When we found out we were pregnant I was so excited to join the "parents" group and "mommy club"!!! I was finally going to be a Mommy!!! It was this world that I wanted to be in, like a secret group filled with play groups and conversations that I had only dreamed about. Except when our daughter arrived God gave us a secret special invitation that only 1 in 8 babies receives. We received our invitation into the premature babies parenting group....a group I wasn't sure I wanted to be apart of.......it was not the group we had planned for.
During our NICU stay some days were lonely and hard, sometimes we felt as if we had no one who really understood us or our situation. The days when we came home many had a hard time understanding why we secluded ourselves (during RSV/FLU season we kept Maelee in the house majority of the time), and we knew our situation was different but still felt alone in our choices. When we have to take Maelee to appointment after appointment sometimes the road feels long and narrow with no one to turn to. So many people love us, ask questions, and care....but finding someone who understands or has been there is sometimes all we want/need.
We have been blessed with friends and family who love us and our sweet baby and for that we are grateful! But there will be moments they won't be able to understand and situations they haven't been faced with and in these times God gave us the preemie parents who have come into our lives with open arms, love, and support!
Lee and I met an amazing couple in our pre baby safety class about a month before Maelee was born.....at the end of that class we never thought we would see any one of those couples again, but we had no idea what was planned. Two days after Maelee was born I walked into the NICU and much to our surprise they were there with their sweet baby boy- born too early as well, a very sad situation to be in. I hated to see them there but found so much comfort in seeing their faces each day. I am forever grateful that God put them in our lives and that we continue to stay in contact! Having a preemie Momma to talk with helps keep me sane sometimes! :)
There is an amazing community of preemie parents out there and we are so thankful to have met some and others who we have just spoken with through email! The support they have shown us in all our decisions is unlike anything else. They truly "get it"! No one will understand a preemie parent's choice to stay home for months on end during RSV/FLU season, not to go to a birthday party with lots of kids in the middle of winter or possibly ever, stay home from big gatherings to avoid over stimulation, hand sanitizing like there is no tomorrow, physical therapy, adjusted vs. actual age, how important even the smallest milestone is, appointments, appointments, and more appointments like a preemie parent! :)
I am proud that Maelee is 1 in 8! She is something very special! And we are glad God gave us our invitation!
Life doesn't always go as you have planned, but the ride is what makes it so magical! This is our journey with our 33 week preemie and all the life rides we have taken since leaving the NICU that 39th day.
Sunday, April 22, 2012
Tuesday, April 17, 2012
Do you want to have more babies?
Asking a mother if she plans to have more children is a common question that comes with parenting. This is a question we knew we would be asked and we knew what our answer would be. The problem comes in when people ask in rude, unkind, judgmental, and overall just hurtful ways. Now don't get my wrong we have been asked this by many in a polite fashion but this is my blog and a way to get my feelings out so I am going to address the hurtful things that have been said about this matter.
"You don't want more babies do you? You wouldn't want to do this to another child, would you?"
"I can't imagine you would want to have anymore children after all you put your daughter through."
"You don't know what is going to be wrong with the next one so why would you want another baby?"
"Maybe next time you can do more to prevent this from happening."
......and the list could go on.
I know many will read this and think to themselves that there is no way anyone would say those things. Remember that the next time you are quick to make a statement or a comment....sometimes a little tongue slip can really hurt someone.
When these things were said to me I used to defend myself but I am now ok with the fact that some people allow ignorance to take over and crappy things are said. I did nothing to cause my pregnancy complications. Having a bicornuate uterus was given to me from God when I was born, pre-eclampsia is something my body did without me doing anything, having my water break at 33 weeks was another thing my body did......all these things were under GOD's control and although it wasn't what I wanted at the time I wouldn't trade my situation or my daughter with anyone. She is the blessing through the storm and we are forever grateful she is here with us.
As for more babies. We don't know. Many things will have to be thought about before we even decide to venture down that rode again. As of right now my answer would be no more.....but that may change in 3-5 years. Maelee is a joy and I would love another sweet baby to snuggle on.......
