I've heard friends say things like, "I never thought I'd drive a minivan," or "I never thought I would view 9 PM as late." It's always followed up by, "And then I had kids." Well, this is a post that I never ever thought I would write.
Last night the power went off at 9:30 PM due to a pretty spectacular wind storm. The sound of the transformers exploding sounded a bit like a war zone. I bundled up Aurelia in an extra swaddle, put some wool blankets on the bed, and snuggled in for a cold, dark night. I was so thankful that one of the things Joey stressed before he left was that the emergency flashlight was in the drawer right beside the bed. And wonder of wonders, my little girl slept for 3 1/2 hours straight. But along with the 2:00 AM nursing came a diaper change. . . in the dark. I had prepared for this before going to bed by laying out a diaper and an extra sleeper in case a blow out happened. Always be prepared, right? I set the flashlight on the changing table and got to work. Now, one of the things my husband also should have done before he left was make sure the batteries in the flashlight were charged. Aurelia was all cleaned up and I was getting ready to put her new diaper on when she made a grimicing face I'm all too familiar with followed by a little grunt. And then the flashlight went out. From the noise I heard in the darkness, I new this was a good one, this was the blowout I had prepared for. So there I stood in the pitch black with a naked baby on the changing table, no light source in arms reach. I remembered that there was a tea light on my bedstand for the air freshener I light when I change out the diaper pail. I fumbled around for a match, finally got the candle lit, and realized that the tea light wasn't going to cut it. Then I remembered that our unity candle from our wedding was on the pie safe in the kitchen. I strapped Aurelia down to the pad (and thought to myself, "THAT'S why these things have straps") and used the tea light to light my way into the living room. Reflected in the warm glow of our wedding memento, I found my daughter and the auxiliary sleeper covered in poo. Miraculousy she didn't get any on the sleeper she was wearing or the changing pad. 5 wipes later, I picked my clean baby up off the changing pad, turned around, knocked over the flashlight which turned back on as it hit the floor.
And that's it. I'd always promised myself I wouldn't post about poop. But I know that a certain subset of Aurelia's fanbase would be unforgiving if I didn't post stories like these (you know who you are Loya and Nong). And sometimes you just have to laugh at the situations parenting puts you in. While most people will remember the windstorm of Fall 2010, to me it was a real sh*tstorm (forgive the language).
Tuesday, November 16, 2010
Friday, November 12, 2010
Neonatal Follow-up
Last week Aurelia had her first Neonatal follow-up appointment. The purpose of this appointment is to take an in depth look at her growth, development, and our family well being. We meet with physical therapy, a nurse practitioner, the director of the clinic, and a social worker (in the future we'll add an occupational therapist, a developmental pediatrician, and a speech pathologist to that line up). She'll have these appointments from time to time over the next several years to make sure she's seeing all the right doctors and specialists.
Let me start by saying, as I've said many times before, I LOVE our doctors at Mary Bridge and Tacoma General. They are so caring and attentive. I always feel that they take a personal interest in the health and well being of my little family. There has only been one specialist that I wasn't a huge fan of, but it was more due to difference in personality than any issue with the level of care provided (and I have the option of taking Aurelia to a different specialist if I want to). I've never felt like a number, a paycheck, a nuisance, or any other negative doctor/patient stereotype. The reason I mention this is because I firmly believe that if you don't like your doctor, you should find a new one. I have many friends that decide to go a more natural route when it comes to their medical care, and that's fine with me as long as it's done with the right attitude. If you have a doctor that makes you feel like you're on an assembly line, don't assume that all doctors will treat you that way. And that's my little bit of a soap box moment for this post.
With that said, this appointment felt a little like the doctors were on an assembly line for us. We spent the morning in a private room and met with each person individually. Aurelia did so well and everyone was very impressed with her. She was pretty worn out after physical therapy, but besides that she was quite the trooper. She passed all of her little milestones, although they would like her to start physical therapy to help strengthen her neck. She definitely favors the side without the shunt, and we would like to address that before it becomes a more serious problem. We also found out that she will most likely need helmet therapy when she's a little older as her head is a little pointed. The nurse practitioner was very encouraged that although her head is misshapen, her facial features are all very symmetrical and don't seem to be affected by her head shape. Bottom line, she's adorable.
The good news is that we are now on a two week break from any appointments! She has her 3 month check up, opthamalogy, and another neonatal follow-up coming up in the next two months. Then we have a break until her 6 month appointments. It's just nice to not be at Mary Bridge every week.
The even better news is that she weighed in at 8lbs 9oz. Yes, that is still itty bitty. And yes, she is still in newborn clothes (at least for a few more days). BUT that's a 10 ounce weight gain in one week! We'll take it!
I have to admit that I feel exhausted right now. I've heard this is common for mothers and I'm not too worried. But I'm anxiously awaiting the day when Baby Hawk consistently sleeps longer than 2 hours at a time. The nights she sleeps 3 hours at a time feel like heaven. I keep repeating the mantra, "This too shall pass." I look forward to feeling like my thoughts are more cohesive and my writing is less jumbled. In the mean time, I'll enjoy that she is so precious and little, even if it's through bleary eyes and words that don't make sense.
Let me start by saying, as I've said many times before, I LOVE our doctors at Mary Bridge and Tacoma General. They are so caring and attentive. I always feel that they take a personal interest in the health and well being of my little family. There has only been one specialist that I wasn't a huge fan of, but it was more due to difference in personality than any issue with the level of care provided (and I have the option of taking Aurelia to a different specialist if I want to). I've never felt like a number, a paycheck, a nuisance, or any other negative doctor/patient stereotype. The reason I mention this is because I firmly believe that if you don't like your doctor, you should find a new one. I have many friends that decide to go a more natural route when it comes to their medical care, and that's fine with me as long as it's done with the right attitude. If you have a doctor that makes you feel like you're on an assembly line, don't assume that all doctors will treat you that way. And that's my little bit of a soap box moment for this post.
With that said, this appointment felt a little like the doctors were on an assembly line for us. We spent the morning in a private room and met with each person individually. Aurelia did so well and everyone was very impressed with her. She was pretty worn out after physical therapy, but besides that she was quite the trooper. She passed all of her little milestones, although they would like her to start physical therapy to help strengthen her neck. She definitely favors the side without the shunt, and we would like to address that before it becomes a more serious problem. We also found out that she will most likely need helmet therapy when she's a little older as her head is a little pointed. The nurse practitioner was very encouraged that although her head is misshapen, her facial features are all very symmetrical and don't seem to be affected by her head shape. Bottom line, she's adorable.
The good news is that we are now on a two week break from any appointments! She has her 3 month check up, opthamalogy, and another neonatal follow-up coming up in the next two months. Then we have a break until her 6 month appointments. It's just nice to not be at Mary Bridge every week.
The even better news is that she weighed in at 8lbs 9oz. Yes, that is still itty bitty. And yes, she is still in newborn clothes (at least for a few more days). BUT that's a 10 ounce weight gain in one week! We'll take it!
I have to admit that I feel exhausted right now. I've heard this is common for mothers and I'm not too worried. But I'm anxiously awaiting the day when Baby Hawk consistently sleeps longer than 2 hours at a time. The nights she sleeps 3 hours at a time feel like heaven. I keep repeating the mantra, "This too shall pass." I look forward to feeling like my thoughts are more cohesive and my writing is less jumbled. In the mean time, I'll enjoy that she is so precious and little, even if it's through bleary eyes and words that don't make sense.
Thursday, November 4, 2010
It could have been worse
I've heard many friends speak of moments of bleary eyed postpartum craziness, but I had no idea it would be this bad.
A week ago, I went to Nordstroms to pick up something I ordered. I thought I was being so on top of things, using a gift card to order something online with in-store pick-up to save on shipping. But when the lady behind the desk asked for my id, I was shocked to find that my driver's license was gone. Not only was it gone, I couldn't remember the last time I had used it. . . Actually, the last time I had used it was on our way to North Carolina a month earlier. Oh, and although I haven't lived in Texas for three years, my license says otherwise. Needless to say, I didn't think I was ever going to see it again and was anticipating a drive test to get a Washington license. But when I got home that night, my license was in my mailbox. Apparently it found it's way all the way back to LeTourneau where the mail center tracked down our current info. And now getting a Washington license is way up there on my to do list.
