...since I last managed to find time to write a post!
Needless to say, life has been crazy. Or it feels like it, at least.
So, to start where we left off...
Jillian had her second open heart surgery on May 12th and did extremely well! The day before, JR, my mom, Oliver, Athan, myself and of course Jillian all wore Superman shirts while JR and I took Jilly to her pre-op appointments. Really, it couldn't hurt to summon the strength of the man of steel, right? And, I'm pretty sure it worked! We were told when we first found out about her condition, to plan for 4-6 weeks for recovery (if my memory is correct, which really? Who knows?!?!) Her surgery was bright and early on a Thursday and she was released to go home on Tuesday. Yes, only FIVE DAYS of recovery! Thank God for that!! We were told to expect her to have horrible headaches, which would cause her to cry for days or even weeks straight. We were told it would be possible that she would need to be weaned off the pain meds post-op. We were told that pretty much everything we had worked on with her physically, with her physical therapist, would need to be done all over again. We were told she probably would not be able to put her hands above her head or even bring her hands in to the center of her body. There were so many things we were expecting to happen after surgery- all of which would cause some sort of delay, big or small. Well, none of these things happened! The morning after her surgery, JR and I walked into the Cardiac ICU and heard a baby crying at the top of their lungs. We looked at each other, like, "Oh no! Is that her?" We rushed down the hall to her room to find her contently sitting in her bed, with her arms behind her head and a look on her face that was something like, "Aww... just relaxing...." Her nurse assured us that she was indeed having headaches, but the pain meds were making them tolerable for her and, "oh just wait until she's off the 'good stuff'. Get ready for crying..." I listened intently as the medical staff did their rounds that morning, as I had done with her first OHS, and was surprised when the head doc that morning kinda laughed after a pretty uneventful report from one of the fellows. "So... she's doing fine?" was pretty much his only response, followed by, "Ok then, let's move on," and off they went to the next kiddo. Less than 24 hours after surgery, she was discharged from the CICU and moved to the Cardiac Progressive Care Unit- the step-down unit at Children's, on nothing but Tylenol for pain. Surely, I thought, the headaches will be coming... But they never did. Thankfully, Jillian has nice, wide-open, almost normal Pulmonary Arteries, which allow the blood from the top part of her body to flow with much less pressure than other little one's with her condition. Because of this, we're told, she didn't seem to get the headache's that are common after this surgery. (I won't go into the details of what the surgery entailed as far as changing the structure of her heart, but suffice it to say, her circulatory system is nothing close to normal, thus the pressure issues.)
The days that followed were (thankfully!) pretty uneventful. We spent all of Friday, Saturday and Sunday with Jilly in her room, half waiting for her to start screaming at any second. But still, she seemed to be fine. She found ways to entertain herself- slapping at her nasal cannula until it was just right in her mouth so that she could use it to blow bubbles (hehe the positive of being on oxygen!), shaking a rattle while babbling or bringing her toes to her mouth (another thing we were told she would not be able to do...) Also on Sunday, we were surprised with a visit from my Aunt and Uncle from Minnesota who were in town for my brothers wedding! :):):)
Monday JR went back to work and at that time we were still unsure of when Jilly would be going home. Our nurses were guessing, "maybe by the end of the week... maybe Thursday?" so Monday afternoon when Jillian's surgeon walked in and said he thought she'd be leaving the next day, I was shocked. Her surgeon misinterpreted my shock for disappointment, thinking I thought we were going home that day. "No doc, I'm just shocked..." was my response, I'm pretty sure...
We left the next day by noon (Jilly wearing a Wonder Women t-shirt!), happy to have our baby girl back at home and ready for craziness to follow, in the form of my brothers wedding, moving, Athan's birthday, t-ball for Oliver, weekly PT and OT appointments for Jillian along with... more appointments than I care to think of, JR's and my anniversary, lots of laughs and tears, me taking a condensed CNA class to be Jillian's at home care provider, Oli starting pre-school and bringing with that a round of sickness for us all and Jilly hitting about a million milestones... sitting, crawling, three teeth, saying, "mama" and now pulling up and cruising along the furniture.
Needless to say, I am so proud of my sweet girl! We still have some hurdles- she still is not eating very well by herself so we are continuing her g-tube feeds through the night, she is still on oxygen at night and off and on during the day, depending on how her sats are, the winter is coming so we are trying to prepare the best we can, not entirely sure what that will bring with it and of course there is another surgery, which although it is still looming far off in the distance, seems to keep itself somewhere near the front of my mind.
I think the easiest way to sum up the last five months is to say that our life continues to be a roller coaster, full of ups and downs, and sometimes it's a confusing place for me to be- on the one hand I almost desperately long for someone else to understand, but on the other hand my biggest wish is for no one else to ever have to understand. Some days I feel like life couldn't be any better- I have an amazing husband, two boys wise beyond their years and a sweet little girl who continues to inspire me everyday- and other days (though those factors still remain positives) I feel like this is all too much to handle, wonder when it will get easier, call up the best friend I could ever ask for to get out for some much needed Mommy time and priceless laughs (Thank you, Tammy!!), go home and kiss my sleeping babies and wake up to do it all again the next day.
Tuesday, October 11, 2011
Saturday, May 7, 2011
Four Days...
So the countdown has officially begun. Just four days from now our sweet Jilly will be just hours away from her next surgery. I don't think we are really ready for this, but somehow I'm full of hope. Jillian's catheter procedure went extremely well. The doctor who did the procedure said this was the best he has seen a HLHS kids heart, post Norwood (surgery #1) in a "long time". They originally scheduled the procedure to take 3 1/2 hours from start to finish, with some recovery time after, but it took less than 2 when all was said and done. Jilly did end up needing oxygen for a couple of days following the cath, but quickly weaned herself off. We're not sure if this was some sort of side effect of the anaesthesia or if this was because she still could be recovering from the Human Metapneumovirus... either way though, she's off it again now and is doing well :)
Thursday, April 14, 2011
Change of Plans
Jillian was admitted into Children's hospital CPCU (Cardiac Progressive Care Unit) Saturday night after testing positive for Human Metapneumovirus (a nasty respiratory virus, similar to RSV) on Thursday. She seemed to be okay Friday and through Saturday afternoon, then all of the sudden her sats dropped to the low 60's (with her heart condition her oxygen levels should be between 75 and 85). After a quick call to Children's Cardiology her and I left for Children's, at about 8:30 pm, expecting a 24 hour observation period and oxygen therapy for a short time. I had her pulse-ox on her the whole drive to Denver where she was mostly high 60's to low 70's. Then when we got to Children's she dropped to 58. SCARY! My little girl is almost always right at 80 without any oxygen, so to see 60's then 50-something show up on the monitor terrified me! Thank God we left for Children's when we did...
Because they were expecting us, they had someone almost immediately to ready to take Jilly into the ER, but once she saw the pulse-ox she decided to bypass the ER altogether and took her straight upstairs to the CPCU. The nurse put her on their pulse-ox and she dropped back into the high 50's and then all of the sudden down to 48 for a good 30 seconds or so. Ugh! Not a fun moment! Luckily though, they were able to get her saturation's stabilized pretty quickly as soon as the oxygen was started.
With the Human Metapneumovirus comes this really rough, barky, horrible cough. And with that comes a whole bunch of mucus and junk, so sweet Jilly struggled for a few days, trying to cough up the crud and then subsequently choking on it making her de-sat over and over again. Finally Tuesday afternoon she really seemed to turn the corner. She went from being almost lethargic and clearly miserable to playful and smiley and "herself again".
Our 24 hour observation turned into 4 nights and 3 1/2 days in the hospital, with her having to go home on oxygen and in the end the ultimate decision to postpone her catheter procedure and surgery for a couple of weeks.
The new dates are: May 2nd for the catheter, May 11th for pre-op and May 12th for surgery.
I can't decide if I'm relieved to have a couple more weeks to prepare myself for her surgery or more anxious that it will be that much longer before this phase in her care is over. A bit of both, I suppose...
Because they were expecting us, they had someone almost immediately to ready to take Jilly into the ER, but once she saw the pulse-ox she decided to bypass the ER altogether and took her straight upstairs to the CPCU. The nurse put her on their pulse-ox and she dropped back into the high 50's and then all of the sudden down to 48 for a good 30 seconds or so. Ugh! Not a fun moment! Luckily though, they were able to get her saturation's stabilized pretty quickly as soon as the oxygen was started.
With the Human Metapneumovirus comes this really rough, barky, horrible cough. And with that comes a whole bunch of mucus and junk, so sweet Jilly struggled for a few days, trying to cough up the crud and then subsequently choking on it making her de-sat over and over again. Finally Tuesday afternoon she really seemed to turn the corner. She went from being almost lethargic and clearly miserable to playful and smiley and "herself again".
Our 24 hour observation turned into 4 nights and 3 1/2 days in the hospital, with her having to go home on oxygen and in the end the ultimate decision to postpone her catheter procedure and surgery for a couple of weeks.
