Monday, January 6, 2014

Be Glad it's YOU

I've had two babies in the NICU.  The trauma of seeing your beautiful newborn attached to life support, breathing apparatus, IV's in every appendage, can leave a wound that never truly heals.
My darling boy at 3-4 weeks

While my second NICU baby was hospitalized, I felt angry every time I saw a healthy baby.  Every time I saw a pregnant woman.  I would instantly judge them, and think to myself - they don't deserve their baby as much as I do.

It's hard to admit that's what I thought, but it's the truth.  My brain and my heart aren't always in synch.

I would see a newborn crying in their carseat in the grocery store and want to take the child out, comfort him/her and scold the mother for not knowing how lucky she was.  I would see pregnant women outside the hospital smoking, and want to scream "I did everything right and have a sick child - your child will probably be healthy and you don't even care enough to quit smoking!!!"

These thoughts didn't help me.  I knew they were wrong, and tried being extra kind to the women I was secretly loathing.  Kindness is always the answer, by the way.

I'm writing this to say to all the Mothers like me, I'm glad it was you.  I'm glad it was me.  

A week after being discharged from the NICU we were back in the hospital with heart failure.  When I was in the PICU (Pediatric Intensive Care Unit) there was a darling little girl in the room next to us.  During our 8 day stay, I saw her mother once.  She was there for half an hour.   That precious 11 month old girl was in a crib, in her room, by herself - 24 hours a day.  No Mommy singing to her.  No one letting her out of her crib to play with the toys that littered the room like a sad reminder of the life she should have been having.  Nurses would chat with her when they were checking stats, administering meds, etc. but they were busy with so many patients they couldn't devote much time to her.  

A volunteer came to my room, offering to cuddle my baby if I wanted to leave for a shower or take a lunch break.  I politely declined, but asked why she wouldn't be in the room next door with the little one who was always on her own.  She informed me that her mother forbid others to go in and play with her daughter.  She didn't want anyone else bonding with her little girl.  

I cried.

I stayed with my baby, night and day, and my other children would come visit us during the day.  Their hearts broke for the little girl next door.  She was in isolation, but that didn't stop them from standing at her door singing songs, and dancing to entertain her.  My two year old had to be pulled from that doorway.  Forced away.  She wanted to sing and play peek-a-boo non-stop with the baby on her own.  My older sons cried for her, unable to understand how something so wrong could be allowed in plain view. 

I'm not sharing this with you because there was a happy ending.  I don't know what happened to that little girl.  I'm sharing this with you to help ease the struggle some of us with sick children have.  Be glad it's you.  A Mom who puts everything on hold to care for their poorly child.  A Mom who cares enough to sit sleeping upright in uncomfortable hospital chairs.  A Mom who is there to listen to doctors, specialists, nutritionists, nurses on how they feel your little one is doing.  

Be thankful that a sick child, who needs love more than ever, has YOU.  

It's hard to hold down a little arm while a needle goes in.  It's heartbreaking to watch a little one be sedated to help them deal with the pain they are experiencing.  It's physically exhausting to tend to the needs of someone who is helpless, letting your needs come secondary or not at all.  

It's more difficult to know that there are children without a Mom like you.  Alone for bedtime.  Alone for needles.  Alone for doctors coming in and out.  

Take a deep breath Mommies.  You are the best thing that ever happened to your child.  You know them better than any doctor, you care for them better than any nurse, and you love them like no other.  Be thankful your child has you, and keep up the good work.  




- I know there are many fathers who can relate to this, who care for their children when they are sick.  My husband is one of those fathers.  I am not trying to exclude you.  I wanted to address moms.  There is something deep within the heart of a mother that feels responsible for their child being sick.  Something we ate during pregnancy.  Something we did.  Something we thought!  Secretly festering in the depths of our hearts is the fear that we brought a helpless child in to this world to suffer.  We can barely admit it to ourselves, let alone any other living soul.  I know you fathers are the ones holding things together.  Taking the other children to the library so they have some "normal" in their lives.  Getting oil changes.  Managing life so that Moms like me can stay by their child's side.  You are every bit as important as the Mom - believe me, you are.  I just wanted to reach out to who I know, who I can definitely say - yes, I relate to that.  If my husband ever writes a post like this, he can address it to Dads and Dads only.  Keep up the good work Daddies - I know this world would crumble without decent fathers who do the right thing when it is the hard thing.  -






If you can relate to this story, be sure to read
 The Burden of Fear

100 comments:

  1. I've read this like 5 times. I cry every time, lol. It is so hard, and *so* important, to care for little ones the way they need it. Every ounce of my love to you, your friend, your whole beautiful family. <3

    ReplyDelete
  2. Absolutely beautiful, its like you have read my mind. The hospital is our second home and I see this same situation often, you put a smile on my face because like you we will never leave our little boy alone daddy or I are always by his side. Thank you for sharing.

    ReplyDelete
    Replies
    1. My pleasure. Keep up the good work, and I hope the hospital becomes a distant memory sooner than later.

      Delete
  3. Beautifully written. Thank you for sharing.

    ReplyDelete
    Replies
    1. You're very welcome, thank you for kind words.

      Delete
  4. This is exactly what I remember from our 4 months. Everyday and night at the hospital. Watching my daughter fight for her life and nearly losing that battle many times. It always broke my heart to see all the other children alone and in need of positive touch. I just wanted to be a positive touch for them instead of all the negative via needle, RT, monitor s, ect. So very thankful I could be there, I don't know the situation any of those parents faced and why they couldn't be there on the regular, that must have been so painful too. So blessed to have my miracle here still to watch her grow.

    ReplyDelete
    Replies
    1. Thank you for sharing. I know that the ones who are able to stay, or spend most of their time there are the lucky ones - and that the mothers and fathers who absolutely can not be there need love and support. I'm glad you were one of the lucky ones too.

      Delete
  5. You. You are the awesomest. I have felt everything you describe at the beginning of your post, and I found myself nodding my head at everything you wrote in the remainder of the post. When my son was in the NICU, there was a baby in the section next door. The family was Indian, I think. That doesn't really matter, except I think there were some cultural nuances at play in what I observed. They rarely visited their child, while I...I was there as much as possible. I was fortunate enough to be put up in the hospital hotel following my c-section, so I can't judge too much because I could be there anytime I wanted...anytime the transportation bus would take me there while my husband was at work and my 2 year old at daycare. There was pain in the mother's eyes. It was clear her husband was the one calling the shots, and he would only let her stay with the baby for short periods of time every once in a long while. It broke my heart. This post speaks so much more to me than the "God gives special children to special parents" or the "Everything is in God's plan" cliches. Thank you for this. Thank you.