Then on Tuesday, I was excited to get a quick hour away to run some errands. The Simlers had my little lady and I knew I'd get everything done in half the time. But first I had to get out of the driveway. I backed our new Jetta into our old Subaru (this would be the Outback that Jeremy and Kristalyn sold to us that we sold back to them). Yep, I ran into my old, parked car. The cars are both a little scratched, but it's not that bad.
And finally yesterday I got a phone call from the office at our apartment informing me that someone had turned in my checkbook which had been on the ground in the parking lot. This one is confusing as I never take my checkbook out of my purse. It must have just fallen out. But no checks were missing and I'm glad I lost it where I did.
Today I am thankful for little bits of grace. I'm thankful that my postpartum forgetfulness is something I can shake my head about and nothing more serious. I'm thankful that it could have been a lot worse in all of those scenarios, but it wasn't that bad. And I'm praying that these little moments are not the signs of more serious things to come. I'm hoping that losing a license, checkbook, and hitting a parked car are the peak of this madness. Basically, I'm just hoping and praying that I don't leave my daughter somewhere on accident.
A week ago, I went to Nordstroms to pick up something I ordered. I thought I was being so on top of things, using a gift card to order something online with in-store pick-up to save on shipping. But when the lady behind the desk asked for my id, I was shocked to find that my driver's license was gone. Not only was it gone, I couldn't remember the last time I had used it. . . Actually, the last time I had used it was on our way to North Carolina a month earlier. Oh, and although I haven't lived in Texas for three years, my license says otherwise. Needless to say, I didn't think I was ever going to see it again and was anticipating a drive test to get a Washington license. But when I got home that night, my license was in my mailbox. Apparently it found it's way all the way back to LeTourneau where the mail center tracked down our current info. And now getting a Washington license is way up there on my to do list.
Then on Tuesday, I was excited to get a quick hour away to run some errands. The Simlers had my little lady and I knew I'd get everything done in half the time. But first I had to get out of the driveway. I backed our new Jetta into our old Subaru (this would be the Outback that Jeremy and Kristalyn sold to us that we sold back to them). Yep, I ran into my old, parked car. The cars are both a little scratched, but it's not that bad.
And finally yesterday I got a phone call from the office at our apartment informing me that someone had turned in my checkbook which had been on the ground in the parking lot. This one is confusing as I never take my checkbook out of my purse. It must have just fallen out. But no checks were missing and I'm glad I lost it where I did.
Today I am thankful for little bits of grace. I'm thankful that my postpartum forgetfulness is something I can shake my head about and nothing more serious. I'm thankful that it could have been a lot worse in all of those scenarios, but it wasn't that bad. And I'm praying that these little moments are not the signs of more serious things to come. I'm hoping that losing a license, checkbook, and hitting a parked car are the peak of this madness. Basically, I'm just hoping and praying that I don't leave my daughter somewhere on accident.
Thursday, October 28, 2010
Getting into a routine
Has it really been three weeks since my last update? It's not for lack of material. I'm struggling with lack of time. Like most new parents, I find myself constantly asking, "Where did the day go?" With Joey back on rotation and gone until December, Aurelia and I are settling into our routine. Of course, our routine includes frequent trips to Mary Bridge Health Clinic to see all her specialists along with diaper changes, late night feedings, cuddles, and all the other newborn joys. I am very happy to report that most of her lab work and examinations have come back normal so far! We are waiting for results from genetics, her endocrine report came back normal, and her neurosurgery follow-up was a breeze. After our neonatal follow up next Tuesday, we have a bit of a specialist break until her 4 month appointments and her opthamology appointment. In the meantime, we're enjoying lots of precious moments like these:
Such Sweet Smiles!
Cuddles with Uncle Jeremy
Pumpkin patch with cousins Karis and Jaron
My little 7lb 15oz pumpkin.
As we get used to our day to day routine, I hope to be able to update and post more. I finally got around to ordering birth announcements, so I'm a little behind in general. But, as always, it's my goal to be better at letting people know what's going on in the Hawkin's Household. Right now our two biggest prayer needs are that she would continue to pack on the ounces and that her neonatal follow up will go well (more on the details of that later). 11:15 PM is way too late to be up these days!
Wednesday, October 6, 2010
North Carolina Notes: Perspective
Children's hospitals make me a misty eyed, even more so now that I have a child that frequents them. Duke Children's Hospital does a lot of specialized treatments, which means there are a lot of sick kids there. It's amazing what walking these halls can do for my perspective on our current situation. Although there are a lot of unknowns with hydrocephalus, right now Aurelia is a healthy 6 week old baby. There is so much of life to enjoy with her. We have a lot to be thankful for.
Our time at Duke was simple and straightforward. We met with a nurse practitioner on Monday to do our intake. We were in and out of the hospital in about an hour. Tuesday was a much longer day with a few delays and a few unexpected turns. We already knew that Aurelia had weak veins since her three IV lines collapsed in the NICU following her shunt placement. To place the IV for her reinfusion, she received 6 pricks and ended up with an IV on the side of her head (precious little lamb). She was such a trooper through it all. And she is so strong! Everyone was impressed with her kicks and grip. She continues to make us beam with pride.
That's a birds eye view of our medical team. They were all amazing. And yes, that is a guitar in the mix. The Jim Valvano Day Hospital is for children receiving chemo or other infusions (like Aurelia) and tries to make these procedures as inviting as possible for its patients. There are playstations, TVs, DVDs, an art therapist and a musical therapist. Baby Hawk was soothed with lullabies ranging from Rainbow Connection to Baby Beluga. I think it helped ease the tension in the room as everyone found themselves tapping their feet and singing along.
-Aurelia has really long fingers. In Washington, people always comment that she should play the piano. In the land of Coach K, Jimmy V and UNC, people say she'll be a great basketball player. We've already told her she can go to Duke.
-We found out that we'll need to come back for another infusion when Aurelia is 6 months, and possibly one more when she is 1 year. The idea is that as cells mature, more stem cells can help fix more damage.
-Cord blood looks a little like Kool-Aid.
As I said at the beginning of this post, being at Duke made us realize that we have a lot to be thankful for. I don't quite know how to word what I'm trying to say. It's hard to share all the emotion of an experience like this, and even more difficult with the amount of sleep I'm averaging. When I see other parents of children that have special conditions, my response isn't to compare our situation to theirs. I suppose part of me wonders how they are coping, what day to day life looks like for them. Spending time at children's hospitals makes me thankful for my daughter and for her hydrocephalus. There are times when I'm frustrated that she was born with this, but that's a whole separate post. But when I see other families walking with their children through various levels of sickness, it makes me realize each day is a blessing no matter what it holds. It makes me hug her tight and thank God for my amazing, unique, beautiful little lady.
Our time at Duke was simple and straightforward. We met with a nurse practitioner on Monday to do our intake. We were in and out of the hospital in about an hour. Tuesday was a much longer day with a few delays and a few unexpected turns. We already knew that Aurelia had weak veins since her three IV lines collapsed in the NICU following her shunt placement. To place the IV for her reinfusion, she received 6 pricks and ended up with an IV on the side of her head (precious little lamb). She was such a trooper through it all. And she is so strong! Everyone was impressed with her kicks and grip. She continues to make us beam with pride.
That's a birds eye view of our medical team. They were all amazing. And yes, that is a guitar in the mix. The Jim Valvano Day Hospital is for children receiving chemo or other infusions (like Aurelia) and tries to make these procedures as inviting as possible for its patients. There are playstations, TVs, DVDs, an art therapist and a musical therapist. Baby Hawk was soothed with lullabies ranging from Rainbow Connection to Baby Beluga. I think it helped ease the tension in the room as everyone found themselves tapping their feet and singing along.
A few point of interest:-Aurelia has really long fingers. In Washington, people always comment that she should play the piano. In the land of Coach K, Jimmy V and UNC, people say she'll be a great basketball player. We've already told her she can go to Duke.
-We found out that we'll need to come back for another infusion when Aurelia is 6 months, and possibly one more when she is 1 year. The idea is that as cells mature, more stem cells can help fix more damage.
-Cord blood looks a little like Kool-Aid.
As I said at the beginning of this post, being at Duke made us realize that we have a lot to be thankful for. I don't quite know how to word what I'm trying to say. It's hard to share all the emotion of an experience like this, and even more difficult with the amount of sleep I'm averaging. When I see other parents of children that have special conditions, my response isn't to compare our situation to theirs. I suppose part of me wonders how they are coping, what day to day life looks like for them. Spending time at children's hospitals makes me thankful for my daughter and for her hydrocephalus. There are times when I'm frustrated that she was born with this, but that's a whole separate post. But when I see other families walking with their children through various levels of sickness, it makes me realize each day is a blessing no matter what it holds. It makes me hug her tight and thank God for my amazing, unique, beautiful little lady.