But when I think of pregnancy and birth I don't think the normal happy thoughts. I think of the many doctor appointments I would have since I am high risk, I think of the fear and stress that goes with not knowing what will happen....would I carry to term, would I deliver early, would I deliver even earlier!?!? I find myself thinking about Maelee and how would we manage with a baby in the NICU and a daughter at home!? These are not normal things to worry about but they are the reality we live.
I get sad when thinking I may never have the "normal" pregnancy or birth. I may never carry a baby to term, leave the hospital with my baby when I am discharged, I may never know what breastfeeding is like, I may never know the joy of having a newborn at home, never knowing the lack of sleep from having a baby home instead of not sleeping because your baby is in the hospital. These are all things that I may never have.....but for all those things there are a million more I do have. I have Maelee!
"You don't want more babies do you? You wouldn't want to do this to another child, would you?"
"I can't imagine you would want to have anymore children after all you put your daughter through."
"You don't know what is going to be wrong with the next one so why would you want another baby?"
"Maybe next time you can do more to prevent this from happening."
......and the list could go on.
I know many will read this and think to themselves that there is no way anyone would say those things. Remember that the next time you are quick to make a statement or a comment....sometimes a little tongue slip can really hurt someone.
When these things were said to me I used to defend myself but I am now ok with the fact that some people allow ignorance to take over and crappy things are said. I did nothing to cause my pregnancy complications. Having a bicornuate uterus was given to me from God when I was born, pre-eclampsia is something my body did without me doing anything, having my water break at 33 weeks was another thing my body did......all these things were under GOD's control and although it wasn't what I wanted at the time I wouldn't trade my situation or my daughter with anyone. She is the blessing through the storm and we are forever grateful she is here with us.
As for more babies. We don't know. Many things will have to be thought about before we even decide to venture down that rode again. As of right now my answer would be no more.....but that may change in 3-5 years. Maelee is a joy and I would love another sweet baby to snuggle on.......
But when I think of pregnancy and birth I don't think the normal happy thoughts. I think of the many doctor appointments I would have since I am high risk, I think of the fear and stress that goes with not knowing what will happen....would I carry to term, would I deliver early, would I deliver even earlier!?!? I find myself thinking about Maelee and how would we manage with a baby in the NICU and a daughter at home!? These are not normal things to worry about but they are the reality we live.
I get sad when thinking I may never have the "normal" pregnancy or birth. I may never carry a baby to term, leave the hospital with my baby when I am discharged, I may never know what breastfeeding is like, I may never know the joy of having a newborn at home, never knowing the lack of sleep from having a baby home instead of not sleeping because your baby is in the hospital. These are all things that I may never have.....but for all those things there are a million more I do have. I have Maelee!
Thursday, April 12, 2012
PT, OT, Neurologist....Oh my!
I would be lying if I didn't say I was scared to death for my child. I have been scared most days since she was born. I was scared when she was in the NICU, scared when they let me take her home, scared at every doctor appointment, and I am scared to death for tomorrow.
Tomorrow we will be taking Maelee to a pediatric neurologist. Maelee has high muscle tone (hypertonia) in her legs and left arm, a little on the right arm. She is stiff the majority of the time. Getting her in the car seat can be challenging, giving her a bath is sometimes a very hard task, and trying to change her on a very stiff day is almost impossible.
We noticed the stiffness around 5 1/2-6 months and brought it up at her well visit at the beginning of March. We were told to watch it and let them know if we had any more concerns, well over the month of March it became apparent that Maelee's muscles were stopping her from rolling, sitting, and even putting her feet down (she tries to stand directly on her toes or stands on the outsides of her feet). We brought Maelee back to the pediatricians office and they were now as concerned as we were- she was referred at the end of March to receive physical therapy, occupational therapy, and to see a pediatric neurologist.
Maelee has had 3 sessions of physical therapy and we are so thankful for this! The days she has therapy Maelee is able to move better and it is amazing to see her roll without a struggle. Her therapist is such a wonderful woman who has taken the time to get to know Maelee and who seems to really enjoy her time with her. Maelee is scheduled to have physical therapy once a week for a minimum of 6 months. We are on the list for occupational therapy and are hoping that will begin in the next few weeks.