The new dates are: May 2nd for the catheter, May 11th for pre-op and May 12th for surgery.
I can't decide if I'm relieved to have a couple more weeks to prepare myself for her surgery or more anxious that it will be that much longer before this phase in her care is over. A bit of both, I suppose...
Wednesday, April 6, 2011
Wow, I Am SO Not Ready For This Again...
So I was wandering around Target tonight, waiting for one of Jilly's prescriptions to be filled and it hit me: I AM SO NOT READY TO GO THROUGH THIS AGAIN.
I mean, I know that we've known this was inevitable. That this would be coming up. That Jillian absolutely needs this surgery to live, but for some reason... I don't know. Today it just hit me.
JR and I have been trying to abide by this "it is what it is" kind of attitude. We try not to question why this is happening to us, our family, and most importantly why her? Why our little girl? Why are we "lucky" enough to have two kids with heart problems? We try not to ask these questions, because those are questions that will never be answered for us. Not in this life at least...
I try to accept the fact that we've been thrown into this medical world that we'd never have chosen for ourselves and certainly not for Jillian. I try to accept that this is how things are supposed to be, for whatever reason. I try to just roll with the punches- the never ending appointments, medicines everyday, literally pumping formula directly into her little tummy through a tube, keeping our family on lock down so we don't get sick (although this recently was a big FAIL), the constant worry and the guilt, oh the guilt! Because when answers are impossible to find, guilt fills their place. I try to accept this... all of this and more.
But some days are hard.
Some days I want to scream and cry and hide from the world. Some days I want to look at my daughter and believe that she is just a regular, normal, healthy little girl, at least for a little bit. Some days I wish I could just will her to take more than an ounce at a time from her bottle. Or maybe if I pray hard enough or wish on the right star, her heart will just be healed for good. I hope every. single. day. that medicine will advance fast enough to prolong her life past 20 or 25 or 30 years old.
Some days I have nothing but questions.
Today is one of those days and the only thing I know for sure is this: I'm not ready. I'm not ready to see her struggle after surgery. I'm not ready to see her in pain and not even be able to pick her up and cuddle her. I'm not ready to see her swollen, with tubes coming out of her chest. I'm not ready to watch my baby fight for her life again. I'm not ready to spend day after day just sitting there feeling like we can't do anything for her, searching for some part of her body that isn't covered in wires or bandages or monitors- somewhere that we can caress her at least a little bit so she at least knows we're there. I'm not ready to have to wait for someone to tell us, however many days after that we can finally hold her again and comfort her as best we can, knowing that we can't take away her pain. I'm not ready to watch the numbers on the monitors go up and down and the alarms go off at all hours. I'm not ready for my family to be pulled apart again. I'm not ready to try to explain to Oli and Athan why mommy and daddy are gone and that Jilly needs "to get her heart fixed," because they can't and shouldn't have to understand. Plain and simple: I am not ready.
What I am ready for, though, is for this to be over. For her to come out on the other side, the fighter that she is. I want so badly for this second heart surgery to be done and over with and out of the way so we can have a couple of years to just be the family we haven't really gotten the chance to be yet, before we have to put her through her third surgery. I want this so bad... so for now, I'll put on my big girl panties and a facade that says, "I'm strong!" I'll hide my tears from my boys and go on with our day to day life...
I'm not ready, so for the next couple of weeks I'm going to try to remember to cherish every single smile I get from her. I'll try to leave the stress out of every day and enjoy every day I have at home with all three of my kids together, no matter how crazy they make me. I'm not ready, but by surgery day I will be. Because once this is over, I know it will all be worth it.
I mean, I know that we've known this was inevitable. That this would be coming up. That Jillian absolutely needs this surgery to live, but for some reason... I don't know. Today it just hit me.
JR and I have been trying to abide by this "it is what it is" kind of attitude. We try not to question why this is happening to us, our family, and most importantly why her? Why our little girl? Why are we "lucky" enough to have two kids with heart problems? We try not to ask these questions, because those are questions that will never be answered for us. Not in this life at least...
I try to accept the fact that we've been thrown into this medical world that we'd never have chosen for ourselves and certainly not for Jillian. I try to accept that this is how things are supposed to be, for whatever reason. I try to just roll with the punches- the never ending appointments, medicines everyday, literally pumping formula directly into her little tummy through a tube, keeping our family on lock down so we don't get sick (although this recently was a big FAIL), the constant worry and the guilt, oh the guilt! Because when answers are impossible to find, guilt fills their place. I try to accept this... all of this and more.
But some days are hard.
Some days I want to scream and cry and hide from the world. Some days I want to look at my daughter and believe that she is just a regular, normal, healthy little girl, at least for a little bit. Some days I wish I could just will her to take more than an ounce at a time from her bottle. Or maybe if I pray hard enough or wish on the right star, her heart will just be healed for good. I hope every. single. day. that medicine will advance fast enough to prolong her life past 20 or 25 or 30 years old.
Some days I have nothing but questions.
Today is one of those days and the only thing I know for sure is this: I'm not ready. I'm not ready to see her struggle after surgery. I'm not ready to see her in pain and not even be able to pick her up and cuddle her. I'm not ready to see her swollen, with tubes coming out of her chest. I'm not ready to watch my baby fight for her life again. I'm not ready to spend day after day just sitting there feeling like we can't do anything for her, searching for some part of her body that isn't covered in wires or bandages or monitors- somewhere that we can caress her at least a little bit so she at least knows we're there. I'm not ready to have to wait for someone to tell us, however many days after that we can finally hold her again and comfort her as best we can, knowing that we can't take away her pain. I'm not ready to watch the numbers on the monitors go up and down and the alarms go off at all hours. I'm not ready for my family to be pulled apart again. I'm not ready to try to explain to Oli and Athan why mommy and daddy are gone and that Jilly needs "to get her heart fixed," because they can't and shouldn't have to understand. Plain and simple: I am not ready.
What I am ready for, though, is for this to be over. For her to come out on the other side, the fighter that she is. I want so badly for this second heart surgery to be done and over with and out of the way so we can have a couple of years to just be the family we haven't really gotten the chance to be yet, before we have to put her through her third surgery. I want this so bad... so for now, I'll put on my big girl panties and a facade that says, "I'm strong!" I'll hide my tears from my boys and go on with our day to day life...
I'm not ready, so for the next couple of weeks I'm going to try to remember to cherish every single smile I get from her. I'll try to leave the stress out of every day and enjoy every day I have at home with all three of my kids together, no matter how crazy they make me. I'm not ready, but by surgery day I will be. Because once this is over, I know it will all be worth it.
Thursday, March 31, 2011
Next Surgery: April 26th
Life has been so busy, I haven't had five seconds to think, let alone get to putting a "real" post on here. So, for now, this is it... Sweet Jilly's next surgery is scheduled for April 26th with a whoooole bunch of appointments in between. I will do my best to keep everyone updated. And as always, please keep Jillian in your prayers throughout the next few weeks before surgery and during her recovery after. Thank you :)
Saturday, March 12, 2011
Recovering from G-tube Surgery
Jilly's surgery went well : ) Other than needing oxygen overnight because her sats were low (even for her) she has been great! She was taken off of oxygen at about 6 this morning and has been breathing on her own ever since. She's very hungry- she hasn't eaten in over 24 hours- so we're hoping we can start feeding her small amounts soon. She was put in the CICU (Cardiac Intensive Care Unit) last night, as the whole hospital is on bed alert, meaning they are packed! This was pretty much the only place in the hospital to have any open bed spaces. We are waiting to be moved to CPCU (Cardiac Progressive Care Unit) for tonight and then hopefully home tomorrow.
Tuesday, March 8, 2011
G-tube Surgery, Friday March 11th
We've been home for almost 9 weeks now (WOOHOO!), but Jillian is still unable to keep up with the amount of feeding she needs. After multiple trips to our pediatrician, to Children's Hospital and a disastrous trip to our local ER to have her NG (Nasogastric- a thin tube put in her nose, down her throat and into her tummy) feeding tube placed after being pulled out, we've decided to go ahead with the g-tube (gastrostomy- not to be confused with "gastronomy" which, apparently, is the art and science of good eating...) surgery that will allow us to feed her directly into her tummy. With her second heart surgery quickly approaching- much quicker than JR or I would like to think about- we've decided to go this route in hopes that she will gain weight better. As of Friday she was just under 9 pounds. I'm not sure if there is a weight goal that the doctors would like her to be at, but just like the first surgery, the bigger the better! We're encouraged by the fact that she did so well after her first surgery, despite being teeny tiny, but we still feel like we need to do everything we can to give her the best fighting chance possible, and this is the best way to do that.
I have to admit that electing to put her through an unexpected surgery is wearing on me some. Maybe it's just because I've hardly had time to think about this surgery, because life with three kids 4 years old and under? Is CRAZY! Period. What with changing the baby and feeding the baby and giving the baby her medicines and WHY ARE THE BOYS RUNNING AROUND HALF-NAKED AGAIN?!?!?!, there really just are not enough hours in the day to contemplate much of anything...