Saturday, September 25, 2010
iPhone Airport Update
Our hands have been full with preparing for trip to Duke and taking care of lite Lady Hawk. So here I sit, typing on my iPhone at SeaTac, attempting to get out a quick update. Please excuse spelling and grammar errors. It's tough to type with thumbs at 6:50 in the morning.
Here are some quick points of update:
-Baby Hawk is one month old! She's growing up so fast!
-Aurelia currently weighs 6lbs 11ozs. Her weight gain has been slow, but we're happy with any gains!
-Our Endocrinology and Genetics appointments went well. Her growth hormone and stress hormones were low, but that's fairly normal for infants. Her growth hormone will be retested in a year and we'll follow up on her stress hormone in a few weeks. Poor little thing had to give 4 ml of blood at her endocrinology appointment, so Joey and I jumped at the chance to give our blood instead of her at the genetics appointment. The results from those tests will take 6 weeks to come in.
-We are so excited to be on our way to Duke! And it will be great to spend some time with Mamaw and Papaw Hawkins while we're there.
And that's about it, or all I can handle from an iPhone!
Travel update: Aurelia travels like a champ! She slept and smiled all the way from Seattle to D.C.
Here are some quick points of update:
-Baby Hawk is one month old! She's growing up so fast!
-Aurelia currently weighs 6lbs 11ozs. Her weight gain has been slow, but we're happy with any gains!
-Our Endocrinology and Genetics appointments went well. Her growth hormone and stress hormones were low, but that's fairly normal for infants. Her growth hormone will be retested in a year and we'll follow up on her stress hormone in a few weeks. Poor little thing had to give 4 ml of blood at her endocrinology appointment, so Joey and I jumped at the chance to give our blood instead of her at the genetics appointment. The results from those tests will take 6 weeks to come in.
-We are so excited to be on our way to Duke! And it will be great to spend some time with Mamaw and Papaw Hawkins while we're there.
And that's about it, or all I can handle from an iPhone!
Travel update: Aurelia travels like a champ! She slept and smiled all the way from Seattle to D.C.
Thursday, September 16, 2010
Our Baby Blue Devil
Baby Hawk is going to Duke! When the diagnosis of hydrocephalus was confirmed, I started doing some research on treatment and options. What I found was that there is not much out there. There is no cure for hydrocephalus and the shunt surgery used to treat it hasn't changed in the last 40 years. Although the surgery is successful in relieving the pressure put on the brain, it comes with a whole host of complications including shunt malfunction and infection. And in the end, the shunt relieves pressure but doesn't repair any damage that might have been done by the pressure. We knew from the beginning that the amount of pressure on Aurelia's brain was significant. Of course, we still don't know what that will mean for her long term and we're slowly checking things off the list as we meet with specialists and as she passes milestones (i.e. we know she's not blind, we know she can hear, we know she has movement in all her limbs, etc.). What I was looking for was something we could do to give her whatever intervention she might need to repair whatever brain damage had been done.
So, I googled "fetal hydrocephalus treatments" and found this website: Fetal Hydrocephalus. As I read through the information provided on this site about caring for infants with hydrocephalus that have gone through the shunt surgery, I became increasingly interested in the cord blood therapy discussed on the website. Before finding this site, I didn't know anything about cord blood banking beyond seeing a few advertisements for places like ViaCord in pregnancy magazines. The theory behind the study being done at Duke is that the stem cells found in a baby's cord blood can help regenerate damaged cells. The therapy is fairly straightforward since the blood being transfused is the baby's own blood. There is no chance of rejection and it is a simple proceedure. It only takes a few hours for the blood transfusion. In fact, it sounds like the intake the day before the transfusion might take longer than the actual transfusion.
After reading about the therapy, spending a lot of time in prayer, and speaking to several health care professionals we respect and trust, we decided to contact Duke to see if Aurelia would be a candidate for this treatment. A week and a half before she was born, we got the thumbs up from Duke and were overnighted our cord blood collection kit. When she was born, her cord blood was collected and overnighted back to North Carolina. And now we're getting ready to travel back to Durham in two weeks for the treatment. We are very excited to participate in this study. We've been amazed at how well everything has fallen into place (from hearing back from Duke to the fact that Joey's parents live near to the university). And we are so amazed at the stories from other parents of hydrocephalic babies that have gone through this treatment. We're excited to see how it helps our little lady.
I plan to update more details about the treatment as we go through it. It's been hard to find time to update the blog since we've had Aurelia home with us. As we get into a bit of a routine (a very flexible routine), I hope to be able to update more. But we are so thankful that she is finally gaining a little weight (6 lbs. 9 oz.) and so thankful that she's starting to sleep more. She is such a little blessing.
So, I googled "fetal hydrocephalus treatments" and found this website: Fetal Hydrocephalus. As I read through the information provided on this site about caring for infants with hydrocephalus that have gone through the shunt surgery, I became increasingly interested in the cord blood therapy discussed on the website. Before finding this site, I didn't know anything about cord blood banking beyond seeing a few advertisements for places like ViaCord in pregnancy magazines. The theory behind the study being done at Duke is that the stem cells found in a baby's cord blood can help regenerate damaged cells. The therapy is fairly straightforward since the blood being transfused is the baby's own blood. There is no chance of rejection and it is a simple proceedure. It only takes a few hours for the blood transfusion. In fact, it sounds like the intake the day before the transfusion might take longer than the actual transfusion.
After reading about the therapy, spending a lot of time in prayer, and speaking to several health care professionals we respect and trust, we decided to contact Duke to see if Aurelia would be a candidate for this treatment. A week and a half before she was born, we got the thumbs up from Duke and were overnighted our cord blood collection kit. When she was born, her cord blood was collected and overnighted back to North Carolina. And now we're getting ready to travel back to Durham in two weeks for the treatment. We are very excited to participate in this study. We've been amazed at how well everything has fallen into place (from hearing back from Duke to the fact that Joey's parents live near to the university). And we are so amazed at the stories from other parents of hydrocephalic babies that have gone through this treatment. We're excited to see how it helps our little lady.
I plan to update more details about the treatment as we go through it. It's been hard to find time to update the blog since we've had Aurelia home with us. As we get into a bit of a routine (a very flexible routine), I hope to be able to update more. But we are so thankful that she is finally gaining a little weight (6 lbs. 9 oz.) and so thankful that she's starting to sleep more. She is such a little blessing.
Tuesday, September 7, 2010
Awareness
September is Hydrocephalus Awareness Month. It's interesting that a few months ago we didn't have much to any awareness of this little condition. Last night when we found ourselves at the ER at 1:00 AM with a screaming baby, we were very aware. Aurelia is fine, we're fine, we think everything is fine for now. But last night made us realize how quickly things can become scary. We went from being bleary eyed, frustrated, exhausted parents who hadn't slept for what felt like days to alert and out the door in a matter of seconds. To make a long story short, our little lady had barely slept in the days since we brought her home. We've been told that newborns sleep a lot, but when we started keeping track we realized that our daughter was averaging about 2 hours a day/night. The tipping point is when she started having regular fits that appeared extremely painful and almost seizure like. We know that seizures and hydrocephalus often go hand in hand, so we made the decision to rush to Mary Bridge. As we held our little girl in the ER and talked to the doctors, we watched as she slowly drifted off to a peaceful sleep, her fits become fewer and farther between, and we left the hospital at 4:00 AM exhausted but reassured that it wasn't shunt malfunction or anything more serious than an overly exhausted baby. She slept from the time we arrived in the ER until 5:00 tonight with only a few nursing breaks in the middle (this includes sleeping through a cranial ultrasound).
When we first learned about Aurelia's condition, I found the following article about learning to live with that fact that the child you expected to be healthy might have some challenges:
When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland!” “Holland?” you say. “What do you mean, Holland? I signed up for Italy. I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It’s just a different place. So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that experience will never, ever, ever, go away. The loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
- Emily Perl Kingsley
There is a lot of things that we are unaware of until it becomes a part of our lives. We felt this way when went through our miscarriages. And we definitely feel this way now that we're living "in Holland." But like the article says, Holland has windmills and it also has great beer. We've met some amazing people that we wouldn't have met otherwise (major props to all our doctors, nurses, case managers, etc.). We get to participate in a really neat clinical research study at Duke. And our little girl has the most amazing smile. We're learning to appreciate the small and large victories of this new journey.