    ReplyDelete
    Replies
    1. You are so very welcome. I hope all is well with your little one now.

      Delete
  6. Thank you.

    My daughter, who is 7 months old, was in the hospital for the first four months of her life. 3 open heart surgeries, kidney failure, on ECMO alert for two weeks. My introduction to parenthood was having a sick baby right from the get go. I, like you, witnessed a child being abandoned in the PICU and I, also like you, cried for her. You're so right. I am so glad I am my little girl's mom. I am so glad she has me and I have her.

    You honestly took the words right out of my brain this evening.

    <3

    ReplyDelete
    Replies
    1. I absolutely love taking words out of people's brains! Thank you for sharing some of your struggle. I'm honoured by your thanks, and hope your daughter is doing well.

      Delete
  7. sad thing is we don't know the other mom's situation, though why you would keep other from loving your child I can't understand,. but the being away... maybe she is a single mom with no family and another child, maybe she works 3 jobs to keep food on the table and pay for her child's medical expenses. thought is is so so hard to see a child alone, or anyone in the hospital for that matter we don't know the whole store... try not to judge. <3

    ReplyDelete
    Replies
    1. I certainly hope you didn't find judgement in my post. I do know more of the story of the little girl beside us, but chose not to share so I could avoid anything that sounded judgemental.

      There are so many parents who wish they could be at the bedside of their sick child. I saw those parents, late at night, on the weekend. I hugged some of those mothers as they wept and asked if their child cried often or not. I understand there are many parents who are not able to spend the time they'd like with their child.

      Sadly, there are parents who choose not to be with their child for selfish reasons. I've heard, from their mouths, that it is too difficult to watch. They don't drive. Excuses that just don't cut it. Even in those instances, I don't judge. My job, as a human, is to show love and kindness - judging is absolutely never my job. I did my best to stay away from harsh sounding judgements in my post, and hope that instead of judging other parents on how well they are/aren't doing - we can be glad our children have us.

      Delete
  8. So beautifully written and eloquently stated. Nobody knows how it feels to be the mother of a sick child better than the mother of a sick child. Even when our children's problems differ, we still have a common thread

    ReplyDelete
    Replies
    1. We do. That's why I wrote this. I spoke with another mother of a sick child, and we both expressed the "why us" part of this post. It was later that evening when I looked at my son and thought "I'm so glad we have each other"….

      Delete
  9. I hope my long comment that took me two hours to type on my phone went through I keep refreshing but not seeing it darn it! I hate my phone!

    ReplyDelete
    Replies
    1. Nope that one came right up! Grrrr!

      Sum it up best I can:
      (1999 and 2000 had two healthy girls by 2002 they were wrongfully removed from my loving single arms and adopted to strangers because circumstances out of my hands arose from the financial strain of having court orders and drug screens to pay for on top of bills and house payments they wouldn't resolve and that would be my hugest loss in my life and I will say that until the day I die)

      Delete
    2. 2003 I had my first son he was "grunting" and was in nicu for three days and I sat by his bed and with every chirp those machines made I was up by his side checking on him. He was the biggest baby on the floor 8lbs 6.3 oz I think.

      2005 had another son without a hitch this time.

      Delete
    3. 2008 found out baby girl was very sick had Hlhs and Turner syndrome. Traveled nearly 1,000 miles from home to give her the best care possible. But 19hrs and 34mins and 2/3rds of her hybrid surgery completed she lost her battle. We donated her to science to help other babies like her. On our way home two days later when my milk had came in full force we stopped at a rest stop where there was a parent shoving a bottle into the mouth of a screaming baby who had probably been in the car seat a long time and was still in it. My boobs ached so bad after awhile of listening to this baby choke on the formula being shoved in its mouth I went over and said you probably are enjoying stretching out after that long drive, maybe your baby would like to do the same?" And yeah finally idiot took the baby out and it whimpered a bit but calmed down and burped a bit and was fine shortly there after. Ran into a lot of idiot parents like this along the long trip home yearning to pick them all up and breast feeding them because I was about to burst! I tried pumping and cabbage and ice packs and yeah nothing helped! I totally felt like they'd didn't deserve the baby they were blessed with! People don't know how rare a healthy baby is these days! And most throw them away with abortion which was highly recommended when we got these diagnosis on our daughter and quickly I refused that as an option. Then they recommended compassionate care where she live as long as she can without medical intervention another denied option I was fighting for her life and wasn't going to just get there and not give her a fighting chance.

      Delete
    4. My mom died from skin cancer four months later (2009)

      2011 I was pregnant with baby six and a surprise baby no known sex and healthy sonogram no heart issues nothing concerning perfect pregnancy. Due June. March 17, 2011 I'm worried a bit fear I hadn't felt baby move in awhile surely my imagination! Try all the tricks of the trade but still nothing but maybe all the activity I did that day wore the baby out and by morning they would move then surely. Cried myself to sleep begging God that this wasn't true that the baby just was tired. Next morning still nothing. So we load up and take the two boys to their grandparents and head to the hospital. Doppler finds no heartbeat so they bring in the sonogram machine to confirm. A motionless baby is on screen. They confirm and induce me. I have a son at 28 weeks gestation. Not even a week before we got the clean bill of health sonogram and now I'm holding my limp baby boy in my arms! How can this be?!

      Delete
    5. Everyone stops hanging around me, inviting me to get togethers, etc. I'm alone. Am I cursed? Do I have a contagious thing?

      I'm now due with my seventh and final baby. I was on pain meds when I found out I was pregnant. I've been scared to death but just got another clean bill of health on this baby girl. I'm nearing my 28 week mark and am more anxious than ever. Doctor said my sons death even if we had done sonograms everyday his cord getting kinked wouldn't of been able to be caught and prevented. But he is going to do sonograms every week to ease some worry I have about baby girl.

      I totally relate to your post! Thank you for posting my feelings on here for me to not feel so alone in my secret feelings that I'm the only person who deserves a healthy baby. Etc.

      My babies were lucky to have me as their mother, I got to keep my stillborn son all that night and on into the morning of the next day. I was blessed. I fought to keep my daughter alive for nine months and said goodbye but allowed doctors to learn from her so others like her could be better helped. And my biggest loss I fought 15 months to do all that was required and it wasn't fast enough nor good enough for the courts and I was and will always be devastated over that loss that shouldn't have been opened in the first place. I was set up and lied to the whole fifteen months through did everything I was told to do and they pulled stuff out of no where saying I knew but I didn't. But all my side was hearsay and their side was facts. I had no chance of winning and now I may never see them again. I can't get pictures of them. They were three and two the last time I saw them and they are now fourteen going on fifteen in march and thirteen going to be fourteen in aug. I miss them every waking hour of every single day. And are and will always be my biggest loss I've faced to date, and I will say this until the day I die.

