Mike's sister Amaryah took these photos when I was 36 weeks. {She also gave me the purple dress I'm wearing--yay for a SIL with both exceptional fashion sense and photography know-how!}
Wednesday, June 27, 2012
Sunday, June 24, 2012
{ Humbled }
"The eternal God is your refuge, and underneath are the everlasting arms."
~ Deuteronomy 33:27a
Steadfast love abounds.
I'm 37 or 38 weeks--depends on whether you ask me or the neonatologist--which means Lainie has the all-clear to be born if she likes; at this point, she's considered full-term.
We are part of an amazing church family spread across four states, with 11 church "campuses" in Washington alone. Last Sunday, Father's Day, the pastor at our campus asked Mike if we'd come on stage before the service and explain what's going on with Lainie so our church can pray for us. There are between 600 and 700 people on an average Sunday just at our "campus," so even with Mike's stellar social skills, we worship with a lot of brothers and sisters in Christ that we don't know personally. It was amazing. People I'd never met came up to me afterward and said they'd be praying for us. And we keep hearing of other people who are praying for Lainie, people we don't even know: the church in Oregon where my childhood pastor and his wife {now retired} attend. My mom's friend's prayer chain in Montana. People Mike knows through his business.
One thing we have been hoping and praying for is somewhere close to Children's for Mike and I to stay while Lainie is hospitalized. We only live 22 miles away, but in traffic it can easily take over an hour and a half to drive that distance. We're too close to qualify for the Ronald McDonald House. And Mike's work is pretty much in the opposite direction. I've been trying to psych myself up for sleepless nights on the floor of her hospital room, telling myself that I can handle a sick newborn and no home base and no sleep for a few weeks to months. I have to. {How Mike will be able to handle the same and continue working, I do not know...but I believe he can do it. He's an incredible man.} For several weeks we have been trying to find closer lodging through contacts at the church campus closer to Children's, but with no luck.
Last week, after our church prayed for us, that changed in a big way.
By Wednesday, Mike was in contact with a family that goes to the church campus near Children's. Their oldest child was born prematurely and spent several weeks in the NICU; they have a huge heart for families in situations like ours. They also live 10 minutes from Children's and have a spare bedroom they are letting us use for as long as we need it! But wait--here's the crazy part: It's Wednesday night. They are leaving on a two-week vacation on Friday morning, and Lainie could easily be born while they are away. Mike and the dad of this family both have to work all day Thursday, so the wife and I arrange for me to come to their home to meet her and get keys.
These people have never met us before.
They don't know us from Adam.
They are about to go on vacation, and they give their house keys to perfect strangers and tell us to make ourselves at home, use the shower and laundry, here's how to run the TV, there's a BBQ grill on the deck you can use anytime, come and go whenever you need and don't feel like you have to check in with us--we just want to help you.
That's all Jesus. That's not something you do, not in this day and age, not in Seattle. I'm speechless and completely humbled and grateful and thankful to this family. They're letting us into their home and their lives with open hands, no expectations, truly getting nothing out of this in return. All because they love Jesus, we're part of the same crazy-huge church family, and when they heard about our need, they stepped up. It's crazy. Just crazy. I can't wrap my head around it. And I can't express what a relief it is to know that if we need a couple hours' uninterrupted sleep, we don't have to check into a hotel or drive hours away from Baby Girl. We can zip literally 10 minutes up the street...and if Lainie needs us, we're only 10 minutes away.
That's God's grace. That's steadfast love. That's everlasting arms, our refuge just when we need it, at just the right time: a place to stay, provided the day before Lainie's considered full-term.
Last week, after our church prayed for us, that changed in a big way.
By Wednesday, Mike was in contact with a family that goes to the church campus near Children's. Their oldest child was born prematurely and spent several weeks in the NICU; they have a huge heart for families in situations like ours. They also live 10 minutes from Children's and have a spare bedroom they are letting us use for as long as we need it! But wait--here's the crazy part: It's Wednesday night. They are leaving on a two-week vacation on Friday morning, and Lainie could easily be born while they are away. Mike and the dad of this family both have to work all day Thursday, so the wife and I arrange for me to come to their home to meet her and get keys.
These people have never met us before.
They don't know us from Adam.