Going to a neurologist was something we never considered Maelee would need this young. I figured when she was 13 and possibly got migraines like I did she would need to go, but at 7 months. The hardest part of being a Nurse is knowing what signs and symptoms go with certain disorders......its never a good thing when it comes to your child. I know the things hypertonia is associated with, I know the risk factors my child already has, and I know the outcomes can vary. Tomorrow we will be meeting her neurologist, he will probably just evaluate her, maybe schedule a MRI or imaging study, and then schedule a follow up. Many times it's a wait and see thing. They want to wait and see if this is related solely to prematurity or not- I don't want to wait and see anymore.
As her mother I felt guilty when Maelee was born early. I felt guilty when she was hooked up to all those machines, tubes, and wires. And now to think her prematurity has caused something else; something that may just go away or something she may live with forever.
I pray she learns to stand, I pray she learns to put those feet down, I pray she learns to walk and to run, I pray she is always happy no matter what, and most of all I pray that she is forever my Maelee! No matter the outcome I do not want a label or treatment of any kind to determine my little girl or to change who she is. I won't allow it. She is perfect in every way!
Tomorrow we will be taking Maelee to a pediatric neurologist. Maelee has high muscle tone (hypertonia) in her legs and left arm, a little on the right arm. She is stiff the majority of the time. Getting her in the car seat can be challenging, giving her a bath is sometimes a very hard task, and trying to change her on a very stiff day is almost impossible.
We noticed the stiffness around 5 1/2-6 months and brought it up at her well visit at the beginning of March. We were told to watch it and let them know if we had any more concerns, well over the month of March it became apparent that Maelee's muscles were stopping her from rolling, sitting, and even putting her feet down (she tries to stand directly on her toes or stands on the outsides of her feet). We brought Maelee back to the pediatricians office and they were now as concerned as we were- she was referred at the end of March to receive physical therapy, occupational therapy, and to see a pediatric neurologist.
Maelee has had 3 sessions of physical therapy and we are so thankful for this! The days she has therapy Maelee is able to move better and it is amazing to see her roll without a struggle. Her therapist is such a wonderful woman who has taken the time to get to know Maelee and who seems to really enjoy her time with her. Maelee is scheduled to have physical therapy once a week for a minimum of 6 months. We are on the list for occupational therapy and are hoping that will begin in the next few weeks.
Going to a neurologist was something we never considered Maelee would need this young. I figured when she was 13 and possibly got migraines like I did she would need to go, but at 7 months. The hardest part of being a Nurse is knowing what signs and symptoms go with certain disorders......its never a good thing when it comes to your child. I know the things hypertonia is associated with, I know the risk factors my child already has, and I know the outcomes can vary. Tomorrow we will be meeting her neurologist, he will probably just evaluate her, maybe schedule a MRI or imaging study, and then schedule a follow up. Many times it's a wait and see thing. They want to wait and see if this is related solely to prematurity or not- I don't want to wait and see anymore.
As her mother I felt guilty when Maelee was born early. I felt guilty when she was hooked up to all those machines, tubes, and wires. And now to think her prematurity has caused something else; something that may just go away or something she may live with forever.
I pray she learns to stand, I pray she learns to put those feet down, I pray she learns to walk and to run, I pray she is always happy no matter what, and most of all I pray that she is forever my Maelee! No matter the outcome I do not want a label or treatment of any kind to determine my little girl or to change who she is. I won't allow it. She is perfect in every way!
Back to the blog!
I started this blog to share Maelee's story and to get my emotions out but then I found myself writing blogs and never posting them in fear I would offend someone. Over the past few months many things have happened in our lives that are so wonderful and some that are scary! I will start with a little update blog and then I will continue this blog with the original intention.....to share our story- the whole story; the good, the bad, the ugly, and the honesty.
