I have meant to post a schedule but with the weeks left, I assume this will change in some way, shape or form. BUT for now, this is what we know.
· Once he is born, they will take him for evaluation. Our hope is that we will get atleast 20 mins or so with him before they take him. If he looks good, I will hopefully get some chance to breastfeed him on my own.
· He will go to the NICU first where they will start his IV to keep the ductus open. After, he may come back to the room with us in one of those heater units. This is a MAY or MAY NOT bullet. It is more likely that he will go to the Cardiac Intensive Care Unit over at Childrens.
· Once I am settled and feeling up to par, then get released. We can go over to Childrens and spend whatever time we need with him. I wont be able to breastfeed him once he is in the NICU. They will feed him via IV. He will get lots of tests done and more Echo to reassure us what exactly needs to be done for his surgery. All my milk will be given through tubes and no physical contact between he and I will happen. Not until he can go home. Then I can try to breastfeed or just continue to give my milk in bottles or tubes. Whichever he has or needs.
· Surgery at this time is unknown how soon after birth. It all depends on how little Eli does. So that part, is up in the air. My understanding is that his chest will be open for some time after his first surgery. And just in case they need to go back in and do anything else they add on a few days To keep it open. Once its closed, they will start to ween him from the meds and then work on feeding and his weight gain. Our stay ranges from anywhere from 2 weeks to….well, who knows.
I am certain i will be camera happy those first few days. Blogs will be updated as best as I can and I will have family members post things for us. Thanks again for all your support and love.
Tuesday, April 23, 2013
Helpful emails.
I received a helpful email from another HLHS mom giving me a few pointers on what to take in my hospital bag for little Eli. Her timing couldn’t have been better. My diaper bag came yesterday J
“what we swore by were the carters undershirts that button up the front during hospitilazation. They are nice because you don’t have to pull anything over their heads and you can dress them in them with the heart monitor leads, ect on. We had them in every color and style. Pack socks, helps keep the oxygen lead from being kicked off their big toe. Some blankets of course.”
Huge help. I wouldn’t have even thought about the button down onesies! Looks like I am going shopping JJJ
Starting to think about how close his birth was and how the ability to keep him safe and happy and without pain was going to be out of my hands soon. I think most mothers have the innate desire to protect their child. As his surgery and all the recovery draws near, the more difficult it is for me to understand that it is all out of my hands and that theres only so much I can do to protect him. It just kills me to think about how his world is going to change once he is here. How much he is going to face, and how unfair it is to this little guy who has done nothing to deserve any of it.
Several times a day, it will hit me. I am trying, but its hard not to be scared sometimes. Sometimes, when I am doing okay, I wonder if I am just in denial. I know none of us know what the future holds, but this is just really tough to swallow some days. I had one of those days last Friday.
“what we swore by were the carters undershirts that button up the front during hospitilazation. They are nice because you don’t have to pull anything over their heads and you can dress them in them with the heart monitor leads, ect on. We had them in every color and style. Pack socks, helps keep the oxygen lead from being kicked off their big toe. Some blankets of course.”
Huge help. I wouldn’t have even thought about the button down onesies! Looks like I am going shopping JJJ
Starting to think about how close his birth was and how the ability to keep him safe and happy and without pain was going to be out of my hands soon. I think most mothers have the innate desire to protect their child. As his surgery and all the recovery draws near, the more difficult it is for me to understand that it is all out of my hands and that theres only so much I can do to protect him. It just kills me to think about how his world is going to change once he is here. How much he is going to face, and how unfair it is to this little guy who has done nothing to deserve any of it.
Several times a day, it will hit me. I am trying, but its hard not to be scared sometimes. Sometimes, when I am doing okay, I wonder if I am just in denial. I know none of us know what the future holds, but this is just really tough to swallow some days. I had one of those days last Friday.
Wednesday, April 17, 2013
A friendly email.
Today I received an email from one of our patients who I adore. He's been a joy to have here at the clinic and I enjoy seeing him every year at our dinner dances. I told him about Eli's condition a few weeks back. At the time it was all so new and I couldn't really take it all in like I should have and explain it all. Today he put it in words what he saw even months before we knew of Eli's condition.