They are about to go on vacation, and they give their house keys to perfect strangers and tell us to make ourselves at home, use the shower and laundry, here's how to run the TV, there's a BBQ grill on the deck you can use anytime, come and go whenever you need and don't feel like you have to check in with us--we just want to help you.
That's all Jesus. That's not something you do, not in this day and age, not in Seattle. I'm speechless and completely humbled and grateful and thankful to this family. They're letting us into their home and their lives with open hands, no expectations, truly getting nothing out of this in return. All because they love Jesus, we're part of the same crazy-huge church family, and when they heard about our need, they stepped up. It's crazy. Just crazy. I can't wrap my head around it. And I can't express what a relief it is to know that if we need a couple hours' uninterrupted sleep, we don't have to check into a hotel or drive hours away from Baby Girl. We can zip literally 10 minutes up the street...and if Lainie needs us, we're only 10 minutes away.
That's God's grace. That's steadfast love. That's everlasting arms, our refuge just when we need it, at just the right time: a place to stay, provided the day before Lainie's considered full-term.
Thursday, June 14, 2012
{ Becoming Hospital Pros }
Dear Lainie-bug,
You and I are becoming quite proficient at ultrasounds, consultation rooms, and waiting for doctors. Quite proficient. Yesterday we spent almost five hours at the university hospital getting a nonstress test, another complete fetal ultrasound {your fifth!!}, consulting with a neonatologist and an OB/GYN, and getting a tour of the labor & delivery unit. Daddy joined us partway through the ultrasound, since he had some important meetings at work in the morning.
You passed the nonstress test with flying colors. They wanted to see your heart rate increase by at least 20 beats per minute, for 15 seconds, two different times during the 20-minute test--and you had increases of at least 30 beats per minute, for over 20 seconds, at least six different times--I lost count! Way to go!
Your ultrasound looked really good, too. Amniotic fluid levels are normal--that's one of the main ways they gauge whether or not you're doing well inside me. I know that ultrasound assessments of fetal size are notoriously inaccurate, but you measure on the petite side--estimated at 5 pounds, 10 ounces. I need to fatten you up! {Convenient...there are brownies and caramel ice cream in the kitchen.} The only thing that was different at this ultrasound was that the doctors are now not completely sure that you have a diaphragmatic hernia. There is now a question of whether or not it may be a diaphragmatic eventration. Here's the difference: With a hernia, there is a hole in the diaphragm, and abdominal organs move up through the hole into the chest. With an eventration, part of the diaphragm is thin and abnormal and forms a pouch or pocket that pushes up into the chest. So the main difference is that in an eventration, there is still tissue separating the abdominal and chest cavities, whereas in a hernia abdominal organs are pushed up through a small hole. Either way, the lungs are still compressed and don't develop normally, because the abdominal organs {whether or not they are contained within a pocket of diaphragmatic tissue} are taking up chest space. The doctor said that an eventration is slightly less serious and has slightly better outcomes, but it's still the same basic problem. You will still need surgery and special care after your birth. Once you're born, they will be able to image your chest more precisely to determine whether it's a hernia or an eventration.
I really like the NICU doctor who talked to us. He reminds me of a skinny old grandpa; he's been a doctor for over 40 years! When we asked if we can hold you after you're born, he basically said, "Be assertive! Tell them you've been told it's a small hernia and that you can hold her. Don't ask if you can hold her. Tell them you've been told she may not need aggressive respiratory support and that you want to hold her." That made us smile and feel better!
We also got a little tour of the labor and delivery unit. I'll be honest, Lainie Rae: It's not my first choice of where I'd like to give birth. I'm very glad that you will be so well taken care of, and that whatever may be needed to give you a safe, healthy start to life outside the womb is available there. But it's not the nicest L&D I've seen...and I've seen a few!
And I must say, you are a funny girl. You are almost always pretty mellow, not moving much unless I have been lying very still for awhile. At about 4am yesterday morning, you spent a good half hour thumping and tapping every few seconds. It was very methodical: Right elbow...two seconds...left foot...two seconds...right fist...two seconds...right foot...two seconds. On and on and on! You've never done that during the night before...maybe you were excited about the cheese stick I had just eaten. {Yes, sometimes I wake up hungry in the night.} But a few hours later, as you have with every single ultrasound in the past six weeks, you stubbornly refused to move to give them a better view of your chest. And after we left the hospital, you stretched and thumped and swirled your legs regularly for the rest of the day. Maybe you don't like being the center of attention!
