Owen - not so much.
Tuesday, April 29, 2008
Monday, April 28, 2008
march for babies!
Mike and I walked in the March of Dimes, March for Babies! walk on Saturday. We left the twins at "Granddaddy Daycare" and proudly walked five miles with thousands of other Atlantans.
We want to thank all of our friends and family who donated money in honor of Owen and Eliot. The March of Dimes does some extraordinary work for premature babies, and we were very proud to support their efforts.
We want to thank all of our friends and family who donated money in honor of Owen and Eliot. The March of Dimes does some extraordinary work for premature babies, and we were very proud to support their efforts.
Sunday, April 20, 2008
the return of the bottle
Eliot started back on bottles this weekend. It was an amazing sight. We are trying to work her up to eight bottles a day by giving her four small bottles during the day, and letting her rest with continuous tube feeds at night. She began her bottle endurance training on Saturday, and had a stellar first performance. No surprise, of course.
Thursday, April 17, 2008
finally
I know, I know. Get two babies, and neglect your blog. How rude.
Life has changed for sure. Mike took a one-week paternity leave while we worked to regain a sense of order and sanity in our lives. Yea right, not until the twins go to college, but it was fun for both of us to be home with Owen and Eliot nonetheless.
Both babies are doing great. Owen continues to eat and sleep well. He is now over ten pounds of adorableness.
Eliot had her second swallow study on Tuesday and PASSED with an A+. We meet with her G.I. doctor tomorrow to talk about getting her back on bottles and off of her feeding tube. No one knew how long it would take Eliot to learn how to swallow correctly with her paralyzed vocal chord - "could take a couple of weeks, could take a couple of years." But once she got home and saw Owen showing off his bottle abilities, she got it together in a hurry. A little competition never hurt anyone.
It's sort of weird to wake up now and not go to Northside. There was a rhythm there that I had gotten used to: down a few days, up a few days, give some advice to someone, get some advice from someone else. I'll never forget the quintessential saying that people always repeated when times were tough. "God only gives you what you can handle." Every time I heard it, I would think - what a load of crap. I can't handle any of this. But looking back on our NICU experience, I think Mike and I did okay. Undoubtedly, we are better people because it.
This past weekend, the six of us went for a walk - Mike, Owen, Eliot, Jackson (big dog), China (little dog) and me. We had been looking forward to taking the twins for a ride in their stroller since we got pregnant last June. I was walking the dogs behind Mike and the babies, and thinking about the last few months - how hard I had prayed for the day when we could finally start our life as a family. All that hoping, wishing, anticipating - and finally, it's here.
Life has changed for sure. Mike took a one-week paternity leave while we worked to regain a sense of order and sanity in our lives. Yea right, not until the twins go to college, but it was fun for both of us to be home with Owen and Eliot nonetheless.
Both babies are doing great. Owen continues to eat and sleep well. He is now over ten pounds of adorableness.
Eliot had her second swallow study on Tuesday and PASSED with an A+. We meet with her G.I. doctor tomorrow to talk about getting her back on bottles and off of her feeding tube. No one knew how long it would take Eliot to learn how to swallow correctly with her paralyzed vocal chord - "could take a couple of weeks, could take a couple of years." But once she got home and saw Owen showing off his bottle abilities, she got it together in a hurry. A little competition never hurt anyone.
It's sort of weird to wake up now and not go to Northside. There was a rhythm there that I had gotten used to: down a few days, up a few days, give some advice to someone, get some advice from someone else. I'll never forget the quintessential saying that people always repeated when times were tough. "God only gives you what you can handle." Every time I heard it, I would think - what a load of crap. I can't handle any of this. But looking back on our NICU experience, I think Mike and I did okay. Undoubtedly, we are better people because it.
This past weekend, the six of us went for a walk - Mike, Owen, Eliot, Jackson (big dog), China (little dog) and me. We had been looking forward to taking the twins for a ride in their stroller since we got pregnant last June. I was walking the dogs behind Mike and the babies, and thinking about the last few months - how hard I had prayed for the day when we could finally start our life as a family. All that hoping, wishing, anticipating - and finally, it's here.
Thursday, April 10, 2008
homecoming queen
Eliot came home on Tuesday. My best friend said it best: "What a great day. They write songs about days like this."
Songs like this, perhaps?
Songs like this, perhaps?
Tuesday, April 8, 2008
112
For the past 112 nights, I have unwillingly said goodbye to my daughter and left her at the hospital. But, our Northside NICU journey is finally coming to a close, and tonight was the last goodbye. Tomorrow, I'll just kiss her good night.
Eliot is coming home.
Eliot is coming home.
Monday, April 7, 2008
so close
Since Eliot will be continuing her feeds through an NG tube (naso-gastric), Mike and I have to learn how to place one. I volunteered to stick a tube down Mike's nose and into his stomach, but it turns out we have to practice on Eliot.