So here is a brief update on Maelee- some current topics I will write longer blogs about but this should catch up some stuff! :)
Maelee is 7 months old!!! I can't believe it! She has grown so much! At her 6 month well check she weighed 17 pounds and was 25 inches long! I can't believe she started off life at just over 5 lbs and already hit 17 pounds! :)
In January Maelee went back for a follow up visit with her nephrologist (kidney doctor) to have a blood pressure check and see what the stone/calcification was doing in her right kidney. After an ultrasound showed no more stone- yes I said it- NO STONE!!!! God does work in mysterious ways!!! Her blood pressure was just a little elevated but nothing to be concerned about! We were so excited! We go back in July and if her blood pressure remains down and no new concerns, she will be released from their care! I am amazed everyday at how far she has come!
We have started food and Maelee loves it! She does have some difficulty keeping it in her mouth at times but that may be related to a whole other concern (another post for later on). She eats breakfast and dinner! And will drink water from a sippy cup or at least chew the sippy cup! She loves her highchair my Dad bought her while he was visiting over the holidays! Over the past week we tried puffs- she would not touch them but did chew them a little. Textures and touching are something we are working on (again another post to come later).
Maelee is a unique little girl and such a joy! She has blessed our lives beyond measure! I am so lucky to be able to be home with her the majority of the time! I started working as a RN in January but only work 6 days a month....so most days are spent with our little peanut! She is our miracle and I don't want to miss a moment!
Friday, December 16, 2011
Getting Maelee Home
On September 29th we got word that her heart was still functioning poorly and we would continue blood pressure medication until she stabilized....they had no idea the problem or when this would happen. They were sending labs for every infection or problem you could think of, many were things I had never heard of or had read briefly about in nursing school.
Over the weekend of October 1st and 2nd we sat by her beside for hours. We only left to sleep and eat! We kept hoping some lab or test result would return and tell us what was wrong so we could fix the problem. No such luck.
On Monday October 3rd we celebrated Maelee being one month old!!! We were so excited and so sad at the same time. We thought she would be home with us by her one month celebration, we thought the pictures would be of her in our house but instead here we sat in the NICU but we were thankful she was a month old and that she was doing so well!!! So we celebrated the whole day with her! :) I bought her a pretty outfit and hair bow to take pictures in and we took tons of them! Maelee was moved over the the Neonatal Progressive Care Unit......a step down unit of the NICU. They didn't know what was wrong but felt it wasn't life threatening at this point.
Tuesday rolled around and no results yet.....this was driving me crazy. They had repeated the echo on her heart and her function had improved some while she was on her medication. She started off needing the blood pressure medicine every 6 hours and now she only needed it every 8-12 hours. We knew that something bigger was happening. No one knew what was wrong yet she was getting better....
Over the next few days the results of a few tests came back and let us know she didn't have some crazy virus.
On Sunday the 9th we were given great news....Maelee had been medication free for 2 days! I couldn't believe it and was so excited! They gave us hope that we may bring her home soon.....we just didn't know how soon it would be!
Monday the 10th turned into preparation day. All her tests came back and only one was of concern; Her renal labs that were taken that show the effects of the hormones that increase blood pressure in children was elevated.....but now her blood pressure was normal again. The nephrologist was stumped but felt we could be followed outpatient, her blood pressure was normal and the calcification hadn't moved at all.
As the 10th continued we got the best news in the world....Maelee would be going home on the 11th. I remember begin so excited and scared at the same time. This wasn't the first time anyone had told me I could take my baby home! This wasn't the first time we got things ready at home or brought our car seat in.
We left the hospital around 7 pm on the 10th and I just felt so sick to my stomach. We still didn't know what the problem was but we knew that she was doing great and would be coming home.
October 11th is a day I will remember forever! We arrived to find out her repeat echo (I requested they do a rescan to make sure we didn't need cardiology to follow us also) was showing her heart function was almost back to normal!! Nephrology stopped by to let us know we would be doing outpatient blood pressure checks, following her stone/calcification, and redoing labs periodically.