Well, Little Miss, we have mounds of laundry and errands to take care of today, so we'd better get busy!
Love you always,
Mama
You and I are becoming quite proficient at ultrasounds, consultation rooms, and waiting for doctors. Quite proficient. Yesterday we spent almost five hours at the university hospital getting a nonstress test, another complete fetal ultrasound {your fifth!!}, consulting with a neonatologist and an OB/GYN, and getting a tour of the labor & delivery unit. Daddy joined us partway through the ultrasound, since he had some important meetings at work in the morning.
You passed the nonstress test with flying colors. They wanted to see your heart rate increase by at least 20 beats per minute, for 15 seconds, two different times during the 20-minute test--and you had increases of at least 30 beats per minute, for over 20 seconds, at least six different times--I lost count! Way to go!
Your ultrasound looked really good, too. Amniotic fluid levels are normal--that's one of the main ways they gauge whether or not you're doing well inside me. I know that ultrasound assessments of fetal size are notoriously inaccurate, but you measure on the petite side--estimated at 5 pounds, 10 ounces. I need to fatten you up! {Convenient...there are brownies and caramel ice cream in the kitchen.} The only thing that was different at this ultrasound was that the doctors are now not completely sure that you have a diaphragmatic hernia. There is now a question of whether or not it may be a diaphragmatic eventration. Here's the difference: With a hernia, there is a hole in the diaphragm, and abdominal organs move up through the hole into the chest. With an eventration, part of the diaphragm is thin and abnormal and forms a pouch or pocket that pushes up into the chest. So the main difference is that in an eventration, there is still tissue separating the abdominal and chest cavities, whereas in a hernia abdominal organs are pushed up through a small hole. Either way, the lungs are still compressed and don't develop normally, because the abdominal organs {whether or not they are contained within a pocket of diaphragmatic tissue} are taking up chest space. The doctor said that an eventration is slightly less serious and has slightly better outcomes, but it's still the same basic problem. You will still need surgery and special care after your birth. Once you're born, they will be able to image your chest more precisely to determine whether it's a hernia or an eventration.
I really like the NICU doctor who talked to us. He reminds me of a skinny old grandpa; he's been a doctor for over 40 years! When we asked if we can hold you after you're born, he basically said, "Be assertive! Tell them you've been told it's a small hernia and that you can hold her. Don't ask if you can hold her. Tell them you've been told she may not need aggressive respiratory support and that you want to hold her." That made us smile and feel better!
We also got a little tour of the labor and delivery unit. I'll be honest, Lainie Rae: It's not my first choice of where I'd like to give birth. I'm very glad that you will be so well taken care of, and that whatever may be needed to give you a safe, healthy start to life outside the womb is available there. But it's not the nicest L&D I've seen...and I've seen a few!
And I must say, you are a funny girl. You are almost always pretty mellow, not moving much unless I have been lying very still for awhile. At about 4am yesterday morning, you spent a good half hour thumping and tapping every few seconds. It was very methodical: Right elbow...two seconds...left foot...two seconds...right fist...two seconds...right foot...two seconds. On and on and on! You've never done that during the night before...maybe you were excited about the cheese stick I had just eaten. {Yes, sometimes I wake up hungry in the night.} But a few hours later, as you have with every single ultrasound in the past six weeks, you stubbornly refused to move to give them a better view of your chest. And after we left the hospital, you stretched and thumped and swirled your legs regularly for the rest of the day. Maybe you don't like being the center of attention!
Well, Little Miss, we have mounds of laundry and errands to take care of today, so we'd better get busy!
Love you always,
Mama
Tuesday, June 12, 2012
{ Babymoon, Part II }
It felt so luxurious to sleep in. So indulgent. So...almost naughty. But blissful!!
And we don't even have a baby yet...how will I handle the sleep-deprived-ness of a newborn?
Cooking big breakfasts. Reading the Bible on the deck. Watching the ferries come and go. Nowhere to go, nothing to do at any particular time. In spite of our severe lack of practice in the art of relaxing, I think we did a pretty good job.