      Delete
    6. Sorry I went off but it's I'm sure not as long as the original post that didn't post after two hours of typing it on my phone. This took less than an hour so it isn't as long.

      God bless you and your family ten fold! Thank you again I feel validated!

      Idk where to post my story to make a difference in the world. I feel as if all my losses meant nothing to the world like I feel they should. Is that selfish of me? How can I make a difference in the world with my stories of my life? Thank you for any advice.

      Delete
    7. There was a limit on characters sorry so many posts too. Again thank you for validating my feelings by sharing your exact same feelings you have that I have ok yeah I'm very tired now not making much sense at this point so I hope you know what I mean gn! God bless you again!

      Delete
    8. I have an appointment at the hospital this morning, but will type you a proper reply when I am home <3

      Delete
    9. Rebecca, thank you for sharing. You sound like you have had many hardships, and I hope the days of such trouble are behind you. Sharing IS important. Whether or not that's in a support group, on a blog page, or in a Facebook note - sharing is a great way to process events and feelings. I hope you have a good support system - whether it's a family, a church, or a friend. Personally, I find the best way to heal my heart is to find ways to be kind. Giving away your time and talent is a great way to feel good about yourself and rebuild things that may be lost through hardship. I wish you all the best and hope you can find healing and hope.

      Delete
  10. I could be that mom that was there half an hour, having my colon removed when my girl was 11 mos, being a single mom, working full-time & dad walking away. It could be the baby has a condition that isolates her like my girl & so many people stay out rather than gown up. Chances are that volunteer didn't really know the true story. Shame on them for discussing another patient. I have spent 21 mos in hospitals with my daughter. I have other children who need me. Ironically enough the first lesson I learned was don't assume anything about anyone or their pregnancy.

    ReplyDelete
  11. Truthfully that child could have Mersa, VRE or another condition you are not entitled to know of. No one can enter that room unless gowned up. Would you like your baby to have my baby's VRE? Then keep your kids in your room. Also your kids could have compromised that child who is hospitalized for a reason. The mom could have a transportation issue. The volunteer probably made that up because realistically they aren't privileged to family info. They are only there to help. They aren't case managers.

    ReplyDelete
    Replies
    1. Thank you for your comments. My child was in isolation many times, and I'm aware of the routines involved. My children never went in her room, if read carefully, they stood at her door - singing and dancing. There is a lot more "story" to the girl next door. Yes, the nurses, volunteers and other patients weren't entitled to share her information - but they did. I've kept that information to myself, to avoid sounding judgemental. The fact is, that small child was on her own - regardless of the reasons - and that's what was stated.

      I'm going to steal a paragraph from an earlier reply I wrote:
      There are so many parents who wish they could be at the bedside of their sick child. I saw those parents, late at night, on the weekend. I hugged some of those mothers as they wept and asked if their child cried often or not. I understand there are many parents who are not able to spend the time they'd like with their child.

      I hope you did not feel I was judging parents who can not stay by the side of their sick child. This post was to support parents like me. I DO feel we need to move heaven and earth to support our sick children - with grandparents, aunts/uncles, etc. but that many parents don't have those options. I'm truly sorry you had such a difficult time in your life, and hope that things are better now.

      Delete
  12. As a child with a Mommy like this, thank you ... I'm sending this to her and letting her know that maybe she shouldn't have been so hard on herself ... she was always there, her and my father switched places, and had other members switch ... I was never alone! I had several roommates who were, including a little baby boy, who I do know what happened too but I do know he was one of more than a dozen children and his family couldn't be there as often as they wanted (at least now that I'm an adult I tell myself that had to be what kept them away)! I used to wake up in the night and talk to him, one night they found me holding him (after OHS of all things) letting him know he wasn't alone ... sad thing is the parents have no idea what happens to their children when they are alone ... if it's a teaching hospital, please know your child will be the first one on the ward with 20 students and needles, playing "guinea pig" ... that term was actually used once and my mother had to hold me and swear to me that she'd never leave me to play that part! Thank you for sharing this <3

    ReplyDelete
    Replies
    1. I'm happy you had such a dedicated family. I really think having someone there for you, cheering you on, can make such a big difference. Give your Mom a MEGA hug, you are a lucky daughter!

      Delete
  13. Beautifully written. My two-year-old son has retinoblastoma, a rare eye cancer, that was diagnosed about a year ago. He had one eye removed, 6 months of chemotherapy, and monthly exams under anesthesia. My husband and I were by his side for it all. We don't have any other children (yet), so we could be there for everything. There was also another child whose family was rarely there, and it broke my heart. I cannot imagine having a 15 month old be all alone in the hospital. His monthly exams are hard (maybe harder on me than him), but I know they're a necessary evil in order to ensure all is ok. Thank you for this article. You spoke some real truths, and it's always comforting to know you're not alone.

    ReplyDelete
    Replies
    1. I'm so glad you could be there for your son. It sounds as though you have had an incredibly hard journey, and that it's not over yet. I hope you find more Moms to help support you. I am naturally an isolator - I isolate myself and my family from the outside world when crisis strikes, but am really learning that community is how to get through. You're definitely not alone. <3

      Delete
  14. Wow Thank you SO SO SO MUCH!!!!! I have a 2.5 year old that only comes home on the weekends to visits. He was 1 of triplets. I lost 1 at birth and the other spent 12 weeks in the NICU. Corban however spent 14 months in the NICU and is how at a Rehab hospital. But our story does have a happy ending. Corban will undergo an 8 hours surgery on the 21st of this month to rebuild his airway and prepare him to have his trach taken out so he can FINALLY join his family at home. Having a 5 year old at home and his twin at home sure makes it even harder but each and every time I go on field trips with corban, surgeries days, doctor visits and events at the rehab hospital my heart breaks to see that sometimes I am the ONLY mommy there with their child. It isn't easy in fact I HATE IT but this is what god gave me and he makes sure that everything is taken care of and that some how I find and make the time to make it all work. If you want more on Corbans Journey and My journey even please stop by his Facebook page.......https://www.facebook.com/prayersforcorban

    ReplyDelete
    Replies
    1. What a story! Goodness woman, you must be strong! I look forward to reading more about Corban, and I truly hope the best for you and your family.