As we waited to hear the best news in the world we packed up Maelee's things, dressed her for the day, and snuggled her as much as we could. After our first experience I felt that loving on her was more important than anything else (the fear of them transferring her or telling me we had to leave her there was haunting me).
Around 10:30 am we were discharged, paperwork was complete, and Daddy was headed to get the car!!! I can't explain the emotion that day. It was more overwhelming than anything I had ever experienced and looking back it was weeks before I realized she was home for good. The nurse pushed a cart with all her things and on top was Maelee in her car seat! She was in the car seat!!!!
Lee pulled up and the emotions just hit me! I cried so hard when they placed her in the car and then I just stared at her all the way home. I rode in the back seat so she wouldn't be alone, for 39 days she had people around her all the time. And in this moment I wanted to surround her with my love.
39 days in the NICU and a lifetime to spend at home! Our sweet little peanut was home! We knew her road would not be easy but we knew she was made of something special. God has a plan for Maelee and it started with her birth and then her being healed......God has a plan for Maelee, a plan bigger than anything I can dream for her!
Over the weekend of October 1st and 2nd we sat by her beside for hours. We only left to sleep and eat! We kept hoping some lab or test result would return and tell us what was wrong so we could fix the problem. No such luck.
On Monday October 3rd we celebrated Maelee being one month old!!! We were so excited and so sad at the same time. We thought she would be home with us by her one month celebration, we thought the pictures would be of her in our house but instead here we sat in the NICU but we were thankful she was a month old and that she was doing so well!!! So we celebrated the whole day with her! :) I bought her a pretty outfit and hair bow to take pictures in and we took tons of them! Maelee was moved over the the Neonatal Progressive Care Unit......a step down unit of the NICU. They didn't know what was wrong but felt it wasn't life threatening at this point.
One month old!!!
Over the next few days the results of a few tests came back and let us know she didn't have some crazy virus.
On Sunday the 9th we were given great news....Maelee had been medication free for 2 days! I couldn't believe it and was so excited! They gave us hope that we may bring her home soon.....we just didn't know how soon it would be!
Monday the 10th turned into preparation day. All her tests came back and only one was of concern; Her renal labs that were taken that show the effects of the hormones that increase blood pressure in children was elevated.....but now her blood pressure was normal again. The nephrologist was stumped but felt we could be followed outpatient, her blood pressure was normal and the calcification hadn't moved at all.
As the 10th continued we got the best news in the world....Maelee would be going home on the 11th. I remember begin so excited and scared at the same time. This wasn't the first time anyone had told me I could take my baby home! This wasn't the first time we got things ready at home or brought our car seat in.
We left the hospital around 7 pm on the 10th and I just felt so sick to my stomach. We still didn't know what the problem was but we knew that she was doing great and would be coming home.
October 11th is a day I will remember forever! We arrived to find out her repeat echo (I requested they do a rescan to make sure we didn't need cardiology to follow us also) was showing her heart function was almost back to normal!! Nephrology stopped by to let us know we would be doing outpatient blood pressure checks, following her stone/calcification, and redoing labs periodically.
As we waited to hear the best news in the world we packed up Maelee's things, dressed her for the day, and snuggled her as much as we could. After our first experience I felt that loving on her was more important than anything else (the fear of them transferring her or telling me we had to leave her there was haunting me).
Around 10:30 am we were discharged, paperwork was complete, and Daddy was headed to get the car!!! I can't explain the emotion that day. It was more overwhelming than anything I had ever experienced and looking back it was weeks before I realized she was home for good. The nurse pushed a cart with all her things and on top was Maelee in her car seat! She was in the car seat!!!!
Lee pulled up and the emotions just hit me! I cried so hard when they placed her in the car and then I just stared at her all the way home. I rode in the back seat so she wouldn't be alone, for 39 days she had people around her all the time. And in this moment I wanted to surround her with my love.
39 days in the NICU and a lifetime to spend at home! Our sweet little peanut was home! We knew her road would not be easy but we knew she was made of something special. God has a plan for Maelee and it started with her birth and then her being healed......God has a plan for Maelee, a plan bigger than anything I can dream for her!
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