A few things to pray for if we come to mind:
-Aurelia needs sleep! She won't sleep unless someone is holding her, which means we aren't sleeping much at night and only when we have pinch hitters come in to hold her (thanks Dad, Mary and Sarah for holding our baby today). Please pray that she'll be able to sleep and that we'll get some sleep too!
-She also needs to start packing on the o - z's (and hopefully adding up to some l-b's). When we left the hospital she weighed 6lbs. 8 oz. She's eating like a champ, we just need it to show.
-We're pretty worn out. We feel like we're living in a fog. We need an extra measure of strength, grace, patience, and whatever it is that makes people good parents.
And just 'cause we think she's too cute:
When we first learned about Aurelia's condition, I found the following article about learning to live with that fact that the child you expected to be healthy might have some challenges:
When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland!” “Holland?” you say. “What do you mean, Holland? I signed up for Italy. I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It’s just a different place. So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that experience will never, ever, ever, go away. The loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
- Emily Perl Kingsley
There is a lot of things that we are unaware of until it becomes a part of our lives. We felt this way when went through our miscarriages. And we definitely feel this way now that we're living "in Holland." But like the article says, Holland has windmills and it also has great beer. We've met some amazing people that we wouldn't have met otherwise (major props to all our doctors, nurses, case managers, etc.). We get to participate in a really neat clinical research study at Duke. And our little girl has the most amazing smile. We're learning to appreciate the small and large victories of this new journey.
A few things to pray for if we come to mind:
-Aurelia needs sleep! She won't sleep unless someone is holding her, which means we aren't sleeping much at night and only when we have pinch hitters come in to hold her (thanks Dad, Mary and Sarah for holding our baby today). Please pray that she'll be able to sleep and that we'll get some sleep too!
-She also needs to start packing on the o - z's (and hopefully adding up to some l-b's). When we left the hospital she weighed 6lbs. 8 oz. She's eating like a champ, we just need it to show.
-We're pretty worn out. We feel like we're living in a fog. We need an extra measure of strength, grace, patience, and whatever it is that makes people good parents.
And just 'cause we think she's too cute:
Monday, September 6, 2010
Home!
Yes, this update is late in coming. But we are in our first few days of being home with a newborn. Needless to say, we're running on fumes, and loving every second of it.
Thursday morning we were told that the hope was to send us home that afternoon. There were some things on the MRI that needed review before we got the go ahead and Aurelia needed to pass the car seat test before we could be discharged.
To sum things up, she passed the car seat test. The MRI results were a little more vague. The good news is that there was nothing that warranted immediate attention. The three biggest concerns are that she has two small hemorrhages in her brain, she has damage to her midline structures (i.e. the pituitary gland, the corpus callosum, etc.), and there are parts of her brain that don't appear to be getting enough blood. What does all this mean? At this point it's anyone's guess. None of the findings were too surprising to the neonatologist, but they did add to our list of upcoming appointments. Here is a short list of the specialists that we will be seeing in the upcoming weeks: endocrinologist, geneticist, developmental pediatrician, neurologist, physical therapist, occupational therapist, speech pathologist, neonatologist, neurosurgeon, and our regular pediatrician. Yes, Aurelia already has a busier social calendar than I do! Oh, and we're going to Duke for a clinical research study on hydrocephalus and cord blood infusions in three weeks. . . So did any of that make sense? We're still figuring it all out ourselves.
But for now, we're just happy to be home. It's so surreal to have this little person in our lives after years of waiting for her. We're so proud of our little fighter (currently fighting sleep).
Thursday morning we were told that the hope was to send us home that afternoon. There were some things on the MRI that needed review before we got the go ahead and Aurelia needed to pass the car seat test before we could be discharged.
To sum things up, she passed the car seat test. The MRI results were a little more vague. The good news is that there was nothing that warranted immediate attention. The three biggest concerns are that she has two small hemorrhages in her brain, she has damage to her midline structures (i.e. the pituitary gland, the corpus callosum, etc.), and there are parts of her brain that don't appear to be getting enough blood. What does all this mean? At this point it's anyone's guess. None of the findings were too surprising to the neonatologist, but they did add to our list of upcoming appointments. Here is a short list of the specialists that we will be seeing in the upcoming weeks: endocrinologist, geneticist, developmental pediatrician, neurologist, physical therapist, occupational therapist, speech pathologist, neonatologist, neurosurgeon, and our regular pediatrician. Yes, Aurelia already has a busier social calendar than I do! Oh, and we're going to Duke for a clinical research study on hydrocephalus and cord blood infusions in three weeks. . . So did any of that make sense? We're still figuring it all out ourselves.
But for now, we're just happy to be home. It's so surreal to have this little person in our lives after years of waiting for her. We're so proud of our little fighter (currently fighting sleep).
Meeting cousin Padraig for the first time!
Tuesday, August 31, 2010
Our New Roommate
We have a new roommate in our little hospital corner. She's cute as a button, loves to snuggle, and is snoozing away in her crib.
Yesterday we met with our neonatologist, case manager, and a nutritionist to go over goals and milestones we need to meet before Aurelia can come home. One of the big things that she needs is well established feedings. Although we will be spending lots of time at doctor's offices over the next few days/weeks/months years, our neonatologist summed up the basics of neonatal care by saying, "As long as she can breath, eat, poop, pee, and keep a healthy temperature, she can go home." We've met most of the other milestones (temperature has been iffy, she's always a little chilly). But she was having a hard time with feeding because she doesn't take a bottle well and only breast feeds. Since it's hard for us to constantly be in the ICN area or be "on call" for feedings, the decision was made that our daughter could room in with us. Technically, she's still in the ICN, but our little neck of the woods outside of the ICN. It's one step closer to going home, and we are thrilled!
If all goes well with her blood sugar and labs, we've been given a departure date of approximately 48 hours! Giving praise and praying that she'll continue to makes these remarkable strides towards going home!
Papa Pandiani was excited to finally get to hold his granddaughter:
Please pray for her tomorrow as she has a MRI and an ophthalmology appointment. She did great in her first physical therapy appointment and was only given a few things to work on. And she passed her hearing test with flying colors!
Yesterday we met with our neonatologist, case manager, and a nutritionist to go over goals and milestones we need to meet before Aurelia can come home. One of the big things that she needs is well established feedings. Although we will be spending lots of time at doctor's offices over the next few days/weeks/months years, our neonatologist summed up the basics of neonatal care by saying, "As long as she can breath, eat, poop, pee, and keep a healthy temperature, she can go home." We've met most of the other milestones (temperature has been iffy, she's always a little chilly). But she was having a hard time with feeding because she doesn't take a bottle well and only breast feeds. Since it's hard for us to constantly be in the ICN area or be "on call" for feedings, the decision was made that our daughter could room in with us. Technically, she's still in the ICN, but our little neck of the woods outside of the ICN. It's one step closer to going home, and we are thrilled!
If all goes well with her blood sugar and labs, we've been given a departure date of approximately 48 hours! Giving praise and praying that she'll continue to makes these remarkable strides towards going home!
Papa Pandiani was excited to finally get to hold his granddaughter:
Please pray for her tomorrow as she has a MRI and an ophthalmology appointment. She did great in her first physical therapy appointment and was only given a few things to work on. And she passed her hearing test with flying colors!
7th Anniversary, 1 Week Birthday
9 years ago, I fell in love with this guy:
7 years ago yesterday, I married this guy:
We joke that we're never able to celebrate our anniversary because we always have major life events happening around our anniversary (move to Texas, first day at LeTourneau, another move to Texas, move to Afghanistan, etc.). But this year takes the cake for major life event occurring around our anniversary:
Our ICN nurses assured us that Aurelia would be in good hands if we wanted to pop out for a quick date. So, we left our 1 week old with the babysitters and went out to eat. Granted, we talked about our daughter for most of the evening and ran into our pediatrician and his wife at the restaurant. But it was refreshing to be together and out of the hospital (my first time in a week!). And Aurelia was sleeping soundly, just the way we left her when we got back.