In the end we're trying to trust and believe that the amazing doctors that she is lucky enough to have, are steering us in the right direction.
Thursday, February 17, 2011
Our Story
***I'm writing this post in the hopes of inspiring anyone and everyone to become a "Mircale Maker" for the Children's Hospital of Denver. Just $15 a month helps kids like Jillian. You can call :1-800-458-KIDS (5437) to donate ANY amount or go to their website www.alice1059.com . You can also text MIRACLE to 27722 to donate $10 instantly.
Thanks to Children's hospital our oldest son has a younger brother and a younger sister. Thanks to Children's hospital we can hold and hug all three of our kids. Two of our three kids would not be alive today, if not for Children's Hospital.
Our oldest son Oliver was born in February of 2007, a healthy, perfect baby boy. Fifteen months later, in May of 2008 our second son Athan was born. Shortly after birth we found out he had a heart condition that required surgery ASAP. He was trasported to Children's and had surgery at 5 days old and was home only 5 days later. While we were in the hospital with him, we talked so many times about how amazing this place is. It is so sad that a place like that has to exist, but we are so thankful that it does.
When Athan was about 18 months old we decided to try for one more baby. Fast forward to September of 2010- I was 23 weeks pregnant and we knew from a previous ultrasound that this baby was a girl- baby Jillian. Our family was going to be complete! But, the doctors came back with less than good news for us. "This baby has a heart problem," was the doctors exact words. Our world was turned upside down, once again. Three days later, we were in the Children's Hospital Cardiology clinic, somewhere we were already familiar with, thanks to Athan's condition. There, they did an echo on Jilly's heart in utero- which in itself is amazing- and diagnosed Jillian with Hypoplastic Left Heart Syndrome. This condition is absolutely fatal if not treated.
Jillian was delivered at Presbyterian St. Luke's Hospital in Denver on December 15th, 2010 and transported to Children's at three days old. She was only 5 pounds and 15 ounces when she was born, so surgery was a big risk for her. Becasue of her size, we were told to expect to be in the hospital for at least six to eight weeks after surgery. At six days old she underwent eight hours of open heart surgery, performed by the same surgeon that did Athan's surgery. We knew she was in great hands. She did well during surgery and we began the recovery process.
While in the Cardiac Intensive Care Unit (CICU) I am convinced that we had the absolute best doctors and nurses possible. At Children's they don't just take care of their patients, they take care of families too.
By some miracle, Jillian was discharged from the hospital just 2 weeks and 3 days after surgery. She has been home now for almost 6 weeks and besides some feeding issues is doing well. We are expecting her second surgery to be in the next couple of months. We are not incredibly excited about putting her through another surgery, but are so incredibly comforted knowing that she will be cared for at such an amazing hospital.
Thanks to Children's hospital our oldest son has a younger brother and a younger sister. Thanks to Children's hospital we can hold and hug all three of our kids. Two of our three kids would not be alive today, if not for Children's Hospital.
Our oldest son Oliver was born in February of 2007, a healthy, perfect baby boy. Fifteen months later, in May of 2008 our second son Athan was born. Shortly after birth we found out he had a heart condition that required surgery ASAP. He was trasported to Children's and had surgery at 5 days old and was home only 5 days later. While we were in the hospital with him, we talked so many times about how amazing this place is. It is so sad that a place like that has to exist, but we are so thankful that it does.
When Athan was about 18 months old we decided to try for one more baby. Fast forward to September of 2010- I was 23 weeks pregnant and we knew from a previous ultrasound that this baby was a girl- baby Jillian. Our family was going to be complete! But, the doctors came back with less than good news for us. "This baby has a heart problem," was the doctors exact words. Our world was turned upside down, once again. Three days later, we were in the Children's Hospital Cardiology clinic, somewhere we were already familiar with, thanks to Athan's condition. There, they did an echo on Jilly's heart in utero- which in itself is amazing- and diagnosed Jillian with Hypoplastic Left Heart Syndrome. This condition is absolutely fatal if not treated.
Jillian was delivered at Presbyterian St. Luke's Hospital in Denver on December 15th, 2010 and transported to Children's at three days old. She was only 5 pounds and 15 ounces when she was born, so surgery was a big risk for her. Becasue of her size, we were told to expect to be in the hospital for at least six to eight weeks after surgery. At six days old she underwent eight hours of open heart surgery, performed by the same surgeon that did Athan's surgery. We knew she was in great hands. She did well during surgery and we began the recovery process.
While in the Cardiac Intensive Care Unit (CICU) I am convinced that we had the absolute best doctors and nurses possible. At Children's they don't just take care of their patients, they take care of families too.
By some miracle, Jillian was discharged from the hospital just 2 weeks and 3 days after surgery. She has been home now for almost 6 weeks and besides some feeding issues is doing well. We are expecting her second surgery to be in the next couple of months. We are not incredibly excited about putting her through another surgery, but are so incredibly comforted knowing that she will be cared for at such an amazing hospital.
Thursday, February 10, 2011
Prayers for Another Heart Family
There is another heart family that we know of, but have never met. We heard of them through our most favorite nurse at Children's, Gill. Their little girl (I won't give out names, etc. because we don't actually know them) has the same heart defect as Jillian, Hypoplastic Left Heart Syndrome. Like us, they have a blog to keep folks updated on their little girls progress and I have been keeping up with it since we came home from the hospital. Today their little one went through the second of the three surgeries- the same surgery Jillian will be going through in the next few months. From everything I have read on the blog today, she tolerated surgery well and is in recovery.
Although we do not know this family, I feel very compelled to ask for prayers for their little girl. Please just say a quick prayer today for this family- and ALL congenital heart defect families.
Although we do not know this family, I feel very compelled to ask for prayers for their little girl. Please just say a quick prayer today for this family- and ALL congenital heart defect families.
Saturday, February 5, 2011
Time Flies...
When you're chasing after an almost 4 year old, a two and a half year old and have a newborn with some special needs to take care of...
I can't believe we've already been home for four weeks, as of yesterday. And what a busy four weeks it has been. I feel like we're finally starting to get back into some sort of a routine, although it definitely feels like there are simply just not enough hours in the day. Right now, life for JR and me is being lived in 2 to 3 hour blocks, constantly revolving around Jilly's feedings. It is hard and sometimes feels very taxing and almost confining, but she is continuing to make amazing progress (not to mention that when this all began we could only hope to maybe be coming home this week!) so we continue on. She is so, so, SO close to having the feeding tube removed for good. We really only have to use it for one or two feedings a day, unlike when we first came home and it was used with every. single. feeding. Still, we are counting every single milliliter she eats. It's so crazy to think that such a tiny amount can make such a big difference but it does. It seems so tedious, but whatever we're doing, it's working- Jilly is tipping the scales at a hefty 7 pounds 11 ounces these days! Yep, she is now roughly the size of an average newborn and we are SO SO proud of her!
Every week we have an appointment at Children's Hospital in Denver. A lot of times when I tell people this, they see it as a burden. But the fact that we've been home for four weeks, in our own beds, using our own showers and most importantly as a WHOLE family makes it so much easier "having" to drive there every week. Plus, it's kind of a nice break for me... Oli and Athan stay home with JR and Jilly and I have some girl time in the car. Really, she sleeps and I drive, but I guess things really are what you make of them and since I don't have a whole lot of opportunities to have "me time" right now, those drives provide that for me at least once a week : )
We are so proud of how Oli and Athan have adjusted to having a new baby in the house, especially considering the fact that I was gone for 3 1/2 weeks and life was far less than normal for them. They are such amazing big brothers. They are constantly concerned for her and super helpful- although their wanting to help sometimes turns into fights over exactly who gets to help at that particular moment. Just about everyday Oli says, "Her's is cute! Can we keep her, pleeeease!?!?" And Athan says that she is his, "wavorite sister!" (That would be "favorite" for the non-Athan speaking folks out there!)
Somehow adjusting to being a stay-at-home mom of three has been surprisingly... dare I say... easy. Maybe it's because of everything we've gone through, or maybe it's because I had nothing but time to think about our life while I was in the hospital with Jillian, but the transition from two to three has been much smoother than I had expected it to be.
I guess at this point I can summarize by saying that Jillian is doing amazing. She's continuing to grow and thrive and has made her own little place in our family. She's certainly doing her best to show her little personality. JR insists that she is a little diva, but really? Who can blame her after what she's gone through? This is not to say, of course, that we don't have rough days. Life is not all peaches and cream all the time, but I think we've done a decent job so far at least of making the best of a hard situation and staying as positive as we can.
As cliche as it may sound, we are just taking this one day at a time. We're enjoying life as it is as much as we can and reminding each other, and ourselves that these are the only days like this that we are going to have- good or bad. Oli and Athan will only be this age once- right now- and the same can be said for Jilly too. I think we're both conscious of the fact that the days are quickly approaching when we will really start having to think about and plan for and worry about her second surgery, but for now we're just enjoying our family how it is meant to be.