Hello, hope you and the baby on the way are doing well. I just wanted to share with you some of what I saw back in November. At that time I thought it was about my partners sister, she is on FB if you want to find her, but she looks a lot like you. But anyway, For some reason I think I'm supposed to tell you. I saw a baby coming, a boy, with blond hair and blue eyes, very cute! I saw him healthy and cuddled in mom's arms in a light blue blanket sitting in maybe a wooden rocking chair. I did see a heart with a crack down the middle, like those broken heart cartoon pics we see all the time, but wasn't sure how it fit in with the rest of my vision. Now I know. Also when I asked for a birth date I got July ?teenth. It is hard to remember now if it was 19th or 17th, but I know it was one of those because it was close to my b-day which is the 21st AND I remember it being an odd number. Anyway, I also all along have had a feeling like there was something special about this baby and I get a very loving sense about it. I don't know how much you believe in spirits and their guidance or psychic phenomena, but my "abilities" are starting to kick back up again after not having much going on for a couple months. So for some reason I felt like I should make sure you knew everything that I "received" back then. Especially now that I know the visions were about you. Again, hope all is well and I will see you sometime in early May.
-a patient
Hello, hope you and the baby on the way are doing well. I just wanted to share with you some of what I saw back in November. At that time I thought it was about my partners sister, she is on FB if you want to find her, but she looks a lot like you. But anyway, For some reason I think I'm supposed to tell you. I saw a baby coming, a boy, with blond hair and blue eyes, very cute! I saw him healthy and cuddled in mom's arms in a light blue blanket sitting in maybe a wooden rocking chair. I did see a heart with a crack down the middle, like those broken heart cartoon pics we see all the time, but wasn't sure how it fit in with the rest of my vision. Now I know. Also when I asked for a birth date I got July ?teenth. It is hard to remember now if it was 19th or 17th, but I know it was one of those because it was close to my b-day which is the 21st AND I remember it being an odd number. Anyway, I also all along have had a feeling like there was something special about this baby and I get a very loving sense about it. I don't know how much you believe in spirits and their guidance or psychic phenomena, but my "abilities" are starting to kick back up again after not having much going on for a couple months. So for some reason I felt like I should make sure you knew everything that I "received" back then. Especially now that I know the visions were about you. Again, hope all is well and I will see you sometime in early May.
-a patient
Tuesday, April 16, 2013
Another echo.
Things went as well as they could have at our second echo. HLHS is still the main diagnosis. No other defects with his heart right now which is very good. Other common issues could be leaking, hole in between the ventricles, ect. He doesn't have any of those!
Eli weighed in at 1.10lbs which they didn't say was bad so were going with right on track :)
Doctor appt and ultrasound on the 17th. Next echo is at 32 weeks! They told me I don't have to come every 2 weeks now for an echo since he's doing well! Wahoo :)
Eli is very active. At times it makes me nervous bc he is always moving. Not sure if he ever sleeps. It also makes me worried his little heart is doing too much with all that moving. Oh goodness this child is going to give me gray hair before he even gets here!
Eli weighed in at 1.10lbs which they didn't say was bad so were going with right on track :)
Doctor appt and ultrasound on the 17th. Next echo is at 32 weeks! They told me I don't have to come every 2 weeks now for an echo since he's doing well! Wahoo :)
Eli is very active. At times it makes me nervous bc he is always moving. Not sure if he ever sleeps. It also makes me worried his little heart is doing too much with all that moving. Oh goodness this child is going to give me gray hair before he even gets here!
Monday, April 15, 2013
Tuesday, April 9, 2013
Time is flying by.
I am 25 weeks on Thursday and starting to feel even more overwhelmed than I was with Lucas at this stage. Yes, it's due to the severity of Eli's diagnosis but my panic button is almost ready to be hit. It's overwheling. I read on an HLHS blog that you just hit a point where you stop counting how far along you are and you start counting down how little time is left. I couldnt have said it better myself.