It's been 7 years of adventure and so much love. I can't wait to see the adventures our future holds, where we'll go and what we'll do. And I'm so excited to have this little bugger joining us for the adventure:
 |
| From wedding photo |
7 years ago yesterday, I married this guy:
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| From wedding photo |
We joke that we're never able to celebrate our anniversary because we always have major life events happening around our anniversary (move to Texas, first day at LeTourneau, another move to Texas, move to Afghanistan, etc.). But this year takes the cake for major life event occurring around our anniversary:
 |
| From Aurelia |
Our ICN nurses assured us that Aurelia would be in good hands if we wanted to pop out for a quick date. So, we left our 1 week old with the babysitters and went out to eat. Granted, we talked about our daughter for most of the evening and ran into our pediatrician and his wife at the restaurant. But it was refreshing to be together and out of the hospital (my first time in a week!). And Aurelia was sleeping soundly, just the way we left her when we got back.
It's been 7 years of adventure and so much love. I can't wait to see the adventures our future holds, where we'll go and what we'll do. And I'm so excited to have this little bugger joining us for the adventure:
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| From Aurelia |
Sunday, August 29, 2010
Baby Hawk's New Crib!
This morning we were told to expect the photo therapy to last 24-28 more hours. At noon we found Aurelia in her new crib! It's amazing to be able to pick her up and hold her, to feed her and not worry about getting her back under the lights, to not have to change her diapers through the little hand holes in the isolette. She is growing up so fast! Tomorrow we hope to meet with our care team to get an idea of what appointments she'll have this week and even when we might be able to head home. She keeps surprising us each day. God is good!
Please pray that she's able to maintain a healthy temperature and that feeding time will continue to go well.
Saturday, August 28, 2010
Where we are now
Since our situation is changing so rapidly, I thought it would be a good idea to start my update with where we are at the moment and work my way back to where we were earlier this week.
Aurelia is currently living in the Intermediate Care Nursery (ICN). This is a step up from her first home in the NICU, and we are so pleased that she's progressed enough to be up here. She is still living in a pod as she's had a little trouble with temperature control. She's also getting some photo therapy to combat some jaundice. Most of her fluids are given through an IV drip, but we have feedings with her every three hours trying to establish some weight gain and normalcy. For the most part, she continues to exceed expectations. She is alert and responsive despite having a very tough first week. In the next week, we'll begin meeting with specialists including eye doctors, occupational therapists, neurologists, developmental pediatricians, and all kinds of other incredible doctors. She will have an MRI in the next week to look at her response to the shunt surgery and to get a better look at her brain structures.
How long with Aurelia be in the hospital?
The answer to that is still unknown, although we tentatively hope it will be in the next week. In order for her discharged, she needs to be on a regular feeding schedule, gaining weight, able to come off the IV drip, and maintain her temperature (although we think this last one is under control). She also needs to see some of the specialists as an in patient. If she's unable to eat regularly, the response would be to have a feeding tube put down her nose to teach her what it feels like to have a full stomach and to be hungry. Of course, we'd like her to figure this out without the tube.
What's going on with the hydrocephalus?
Another question without an answer. We know she has responded to the shunt surgery as her head circumference has gone down since birth. At birth, she measured 43 cm, on Thursday she measured 40 cm. This is actually a whole centimeter smaller than her head measured at my last ultrasound! However, we don't know what all is going inside of her head and how her brain tissue has been affected. Hopefully the MRI will answer some of these questions and show a better picture of the ventricles.
What do you need?
Right now, we need a lot of prayer for strength and perseverance. We are staying in the hospital still in rooms designated for parents of ICN/NICU babies. It's been a great blessing to be just a hallway away from our girl. When we get home, a meal calendar will be set up and I'll post the details of how and who to contact. But for now, we are trucking along as best we can.
We appreciate all the prayers for our little one. She is quite the amazing little lady and we love having her on the outside. It's incredible to watch her fight and win so many little battles.
Aurelia is currently living in the Intermediate Care Nursery (ICN). This is a step up from her first home in the NICU, and we are so pleased that she's progressed enough to be up here. She is still living in a pod as she's had a little trouble with temperature control. She's also getting some photo therapy to combat some jaundice. Most of her fluids are given through an IV drip, but we have feedings with her every three hours trying to establish some weight gain and normalcy. For the most part, she continues to exceed expectations. She is alert and responsive despite having a very tough first week. In the next week, we'll begin meeting with specialists including eye doctors, occupational therapists, neurologists, developmental pediatricians, and all kinds of other incredible doctors. She will have an MRI in the next week to look at her response to the shunt surgery and to get a better look at her brain structures.
How long with Aurelia be in the hospital?
The answer to that is still unknown, although we tentatively hope it will be in the next week. In order for her discharged, she needs to be on a regular feeding schedule, gaining weight, able to come off the IV drip, and maintain her temperature (although we think this last one is under control). She also needs to see some of the specialists as an in patient. If she's unable to eat regularly, the response would be to have a feeding tube put down her nose to teach her what it feels like to have a full stomach and to be hungry. Of course, we'd like her to figure this out without the tube.
What's going on with the hydrocephalus?
Another question without an answer. We know she has responded to the shunt surgery as her head circumference has gone down since birth. At birth, she measured 43 cm, on Thursday she measured 40 cm. This is actually a whole centimeter smaller than her head measured at my last ultrasound! However, we don't know what all is going inside of her head and how her brain tissue has been affected. Hopefully the MRI will answer some of these questions and show a better picture of the ventricles.
What do you need?
Right now, we need a lot of prayer for strength and perseverance. We are staying in the hospital still in rooms designated for parents of ICN/NICU babies. It's been a great blessing to be just a hallway away from our girl. When we get home, a meal calendar will be set up and I'll post the details of how and who to contact. But for now, we are trucking along as best we can.
We appreciate all the prayers for our little one. She is quite the amazing little lady and we love having her on the outside. It's incredible to watch her fight and win so many little battles.
Friday, August 27, 2010
Introducing Aurelia Kathleen Joy Hawkins
First Family Photo
Precious Little Lamb
Getting her diaper changed
Being held by Mom for the first time!
Aurelia is doing great. She had her surgery on Tuesday evening, she was off the ventilator less than 24 hours later, and she has been moved from the NICU to the ICN unit. We'll post the birth story, the surgery story, and the "where we are now story" now that we have our laptop in the hospital with us.
Thank you for praying with us and being patient as we update!
-Team Hawkins
Tuesday, August 24, 2010
She's here!
Just a quick note to announce that Aurelia Kathleen Joy Hawkins arrived yesterday evening at 4:51 PM. Mom is doing well after a little scare with high blood pressure. I hope to be moved from special care to the regular postpartum wing. Aurelia weighed in at 6 lbs 15 oz and came out crying. She's strong and ready for her surgery. Joey got to hold her and even change a diaper (his first ever!) in the NICU last night. I'm looking forward to holding her as soon as they can wheel me over there! The surgery should be this afternoon, although we're waiting for confirmation. Meanwhile, we're both pretty worn out. We'll post a more detailed update later today. Thanks for all the love and support!
Saturday, August 14, 2010
While We Wait
It's offficial, at least mostly official. Baby Hawk will arrive via c-section on August 23rd at 38 weeks. After my most recent scan and ob/gyn appointment the decision was made to wait an extra week to ensure lung development. I go in for an amniocentisis at 11:00 AM on the 23rd, and was told to have my bags packed and to be ready for delivery. The amnio is one more safety net to make sure that she is as ready for delivery as possible. We are so excited to meet our little lady and enjoyed watching her rub her eyes and kick the ultrasound tech during the scan.
Many people have asked me why our doctors are waiting to deliver. At one point there was talk of delivering as early as 35 weeks. The tricky part of dealing with hydrocephalus is weighing the pressure on the brain versus the regular development of a baby. Since our baby will be having brain surgery shortly after birth (anywhere from a few days to a week), it is important that she is as developed and ready to fight as possible.
So, now we wait! Here are some snippets of life while waiting for Baby Hawk:
We celebrated Joey's 32nd birthday with friends . . .
and cupcakes. . .
I had a baby shower.
Yes, that is a box of mayonnaise, and yes, I am so excited about it. If you are from the south or have lived there, you have most likely experienced the wonderful condiment that is Duke's mayonnaise. I hate mayonnaise, but I love Duke's! I received this thoughtful gift from friends in Virginia.
We also had a visit from some of our very best friends from Central Asia/Switzerland (we lived with them in K-town).