When the tide was out, we walked down the beach. I found some awesome, huge shells that are now gracing our mantle.
:: That's Seattle, way over yonder! ::
In the afternoon, we went to the Point Robinson Lighthouse. It looks very similar to the Mukilteo Lighthouse...but shhhh, I think the one in Mukilteo is nicer!
There are two houses on the premises--both keepers' quarters--that can be rented year-round. Doesn't that sound like a fun family vacation?
We found a swing in a corner of grass between the keepers' quarters and the wilderness, and spent an hour or two reading and swinging and hoping the clouds over Mt. Rainier would lift.
They didn't.
On Sunday, we went to the Vashon Island Coffee Roasterie, where Seattle's Best Coffee got its start. It was a cool old building and we enjoyed browsing through the coffee memorabilia and the natural foods market that shares the space.
:: shelves upon shelves of herbs, many of which we'd never heard of ::
As I look back over these photos, I realize we didn't take a whole lot of pictures...which is nice. A change of pace for us. We enjoyed just hanging out together. No agenda. No alarms. No schedule. No plans. We've never done that, to this degree, before. It was great.
And can I just say that, for a couple who has had no TV for almost three years and just watches Hulu and movies on a laptop, the fact that the apartment had a flatscreen TV and streaming Netflix literally made us giddy! We are both adamantly anti-TV-in-the-bedroom, but it was so much fun to snuggle up next to Mike and watch "Dirty Jobs" {I love that show!} and "Burn Notice" {one of Mike's favorites}. Seriously, the best.
Thank you, Lord, for a wonderful weekend with my husband.
Sunday, June 10, 2012
{ Babymoon ~ Part I }
On the last weekend in May, Mike and I took a Friday-Monday getaway to Vashon Island. Mike is always a very hard worker--I refrain from using the term "workaholic," but those of you who are one {or are married to one} know what I mean. ;-) I really wanted us to take a little babymoon more for his sake than my own; it's so hard to unplug from life and reconnect with each other when you're at home. With the added stress of Lainie's diagnosis, I am so glad that we had this little retreat.
We have unwittingly established a tradition of going to an island to celebrate our anniversary: Oahu {honeymoon}, Lopez Island {first anniversary}, Kauai {second anniversary}. Apparently we really enjoy islands. Since we'll almost certainly spend this anniversary at Children's Hospital--and because long car rides are not my cup of tea at this point in pregnancy--we opted for something a little closer to home. If you hit the ferry line right, it's hard to believe that somewhere so rural and pastoral and that requires a ferry ride is so close to home--our return trip {including a short ferry line wait} was one hour and fifteen minutes!
The beginning of ferry hair... ...and its full, glorious state.
:: the Olympic Mountains were in their full glory ::
:: a beautiful day to be sailing! ::
:: approaching the dock ::
We stayed in a studio apartment that was literally on the waterfront and a couple hundred feet from the ferry dock. It was the perfect little nest for a couple. Falling asleep with the windows open, hearing the water lap on the shore, was so lovely--that's one of Mike's and my favorite memories about Hawaii.
Here's a photo tour:
:: bathroom entry...a little more Buddhist than we liked, but oh well! ::
Let's step out onto the deck... ...ferry dock to the left...
...homeowner's yard and beach access to the right.
:: better look at the yard/beach--the tide was pretty high in this photo ::
:: Mr. & Mrs. Mike ::
After a delicious dinner that evening at an Indian restaurant, we went on an exploratory jaunt down the island. It's only 13 miles long, and it's an island--how lost can you get? We stumbled across the tiny hamlet of Dockton just as the sunset ended.
Back at home, watching ferries in the dusk.
Next up: Babymoon, Part Deux!
Tuesday, June 5, 2012
{ Echo, Ultrasound, Consults - Oh My! }
Our five-hour stretch of appointments at Children's was last Tuesday. I wish there was a spectacular reason for why I've taken so long to write about it; there isn't. I just haven't wanted to. Even though Elaina's hernia is mild {we're told}, it's not something you can explain or update in an easy, 30-second sound byte. And I think I'm indulging in just a wee bit of avoidance: I didn't even look at all the handouts they gave us until last night. After 10pm.