      Delete
  15. When my daughter was 2 days old she went into cardiac arrest/respiratory distress was in the PICU on life support for 10 days... there was little boy that was there about 2 years old he had down syndrome (and many other medical issues), we only saw his parents one time and it was only for just about 30 minutes.. the nurses said he has been in the most of his life and the parents very rarely came, He was the sweetest little boy and for sure going through the terrible two's... he would wrap his trach tube around things to cute it off and make the alarm go off just to get the nurses to run over there and he would laugh so hard every time they did... He was right across from us. My daughter is now 11 and I still think about that little boy, whatever happened with him. It broke my heart I just wanted to take him home with us when we left.

    ReplyDelete
    Replies
    1. I hope your daughter is well now. I have a few people in my life who have Down Syndrome and they are generally such wonderful, funny, smart people. I would have wanted to bring that little boy home too!

      Delete
  16. awwww this was so touching. I am sitting in the hospital with my youngest now, our third hospitalization in less than 2.5 months, and there are always little ones here alone. Some families hire sitters, but more often than not, the baby spends hours swaddled tightly, staring at the light on the ceiling. I am glad it was me. It is a tremendous honor to be able to here at my boy's bedside, console him when he is frightened and watch as he grows up in a medical world that few understand. And also, there's a brand new sick baby next door...and her Daddy is there 24/7. He is a police officer and every evening his fellow officers arrive in uniform and bring food and comfort...all of them men. All of them with huge hearts.

    ReplyDelete
    Replies
    1. I met many wonderful fathers during our hospitalizations as well. They don't always get the credit they deserve. I hope your youngest is stable, and you are able to rest. The haze of being in the hospital - endless medical jargon, people in and out every few hours all day and night, the endless beeping…. Take care of yourself (if you can) and I sincerely wish you and your child the very best.

      Delete
  17. This breaks my heart. I saw so many children & babies at the hospital all alone as well. I hated it! There was one little boy that I clearly remember. He was such a sweetie. Never spent a day of his life outside the hospital. He was about 3-4yrs old while we were there from Sept. 2011 to Feb. 2012. His mother left him when he was just a few days old. The nurses adopted him as their own (even though that's against policy) and when he passed away they banded together and gave him a wonderful funeral. He was always so social and always, always, ALWAYS had a smile on his face!

    ReplyDelete
    Replies
    1. Nurses are such wonderful people (well, most of them). The story of that little boy is heartbreaking, but I'm glad he had someone there to love him - even if it was medical staff :)

      Delete
  18. this echos my experience - thoughts and feelings .. thank you!

    ReplyDelete
  19. Same goes for cancer moms! At 5 months old my son was diagnosed with Retinoblastoma, a rare cancer in the eye. Over 400 doctor appointments, 15+ times under anesthesia, experimental chemo, countless blood draws, and an eye removal later, I have a healthy 2 year old. His little sister was diagnosed with moderately severe scoliosis, also at 5 months old. Thankfully her treatment is no where near as aggressive as cancer treatment.

    My point is, I can relate. We too had stays in the PICU where we cried for lonely children around us who never had any visitors and incurable diseases. My heart broke for them every time.

    I have often told myself the very theme of your post. Thank God my children were born to me. I noticed both of their conditions- not a pediatrician. I told the oncologist my son's counts were low. After they assured me he was fine and sent us home, my phone rang to please rush him back to the hospital, his counts were dangerously low.You know your child better than anyone. You are their voice.

    Thank you for this post. Thank you for being real- I do envy parents of healthy children sometimes. But then I remember those little babies with no one and I am thankful. I remember moms of children who were not victorious over their illness, the angel babies. You are right on target with every word. NICU, cancer, any medical condition.. These moms need love encouragement and support! I pray you find all of these now and always! <3

    ReplyDelete
    Replies
    1. I agree with you, this is true for parents with any medical condition (and for parents of high needs children with disabilities). Thank you for your kind words and for sharing some of your story. I am so happy to hear you have two healthy children who are lucky to have a Mom like you. Instincts are KEY! Staying with your child as much as possible is the only way to know something is wrong, or off, or just doesn't feel right. I truly hope you continue to have healthy children and that the worst of their troubles are behind you.

      Delete
  20. The nurses were amazed that I came almost everyday even after 9 months. Apparently most parents don't. Imagine it has a lot to do with depression. It was hard because we were an hour away, just close enough not to be able to stay at the Ronald McDonald House (except nights she wasn't supposed to make through they made exceptions since only one parent could spend the night in the hospital bunkhouse and it's kind of nice to have both parents when her life was so tenuous) It was just a horrible experience. Now they say we're getting ready to go back to those days in a few years which is just heartbreaking.

    ReplyDelete
    Replies
    1. It's a shame that being present for your poorly child can be made so difficult, but I am glad you worked so hard to be there. Have the rules at the Ronald McDonald house changed so you can stay even if you live within the hour? They really are a wonderful charity and need support as much as possible. The more funding they have, the more parents they can house.

      Delete
  21. I was always there too, day and night, and wouldn't have it any other day. I saw lots of babies like the one you described. I remember the newborn across the way. His parents rarely came. I remember one time they did, and the nurses told them they needed to hold him so he could learn gentle touch, and that not all touch hurt :(. Can you imagine having to learn that touch is a good thing?? Heartbreaking!

    ReplyDelete
    Replies
    1. During my first few weeks in the NICU the baby next door had a very similar situation. His father was a first time father, and always stood looking in on his son. He was so dedicated, and loved his little boy so much. One day, a heard a nurse speaking to him quite firmly, so I (very nosily) stuck my head out to see her telling him he HAD to hold his son. He had been so very afraid of hurting his child after his surgery he didn't want to touch him. He reluctantly obeyed the nurse, and after that was comfortable holding him. The baby recovered quicker than expected and he was sent home happy and healthy.

      I can't imagine having to learn that touch is a good thing. I think parents feel they are under qualified to help their sick child. There are wires, tubes, machines beeping - they need to know that their presence and their touch are just as needed. Some nurses do a great job of helping parents know that their touch is important for their baby to heal, and some really just hate having parents "in the way". We need to support and love parents in these situations and reinforce how important they are!