I can't believe we've already been home for four weeks, as of yesterday. And what a busy four weeks it has been. I feel like we're finally starting to get back into some sort of a routine, although it definitely feels like there are simply just not enough hours in the day. Right now, life for JR and me is being lived in 2 to 3 hour blocks, constantly revolving around Jilly's feedings. It is hard and sometimes feels very taxing and almost confining, but she is continuing to make amazing progress (not to mention that when this all began we could only hope to maybe be coming home this week!) so we continue on. She is so, so, SO close to having the feeding tube removed for good. We really only have to use it for one or two feedings a day, unlike when we first came home and it was used with every. single. feeding. Still, we are counting every single milliliter she eats. It's so crazy to think that such a tiny amount can make such a big difference but it does. It seems so tedious, but whatever we're doing, it's working- Jilly is tipping the scales at a hefty 7 pounds 11 ounces these days! Yep, she is now roughly the size of an average newborn and we are SO SO proud of her!
Every week we have an appointment at Children's Hospital in Denver. A lot of times when I tell people this, they see it as a burden. But the fact that we've been home for four weeks, in our own beds, using our own showers and most importantly as a WHOLE family makes it so much easier "having" to drive there every week. Plus, it's kind of a nice break for me... Oli and Athan stay home with JR and Jilly and I have some girl time in the car. Really, she sleeps and I drive, but I guess things really are what you make of them and since I don't have a whole lot of opportunities to have "me time" right now, those drives provide that for me at least once a week : )
We are so proud of how Oli and Athan have adjusted to having a new baby in the house, especially considering the fact that I was gone for 3 1/2 weeks and life was far less than normal for them. They are such amazing big brothers. They are constantly concerned for her and super helpful- although their wanting to help sometimes turns into fights over exactly who gets to help at that particular moment. Just about everyday Oli says, "Her's is cute! Can we keep her, pleeeease!?!?" And Athan says that she is his, "wavorite sister!" (That would be "favorite" for the non-Athan speaking folks out there!)
Somehow adjusting to being a stay-at-home mom of three has been surprisingly... dare I say... easy. Maybe it's because of everything we've gone through, or maybe it's because I had nothing but time to think about our life while I was in the hospital with Jillian, but the transition from two to three has been much smoother than I had expected it to be.
I guess at this point I can summarize by saying that Jillian is doing amazing. She's continuing to grow and thrive and has made her own little place in our family. She's certainly doing her best to show her little personality. JR insists that she is a little diva, but really? Who can blame her after what she's gone through? This is not to say, of course, that we don't have rough days. Life is not all peaches and cream all the time, but I think we've done a decent job so far at least of making the best of a hard situation and staying as positive as we can.
Tuesday, January 11, 2011
3 Weeks After Surgery- Counting Our Lucky Stars
Today marks 3 weeks after Jillian's surgery. The surgery that was supposed to keep us in the hospital for 6-8 weeks. Well, Jilly had her own ideas about this... We've been home for 4 full days and a night now! By some miracle, we were able to go home just 2 weeks and 3 days after surgery, which apparently is a record for this type of surgery, especially given the fact that she was so tiny- only 5 pounds 15 ounces at birth. She is an amazing little girl and we thank God for that.
Tonight, with my WHOLE family under one roof, I'm counting our lucky stars that this went so well. Better than ANYONE expected.
Tonight, with my WHOLE family under one roof, I'm counting our lucky stars that this went so well. Better than ANYONE expected.
Thursday, December 30, 2010
Keep On Keepin' On
We are now a week and 2 days post-op and Jillian is still doing good :) In just a few hours she will be done with ALL of her medications and feeds. Slowly but surely all the tubes and wires and bandages are making their way off our little girl and into the trash!
Since the last post I wrote she has been taken off the medication to help her heart pump (Milrinone) and also the "blood thinner" type medication (Heparin). She has had both lines in her groin taken out and is on very little oxygen. She still has a PICC line in her left arm, but as far as her accessories go, that's pretty much it, other than monitors to measure blood flow to the upper and lower parts of her body, a blood pressure cuff and EKG wires. Really, though, she's doing fantastic! She looks more and more like our baby girl everyday :)
So, now that she is off of just about everything she was on, our biggest hurdle is feeding... Right now she is getting a continuous feed of breast milk via a feeding tube, but starting tomorrow they will only feed her through it once every 3 hours. Her doctors and nurses are hoping this will help her to feel hungry and will make her want to eat. We are offering her very small amounts of breast milk that I have pumped from a bottle- only 5 or so CC's every few hours, but these feedings seem to upset her tummy some so it is a slow process. Patience is not a very big strength of JR's or mine so we have to constantly remind ourselves that she is in charge! (Kind of a scary power to give a two week old!)
I'd be lying if I said I wasn't tired of being at the hospital already... I'm tired of the crappy "beds" and the food. I'm tired of sharing a bathroom with what feels like a million strangers and using a "shower" room that never really feels quite clean enough. I'm tired of not being able to pick up MY baby without someone else handing her to me... indeed we never have picked her up on our own. I'm tired of only being able to talk to Oli and Athan on the phone or see them on Skype. I'm tired of being away from my husband. And mostly (especially on days like today when it's snowy out and I just want to cuddle up on the couch with JR and all THREE of my kids), I'm tired of not being home together as a whole family.
BUT, Jillian is making progress every day. It's amazing to watch her- to see her stubbornness and attitude coming out already (that will be fun later on...) and to watch her continue to surprise everyone around her. It's amazing to see her progress everyday and sometimes even hour to hour. And when she's awake and just stares at me, she melts my heart, and I know that in the end, this will all be worth it.
Since the last post I wrote she has been taken off the medication to help her heart pump (Milrinone) and also the "blood thinner" type medication (Heparin). She has had both lines in her groin taken out and is on very little oxygen. She still has a PICC line in her left arm, but as far as her accessories go, that's pretty much it, other than monitors to measure blood flow to the upper and lower parts of her body, a blood pressure cuff and EKG wires. Really, though, she's doing fantastic! She looks more and more like our baby girl everyday :)
So, now that she is off of just about everything she was on, our biggest hurdle is feeding... Right now she is getting a continuous feed of breast milk via a feeding tube, but starting tomorrow they will only feed her through it once every 3 hours. Her doctors and nurses are hoping this will help her to feel hungry and will make her want to eat. We are offering her very small amounts of breast milk that I have pumped from a bottle- only 5 or so CC's every few hours, but these feedings seem to upset her tummy some so it is a slow process. Patience is not a very big strength of JR's or mine so we have to constantly remind ourselves that she is in charge! (Kind of a scary power to give a two week old!)
I'd be lying if I said I wasn't tired of being at the hospital already... I'm tired of the crappy "beds" and the food. I'm tired of sharing a bathroom with what feels like a million strangers and using a "shower" room that never really feels quite clean enough. I'm tired of not being able to pick up MY baby without someone else handing her to me... indeed we never have picked her up on our own. I'm tired of only being able to talk to Oli and Athan on the phone or see them on Skype. I'm tired of being away from my husband. And mostly (especially on days like today when it's snowy out and I just want to cuddle up on the couch with JR and all THREE of my kids), I'm tired of not being home together as a whole family.
BUT, Jillian is making progress every day. It's amazing to watch her- to see her stubbornness and attitude coming out already (that will be fun later on...) and to watch her continue to surprise everyone around her. It's amazing to see her progress everyday and sometimes even hour to hour. And when she's awake and just stares at me, she melts my heart, and I know that in the end, this will all be worth it.
Sunday, December 26, 2010
Jilly the RoCkStAr
We are 5 days post-op and Jilly is doing amazing! We are so proud of our little rockstar :)
Yesterday for Christmas she got 3 of her 4 chest tubes out (along with a zoo of stuffed animals to keep her company in her isolette!) and continued to get stronger and show the doctors and nurses who's boss ;) Her morphine and dopamine drips were turned off. She began getting a small amount of breast milk through a feeding tube and all of her numbers and vital signs looked great :) Oli and Athan gave her two girl superheros to put in her room to keep watch over her. Really, though, we know that the three of them are the superheros for being so strong throughout all of this.
Today was an even bigger day- her 4th chest tube was taken out and she was taken off of her ventilator. She has been breathing on her own and doing fantastic for about 4 hours now. With a little luck I might even be able to hold her tonight for the first time in 5 days :) She has also been moved from an isolette to a hospital crib, which has been given quite the girly girl, princessy feel thanks to a nice, big soft pink blanky draped over the top like a canopy.
Over the last few days her swelling has gone down a ton- she's finally beginning to look like the baby she was before surgery. Even her incision looks good :)
Jilly's favorite nurse, Gillian, says she is doing better than a lot of babies who go through this same surgery. She seems to be tolerating the surgery and the recovery pretty well, so even though this is terribly hard on us, we are cautiously optimistic for the days and weeks ahead.