First of all, every single doctor was very, very positive about Elaina's current health and the probability of a really good outcome. Praise the Lord!! First we had a fetal echo, which was fun {for me} because I'd heard a lot of good things about the tech who did the test--she frequently teaches an ultrasound class at the university where I got my degree, and we know a lot of the same people. The second awesome thing was that the cardiologist who read the echo and consulted with us, Dr. Lewin, is someone I also know professionally, both from my internship and because he read a lot of the pediatric echoes we did at my old job. He is, hands down, my favorite pediatric cardiologist--there is no one I'd rather have assessing Lainie's heart. It was so sweet and unexpected of Jesus to give us a consult with Dr. Lewin!
Lainie's heart is shifted a little to the right, which is expected when there is a diaphragmatic hernia on the left. But it's not shifted much, and will probably move back on its own after the surgery. Even if it doesn't, that's not a concern at all; it will still function perfectly normally. The blood pressure in Lainie's left lung is elevated, which {again} is normal for hernia babies: There are more organs in the left side of her chest, so the pressure there is elevated, period. They will continue to monitor this before and after her birth...after surgery her left-sided pressures should gradually return to normal. There are lots of echoes in her future. Other than that, her cardiovascular system is A-OK.
Next was the fetal ultrasound, followed by consultations with a social worker, a neonatologist, and the chief of pediatric surgery. In summary, aside from the hernia, Lainie-bug is perfectly normal. The neonatologist stressed that she is doing absolutely great and, had we not "just happened" to have a late-pregnancy ultrasound, Lainie could have been safely born at any hospital...if for some crazy reason we don't make it to the university hospital and she is born elsewhere, they will be able to take care of her just fine 'til she's transported to Children's. The surgeon went even further: He said he has a feeling that if we hadn't found the hernia, Elaina is "one of those babies who might have some trouble feeding or breathing the first day or two, so they decide to do a chest x-ray, and then say, 'Huh. There's something in her chest that shouldn't be there. Better get that checked out.'"
At this point, this is what it sounds like the basic game plan will be--assuming that Elaina continues to do just fine in utero: She can be born...ahem...without surgery...in fact, they strongly prefer not to do a C-section, unless of course she gets much sicker between now and birth, or is in distress during labor. Most likely she will be intubated {breathing tube in her lungs} right away, unless by an act of God she comes out screaming, with oxygen saturations in the 90's, and clearly does not need respiratory assistance. {That is what I'm praying for!!} They will put a tube into her stomach to deflate it and keep it from filling with air {since it's pinched through a little hole in her diaphragm}. If she's doing well, we may be able to hold her. She will be in the NICU at the university hospital until she's stable enough to transfer to Children's, which is only a mile down the street. Of course, all of this is assuming there are no complications.
If I'm doing well--no C-section, no drugs, able to walk, etc.--I can be discharged as soon as six to eight hours after birth to join Lainie at Children's. The surgery will most likely take place when she is two to seven days old. Barring unforeseen circumstances, the operation takes about two hours, and the surgeon thinks the hole is small enough that they can stitch it shut, rather than using a patch. Lainie may be a candidate for a relatively new technique, where they operate sort of laparoscopically via cameras and three tiny holes in her side and back. {The main "advantage" would be cosmetic: just three tiny holes, rather than a scar on her chest/abdomen.} Regardless of which method they use, the success rate of the surgery in isolated cases {meaning when a diaphragmatic hernia is the baby's only problem} is 80-90%. Afterward, it generally takes a few days for the GI tract to start functioning normally--it's "stunned" by the surgery and doesn't start squeezing and moving things along right away. She will continue to get all her nutrition by IV {they call it TPN: Total Parenteral Nutrition} 'til things are working, and then they will start her on oral nourishment. Suffice it to say I will probably be an expert at pumping by that point!
Of course, there are still mountains of unknowns that simply can't be predicted 'til we are there. How much difficulty will she have breathing after the surgery? How long will she be intubated? How long will she be in the NICU? How much trouble will she have learning how to take oral feedings? {There are often significant feeding problems because the babies have never nursed or taken anything in by mouth, and now they are a week or more old.} Will she have reflux? Long-term feeding problems? How long will she need oxygen? Will she need a feeding tube?