It was so fantastic to have them with us, even though it was only for a short visit. But we've learned that with friends all over the world, it's important to take any moment you can get! I should also point out that all of these pictures are from one giant weekend of parties and celebrations.
We capped off this full weekend with a Sounders game
I don't think that this post would be complete without mentioning that while we celebrate birthdays, visiting friends, and upcoming BIRTH days; we are also mourning and processing through the loss of friends and colleagues in Central Asia. We were thankful to have our friends from that part of the world with us when we all received the news of the tragic loss of a medical team in Afghanistan. As I've talked to other friends that are back in the states working through this news, a common conversation has been how difficult it is to grieve with our community while being away from that community. Transitioning back to life over here has been difficult and ongoing; we really miss life over there. And as we sit in the comfort of our little apartment over here, we grieve with our loved ones over there and all over the world. I can't think of words to express this type of emotion. As Joey said, people have been trying to put words to grief and loss for thousands of years and nothing is quite adequate. Senseless tragedy is always senseless and tragic. . . In light of God's sovereignty, we mourn the loss of friends that were great storytellers, exceptional volleyball players, selfless givers, and fun to have at poker nights.
And to make this post even more full of news, my younger sister had her baby yesterday afternoon. Padraig Gordon Brooks was born via c-section at 2:32 PM, 7lbs 10 oz. He's one cute little guy and we are all so in love with him already.
Many people have asked me why our doctors are waiting to deliver. At one point there was talk of delivering as early as 35 weeks. The tricky part of dealing with hydrocephalus is weighing the pressure on the brain versus the regular development of a baby. Since our baby will be having brain surgery shortly after birth (anywhere from a few days to a week), it is important that she is as developed and ready to fight as possible.
So, now we wait! Here are some snippets of life while waiting for Baby Hawk:
We celebrated Joey's 32nd birthday with friends . . .
and a piñata that ended up on fire. . .
and friends that hold flaming pinatas for the birthday boy to hit.
We also had a visit from some of our very best friends from Central Asia/Switzerland (we lived with them in K-town).
It was so fantastic to have them with us, even though it was only for a short visit. But we've learned that with friends all over the world, it's important to take any moment you can get! I should also point out that all of these pictures are from one giant weekend of parties and celebrations.
We capped off this full weekend with a Sounders game
Baby Girl is a fan already! She kicked the whole game!
I don't think that this post would be complete without mentioning that while we celebrate birthdays, visiting friends, and upcoming BIRTH days; we are also mourning and processing through the loss of friends and colleagues in Central Asia. We were thankful to have our friends from that part of the world with us when we all received the news of the tragic loss of a medical team in Afghanistan. As I've talked to other friends that are back in the states working through this news, a common conversation has been how difficult it is to grieve with our community while being away from that community. Transitioning back to life over here has been difficult and ongoing; we really miss life over there. And as we sit in the comfort of our little apartment over here, we grieve with our loved ones over there and all over the world. I can't think of words to express this type of emotion. As Joey said, people have been trying to put words to grief and loss for thousands of years and nothing is quite adequate. Senseless tragedy is always senseless and tragic. . . In light of God's sovereignty, we mourn the loss of friends that were great storytellers, exceptional volleyball players, selfless givers, and fun to have at poker nights.
And to make this post even more full of news, my younger sister had her baby yesterday afternoon. Padraig Gordon Brooks was born via c-section at 2:32 PM, 7lbs 10 oz. He's one cute little guy and we are all so in love with him already.
Wednesday, July 28, 2010
Saying the things I don't know how to say
We are so thankful for all our friends that are praying with us as we navigate through this time. I have kept every email that I've received and turn to them for encouragement when I find it difficult to pick myself up or have particularly rough moments. And I've noticed that sometimes our friends are able to put words to things that I'm feeling and working through but couldn't voice myself. My favorite Finnish friend has a much better command of the English language than me. Throughout our relationship she has been able to hit the nail right on the head and help me process through all the thoughts that are moving around in my brain. She has a gift for saying the things that I don't know how to say. In a recent email, she wrote about the reality of blessing in difficult situations. It's easy to say we're blessed when things are peachy, but what about when things are not so perfect by the world's standards? I've had several people tell me that I'm taking this really well or that they're surprised by our strength. To these people, I say thank you and should probably mention that there are definitely some dark moments where I don't look so put together and feel pretty weak. But I'd also like to say that I feel absolutely blessed knowing this little girl is on her way. As Sari put it:
Lady Hawk is a little miracle given by God in all possible cases; perfectly healthy, or with some issues, needing surgery, or not.
I am sure God does not want any of us to be sick, but he does allow it, and it does not take any of the blessings away. In fact, I know that God can bring about blessings through the nasty things that do happen to us.
For the last three years, I have been angry at the ER doctor who sent me to surgery for my first miscarriage. Not only are we still paying the hospital bill for the D and C, but it was a very difficult recovery emotionally and physically. That nasty scar that I didn't even know I had showed up on my 21 week ultrasound and caused enough concern for a follow up scan. The scar is gone now, but I am so thankful it was there. I can't know what would have happened without that 28 week scan. I do know that with the information gathered at each scan we are able to rule out different things, plan for different outcomes, and cover this little lady in prayer in a very intentional way. And I do know that her future is a lot brighter with all this information. I don't think that I went through the trauma of my first loss to have a scar on my scan. But I know that I'm less angry at the ER doctor now. And I'm thankful that God used it to bring about this little blessing. These are the things I'm processing through each day. I'm so thankful for friends that help me work my way through it.
Lady Hawk is a little miracle given by God in all possible cases; perfectly healthy, or with some issues, needing surgery, or not.
I am sure God does not want any of us to be sick, but he does allow it, and it does not take any of the blessings away. In fact, I know that God can bring about blessings through the nasty things that do happen to us.
For the last three years, I have been angry at the ER doctor who sent me to surgery for my first miscarriage. Not only are we still paying the hospital bill for the D and C, but it was a very difficult recovery emotionally and physically. That nasty scar that I didn't even know I had showed up on my 21 week ultrasound and caused enough concern for a follow up scan. The scar is gone now, but I am so thankful it was there. I can't know what would have happened without that 28 week scan. I do know that with the information gathered at each scan we are able to rule out different things, plan for different outcomes, and cover this little lady in prayer in a very intentional way. And I do know that her future is a lot brighter with all this information. I don't think that I went through the trauma of my first loss to have a scar on my scan. But I know that I'm less angry at the ER doctor now. And I'm thankful that God used it to bring about this little blessing. These are the things I'm processing through each day. I'm so thankful for friends that help me work my way through it.
Wednesday, July 21, 2010
33 Weeks
I had my 33 week scan today. Lady Hawk is looking as cute as ever. Her head is measuring about 7 weeks ahead. The rest of her body is right on target and working great. My perinatologist decided she wants to be certain that her lungs are developed before we deliver. We'll have another scan in three weeks (with two ob/gyn appointments in between), an amniocentesis right when I hit 37 weeks, and delivery via c-section around August 16th. After she's born, she will probably have her shunt placed within the first few days to begin relieving the pressure on her head. I don't know what happens after that. But I'm alright with that for now. I've realized that I'm more comfortable with a vague prognosis at this point, which is good because that's all we can do at this point.
Here are just a few little snapshots of what is going on inside my head and heart:
-Joey comes home on Monday. I'm a day away from counting down the hours.
-My doctors have all been wonderful. I feel so blessed and fortunate to have these wonderful men and women advocating and caring for my family.
-I can't wait to meet our baby girl. She is going to be loved to pieces. We feel so fortunate to have this little gift coming our way. Our prayer has always been that she would be exactly the person God created her to be. We are so excited to see what that looks like in real time!
-Yes, a lot of this is difficult. My eyes well up with tears often. But I don't feel defeated. I don't feel lost. I feel very hopeful. I take comfort in the knowledge that God knows the outcome of this situation.
-We have an amazing support network. So many people are praying for little Lady Hawk and hoping for the best possible outcome. She is smothered in prayer.
-Having a baby in 4 weeks is a little daunting. I don't feel prepared and need to make many trips to Babies R Us between now and then.
-They've done a few 3D ultrasounds at my appointments. Baby Hawk looks a lot like Papa Pandiani's baby pictures. She might just carry on Sarah's nickname of "Little Bill."
I've had several people ask me questions about hydrocephalus, shunts, procedures, etc. I'm going to try and address some of that here. But for any anxious readers, I've put some informational links on the right hand side of the blog.