I began to think abou packing the hospital bag. Now that we have an induction date, my timeline is somewhat shorter. While packing the bag for Lucas was so much easier, this time its not that easy. What in the hell am I even going to take this time. Besides the essentials for me, Eli wont need any personal items because of his stay in the nicu after birth. They told us ATLEAST 6 weeks before he could come home! Thats over an entire month folks. AN ENTIRE MONTH! By that time, who even knows how big he will be or able to fit into for a "coming home outfit"!
I have no idea what life looks for us afterwards. Its not like we dont live close enough to Childrens that we couldnt go home and get stuff but I also dont know that Danny or I will even want to leave him. AND how does Lucas play into all of this...I dont want him to feel any less loved or given any less attention too. Ugh, it just makes me so sad. I cant even fathom that right now.
I just feel so out of control. Overwhelmed, and nervous. I just dont know what to expect. I wish I could get my brain to just focus but its just not wanting to do that.
What I really need is a tall bud light...how wonderful would that be :)
Next up: Fetal Echocardiogram on April 15th. Growth ultrasound on April 17th.
I began to think abou packing the hospital bag. Now that we have an induction date, my timeline is somewhat shorter. While packing the bag for Lucas was so much easier, this time its not that easy. What in the hell am I even going to take this time. Besides the essentials for me, Eli wont need any personal items because of his stay in the nicu after birth. They told us ATLEAST 6 weeks before he could come home! Thats over an entire month folks. AN ENTIRE MONTH! By that time, who even knows how big he will be or able to fit into for a "coming home outfit"!
I have no idea what life looks for us afterwards. Its not like we dont live close enough to Childrens that we couldnt go home and get stuff but I also dont know that Danny or I will even want to leave him. AND how does Lucas play into all of this...I dont want him to feel any less loved or given any less attention too. Ugh, it just makes me so sad. I cant even fathom that right now.
I just feel so out of control. Overwhelmed, and nervous. I just dont know what to expect. I wish I could get my brain to just focus but its just not wanting to do that.
What I really need is a tall bud light...how wonderful would that be :)
Next up: Fetal Echocardiogram on April 15th. Growth ultrasound on April 17th.
Monday, April 8, 2013
A good day.
I wasn't able to celebrate with friends on my birthday so they came down to cincinnati and celebrated my 27th bday with me over the weekend. It was a really fun day. I haven't laughed like that in awhile. Given everything that has been going on, I needed a day like that.
We went to the reds game and then ate at bw3. Spent some time at the house watching the ncaa games before heading off to boogie nights. People watching at its finest and lots of laughter!
Thank you girls for making me forgot about all the craziness that's consumed my brain lately :) I love you all!
We went to the reds game and then ate at bw3. Spent some time at the house watching the ncaa games before heading off to boogie nights. People watching at its finest and lots of laughter!
Thank you girls for making me forgot about all the craziness that's consumed my brain lately :) I love you all!
Tuesday, April 2, 2013
My release.
Some days are tougher than others. They are all starting to squish together actually that when I have a good day, it's hard to recognize. I get so angry at what's supposed to be a very happy time in our life. I enjoy pregnancy. This time, I fear it.
I fear that we will come home empty handed after his first surgery.
I fear that Lucas will never know what its like to have another sibling if Eli doesnt make it.
I fear that as a mother, I have failed to give a normal life for this little boy.
I've heard the question over and over again with each check up. How are YOU feeling? I tell them the same answer over and over again. I have days, Im entitled to that. I just wish it was a dream. Like this is all a huge joke or Karma found me and is making up for all the horrible things I have done in my life. I've always given myself credit for seeing the brighter side of situations. Not this time. I'm beating myself up. I know. I am my own worst enemy.
You can only cry so much right? Like when nobody is looking or you wake up in the morning and your pillow is wet and you know it's not slobber or snot. (Danny would probably agree that its slobber but im certain I cry in my sleep). Its the unknown that gets the best of me. I will be the first to admit it.
Control, hope, and some normalcy til the next doctors visit is all we can wish for. Waiting between now and his birth, which is filled with so much uncertainty; the waiting between his birth and his surgeries and the waiting during his surgeries.