All the doctors and staff were so incredibly helpful, even though all our conversations were peppered with caveats about "we won't know till she's here" and "assuming things don't change" and "if she continues to do as well as she is now." Nonetheless, it is pretty incredible that this is the smallest diaphragmatic hernia the neonatologist has ever seen...and that the surgeon's reaction when he saw the ultrasound images of the hernia was, "That's it? That's all I have to fix?"
The only thing that gave us pause is that the neonatologist wants to induce at 39 weeks. Apparently there's an increased risk of stillbirth when a baby has any type of congenital anomaly, so they don't like to let these babies go to term. Of course we didn't think to ask how much the risk increases, but that is on our list of questions for next week! I am really not a fan of induction, especially because this doctor is going with a due date five days earlier than the midwife...and without going into detail, I'm quite sure the later due date is more accurate. So, unless I can convince the neonatologist of the later due date, we are going to have to start thinking about induction a full 12 days before I think I'm actually due {due date moved up five days, then take away seven days to get to 39 weeks}. Distressing. Obviously we don't want to put Lainie at risk, but if she is still doing fine, we also don't want to take on unnecessary risk by trying to force labor when my body and baby aren't ready. Thankfully the doctor said that, if Lainie is doing good inside me {as evidenced by a nonstress test and/or ultrasound}, she is willing to give us a few days and "readdress the issue."
We have another ultrasound, neonatology and OB consultations, and a tour of the labor and delivery unit scheduled for next week at the university hospital. Since I will be about 36 weeks {depending on who you talk to}, I think they will have me start coming in weekly after that for nonstress tests and/or ultrasounds 'til Lainie is born.
Here are some specific ways you can pray for us:
First of all, every single doctor was very, very positive about Elaina's current health and the probability of a really good outcome. Praise the Lord!! First we had a fetal echo, which was fun {for me} because I'd heard a lot of good things about the tech who did the test--she frequently teaches an ultrasound class at the university where I got my degree, and we know a lot of the same people. The second awesome thing was that the cardiologist who read the echo and consulted with us, Dr. Lewin, is someone I also know professionally, both from my internship and because he read a lot of the pediatric echoes we did at my old job. He is, hands down, my favorite pediatric cardiologist--there is no one I'd rather have assessing Lainie's heart. It was so sweet and unexpected of Jesus to give us a consult with Dr. Lewin!
Lainie's heart is shifted a little to the right, which is expected when there is a diaphragmatic hernia on the left. But it's not shifted much, and will probably move back on its own after the surgery. Even if it doesn't, that's not a concern at all; it will still function perfectly normally. The blood pressure in Lainie's left lung is elevated, which {again} is normal for hernia babies: There are more organs in the left side of her chest, so the pressure there is elevated, period. They will continue to monitor this before and after her birth...after surgery her left-sided pressures should gradually return to normal. There are lots of echoes in her future. Other than that, her cardiovascular system is A-OK.
Next was the fetal ultrasound, followed by consultations with a social worker, a neonatologist, and the chief of pediatric surgery. In summary, aside from the hernia, Lainie-bug is perfectly normal. The neonatologist stressed that she is doing absolutely great and, had we not "just happened" to have a late-pregnancy ultrasound, Lainie could have been safely born at any hospital...if for some crazy reason we don't make it to the university hospital and she is born elsewhere, they will be able to take care of her just fine 'til she's transported to Children's. The surgeon went even further: He said he has a feeling that if we hadn't found the hernia, Elaina is "one of those babies who might have some trouble feeding or breathing the first day or two, so they decide to do a chest x-ray, and then say, 'Huh. There's something in her chest that shouldn't be there. Better get that checked out.'"
At this point, this is what it sounds like the basic game plan will be--assuming that Elaina continues to do just fine in utero: She can be born...ahem...without surgery...in fact, they strongly prefer not to do a C-section, unless of course she gets much sicker between now and birth, or is in distress during labor. Most likely she will be intubated {breathing tube in her lungs} right away, unless by an act of God she comes out screaming, with oxygen saturations in the 90's, and clearly does not need respiratory assistance. {That is what I'm praying for!!} They will put a tube into her stomach to deflate it and keep it from filling with air {since it's pinched through a little hole in her diaphragm}. If she's doing well, we may be able to hold her. She will be in the NICU at the university hospital until she's stable enough to transfer to Children's, which is only a mile down the street. Of course, all of this is assuming there are no complications.