      Delete
  22. I too have had 2 NICU babies. With my first son I watched a baby under an Eagles blanket who was all alone. It bothered me but I make a choice to stay focused & only think of my son. I tried not to bond with other parents. I know that sounds terrible but I had to have tunnel vision to make it. Yet I understand the sadness you felt for the little girl. While I know you were not judging her mother, it is very hard to watch a little one all alone in the world. I have told stories about my son & the baby under the Eagles blanket to other people and was also accused of judging her. All in all, my total of 139 days in the NICU might have made me a little judgmental. I finished a hard RN program while my son was in the NICU and drove over 2 hours one way daily to get to his bedside. I know how hard it is to be everywhere at once. I also know NICU babies changed me & made me a better wife, mother, and nurse. I am glad it was me too BUT I still have a twinge of that hard feeling toward the smoking mother. Even after all that, I thank God that YOU were the NICU mom who cared & loved your children because I too have seen it appear to be lonely. My heart goes out to you & your family.

    ReplyDelete
    Replies
    1. Thank you Sally. My two NICU experiences were very different. My first child was in NICU 8 years before my 4th child. When the first was being cared for, I wasn't allowed to stay for bloodwork, for shift changes, for rounds. I was always being shooed out and I would stand in the hallway, until I was allowed back in. Nurses would tell me I couldn't sleep in the hall or the waiting room and I refused to go further away from my son. If I weren't so stubborn I would have given in, and perhaps left my son as so many other parents do.

      My second child in the NICU isn't quite 2, and our time in care was much different. The doctors and nurses NEVER asked me to leave (with few exceptions - critical emergencies, etc). I did experience a little bit of resistance to camping out in my son's room - but that fizzled after a few days/weeks and the nurses and doctors knew I wasn't going anywhere. I guess the point is, we need to support parents. They need to know they ARE important in their critically ill child's health and that they need to be present. I can easily understand how they can feel defeated and useless in an NICU situation.

      I am so inspired and touched by your dedication to your children. I'm sure you are one of those fantastic nurses who are more like family to your patients. Thank you again for sharing.

      Delete
  23. We have started a non-profit organization for this exact thing. We adopted our son when he was 3 years old and he had spent 27 of his first 36 months of life in the hospital with out family. He lived the last portion before coming home with us in a medically fragile group foster home and rarely had visitors. He was put in isolation (VRE as your readers seem very knowledgable) and spent the next 4 months losing the will to live and detaching. I was a young, newly married girl and my husband and I decided to foster (and later adopt) him. I am passionate about advocating for children who are without family in the hospital. Like others have touched on, our first goal is to remove the barriers so that the parents who want to be there CAN be there. Things such as housing, transportation, child care... Because those babies/kids really want THEIR family. When that isn't possible, however, we need to attempt to provide consistent, non-medical caregivers to them while in hospital that they can bond with and feel comforted by. Nurses in Pediatrics are often nurturing, motherly and amazing. But they HAVE to do owie things, have 3 day work weeks and aren't able to be there every day as a comforting, non-medical person. I would love to have you or anyone who has commented follow our non-profit on Facebook and help us change the climate in hospitals and advocate for those little ones who are alone. https://www.facebook.com/angelshope.org (Personal note: Our son is now 14 and has lived well past his 5 year old prognosis. However, his survival rate remains grim and his medical state is extremely fragile. We are blessed, however, with the many miracles he has been granted!)

    ReplyDelete
    Replies
    1. I met a foster Mom during my PICU stay who was with her little boy 24/7. She was a specialized foster parent for medically fragile children and was an absolute gem. She had no requirement to stay there with him, sleeping in his room, caring for his every need - but she stayed. I wish there were more people like her, but more importantly I wish people like her had the support they need.

      Starting a non-profit to address this issue is absolutely fantastic (fantastic is an understatement). I will add myself to your group and have a look around :) Thank you for taking your experience and letting it cause you to make a difference. What a beautiful way to honour the child you've adopted.

      Thank you again, I look forward to seeing you in Facebook land :)

      Delete
    2. I met a foster Mom during my PICU stay who was with her little boy 24/7. She was a specialized foster parent for medically fragile children and was an absolute gem. She had no requirement to stay there with him, sleeping in his room, caring for his every need - but she stayed. I wish there were more people like her, but more importantly I wish people like her had the support they need.

      Starting a non-profit to address this issue is absolutely fantastic (fantastic is an understatement). I will add myself to your group and have a look around :) Thank you for taking your experience and letting it cause you to make a difference. What a beautiful way to honour the child you've adopted.

      Thank you again, I look forward to seeing you in Facebook land :)

      Delete
  24. As a Heart Dad, I appreciate your story. Our son spent his first 17 days in the CICU, and has had other visits to the hospital. We saw a lot of really caring parents, and many that couldn't, or wouldn't, be there. It seemed that many of the kids that couldn't have parents there received a lot of special loving from the nursing staffs and child life. It is just heartbreaking though, to see the most special children we have, the ones that need care the most, not get it.

    ReplyDelete
    Replies
    1. It is heartbreaking. You almost have to shut it out so it doesn't drive you mad! We need to support and love parents with sick children. I was often told I needed to take a break, have "me" time, go relax somewhere else - but what I didn't hear was, how can I help you continue to support your child? I'm glad you were able (and willing) to be there for your child, and I truly hope he/she is doing well. Dads really do make a big difference in these situations - I definitely could not have held my family together the way I was able to without my husband.

      Delete
  25. If you weren't in a different country, I'd swear we were in the same hospital. My son, Landon, was born 15 weeks early. Not only did he have prematurity to battle but also 2 heart defects. He only lived for 35 days. I'm glad he didn't make it to the surgeries he needed cause I couldn't have put him through all that pain and suffering plus he only stood a small chance of making it alive through them. 2 doors down from him there was a little girl in the same situation as the one you talked about. I saw the mom come and hold her once and she had a look of "why do I have to be here" on her face. It made me so mad! My son had me and at least one other family member by his side every day. I wouldn't change a thing. I find it a great honor that God chose me to take care of one of His angels for a little while. I've never been so in tune to God until Landon came along. For that I'm grateful and hold my head up because I experienced just how much God is.

    ReplyDelete
    Replies
    1. What I'm finding is that so many of us have the same story. It is so comforting to know that I am not alone, and I hope in some way it helps others too. Trying to look at things in their best light is something I have been working on for a few years, and I find it does make extremely difficult situations at least bearable.

      You, my dear, are remarkable. The story of your son Landon moved me to tears, and your heart - your beautiful heart - is a light in the darkness. Thank you, truly, for sharing.