Here are just a few little snapshots of what is going on inside my head and heart:
-Joey comes home on Monday. I'm a day away from counting down the hours.
-My doctors have all been wonderful. I feel so blessed and fortunate to have these wonderful men and women advocating and caring for my family.
-I can't wait to meet our baby girl. She is going to be loved to pieces. We feel so fortunate to have this little gift coming our way. Our prayer has always been that she would be exactly the person God created her to be. We are so excited to see what that looks like in real time!
-Yes, a lot of this is difficult. My eyes well up with tears often. But I don't feel defeated. I don't feel lost. I feel very hopeful. I take comfort in the knowledge that God knows the outcome of this situation.
-We have an amazing support network. So many people are praying for little Lady Hawk and hoping for the best possible outcome. She is smothered in prayer.
-Having a baby in 4 weeks is a little daunting. I don't feel prepared and need to make many trips to Babies R Us between now and then.
-They've done a few 3D ultrasounds at my appointments. Baby Hawk looks a lot like Papa Pandiani's baby pictures. She might just carry on Sarah's nickname of "Little Bill."
I've had several people ask me questions about hydrocephalus, shunts, procedures, etc. I'm going to try and address some of that here. But for any anxious readers, I've put some informational links on the right hand side of the blog.
Friday, July 9, 2010
THe Hawkins Family Update
In my last post (a whole 3 months ago!), I shared our exciting news about our pregnancy. Shortly after that post, we found out we are having a precious little girl. The ultrasound tech noticed some scar tissue during the scan that needed to be looked at again as the baby grew. We were reassured that it was probably nothing and that this was just a precaution. We joked that it wouldn't be a normal Team Hawkins appointment without at least one speed bump. And we left our 21 week scan bubbling with joy and an appointment card for a follow-up scan at 28 weeks. Joey left for his work rotation at the beginning of May, I headed up to Alaska to visit some favorite friends for a week, and life went on as usual. I eagerly awaited my 28 week scan to get another look at our little lady. I wasn't worried at all.
Since Joey was/is out of town, my step-mom came with me. As the tech did the ultrasound, she talked us through different body parts we were looking at and different measurements she was taking. I noticed that the head was measuring 2 weeks ahead, but I've heard so many stories of the vast differences in growth rates that I didn't think anything of it. She showed us the heart, the kidneys, the bladder, the stomach, little legs kicking around, little hands waving, confirmation that this is a little lady, and a nice long look at the spine. She mentioned that she was having a hard time finding the scar tissue and wanted to confer with the perinatologist (high risk pregnancy doctor) and look at my old scan to see where she should be searching. She came back a few minutes later with the perinatologist who told me that they couldn't find the scar tissue. She scanned through the screens of the ultrasound and said, "Are you looking at the screen? This shouldn't be here." She went on to explain that the left and right ventricles of our baby's brain were measuring twice the normal size. She used words like "concerning" and "serious issue." She then told me that she wanted me to meet with the genetic counselor again to talk about testing options. We had met with the genetic counselor after my previous scan due to a normal variant in the baby's heart called a bright spot. At that appointment, we decided not to do any testing and were encouraged not to by the counselor as it had a higher likelihood of false positive than anything actually being wrong. At this appointment she again said that the testing available wouldn't tell us anything we didn't already know and would only rule out things that we had already ruled out. At this point I was told that the preliminary diagnosis for our baby's condition is something called hydrocephalus (water on the brain). I was walked through the various outcomes of hydrocephalus ranging from a simple brain surgery after birth (simple brain surgery, that sounds like an oxymoron) to developmental delays to motor skill delays to, well the list got a little scarier from there and we're not crossing that bridge of worst case scenario. She explained that we can only guess outcomes at this point and we'll have to wait and see as the pregnancy progresses and as the baby develops. One thing I held onto as we met is that she emphasized this was not a question of survival for our little lady, more a question of what life could look like. I left the appointment with another scan scheduled for two weeks later and a very vague view of what was wrong and what could go wrong.
I am now almost 32 weeks pregnant. At my last perinatologist appointment, the diagnosis of hydrocephalus was confirmed. At 30 weeks Baby Hawk's head was measuring about 4 weeks ahead. I've been told to expect to deliver around 36 weeks most likely via c-section. Between now and then I'll see either my ob/gyn or my perinatologist every week (starting next Thursday). At each appointment we should get a little more or an idea of what delivery and post delivery will look like for both me and the little lady. And each moment between now and then, I try to concentrate on the things I know and not dwell in the things that might happen.
This is all a lot of information for one update, but at the same time I feel like I lack so much information. For the sake of time and in an effort to actually get a post up, I'm going to end this update here. In the next few days, I hope to post some about the processing we've been going through. We've decided that this blog will be our way of getting information and updates out to friends and family. The tricky part is actually doing the updates. I know that as time goes on and appointments become more frequent, there will be a lot more information to get out. But for today, I'm going to enjoy the sunshine and try to stay cool in my non AC apartment!
Since Joey was/is out of town, my step-mom came with me. As the tech did the ultrasound, she talked us through different body parts we were looking at and different measurements she was taking. I noticed that the head was measuring 2 weeks ahead, but I've heard so many stories of the vast differences in growth rates that I didn't think anything of it. She showed us the heart, the kidneys, the bladder, the stomach, little legs kicking around, little hands waving, confirmation that this is a little lady, and a nice long look at the spine. She mentioned that she was having a hard time finding the scar tissue and wanted to confer with the perinatologist (high risk pregnancy doctor) and look at my old scan to see where she should be searching. She came back a few minutes later with the perinatologist who told me that they couldn't find the scar tissue. She scanned through the screens of the ultrasound and said, "Are you looking at the screen? This shouldn't be here." She went on to explain that the left and right ventricles of our baby's brain were measuring twice the normal size. She used words like "concerning" and "serious issue." She then told me that she wanted me to meet with the genetic counselor again to talk about testing options. We had met with the genetic counselor after my previous scan due to a normal variant in the baby's heart called a bright spot. At that appointment, we decided not to do any testing and were encouraged not to by the counselor as it had a higher likelihood of false positive than anything actually being wrong. At this appointment she again said that the testing available wouldn't tell us anything we didn't already know and would only rule out things that we had already ruled out. At this point I was told that the preliminary diagnosis for our baby's condition is something called hydrocephalus (water on the brain). I was walked through the various outcomes of hydrocephalus ranging from a simple brain surgery after birth (simple brain surgery, that sounds like an oxymoron) to developmental delays to motor skill delays to, well the list got a little scarier from there and we're not crossing that bridge of worst case scenario. She explained that we can only guess outcomes at this point and we'll have to wait and see as the pregnancy progresses and as the baby develops. One thing I held onto as we met is that she emphasized this was not a question of survival for our little lady, more a question of what life could look like. I left the appointment with another scan scheduled for two weeks later and a very vague view of what was wrong and what could go wrong.
I am now almost 32 weeks pregnant. At my last perinatologist appointment, the diagnosis of hydrocephalus was confirmed. At 30 weeks Baby Hawk's head was measuring about 4 weeks ahead. I've been told to expect to deliver around 36 weeks most likely via c-section. Between now and then I'll see either my ob/gyn or my perinatologist every week (starting next Thursday). At each appointment we should get a little more or an idea of what delivery and post delivery will look like for both me and the little lady. And each moment between now and then, I try to concentrate on the things I know and not dwell in the things that might happen.
This is all a lot of information for one update, but at the same time I feel like I lack so much information. For the sake of time and in an effort to actually get a post up, I'm going to end this update here. In the next few days, I hope to post some about the processing we've been going through. We've decided that this blog will be our way of getting information and updates out to friends and family. The tricky part is actually doing the updates. I know that as time goes on and appointments become more frequent, there will be a lot more information to get out. But for today, I'm going to enjoy the sunshine and try to stay cool in my non AC apartment!
Friday, April 9, 2010
Going Public
I've had several people ask me if I've abandoned my blog. The honest answer is that I've been avoiding it for two reasons. First, I still couldn't decide on a name or theme. The blog makeover is a work in progress, but I've settled on the name "All Things" inspired by one of my favorite friends, Carlee Stellfox Loya. As she stated in comment to my last post, "I propose 'All Things' referencing Paul's 'I can do all things' where he's referring to his ability to be content. Contentment is the tallest order of those with itchy feet. You're in a season where contentment will not come easily - where you used to rely intensely on the Lord for safety and health in Kabul, in GH you need His strength to see purpose in your clean, comfortable (boring?) home and surroundings. Only His contentment can keep you from resenting the very things you miss when you are out in the world!" I love having people in my life that know me so well. Please bear with me as I continue the reconstruction of the blog.