Yesterday for Christmas she got 3 of her 4 chest tubes out (along with a zoo of stuffed animals to keep her company in her isolette!) and continued to get stronger and show the doctors and nurses who's boss ;) Her morphine and dopamine drips were turned off. She began getting a small amount of breast milk through a feeding tube and all of her numbers and vital signs looked great :) Oli and Athan gave her two girl superheros to put in her room to keep watch over her. Really, though, we know that the three of them are the superheros for being so strong throughout all of this.
Today was an even bigger day- her 4th chest tube was taken out and she was taken off of her ventilator. She has been breathing on her own and doing fantastic for about 4 hours now. With a little luck I might even be able to hold her tonight for the first time in 5 days :) She has also been moved from an isolette to a hospital crib, which has been given quite the girly girl, princessy feel thanks to a nice, big soft pink blanky draped over the top like a canopy.
Over the last few days her swelling has gone down a ton- she's finally beginning to look like the baby she was before surgery. Even her incision looks good :)
Jilly's favorite nurse, Gillian, says she is doing better than a lot of babies who go through this same surgery. She seems to be tolerating the surgery and the recovery pretty well, so even though this is terribly hard on us, we are cautiously optimistic for the days and weeks ahead.
Thursday, December 23, 2010
Welcome to the World, Jillian Lylah Janik
Clearly I am late posting this, but let's just say we've been busy the last 8 days... So, in a nutshell here is what the last 8 days have looked like for us:
Jillian Lylah was born Wednesday December 15th at 9:22 pm after 12 intense hours of labor... okay, that's a lie- it was really only 45 minutes of "intense" labor and roughly 11 hours and 15 minutes of hanging around...
She tipped the scales at an enormous 5 pounds 15 ounces and was 19 and 3/4 inches tall. She came into this world screaming at the top of her lungs and had lots of DARK HAIR!!! She was greeted by JR and me and her "Aunt" Tammy, along with the doctor, nurse and the 3 member NICU team.
Shortly after making her grand entrance into this world, she was taken to the NICU at Presbyterian St. Lukes Hospital where they evaluated her and started preparing her for surgery.
Grandpappy and Grandma Bink came to meet her the next afternoon and after 20 or so hours JR and I were finally able to hold her for more than the 5 or 10 minutes we were allowed after her birth. We scrutinized her every detail, coming to the conclusion that she somehow looks like both Oli and Athan, has JR's almost everything (except for my nose!) and apparently has my temper- which should come in useful for her over the next few years :)
Friday she was transported via Denver Flight for Life in an ambulance going roughly 10-15 miles per hour under the speed limit to The Children's Hospital Cardiac Intensive Care Unit (CICU) where many more doctors and nurses poked and prodded her. Grandma Donna and cousin Taylor, Uncle Ryan and Aunt Sonia came to visit her and JR and I got to visit Oli and Athan for the first time in a few days :) :) :)
Saturday brought Uncle Ryan and Aunt Sonia back, along with Aunt Vicki and Uncle Shane.
Sunday was a very important day- she met big brothers Oli and Athan for the first time! Oli's immediate reaction was that, "Aww! Her's is cute!" but later confessed to his Uncle Chad that she didn't look very good because "she doesn't have any clothes on!" and Athan observed that, "Jilly is not in your tummy..." Other visitors that day included Grandma Donna, Grandpa Gene, Uncle Chad, Uncle Blaine, Uncle Eric, Aunt Jenna (and cousin Moriah!) and Grandma Bink and Grandpappy.
Monday was spent eating like a little piggy, being cuddled by mommy and daddy, surprising doctors and nurses by how well she was doing, and getting a pic line put in for surgery. Also, Aunt Tammy came to visit again and escorted JR and I out of the hospital for a bit to enjoy some non-hospital food ;)
Monday night into Tuesday morning was hard for JR and I knowing that the next morning they would be taking our perfect, beautiful baby girl away from us early in the morning for surgery... Not much sleep was gotten, but plenty of cuddling, hugging and kissing our baby girl took place. She melted our hearts with her strong willed personality and shocked us with her beauty everytime she opened her eyes. Our little girl truly is a doll... Many, MANY tears were shed as the time for them to come get her was quickly approaching. Finally they came and took her away, us just asking her to be strong and keep fighting.
Tuesday was spent in a haze waiting with a knotted stomach and complete anxiousness for every update to come...
Finally 9 hours after leaving us, we were FINALLY allowed to see our baby girl again. Words can't describe what it was like seeing her for the first time post surgery, but regardless of how swollen, black and blue, and covered in wires and tubes she was- not to mention the fact that her chest was left open with only a white patch covering her beating heart- she was and still is our perfect, beautiful, sweet, strong baby girl. She came out of the operating room doing amazingly well, surprising the doctors once again.
About 12 hours after surgery, she had a little slump in her vitals- something that happens with all babies at some point after this surgery. She spent the next 24 or so hours taking the nurses and doctors on a roller coaster ride before finally deciding to level herself out and behave so that this morning (Thursday, Dec. 23rd) she could have her chest sewn shut. Our little girl is whole once again :)
She is doing amazingly well. She is awake and alert and responds to our voices. She holds JR's fingers and loves for her cheek to be stroked. All of her vitals and most important her cardiac markers look very good. She is winning over the hearts of the doctors and nurses and continues to amaze us beyond words.
We're so proud of our little girl for having the will to fight as hard as she is :)
We are so very, VERY thankful for all the thoughts and prayers and well wishes that have been sent our way. A million thank you's cannot thank everyone enough...
Jillian Lylah was born Wednesday December 15th at 9:22 pm after 12 intense hours of labor... okay, that's a lie- it was really only 45 minutes of "intense" labor and roughly 11 hours and 15 minutes of hanging around...
She tipped the scales at an enormous 5 pounds 15 ounces and was 19 and 3/4 inches tall. She came into this world screaming at the top of her lungs and had lots of DARK HAIR!!! She was greeted by JR and me and her "Aunt" Tammy, along with the doctor, nurse and the 3 member NICU team.
Shortly after making her grand entrance into this world, she was taken to the NICU at Presbyterian St. Lukes Hospital where they evaluated her and started preparing her for surgery.
Grandpappy and Grandma Bink came to meet her the next afternoon and after 20 or so hours JR and I were finally able to hold her for more than the 5 or 10 minutes we were allowed after her birth. We scrutinized her every detail, coming to the conclusion that she somehow looks like both Oli and Athan, has JR's almost everything (except for my nose!) and apparently has my temper- which should come in useful for her over the next few years :)
Friday she was transported via Denver Flight for Life in an ambulance going roughly 10-15 miles per hour under the speed limit to The Children's Hospital Cardiac Intensive Care Unit (CICU) where many more doctors and nurses poked and prodded her. Grandma Donna and cousin Taylor, Uncle Ryan and Aunt Sonia came to visit her and JR and I got to visit Oli and Athan for the first time in a few days :) :) :)
Saturday brought Uncle Ryan and Aunt Sonia back, along with Aunt Vicki and Uncle Shane.
Sunday was a very important day- she met big brothers Oli and Athan for the first time! Oli's immediate reaction was that, "Aww! Her's is cute!" but later confessed to his Uncle Chad that she didn't look very good because "she doesn't have any clothes on!" and Athan observed that, "Jilly is not in your tummy..." Other visitors that day included Grandma Donna, Grandpa Gene, Uncle Chad, Uncle Blaine, Uncle Eric, Aunt Jenna (and cousin Moriah!) and Grandma Bink and Grandpappy.
Monday was spent eating like a little piggy, being cuddled by mommy and daddy, surprising doctors and nurses by how well she was doing, and getting a pic line put in for surgery. Also, Aunt Tammy came to visit again and escorted JR and I out of the hospital for a bit to enjoy some non-hospital food ;)
Monday night into Tuesday morning was hard for JR and I knowing that the next morning they would be taking our perfect, beautiful baby girl away from us early in the morning for surgery... Not much sleep was gotten, but plenty of cuddling, hugging and kissing our baby girl took place. She melted our hearts with her strong willed personality and shocked us with her beauty everytime she opened her eyes. Our little girl truly is a doll... Many, MANY tears were shed as the time for them to come get her was quickly approaching. Finally they came and took her away, us just asking her to be strong and keep fighting.
Tuesday was spent in a haze waiting with a knotted stomach and complete anxiousness for every update to come...
Finally 9 hours after leaving us, we were FINALLY allowed to see our baby girl again. Words can't describe what it was like seeing her for the first time post surgery, but regardless of how swollen, black and blue, and covered in wires and tubes she was- not to mention the fact that her chest was left open with only a white patch covering her beating heart- she was and still is our perfect, beautiful, sweet, strong baby girl. She came out of the operating room doing amazingly well, surprising the doctors once again.
About 12 hours after surgery, she had a little slump in her vitals- something that happens with all babies at some point after this surgery. She spent the next 24 or so hours taking the nurses and doctors on a roller coaster ride before finally deciding to level herself out and behave so that this morning (Thursday, Dec. 23rd) she could have her chest sewn shut. Our little girl is whole once again :)
She is doing amazingly well. She is awake and alert and responds to our voices. She holds JR's fingers and loves for her cheek to be stroked. All of her vitals and most important her cardiac markers look very good. She is winning over the hearts of the doctors and nurses and continues to amaze us beyond words.