I had my first attempt yesterday at an NG tube placement, and it was no problem. When I finished, I swear Elie looked at me as if to say, "Great job, mom. Now disconnect me from all these other wires, and let's get out of here."
If only.
In addition to mommy's day of playing nurse, sweet Elie passed her car seat test! We have a few minor things left on our discharge list, but her homecoming is close. I can feel it.
I had my first attempt yesterday at an NG tube placement, and it was no problem. When I finished, I swear Elie looked at me as if to say, "Great job, mom. Now disconnect me from all these other wires, and let's get out of here."
If only.
In addition to mommy's day of playing nurse, sweet Elie passed her car seat test! We have a few minor things left on our discharge list, but her homecoming is close. I can feel it.
Sunday, April 6, 2008
Friday, April 4, 2008
miracle
Yesterday, a friend of mine said, "I read your blog every day. You should be a writer!"
Riiighhht. Any chump could be a writer with this kind of material.
Eliot's surgery was scheduled for Friday. Literally, the O.R. was booked. We were proceeding with a a g-j tube - a catheter surgically placed into her intestine to help a severe case of acid reflux and her inability to swallow.
Until.
The G.I. doctor who was going to perform the procedure requested a 24-hour pH probe study to measure the severity of her reflux and what he would be dealing with on the operating table. Apparently, pH probe studies are rarely done in the NICU anymore. They started hers on Wednesday afternoon.
A probe that measures the acidity in her esophagus was put down her throat, and she was given a cocktail of unfiltered apple juice mixed with rice cereal (instead of her usual breast milk).
Apple juice has a pH of four. The esophagus has a pH reading of six to seven. The purpose of the probe is to detect the pH in the esophagus. Any reading of four or less indicates that there is apple juice and/or stomach acid in the esophagus - thus indicating reflux.
On Thursday morning, after only 19 hours, the doctor ordered the results. I waited . . .
"Guess what?" she said. "Eliot's reflux isn't bad at all. There is really no reason to do a g-j tube."
We were all stunned. They had planned to transfer her from Northside to Scottish Rite tonight. Tonight. I couldn't believe it. I couldn't make this up if I tried.
While this news doesn't change the fact that Eliot's paralyzed vocal cord still affects her swallow, it does keep her away from another surgery for the time being, and it doesn't add "severe acid reflux" to her super-thick medical chart. She will continue to feed through the tube in her nose until her next swallow study - approximately 3 weeks from now. We will pray that in the next few weeks she will grow and become coordinated enough to start taking bottles.
It's been a rough couple of weeks with Owen at home and Eliot still in the hospital. I'm so worn out from traveling back and forth, so when I got home tonight, I poured a bottle of breast milk for Owen and a glass of flat ginger ale for me, and we sat down, relaxed, and had ourselves a little toast - a toast to miracles, a toast to Eliot.
Riiighhht. Any chump could be a writer with this kind of material.
Eliot's surgery was scheduled for Friday. Literally, the O.R. was booked. We were proceeding with a a g-j tube - a catheter surgically placed into her intestine to help a severe case of acid reflux and her inability to swallow.
Until.
The G.I. doctor who was going to perform the procedure requested a 24-hour pH probe study to measure the severity of her reflux and what he would be dealing with on the operating table. Apparently, pH probe studies are rarely done in the NICU anymore. They started hers on Wednesday afternoon.
A probe that measures the acidity in her esophagus was put down her throat, and she was given a cocktail of unfiltered apple juice mixed with rice cereal (instead of her usual breast milk).
Apple juice has a pH of four. The esophagus has a pH reading of six to seven. The purpose of the probe is to detect the pH in the esophagus. Any reading of four or less indicates that there is apple juice and/or stomach acid in the esophagus - thus indicating reflux.
On Thursday morning, after only 19 hours, the doctor ordered the results. I waited . . .
"Guess what?" she said. "Eliot's reflux isn't bad at all. There is really no reason to do a g-j tube."
We were all stunned. They had planned to transfer her from Northside to Scottish Rite tonight. Tonight. I couldn't believe it. I couldn't make this up if I tried.
While this news doesn't change the fact that Eliot's paralyzed vocal cord still affects her swallow, it does keep her away from another surgery for the time being, and it doesn't add "severe acid reflux" to her super-thick medical chart. She will continue to feed through the tube in her nose until her next swallow study - approximately 3 weeks from now. We will pray that in the next few weeks she will grow and become coordinated enough to start taking bottles.
It's been a rough couple of weeks with Owen at home and Eliot still in the hospital. I'm so worn out from traveling back and forth, so when I got home tonight, I poured a bottle of breast milk for Owen and a glass of flat ginger ale for me, and we sat down, relaxed, and had ourselves a little toast - a toast to miracles, a toast to Eliot.
Tuesday, April 1, 2008
boppy doggy
China said she read the directions for the Boppy. She said this is how it works.
I don't know. I'm not convinced quite yet.
I don't know. I'm not convinced quite yet.
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.
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