      Delete
  26. While I am a mother of 3 little boys and only one of them had a brief NICU stay, I am a daughter of a wonderful NICU mommy. I was 7 yrs old when my baby brother was born, and after 6hrs of life, by mom notice that something was wrong. I can remember them coming in and whisking him away to transport to another hospital, and telling my parents they needed to name him, cause they were not sure if he would make it. He was diagnosis with a congenital heart defect, and required open heart surgery at less than a day of life. I remember my mom being with him day and night, never wanting to leave his side, let alone being an hour away (since that’s how far it was for us), but at the same time I remember when visiting her trying to give me and my other brother just as much attention. She really was “ superwomen” in my eyes. I also remember a time when everyone was happy during a visit, but catching my mom crying and when asked “ mommy why are you crying” her reply was “ do you see that baby girl over there, she has been here longer than your brother and the whole time he has been here, not once has anyone come to visit her.” From that day on, I noticed her every day. My brothers time in the NICU came and went, and she still remained. Even after all these years, I can remember her name and while my son was in the same NICU( 20 some years later), I can still picture her crib in the corner and often wonder what ever happen to her. I truly know that some of those moments while I was young have shaped me in to the mom and Peds Cardiology Nurse that I am today. While I can’t say that I know all you are going through or have been through, know that you are stronger then you believe and I do know that your children will look back on this someday and take a positive away from it.

    ReplyDelete
    Replies
    1. I will start with a giant thank you! I hope my children understand why we (my husband and I) did what we did. The older ones struggled with the reality that their baby brother could die, but were understanding of our absence. The younger ones are the ones who really struggled. Our first stay in the NICU was an 8 week stretch, and that is an eternity to a 1 and 3 year old! Thank you for your encouragement and for sharing the story of your family. I really appreciate it - and to be honest, needed it :)

      Delete
  27. I to have seen this kind of sadness in the many days I spent with my son in the hospital. A girl about the age of 7 who stayed at the hospital for days without a mom to cuddle with when she was feeling her worst. I find it weird that parents like the ones in boston, who wanted a rare disease tested on their child was reported to CPS and those who leave their children at the hospital days and weeks without them there are not reported. Though we never know what the reasoning is for their absence, and we should not judge, I find myself hoping there is someone who truly cares and wishes with all their heart they could be there but have no way of doing so. Though it is heart breaking I am sure there are those people who have no other choice. I just wish there was something that could be done for those parents.

    ReplyDelete
    Replies
    1. Yes, I like to think those babies and children on their own have someone somewhere who loves them deeply. Parents who have circumstances I couldn't imagine and if I only knew the story it would all make sense. I'm sure that is true for some of those kids. There is a previous post with a Facebook link that started a non-profit to help parents stay with their children. If it's something you want to look in to, just scroll up :) Another option is the Ronald McDonald House. The Ronald McDonald House is crucial (and I mean crucial) in helping many parents stay with their children. I didn't use their home, but they had a room in the hospital with free coffee and a fridge/toaster, etc. and it was such a blessing.

      Delete
  28. I really, really needed this today. My little boy is going through cancer treatments right now and many times I have found myself looking at other little boys his age and wondering why him. This brings warmth to my heart, truly. I am so glad that he has me, and his dad, and his grandparents, and others that have been there for him. I am glad that I have had the capacity and the desire to take him to every appointment, every treatment, and every blood draw. I'm grateful that he is shown love. Thank you for this post.

    ReplyDelete
    Replies
    1. I have been trying to reply to your comment for some time.

      Thank you for going out of your way to be grateful and show kindness when you are going through such hardships. It's a beautiful heart that still has kindness for strangers when the world is being anything but kind. Your son is so lucky to have you.

      Delete
  29. I read this over and over and I cried over and over! It breaks my heart to see children suffer! I have 3 children and they are my life, my universe, my everything! I could never leave them alone feeling unwanted or abandoned! It broke my heart reading your story! You are one of those mothers that in my eyes are the strongest and most amazing! An angel! xo

    ReplyDelete
  30. Thank you for sharing your story. My husband and I know exactly what you're going through and how you are feeling. Our son Elijah was born at 32 weeks and we barely three pounds,
    he has massive aspiration most everything he swallows goes into his lungs we go to feeding therapy occupational therapy he has about 7 specialist. he has reflex he has had 5 surgery and he has been any more to come. Elijah will turn to in February today we went and saw of the pulmonologist because of his lung damage from all the damage that has happened to his lungs from aspirating and his lungs filling with fluid. We call Dornbeckers Children's Hospital our second home. There are days that I just want to cry and I do sometimes, I look into my son's eyes and I know how amazing and blessed I am to have him in my life. Elijah is the strongest child I have ever met in my life he is a complete fighter he never gives up he always has a smile on his face he is happy as can be. Elijah is so loving he always is polite and will give hugs to all the doctors and nurses. Ever since he was born we have called him our little Superman. I just want to say thank you for writing to us moms with children that have medical problems sometimes it's easy to forget that we are not alone I remind myself daily that there's always somebody worse off there's always someone who struggles more than my son. I have seen other children sit alone in the hospital and have no one there with them it really breaks your heart. I pray to God for all the children that are medically sick. I just want to thank you for opening up and sharing your story. it helps me remember that I am NOT alone.

    ReplyDelete
    Replies
    1. Yes, a sick child makes us feel totally alone. Like no one else could possibly understand how we feel. Everything from "normal" life loses its meaning and importance - and because life goes on for everyone else in our circle, it's difficult to stay connected. I think the replies to this post have helped ME learn how much support there is out there, if we just reach out a little.

      Your Elijajh sounds remarkable. Your little Superman is lucky to have you, and I hope you have the support you need. Keep up the good work :)

      Delete
    2. We too have spent some time at Doernbecher and I am so grateful for the set-up they have for parents/guardians. I get offered a RMH room every time, and every time I have to respectfully decline. I am her mama and should be by her side as much as possible. Our last stay got my blood boiling though, I could hear this toddler crying almost all day everyday to the point where they would just close the door on him. He never had anyone with him and when there were people in the room it was multiple medical personal all at once. Cannot tell me that all nurses are always busy at all times of the day, I have seen plenty sitting around and chatting it up enough times. I do understand there comes a time when they will all be over worked and low on staff and I hold no one accountable on those days. Instead I hold it in when there is no other choice and pray someone will give the kids that are all alone the time of day. Almost asked them to bring him over for a play date! But have to be careful for my own, cannot afford to catch anything. Our prognosis is a grim one but the time I have with her does not have to be!

