, but you can't take the babies with you. No, no. They belong to the hospital.
So, it's going to be "awhile." That's the update. And there's really no need for pep talks at this point. I'm so NOT in the mood for pep talks.
Every day, another baby is discharged from the NICU, and I have to watch. Another car seat test is passed, another dad comes in smiling, another mom talks about her angst and worry during her NICU days, and how happy she is that they are over. Today, a doctor told a woman that her baby would have to stay in the NICU for three days. She started to cry. Three whole days. Wah. We've been there for 80. (Yes, I count.)
I had never dared to ask about my own children. So, I did it. The unthinkable. I asked the doctor when the ETA might be for the Axt twins . . .
"It's going to be awhile," she said.
AWHILE? What?
"Owen might be ready to go home in 3 - 4 weeks at the earliest, but Eliot will need more time."
Sinkity, sank went the heart, and the hope that the twins would be home in March. The acid reflux is holding both babies back from feeding. Owen couldn't finish four bottles yesterday, and won't be allowed to try for at least one more week. Eliot couldn't even attempt one.
Another month at Hotel Northside. I don't believe it. I don't feel like I have another month in me. Up in the morning, drive to the hospital, stay all day, drive home lonely. It's as if I never gave birth. Mike and I certainly don't feel like parents. We joke that we have "Rent-a-Twins." You can look at the babies, hold the babies, even love the babies, but you can't take the babies with you. No, no. They belong to the hospital.
So, it's going to be "awhile." That's the update. And there's really no need for pep talks at this point. I'm so NOT in the mood for pep talks.
Wednesday, March 5, 2008
therapy
We had a good day yesterday. I guess "good" is relative. The twins' acid reflux was not debilitating; that's a good day in my eyes.
Owen finished three bottles yesterday, and he is attempting four today. His reflux still visibly bothers him, but he is able to work through the burn and eat. Total G.I. O material.
Eliot is still struggling with her reflux, but her respiratory issues have gotten better in the past couple of days. She is now at .5 on the nasal canula - down from 1. The next step for her will be room air. That baby - with no oxygen tube around her face - will be a joyful sight. She will attempt a bottle today from the physical therapist, and will hopefully be able to start moving toward a more normal feeding schedule - instead of 24 / 7. I pray her bottle goes well. Yesterday, the physical therapist told me that she is showing signs of oral aversion - gagging when a pacifier comes near her - and she may need extra therapy to work up to bottle feedings again.
"Great," I said. "Well, I have an extreme aversion to the NICU. Do you have some therapy for that?
Owen finished three bottles yesterday, and he is attempting four today. His reflux still visibly bothers him, but he is able to work through the burn and eat. Total G.I. O material.
Eliot is still struggling with her reflux, but her respiratory issues have gotten better in the past couple of days. She is now at .5 on the nasal canula - down from 1. The next step for her will be room air. That baby - with no oxygen tube around her face - will be a joyful sight. She will attempt a bottle today from the physical therapist, and will hopefully be able to start moving toward a more normal feeding schedule - instead of 24 / 7. I pray her bottle goes well. Yesterday, the physical therapist told me that she is showing signs of oral aversion - gagging when a pacifier comes near her - and she may need extra therapy to work up to bottle feedings again.
"Great," I said. "Well, I have an extreme aversion to the NICU. Do you have some therapy for that?
Monday, March 3, 2008
something right
I can't help but think that somewhere along the way I must have done something right to have Michael, Owen and Eliot in my life.
Sunday, March 2, 2008
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