If I'm doing well--no C-section, no drugs, able to walk, etc.--I can be discharged as soon as six to eight hours after birth to join Lainie at Children's. The surgery will most likely take place when she is two to seven days old. Barring unforeseen circumstances, the operation takes about two hours, and the surgeon thinks the hole is small enough that they can stitch it shut, rather than using a patch. Lainie may be a candidate for a relatively new technique, where they operate sort of laparoscopically via cameras and three tiny holes in her side and back. {The main "advantage" would be cosmetic: just three tiny holes, rather than a scar on her chest/abdomen.} Regardless of which method they use, the success rate of the surgery in isolated cases {meaning when a diaphragmatic hernia is the baby's only problem} is 80-90%. Afterward, it generally takes a few days for the GI tract to start functioning normally--it's "stunned" by the surgery and doesn't start squeezing and moving things along right away. She will continue to get all her nutrition by IV {they call it TPN: Total Parenteral Nutrition} 'til things are working, and then they will start her on oral nourishment. Suffice it to say I will probably be an expert at pumping by that point!
Of course, there are still mountains of unknowns that simply can't be predicted 'til we are there. How much difficulty will she have breathing after the surgery? How long will she be intubated? How long will she be in the NICU? How much trouble will she have learning how to take oral feedings? {There are often significant feeding problems because the babies have never nursed or taken anything in by mouth, and now they are a week or more old.} Will she have reflux? Long-term feeding problems? How long will she need oxygen? Will she need a feeding tube?
All the doctors and staff were so incredibly helpful, even though all our conversations were peppered with caveats about "we won't know till she's here" and "assuming things don't change" and "if she continues to do as well as she is now." Nonetheless, it is pretty incredible that this is the smallest diaphragmatic hernia the neonatologist has ever seen...and that the surgeon's reaction when he saw the ultrasound images of the hernia was, "That's it? That's all I have to fix?"
The only thing that gave us pause is that the neonatologist wants to induce at 39 weeks. Apparently there's an increased risk of stillbirth when a baby has any type of congenital anomaly, so they don't like to let these babies go to term. Of course we didn't think to ask how much the risk increases, but that is on our list of questions for next week! I am really not a fan of induction, especially because this doctor is going with a due date five days earlier than the midwife...and without going into detail, I'm quite sure the later due date is more accurate. So, unless I can convince the neonatologist of the later due date, we are going to have to start thinking about induction a full 12 days before I think I'm actually due {due date moved up five days, then take away seven days to get to 39 weeks}. Distressing. Obviously we don't want to put Lainie at risk, but if she is still doing fine, we also don't want to take on unnecessary risk by trying to force labor when my body and baby aren't ready. Thankfully the doctor said that, if Lainie is doing good inside me {as evidenced by a nonstress test and/or ultrasound}, she is willing to give us a few days and "readdress the issue."
We have another ultrasound, neonatology and OB consultations, and a tour of the labor and delivery unit scheduled for next week at the university hospital. Since I will be about 36 weeks {depending on who you talk to}, I think they will have me start coming in weekly after that for nonstress tests and/or ultrasounds 'til Lainie is born.
Here are some specific ways you can pray for us:
~ for Elaina's continued health and growth...that no other problems will develop
~ that I will go into labor naturally, at a time that is acceptable to the doctors ;-) and that Lainie will tolerate labor and delivery well {no distress}
~ that Elaina will need minimal help breathing after she's born
~ successful surgery
~ fast, smooth recovery
~ easy transition to oral feeding and breastfeeding
~ no respiratory or digestive problems as a result of the hernia or the surgery
Whew...that was a lot. I'm going to take a break now and eat some chocolate ice cream. When I come back, I promise to tell you about our lovely little weekend on Vashon Island!
Sunday, June 3, 2012
{ Babysitting }
On Friday night, we babysat for friends who have a six-week-old daughter. Mike has been smitten with Julia since she was born, but goodness gracious--it went to a whole new level! He wouldn't give her up.
As we crawled into our own bed that night, he said little Julia sleeping on his chest was the highlight of his day.
*melt me*
Milk-drunk Julia giving Elaina a hug.
She's a pretty sweet little girl. Can't wait 'til we have our own in a few weeks!
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