The waiting and the uncertainty is too much to handle sometimes.
I thank God more in a day than I probably swallow. We are so blessed to have the support and love everyone has shown. Truly truly blessed. I apologize if I seem irritated or annoyed at you for no reason. My mind is all over the place and I just can't seem to get back to me. In time I will. I just ask for patience. Please.
<3
I fear that we will come home empty handed after his first surgery.
I fear that Lucas will never know what its like to have another sibling if Eli doesnt make it.
I fear that as a mother, I have failed to give a normal life for this little boy.
I've heard the question over and over again with each check up. How are YOU feeling? I tell them the same answer over and over again. I have days, Im entitled to that. I just wish it was a dream. Like this is all a huge joke or Karma found me and is making up for all the horrible things I have done in my life. I've always given myself credit for seeing the brighter side of situations. Not this time. I'm beating myself up. I know. I am my own worst enemy.
You can only cry so much right? Like when nobody is looking or you wake up in the morning and your pillow is wet and you know it's not slobber or snot. (Danny would probably agree that its slobber but im certain I cry in my sleep). Its the unknown that gets the best of me. I will be the first to admit it.
Control, hope, and some normalcy til the next doctors visit is all we can wish for. Waiting between now and his birth, which is filled with so much uncertainty; the waiting between his birth and his surgeries and the waiting during his surgeries.
The waiting and the uncertainty is too much to handle sometimes.
I thank God more in a day than I probably swallow. We are so blessed to have the support and love everyone has shown. Truly truly blessed. I apologize if I seem irritated or annoyed at you for no reason. My mind is all over the place and I just can't seem to get back to me. In time I will. I just ask for patience. Please.
<3
Part 2/3 of Amnio results
I saw that dreadful number come up on my phone. I didnt answer. Im at work. What if they found something else wrong. It wouldnt be good for me to take the call without Danny here.
I buckled. I called her back. Sometimes I think she has more anxiety making the calls than we do as parents answering it. I mean come on. Who wants to tell anyone that your baby has a problem....or life expectancy of an ant. Seriously!
She told us that all 46 chromosomes matched up and all look normal. We have one more test from the amnio to get and that will be another week or so until we get the results! My heart eased up a bit and I was able to call Danny and let him know without any hesitation. Thank GOODNESS!
We had our intake visit today over at Good Sam Hospital. They got me all squared in with the new practice and my Induction date is set for July 22. Given baby Eli makes it that long. Thats one day longer than Lucas so we shall see! I hope he does, baby boy needs to BAKE! Overall I am comfortable with the new surroundings and new doctor, although I miss my doc that I once worked for and he has been a great family friend to us. I have settled in. I am sure they didnt like my atittude at first transferring into their new practice but this was all so new to me and I just didnt know how the adjustment was going to go! So far so good!
So overall the last week has been good. Our spirits are up and the HLHS wristbands for Eli are still selling which makes us very happy to know we have the support from you all.
Thanks again everyone for your blessings :)
I buckled. I called her back. Sometimes I think she has more anxiety making the calls than we do as parents answering it. I mean come on. Who wants to tell anyone that your baby has a problem....or life expectancy of an ant. Seriously!
She told us that all 46 chromosomes matched up and all look normal. We have one more test from the amnio to get and that will be another week or so until we get the results! My heart eased up a bit and I was able to call Danny and let him know without any hesitation. Thank GOODNESS!
We had our intake visit today over at Good Sam Hospital. They got me all squared in with the new practice and my Induction date is set for July 22. Given baby Eli makes it that long. Thats one day longer than Lucas so we shall see! I hope he does, baby boy needs to BAKE! Overall I am comfortable with the new surroundings and new doctor, although I miss my doc that I once worked for and he has been a great family friend to us. I have settled in. I am sure they didnt like my atittude at first transferring into their new practice but this was all so new to me and I just didnt know how the adjustment was going to go! So far so good!
So overall the last week has been good. Our spirits are up and the HLHS wristbands for Eli are still selling which makes us very happy to know we have the support from you all.
Thanks again everyone for your blessings :)
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