      Delete
    3. I remember wondering why nurses didn't snuggle the "criers" when they had some down time. And then one of the babies was a code red (or whatever code means emergency). If one of the nurses had to put the baby back, take the time to fix cords, IV's, breathing apparatus, etc. they would have seriously endangered the child who needed the emergency care. When a baby is in crisis it's all hands on deck. I've seen all the medical staff rush to my room and was grateful for their efficiency and quick response time. It truly is in the hands of the parents to ensure the child is cared for emotionally, the medical care is for the medical staff.

      All that being said :) …. I'm glad you are a Mom that gets to be there for your child. I also declined the RMH room - I never wanted to be that far from my baby. I wish the best for your daughter, and thank you for sharing <3

      Delete
  31. My wife shared this on her Facebook page. We are parents to a child undergoing treatment for Infant Leukemia. Your post struck a cord. I had my same realization when I spent the night in the hospital with our then 11 month old, and in the crib next to us was a 2 year old whose mother just left him for the night, leaving the staff to tend to him. All day she had left him in the crib and paid no attention to him. I realized then, THANK GOD we are our daughter's parents. I never revisited that question again.

    ReplyDelete
    Replies
    1. Oh, and thank you for the paragraph at the end about fathers. As I was reading the post I was thinking (what about us?), but your reasoning is spot on and agree.

      Delete
    2. Great Dads make all the difference, I'm so glad your daughter has you. There was a child on our floor also undergoing cancer treatments, and it really takes a strong family to hold up a child in such intense treatment.

      PS - My husband thought the same thing while reading the post :) I really couldn't be the Mom I am without him, I would never downplay the importance of Daddies.

      Delete
  32. What an incredibly strong post. I cannot imagine not being there every moment for our children. My heart hurts when I see other kids like that one neglected, and think - what if that were K or B? Thank you for this.

    ReplyDelete
  33. This was my world for 3 1/2 years in and out of the hospital. My little one was a warrior until the end now an Angel. I was there every second for him and I'm so glad I have those specials memories. Thanks for sharing!

    ReplyDelete
    Replies
    1. You're very welcome - thank you for sharing. I'm glad your child had you <3

      Delete
  34. I lost my sick child and it's true you think every moment if it was something you did, throughtout the years that feelings never really left.i miss my child every moment since he died.i was blessed with 2 more beautiful healthy sons and I give God daily thanks because I'm so blessed to be a mom of and angel in heaven and two on earth.im complete and although my heart is broken and I often feel as if it isn't fair I understand my child would have wanted me to live a happy and full life and to be an amazing mother to his brothers.and that's what I intend on doing.

    ReplyDelete
    Replies
    1. Laura, I'm glad you honour your lost son by raising his brothers as you think would make him proud. It honours a life lost to live ours fully, instead of wasting time on sadness and hatred. I don't know if the feeling of responsibility ever goes away, but know you're not alone.

      Delete
  35. I AM one of those parents! I appreciare your blog, I related to it also as if I had written it myself. My first NICU baby was in there for 4 hours of a mandatory 24 hour stay. No big deal, but just had to mention him. My second NICU baby was born at 28 weeks, 5 days. He was 2 lbs, 14 oz. While he was in the NICU, the little girl next to him even had heart surgery with no parents there! The one time I saw the parents, it was a whole entourage, like maybe their whole family had to come, or no-one at all! I grieved a lot for that baby as well! I was not allowed, of course, but I just wanted to go and hold her tiny little body, andlet her know what human touch was all about. My hubby was also afraid of holding our son, until the nurse told him Iit was like going to taco bell and holding a burrito, only this time, no bite! Lol! He was fine from then on as well. I had an eleven year old, and very little support. My husband worked away, and had to go back to work one week after my son was born! So I was alone, as I usually am! I still spent as much time there as humanly possible. However, when my son was 2, after a long hospital stay, I gave birth to my twin girls at 25 weeks, 5 days! Again with the lack of support, and a 13 year old, and a 2 year old, I found it pretty close to impossible to be there when I wanted! But here was the ultimate sacrifice, and choosing between the two, that I will forever feel guilty for! One of my baby girls had to be sent two hours away for eye surgery so that she did not go blind...at CHRISTmas! So, I had to choose between the two baby girls, and leave one in the NICU back home, which had always been home to her, and stay at Ronald McDonald house for CHRISTmas! I missed one baby girls' first CHRISTmas! I was only gone a few days, and my older children were miserable being away from home on CHRISTmas. However, even with that, my oldest was perfectly capable of keeping my youngest, and was not allowed to by Ronald McDonald rules! By their rules, a PARENT has to be with their child (ren) at all times! I did not find that Ronald McDonald made things better or easier on me or some of the other parents that I met there! I left a strict request back home, though, that my sweet angel was to be held absolutely as much as possible! Still wish I could be two places - really THREE - at one time! I chose the one daughter because she had to be in a strange place, and I was not even able to spend all that much time with her, either!
    Anyway, thank you for your post! I can definitely relate, through both infertility, and NICU, and actually even today! My house burned, and I am having to be there a lot, and so miss my beautiful children, and even some times, I have to skip an appointment or two for ones therapy! I can only be one person! And most of the time, that one person is exhausted! I did not feel judged, just letting you know I know both sides! Thanks again!

    ReplyDelete
    Replies
    1. This comment has been removed by the author.

      Delete
    2. Thank you so much for sharing. In some of my replies, I did note that I had relationships with some of the mothers who were able to come from time to time and knew their stories. I knew a family who had twins and one of their sons had to go to another hospital for surgery - very similar to your story. Whatever choice you had to make is not for anyone to judge. If you had control over the situation, you would have had healthy babies, but you did the absolute best with the situation you were given. I can not imagine the strength it took to make that decision, and live through what you did. I believe all mothers feel they are failing their children (at least from time to time) and that we could do better. In some ways - yes, we can always do better, and in many more ways we need to show ourselves the love and grace we extend to others so easily. Forgive yourself, and give each day the best you've got.

      Delete
  36. This comment has been removed by the author.

    ReplyDelete
  37. P. S. I fail them daily, but I try to do better! I am so glad that I have them, but sometimes truly wish they could have better!