We're so proud of our little girl for having the will to fight as hard as she is :)
We are so very, VERY thankful for all the thoughts and prayers and well wishes that have been sent our way. A million thank you's cannot thank everyone enough...
Tuesday, December 14, 2010
Dear Jilly
Dear Jilly,
Tomorrow you could enter this world. Well, I guess technically, if you felt like it, you could come today. But you seem to be awfully cozy in there so... I have my doubts about today.
Assuming you wait until tomorrow (and the doctors decide to induce) you will have only one last ultrasound before you enter this crazy world of ours. Only one more time will doctors have to poke and prod you while you are still in my tummy. I know you're tired of it- your kicks at the magic ultrasound wand every time they try to look at you have not gone unnoticed... But, hang in there little girl, there should be only one of those left. I wish I could say that would be the last time anyone has to poke and prod at you, but sadly, there will be much, much more of that once you're on the outside. If I could trade places with you I would and I know Daddy feels the same way too...
We can't wait for you to be in our arms. We can't wait for you to just be here with us. And even though shortly after you are born, the doctors will wisk you away to start their poking and prodding nonsense on the outside, just know we love you more than words can say and if we could, we would change all of this.
Your big brothers are getting excited and anxious to see you :) Oli asks every day, "Is Jilly almost coming out?" and says he can't wait to hold you and say, "Wow! Her's is heavy!" Unlike the doctors, he thinks you are going to be a tank! Although he tries to be anti-girl toys right now, I think, like Daddy, he can't wait to have a tea party with you. He told us the other day he wishes he could help fix your broken heart. Already your oldest brother has an infinite amount of love for you.
Athan is excited too, although he doesn't understand quite as much as Oli does. Every day he lifts my shirt to talk to you- because talking through my shirt just won't do for him. He has a list of things he wants to teach you, like jumping, and watching movies, and playing superheros, but mostly, he says, he wants to teach you to be naughty. Yes, Jilly, you already have a partner in crime waiting for you on the outside. And when that happens, the outside is going to be in trouble! It's a good thing we have a few superheros flying around this house to keep us all safe...
Daddy and I? We're excited too :) We're scared for you and what you will go through. We know it's not fair to have to ask for you to fight so hard from the moment you enter this world, and we are so, so sorry about that, but please know we are here fighting with you. To say our hearts are broken for you seems so wrong, now that we have been shown twice what a truly broken heart is. So, I'll just say our hearts ache for you. They hurt for what you have to go through, but somehow, because of this they are whole and are full of love.
We have a rough road ahead, but we will travel it as a family. Whether you come today, or tomorrow, or next week, we can't wait to finally have you in our arms. We can't wait for our family to be complete. We can't wait for our last little puzzle piece to be put in place.
Tomorrow you could enter this world. Well, I guess technically, if you felt like it, you could come today. But you seem to be awfully cozy in there so... I have my doubts about today.
Assuming you wait until tomorrow (and the doctors decide to induce) you will have only one last ultrasound before you enter this crazy world of ours. Only one more time will doctors have to poke and prod you while you are still in my tummy. I know you're tired of it- your kicks at the magic ultrasound wand every time they try to look at you have not gone unnoticed... But, hang in there little girl, there should be only one of those left. I wish I could say that would be the last time anyone has to poke and prod at you, but sadly, there will be much, much more of that once you're on the outside. If I could trade places with you I would and I know Daddy feels the same way too...
We can't wait for you to be in our arms. We can't wait for you to just be here with us. And even though shortly after you are born, the doctors will wisk you away to start their poking and prodding nonsense on the outside, just know we love you more than words can say and if we could, we would change all of this.
Your big brothers are getting excited and anxious to see you :) Oli asks every day, "Is Jilly almost coming out?" and says he can't wait to hold you and say, "Wow! Her's is heavy!" Unlike the doctors, he thinks you are going to be a tank! Although he tries to be anti-girl toys right now, I think, like Daddy, he can't wait to have a tea party with you. He told us the other day he wishes he could help fix your broken heart. Already your oldest brother has an infinite amount of love for you.
Athan is excited too, although he doesn't understand quite as much as Oli does. Every day he lifts my shirt to talk to you- because talking through my shirt just won't do for him. He has a list of things he wants to teach you, like jumping, and watching movies, and playing superheros, but mostly, he says, he wants to teach you to be naughty. Yes, Jilly, you already have a partner in crime waiting for you on the outside. And when that happens, the outside is going to be in trouble! It's a good thing we have a few superheros flying around this house to keep us all safe...
Daddy and I? We're excited too :) We're scared for you and what you will go through. We know it's not fair to have to ask for you to fight so hard from the moment you enter this world, and we are so, so sorry about that, but please know we are here fighting with you. To say our hearts are broken for you seems so wrong, now that we have been shown twice what a truly broken heart is. So, I'll just say our hearts ache for you. They hurt for what you have to go through, but somehow, because of this they are whole and are full of love.
We have a rough road ahead, but we will travel it as a family. Whether you come today, or tomorrow, or next week, we can't wait to finally have you in our arms. We can't wait for our family to be complete. We can't wait for our last little puzzle piece to be put in place.
Sunday, December 12, 2010
The Wait is Almost Over...
In a few days, well any day, really, Jilly will be here :)
Wow, how did this go so fast? It seems like this entire pregnancy has flown by... I'm so excited to meet her and have her in my arms and try to figure out if she looks like JR or me. I'm excited to see if she really does have hair. And I can't wait to see what Oli and Athan think of her.
We still don't have a real definite plan. But, I guess that's how it goes with most babies anyway. We have one last appoinmtent at Presbyterian St. Luke's in Denver on Wednesday and they may- or may not- induce on that day. It feels so close, yet so far away...
I have to admit, it's hard not to feel a little bit robbed of this pregnancy. JR and I have spent the last 15 weeks worrying about her and worrying about the boys and worrying about normal everyday life stuff that we would have worried about anyway, that we haven't really had time to just enjoy this. Yesterday marked 38 weeks. How am I 38 weeks already? Where did all that time go? Ah... it probably passed along with all the ups and downs.
On November 30th we had an ultrasound to check my amniotic fluid levels and her growth and they estimated her at only 4 pounds 12 ounces. My heart sank when they told us this... We were expecting her to be right around 6 pounds at that time. She needs to be as big as possible for surgery and this was not a good sign. But this last Friday, only 10 days later, we had another ultrasound and this time they estimated her at 6 pounds 8 ounces! Much, much better as that is right where the surgeons would prefer her to be for surgery. We can relax, if only a little, once again.
I'm not sure that I can even put into words all the different emotions that I'm feeling. I'm excited and scared, of course (although I think that would be true of any pregnancy). I'm anxious. I'm nervous. Sometimes I think I'm "ready" for all of this, even though I know that I'm not, because really, no amount of "planning" (of which we successfully have almost none) can prepare us for this.
I'm not ready to see my baby- another one of my babies- like that, even if I have seen it before. I don't want to search for her through tubes and wires and machines. I don't want to see where they had to cut her chest open to fix her heart- because it should have just been perfect to begin with. I'm not ready to fall half-asleep to the noise of the machine that will be keeping my daughter alive. I'm not ready for all the alarms to go off when her heart rate gets too high or too low or when her oxygen levels aren't just right. I'm not ready to just sit and watch her fight for her life and not even be able to hold her or comfort her, except to maybe stroke her cheek. I'm not ready to be away from JR and especially not Oli and Athan for 6 to 8 weeks or even 2 days. In the almost 4 years that we've been parents we've been away from our boys for a total of 4 or maybe 5 nights. I'm just not ready. Not really...
Some people say, "well you've already been through this once, so you know what to expect!" And apparently that should make it all better- but no, we have not been through this already. We have been through something similar, yes, but not this. And even if it had been the exact same situation, no, it would not make it better...
I guess all I can do over the next few days is really try to just enjoy these last few moments of (mostly) chaos free life- like right now, when Oli is asleep in our bed next to me snoring like he's 40 (the whole reason I'm up during the 5 o'clock hour anyway)- because wether we're ready or not, Jilly will be here any day now. :)
Wow, how did this go so fast? It seems like this entire pregnancy has flown by... I'm so excited to meet her and have her in my arms and try to figure out if she looks like JR or me. I'm excited to see if she really does have hair. And I can't wait to see what Oli and Athan think of her.
We still don't have a real definite plan. But, I guess that's how it goes with most babies anyway. We have one last appoinmtent at Presbyterian St. Luke's in Denver on Wednesday and they may- or may not- induce on that day. It feels so close, yet so far away...
I have to admit, it's hard not to feel a little bit robbed of this pregnancy. JR and I have spent the last 15 weeks worrying about her and worrying about the boys and worrying about normal everyday life stuff that we would have worried about anyway, that we haven't really had time to just enjoy this. Yesterday marked 38 weeks. How am I 38 weeks already? Where did all that time go? Ah... it probably passed along with all the ups and downs.