The second reason I've been avoiding this little space on the internet is a bit of a secret. As this secret gets bigger, it becomes less and less of a secret. On Sunday I'll be 19 weeks pregnant. We've known our news since the end of 2009, but with our past losses we've been hesitant to be too open. However, as I approach the halfway mark and realize that I can no longer attempt to hide my stomach, I feel that it's time to go public. This pregnancy has been far different than any of my losses. I've had very little to worry about, have been constantly sick, and I'm now feeling little kicks and punches from Baby Hawk. Our due date is September 5th, our anatomy scan is April 28th, and we are finding out if we're having a boy or a girl. And I think that covers it for now.
I would like to say that my revamped blog will not be a pregnancy blog or a mom blog. I'm sure the topic will come up from time to time, and I'm certain I'll post about our newest addition as he/she will be an important part of the make up of Team Hawk. But being pregnant and a mom (and all that entails) will not become the exclusive content. Don't look for ultrasound pictures and bump pictures here, or stories about bodily functions and diaper contents. That's not what I want to write about.
The second reason I've been avoiding this little space on the internet is a bit of a secret. As this secret gets bigger, it becomes less and less of a secret. On Sunday I'll be 19 weeks pregnant. We've known our news since the end of 2009, but with our past losses we've been hesitant to be too open. However, as I approach the halfway mark and realize that I can no longer attempt to hide my stomach, I feel that it's time to go public. This pregnancy has been far different than any of my losses. I've had very little to worry about, have been constantly sick, and I'm now feeling little kicks and punches from Baby Hawk. Our due date is September 5th, our anatomy scan is April 28th, and we are finding out if we're having a boy or a girl. And I think that covers it for now.
I would like to say that my revamped blog will not be a pregnancy blog or a mom blog. I'm sure the topic will come up from time to time, and I'm certain I'll post about our newest addition as he/she will be an important part of the make up of Team Hawk. But being pregnant and a mom (and all that entails) will not become the exclusive content. Don't look for ultrasound pictures and bump pictures here, or stories about bodily functions and diaper contents. That's not what I want to write about.
Wednesday, February 10, 2010
The Holding Pattern
I was so proud of myself when I was blogging all the time back in Kabul. But now that we're home, I find it difficult to find anything to blog about. Yes, life has been exciting, challenging, and fun since we got back. But I spend a lot of time feeling really normal. The Hawk and I feel like we've entered a season of waiting. We're people that enjoy going, seeing, doing. We love adventures, we love living in far away places, we love dreaming and planning and then getting right to it. But for the time being, we're in the holding pattern. We know that it's not forever. We talk often about our "What's next?" And we know that we're where we're supposed to be, at least for awhile. It's just a very abrupt shift in life's gears to go from living in Kabul to living in Gig Harbor. And I seem to find all of this hard to put in words. To some extent, I feel that my blog is in the holding pattern too. With that said, I'm starting to process and grasp what life in the States looks like for Team Hawk. I'm getting ready for new things and new experiences. I'm trying to think of an interim title and subject matter for my blog (big important things). I'm ready to settle into what life will be like for me here. So, look for more posts from me in the not too distant future. And I'm open to blog name ideas!
Wednesday, January 6, 2010
New Year, new word
Last January, I posted that the word that I was embracing for the year was FAITH. As I look back at the year, faith was a fitting word. We faced the everyday realities of living overseas in a conflict zone, we had a few heartbreaking losses, and we had to make some impossible decisions. To be perfectly honest, 2009 wasn't one of my favorite years. I felt like each day I had to cling to faith and trust that by God's grace I would make it through all the obstacles life had thrown at me.
One of the toughest parts of 2009 was our decision to move from Kabul. We really enjoyed where we lived and lived with some great people. In our perfect little plan we hoped to stay in Kabul for at least three years. But we were also facing some difficult behind the scenes stuff. While we were visiting home last July, we experienced our third pregnancy loss, this time twins. I've thought a lot about how to address this on my blog since it is public. The last few months I've gone back and forth about whether I would mention it at all. However, I want people to understand why we left Kabul. And my miscarriages are a very big part of my life and the person that I am. On the other hand, I do not want to go into much detail on it since it was such a painful time for me.
We were fortunate that the miscarriage happened while we were in Virginia and under the care of a very kind doctor. Since it was my third loss, I did the recurrent pregnancy loss screening (RPL). While we waited for the results we had two specific prayers. 50% of RPL situations are without reason, we wanted a clear diagnosis. And as we awaited our departure back to Kabul, we wanted a definite answer on whether I could be treated in Afghanistan. Both of our prayers were answered. I was diagnosed with a very easy to treat blood clotting issue. However, easy to treat doesn't necessarily mean Kabul easy. We spent a lot of time wrestling with this and continue to wrestle with our decision. But it's pretty obvious that we decided to move to the states.
Some bullet points of information:
- We plan to be in the states for a few years. During that time we hope to have a healthy pregnancy and we are also looking into the possibility of adoption. We have always desired to have a family of adopted and natural children. We don't know what the timeline for that looks like, but it's all on the table.
- Losing our babies and leaving Kabul are the hardest things I have faced in my adult life. I have a hard time talking about both situations.
- Joey is still working for the same company and flying all over the place.
- We're currently staying with my parents. This is partly because we don't know exactly where we'll end up and partly because Joey is gone a lot for work. We are considering buying a house, although we don't know when or where. Not to mention homeownership sounds way too normal and settled for us.
- We have lots of travels that we're dreaming about, including a trip to Kabul in the spring. We've found that if we stay "home" for more than a month we start to feel itchy. For now that means a lot of US travel with international adventures when possible.
As I look back on the last year and forward to this new decade, I decided the word JOY was appropriate. I want to be joyful whether life is difficult or wonderful. I want to live in anticipation. I want to recognize that even the most dismal circumstances have elements of hope. I look forward to 2010 and pray that my joy will be full throughout this year.
One of the toughest parts of 2009 was our decision to move from Kabul. We really enjoyed where we lived and lived with some great people. In our perfect little plan we hoped to stay in Kabul for at least three years. But we were also facing some difficult behind the scenes stuff. While we were visiting home last July, we experienced our third pregnancy loss, this time twins. I've thought a lot about how to address this on my blog since it is public. The last few months I've gone back and forth about whether I would mention it at all. However, I want people to understand why we left Kabul. And my miscarriages are a very big part of my life and the person that I am. On the other hand, I do not want to go into much detail on it since it was such a painful time for me.
We were fortunate that the miscarriage happened while we were in Virginia and under the care of a very kind doctor. Since it was my third loss, I did the recurrent pregnancy loss screening (RPL). While we waited for the results we had two specific prayers. 50% of RPL situations are without reason, we wanted a clear diagnosis. And as we awaited our departure back to Kabul, we wanted a definite answer on whether I could be treated in Afghanistan. Both of our prayers were answered. I was diagnosed with a very easy to treat blood clotting issue. However, easy to treat doesn't necessarily mean Kabul easy. We spent a lot of time wrestling with this and continue to wrestle with our decision. But it's pretty obvious that we decided to move to the states.
Some bullet points of information:
- We plan to be in the states for a few years. During that time we hope to have a healthy pregnancy and we are also looking into the possibility of adoption. We have always desired to have a family of adopted and natural children. We don't know what the timeline for that looks like, but it's all on the table.
- Losing our babies and leaving Kabul are the hardest things I have faced in my adult life. I have a hard time talking about both situations.
- Joey is still working for the same company and flying all over the place.
- We're currently staying with my parents. This is partly because we don't know exactly where we'll end up and partly because Joey is gone a lot for work. We are considering buying a house, although we don't know when or where. Not to mention homeownership sounds way too normal and settled for us.
- We have lots of travels that we're dreaming about, including a trip to Kabul in the spring. We've found that if we stay "home" for more than a month we start to feel itchy. For now that means a lot of US travel with international adventures when possible.
As I look back on the last year and forward to this new decade, I decided the word JOY was appropriate. I want to be joyful whether life is difficult or wonderful. I want to live in anticipation. I want to recognize that even the most dismal circumstances have elements of hope. I look forward to 2010 and pray that my joy will be full throughout this year.
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