On November 30th we had an ultrasound to check my amniotic fluid levels and her growth and they estimated her at only 4 pounds 12 ounces. My heart sank when they told us this... We were expecting her to be right around 6 pounds at that time. She needs to be as big as possible for surgery and this was not a good sign. But this last Friday, only 10 days later, we had another ultrasound and this time they estimated her at 6 pounds 8 ounces! Much, much better as that is right where the surgeons would prefer her to be for surgery. We can relax, if only a little, once again.
I'm not sure that I can even put into words all the different emotions that I'm feeling. I'm excited and scared, of course (although I think that would be true of any pregnancy). I'm anxious. I'm nervous. Sometimes I think I'm "ready" for all of this, even though I know that I'm not, because really, no amount of "planning" (of which we successfully have almost none) can prepare us for this.
I'm not ready to see my baby- another one of my babies- like that, even if I have seen it before. I don't want to search for her through tubes and wires and machines. I don't want to see where they had to cut her chest open to fix her heart- because it should have just been perfect to begin with. I'm not ready to fall half-asleep to the noise of the machine that will be keeping my daughter alive. I'm not ready for all the alarms to go off when her heart rate gets too high or too low or when her oxygen levels aren't just right. I'm not ready to just sit and watch her fight for her life and not even be able to hold her or comfort her, except to maybe stroke her cheek. I'm not ready to be away from JR and especially not Oli and Athan for 6 to 8 weeks or even 2 days. In the almost 4 years that we've been parents we've been away from our boys for a total of 4 or maybe 5 nights. I'm just not ready. Not really...
Some people say, "well you've already been through this once, so you know what to expect!" And apparently that should make it all better- but no, we have not been through this already. We have been through something similar, yes, but not this. And even if it had been the exact same situation, no, it would not make it better...
I guess all I can do over the next few days is really try to just enjoy these last few moments of (mostly) chaos free life- like right now, when Oli is asleep in our bed next to me snoring like he's 40 (the whole reason I'm up during the 5 o'clock hour anyway)- because wether we're ready or not, Jilly will be here any day now. :)
Friday, November 19, 2010
This Is Bigger Than Us
From the very beginning, when all this Hypoplastic Left Heart Syndrome stuff came up and we were still numb from shock and in disbelief, JR and I have talked about how this is "bigger than us". As the days and weeks continue to go by, I'm realizing more and more how true that statement is. Simpy put, this is just something that we cannot do alone. I don't know if this is supposed to open our eyes to the fact that life is short. Or show us all the things we have. I don't know if this is supposed to be our way of searching out God- because in a lot of ways we have- or if this is supposed to push our lives in a different direction. I know we'll never be able to look back at this time and say, "Ahh... so that's why that happened..." There's no doubt in my mind that we'll never know for sure.
It amazes me and it warms my heart to see how many people care about Jillian. How many people care about my family. How many people care about us. Through all of this, so many people have "come out of the woodwork" so to speak, to offer encouragement, a kind word, emotional support and of course outfits and blankets and shoes of pink and purple and all things baby girl :) Some people have given us books in the hopes of helping us cope. Some people have sent me messages on facebook, just to say, "Hey, I'm here and I'm thinking of you guys." One dear friend left a message saying, "You don't realize it, but you have a silent army behind you, cheering you on along the way." Sitting here today, just a few weeks before Jillian joins us, I know already that she is an amazing little girl. Jilly's heart has touched other people's hearts here in Colorado, South Dakota, New York, Minnesota, Wyoming, Missouri, Arizona, Tennessee and Texas and even Scotland, I do believe- and those are just the places that I can think of off the top of my head.
Already Jilly has touched so many lives, but mostly, she's touched ours. While this is, without a doubt, the hardest thing we have ever had to go through, there are some positives that have come to the surface, too. I'm reminded of the power of love, the devotion of family and the faithfullness of friends- even those that I haven't spoken to or seen in very, very long time. Our families have rallied behind us, doing everything they can to make this as easy as possible for us and especially for Oli and Athan. Our friends have given us unconditional emotional support- despite sometimes having their own personal struggles and hells to deal with. And my husband, the love of my life, has somehow become an even more amazing husband and father than he was before- without his love there is no possible way I could get through this with the illusion of strength that I've managed so far. For these things from all these people, I am forever grateful.
It amazes me and it warms my heart to see how many people care about Jillian. How many people care about my family. How many people care about us. Through all of this, so many people have "come out of the woodwork" so to speak, to offer encouragement, a kind word, emotional support and of course outfits and blankets and shoes of pink and purple and all things baby girl :) Some people have given us books in the hopes of helping us cope. Some people have sent me messages on facebook, just to say, "Hey, I'm here and I'm thinking of you guys." One dear friend left a message saying, "You don't realize it, but you have a silent army behind you, cheering you on along the way." Sitting here today, just a few weeks before Jillian joins us, I know already that she is an amazing little girl. Jilly's heart has touched other people's hearts here in Colorado, South Dakota, New York, Minnesota, Wyoming, Missouri, Arizona, Tennessee and Texas and even Scotland, I do believe- and those are just the places that I can think of off the top of my head.
Already Jilly has touched so many lives, but mostly, she's touched ours. While this is, without a doubt, the hardest thing we have ever had to go through, there are some positives that have come to the surface, too. I'm reminded of the power of love, the devotion of family and the faithfullness of friends- even those that I haven't spoken to or seen in very, very long time. Our families have rallied behind us, doing everything they can to make this as easy as possible for us and especially for Oli and Athan. Our friends have given us unconditional emotional support- despite sometimes having their own personal struggles and hells to deal with. And my husband, the love of my life, has somehow become an even more amazing husband and father than he was before- without his love there is no possible way I could get through this with the illusion of strength that I've managed so far. For these things from all these people, I am forever grateful.
Monday, November 8, 2010
What's New
I realized it's been a while since I last wrote something here. And whether or not anyone is actually interested or not, I think it will be good to have this to look back on someday, after all of this is over and done with.
So, where are we at...? I am now 33 weeks and a couple of days and on bed rest. I have nothing to do but sit here and try to grow Jilly bigger! Last week at my 32 week appointment and ultrasound my docs saw that my amniotic fluid is quite a bit lower than they would like it to be, so they put me on bed rest about 2 weeks early. I managed to get away with not abiding by the "bed" part of the equation for the rest of last week and the weekend, although I did try to adhere to the "rest"part... more or less. But now, Monday has rolled around and it's officially time for the two to come together. I'm about 4 hours into 6 weeks and WOW! I never would have thought having absolutely nothing to do and having to stick to that would be so hard. Even Oli is getting on me. I went downstairs to refill my water and he said, "No Mommy! You go back upstairs and rest!" Aww... gotta love 3 year olds :)
What else, what else... hmm... next week I will be going back for another ultrasound to check my fluid levels again and for my 34 week appointment. Starting with my 36 week appointment all my OB care will be transferred to the good folks at Presbyterian St. Luke's so we'll be driving to Denver weekly... let's hope it doesn't snow too much, although just now I probably jinxed myself... We'll have one more appointment to look at Jilly's heart at Children's on November 30th and then- we wait. As of right now we're hoping to make it to 39 weeks- December 18th- and should induce then, or around then. Then the real fun will begin...
In a small little nut shell that's what's going on. I had a few rough days emotionally, well and physically too, last week, but having my mom here has helped that a bit. More or less I'm in good spirits, for now, and just trying to find ways to pass the time. Only 4 1/2 to 5 1/2 weeks to go! Thank God for my Mom... and Pandora radio!
So, where are we at...? I am now 33 weeks and a couple of days and on bed rest. I have nothing to do but sit here and try to grow Jilly bigger! Last week at my 32 week appointment and ultrasound my docs saw that my amniotic fluid is quite a bit lower than they would like it to be, so they put me on bed rest about 2 weeks early. I managed to get away with not abiding by the "bed" part of the equation for the rest of last week and the weekend, although I did try to adhere to the "rest"part... more or less. But now, Monday has rolled around and it's officially time for the two to come together. I'm about 4 hours into 6 weeks and WOW! I never would have thought having absolutely nothing to do and having to stick to that would be so hard. Even Oli is getting on me. I went downstairs to refill my water and he said, "No Mommy! You go back upstairs and rest!" Aww... gotta love 3 year olds :)
What else, what else... hmm... next week I will be going back for another ultrasound to check my fluid levels again and for my 34 week appointment. Starting with my 36 week appointment all my OB care will be transferred to the good folks at Presbyterian St. Luke's so we'll be driving to Denver weekly... let's hope it doesn't snow too much, although just now I probably jinxed myself... We'll have one more appointment to look at Jilly's heart at Children's on November 30th and then- we wait. As of right now we're hoping to make it to 39 weeks- December 18th- and should induce then, or around then. Then the real fun will begin...
In a small little nut shell that's what's going on. I had a few rough days emotionally, well and physically too, last week, but having my mom here has helped that a bit. More or less I'm in good spirits, for now, and just trying to find ways to pass the time. Only 4 1/2 to 5 1/2 weeks to go! Thank God for my Mom... and Pandora radio!
Wednesday, October 27, 2010
This Can't Possibly Be Our Life...
This was not part of the plan.
As the weeks until Jillian's birth have quickly dwindled down into the single digits, I've found myself wondering more and more, who's life this is that we're living. I mean, clearly, this is not our life. This was not part of the plan, even if the plan wasn't clearly laid out.
Last night, JR and I were talking about how fast this is all going. How fast Jillian's birth, which really, has become how fast her (first) surgery, is creeping up on us. And we? Are. Not. Ready. Period.
We know that it has to be better that we found out about Jilly's defects ahead of time. But, lately we've just felt robbed by it. Our anticipation for her arrival has become less excited and more worried. Instead of only having 5-8 weeks left to get everything ready for her to come home, we still have... a lot more than that, once hospital time is figured into the equation. Instead of wondering how the heck I'm going to manage being home with an almost 4 year old, 2 and a half year old and newborn, I'm wondering how I'm going to manage being away from my husband and my boys, in order to be with my daughter in the hospital, willing her to fight for her life. I don't know what size clothes to buy her, because I don't have any clue when she'll be home. After 6-8 weeks in the hospital will she be newborn sized still? Will she be preemie sized thanks to the surgery? Or will she be bigger?
Right now we should be eagerly anticipating the day our family becomes complete. But this diagnosis has made us wish we could slow down time. It has us hoping to somehow drag out this pregnancy as long as possible in order to give her the best chance possible. Her kicks and rolls and stretches should be giving us nothing but joy and happiness, but they've somehow become a constant reminder of the fight she will have on her hands from the moment she is born.
We're having to plan for the boys to be at the hospital when she's born so they can quickly see her before she is taken away and prepared for surgery. We don't know if they'll be able to hold her. Or kiss her. We're just hoping they'll be able to see her. They won't be able to see her for at least a week after her surgery. And that? Sucks.
So, for now we're just trying to stay positive. Trying to concentrate on what we can do. Trying to "keep her in there" for as long as possible.
I guess we're still adjusting to this life.
As the weeks until Jillian's birth have quickly dwindled down into the single digits, I've found myself wondering more and more, who's life this is that we're living. I mean, clearly, this is not our life. This was not part of the plan, even if the plan wasn't clearly laid out.
Last night, JR and I were talking about how fast this is all going. How fast Jillian's birth, which really, has become how fast her (first) surgery, is creeping up on us. And we? Are. Not. Ready. Period.
We know that it has to be better that we found out about Jilly's defects ahead of time. But, lately we've just felt robbed by it. Our anticipation for her arrival has become less excited and more worried. Instead of only having 5-8 weeks left to get everything ready for her to come home, we still have... a lot more than that, once hospital time is figured into the equation. Instead of wondering how the heck I'm going to manage being home with an almost 4 year old, 2 and a half year old and newborn, I'm wondering how I'm going to manage being away from my husband and my boys, in order to be with my daughter in the hospital, willing her to fight for her life. I don't know what size clothes to buy her, because I don't have any clue when she'll be home. After 6-8 weeks in the hospital will she be newborn sized still? Will she be preemie sized thanks to the surgery? Or will she be bigger?
Right now we should be eagerly anticipating the day our family becomes complete. But this diagnosis has made us wish we could slow down time. It has us hoping to somehow drag out this pregnancy as long as possible in order to give her the best chance possible. Her kicks and rolls and stretches should be giving us nothing but joy and happiness, but they've somehow become a constant reminder of the fight she will have on her hands from the moment she is born.
We're having to plan for the boys to be at the hospital when she's born so they can quickly see her before she is taken away and prepared for surgery. We don't know if they'll be able to hold her. Or kiss her. We're just hoping they'll be able to see her. They won't be able to see her for at least a week after her surgery. And that? Sucks.
So, for now we're just trying to stay positive. Trying to concentrate on what we can do. Trying to "keep her in there" for as long as possible.
I guess we're still adjusting to this life.
Thursday, October 14, 2010
Questions
I feel like everything has caught up with me today. Emotionally and physically I'm worn out. I've tried to be strong for the last 6 weeks but... I feel like that's slipping away. I'm starting to realize that through all of this I need to be honest with myself. Yes, I'm optimistic. Yes, I'm hopeful. Yes, I believe we're making the right decisions. But I'm also hurting. Deep down, this just hurts.
Through all of this I've had amazing people come forward in support for us. I've met some people who have gone through this, and other things parents shouldn't have to go through, too. And while all of that makes me feel better, it still can't heal the hurt. It doesn't get rid of the guilt I feel and it doesn't completely ease the pain. It doesn't make this go away and it doesn't answer any questions. I'd like to say that my heart is broken, but I've been shown now, twice, what a truly broken heart is. I'd like to say that something positive has to come out of this, and honestly I do feel that way, but why does there have to be so much pain first?
I've asked myself a million times why this is happening? Why does this have to happen to my family? Why is it my kids that have to go through this? Even though it will be Jillian going through the surgeries (and Athan before) it is ALL three of my kids and ALL of us who are affected by this. Why does it have to be MY kids? Why does it have to be JR? And why does it have to be me?
It's not like I'd wish this upon anyone else. But I wouldn't wish it for myself, either. It all just seems so unfair. I hate to host my own pity party- truly I have tried my best not to- but really? Two babies with heart conditions? Wasn't one enough? And why three or more surgeries this time? What did I do to deserve this? Was there something I was supposed to learn after Athan's surgery that I didn't? Some lesson that I was blind to, that if I'd understood would have changed all of this? Did I want a little girl too much? Did I wish too hard for another baby to make my family "complete" instead of just being happy with what and who I had? Why is it me who has to excitedly and at the exact same time apprehensively count down the weeks until she is born? Why is it us who have to try to put on a happy, brave face everyday when really we're mad and scared and hurt inside? Why is it that we are the ones that have to face the fact that our baby might not come home with us? I just don't get it.
The rational side of me wants to say its just something in our DNA. One of those crazy things where you have to have two parents who carry a recessive trait and JR and I both just happen to have it and twice now that recessive trait has decided to come through... or something like that... High School genetics was a long time ago...
But then there's this other side of me.This side that asks all these questions and wants answers that aren't based in science. Who cares if it's genetics? The fact still remains that this is happening to MY family. The truth is, it will be MY baby that I have to watch fighting for life- again. Something so many people- myself included with Oli- take for granted. I don't blame them, and I don't blame myself for doing it with Oli. After all, that is how its supposed to be. A newborn shouldn't be required to fight for their life from the second they are born. So how come some of them do?
Through all of this I've had amazing people come forward in support for us. I've met some people who have gone through this, and other things parents shouldn't have to go through, too. And while all of that makes me feel better, it still can't heal the hurt. It doesn't get rid of the guilt I feel and it doesn't completely ease the pain. It doesn't make this go away and it doesn't answer any questions. I'd like to say that my heart is broken, but I've been shown now, twice, what a truly broken heart is. I'd like to say that something positive has to come out of this, and honestly I do feel that way, but why does there have to be so much pain first?
I've asked myself a million times why this is happening? Why does this have to happen to my family? Why is it my kids that have to go through this? Even though it will be Jillian going through the surgeries (and Athan before) it is ALL three of my kids and ALL of us who are affected by this. Why does it have to be MY kids? Why does it have to be JR? And why does it have to be me?
It's not like I'd wish this upon anyone else. But I wouldn't wish it for myself, either. It all just seems so unfair. I hate to host my own pity party- truly I have tried my best not to- but really? Two babies with heart conditions? Wasn't one enough? And why three or more surgeries this time? What did I do to deserve this? Was there something I was supposed to learn after Athan's surgery that I didn't? Some lesson that I was blind to, that if I'd understood would have changed all of this? Did I want a little girl too much? Did I wish too hard for another baby to make my family "complete" instead of just being happy with what and who I had? Why is it me who has to excitedly and at the exact same time apprehensively count down the weeks until she is born? Why is it us who have to try to put on a happy, brave face everyday when really we're mad and scared and hurt inside? Why is it that we are the ones that have to face the fact that our baby might not come home with us? I just don't get it.
The rational side of me wants to say its just something in our DNA. One of those crazy things where you have to have two parents who carry a recessive trait and JR and I both just happen to have it and twice now that recessive trait has decided to come through... or something like that... High School genetics was a long time ago...
But then there's this other side of me.This side that asks all these questions and wants answers that aren't based in science. Who cares if it's genetics? The fact still remains that this is happening to MY family. The truth is, it will be MY baby that I have to watch fighting for life- again. Something so many people- myself included with Oli- take for granted. I don't blame them, and I don't blame myself for doing it with Oli. After all, that is how its supposed to be. A newborn shouldn't be required to fight for their life from the second they are born. So how come some of them do?
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