    ReplyDelete
  38. Beautiful, real, truthful, brave story!! God Bless You!! Im a mother of 5 children and my youngest, Isaiah, which is now 3 years old has been hospitalized 3 different times for his illness, surgery one time also! It has been very difficult trying to juggle all the kids needs when lil man is in the hospital but like you said....Im so glad my son/children have me!! You just make it work!! Here in Louisiana you cannot leave a minor alone at anytime in a hospital setting!! Someone 18 or over has to be present at all times! Im saying that bc I was reading that alot of precious children were left alone and Ive never heard of that or experienced that at the hospital bc you HAVE to be there with your child where we live! Ive never dealt with NICU or PICU.....but in a hospital room itself there has to be someone present(family, not staff) at all times or they will call the authorities!! What states do you ladies live in where yall have experienced this? Best of luck to all the Mothers, Fathers, Children and Siblings that have to deal with the struggles of being in the hospital bc it is extremely hard on all of us!! Peace and Love yall!!!! :)

    ReplyDelete
    Replies
    1. Thank you for your comment :) I live in Canada, I'm not sure where everyone else is from. Our NICU rooms you are almost encouraged not to overstay your welcome (which I did anyway), and the PICU rooms you are encouraged to stay but it isn't mandatory. I'm not sure if our regular hospital stays require a parent to stay with a minor or not, but I certainly am jealous that you have it legislated! I think our regulations need to relax so that grandparents, aunts and uncles can help more than they are allowed to - only allowing a biological parent can be very difficult on a family.

      All that being said - thank you for sharing, and peace and love right back at ya!

      Delete
  39. I am one of those mommies who questions what I did wrong for my sweet innocent child to deserve all the surgeries he goes through. He has HLHS and is such a fighter. I just feel responsible deep in my heart. Thank you gor writing this and letting me know I'm not alone.

    ReplyDelete
    Replies
    1. I'm so sorry you feel that way. I cried writing that last paragraph (about feeling it's my fault), because the feeling of responsibility is so deep - and anytime I think about it, it almost paralyzes me. Logically, we know it's not our fault - but emotionally, we can't stop from blaming ourselves. You are not alone my dear, believe me. I hope this helps hold you up a little, keep up the fight <3

      Delete
  40. My son lived for 2 months and 2 days, Today would've been his 2nd birthday. He spent most of his life in the NICU. I spent as much time as I could there with him, my husband did too, but in the end I still wonder... was it enough? I blame myself for not becoming a light fixture and staying there, forever maybe?
    In the end, I wasn't there when he died, thank God my husband was. You bring a lot of emotions that I forgot about, but I felt them and I thank you for your honest post. I believe that those thoughts are not judging others, I think that is just grief talking, we grieve that we didn't get the picture perfect delivery that ends with a healthy baby at home 3 or 4 days later,it sucks to come home with a breast pump and no baby, so we take it on others that do get that and do not appreciate it, we need reassurance that we did everything and still are doing everything right, that is not something that we did what caused our child to be facing so many difficulties from the get go. Those thoughts come out of fear, anger, need of validation even, and I believe that they are valid as we are just trying to do our best with and exponential post-partum depression and a fried brain. Thank you for putting yourself out there. Great post. Feel free to visit our son's blog charm11.blogspot.com.

    ReplyDelete
    Replies
    1. I've taken some time to reply to you as I've been busy reading your blog. Crying with you, nodding my head in agreement, touched by your honesty and candour. You were so honest and open! I shared one photo during my hospital time. No information. No updates. Most of my world still doesn't know what happened and what we still deal with from day to day. I am trying, now, to open up and share - reading your blog has (and will) help with my hesitance. Thank you for your comment, and really - thank you for your blog.

      Delete
  41. Thank you for your beautiful post. I sobbed as I read it, your own feelings of jealousy and "it's not fair!" resonating with my own experience. I was never a NICU mom, but when I lost my son at 20 weeks I longed for the opportunity; to have given my son a few more weeks so that he would have had a fighting chance. I realize that maybe it's part blessing to have lost him quickly and peaceful before he was delivered (which, if anyone else ever said that to me, I might spit in their eye!) but my heart still aches over the "what ifs." Thanks to modern medicine and lots of doctor's visits and hospital stays, I have since been blessed with a healthy, full-term baby girl and my heart overflows with love for her, but that doesn't replace the ache for my son. I know my story is different from yours, but I was moved by your honesty and transparency, and am thankful for stumbling upon your blog.

    ReplyDelete
    Replies
    1. Thank you for sharing, and for your kind words. Yes, miscarriage results in the same feelings of "it's not fair" and also in feeling that it was somehow your fault. Someone very dear to me has had two late term miscarriages and I know she is trying to process it the same way you are - attempting to be grateful to have lost them quickly and peacefully without any discomfort to them. I hope you have support, and love, and people in your life who treat it with the respect and seriousness it deserves. I'm happy you have a beautiful healthy girl. Thank you again.

      Delete
  42. the only thing I have to say is don't judge, my baby was in the nicu for two weeks. I had a two year old to take care of and i was sick. I never got a chance to see her. just cause the mama was only once when she saw her doesn't mean she wasn't there. I could only stay an hour at a time. that makes me mad.I honestly can say this article was coming from the right place. but not every mama has the chance to stay every minute of every day. It doesn't mean i loved her any less.

    ReplyDelete
  43. Cant stop crying, but I just have to stop for a second to thank you for a very wonderful post, for sharing this and for the much needed words to for me to hear. I can relate in so many ways, when my son (now of 21) had an open heart surgery at 2 and the time we my husband and I spent by his side. And now with our daughter who is in the physical years a young woman of 19 but so beautifully young at heart and mentally a sweet 3 year old, she has severe autism, mentally delayed and now fighting a whole new battle of intracranial hypertension (IH) that causes her severe head aches, loss of sight and other terrible side effects. She's in hospital (been soon for 4 months) and we are as often as humanly possible there with her and by her side. I go and see her, on good days I get a sweet smile and a hi mommy and on not so good days I get tears and her trying to sleep through her pain in my arms. No matter how old our children are, they will always be our children.

    So nice to see that you have your little girl with you all healthy and well and I hope the other little girl is also well and very much loved.

    ReplyDelete
    Replies
    1. I'm so very touched that something I wrote can reach out and help lift someone up. You sound like a dedicated, and much tested mother - I truly hope you have support to help you find your way through. I hope your son hasn't had any further complications, although I know that even with a clean bill of health comes many possible issues. Your daughter is lucky to have you. Loving someone who can't always show you love back, or even communicate with you, is very taxing and can seem pointless. I know you know it isn't pointless, that your daughter is valuable and just as worthy of love as anyone else. Thank you for sharing <3

      Delete
  44. This is beautiful. Thank you for writing it. My oldest son spent his first week of life in the NICU and it was terrible. I was in horrible shape due to the delivery. I didn't understand what was going on and just wanted to cry the whole time. My husband really kept both my son and I afloat during that week. We were allowed to room in with my son during that week, though, which was wonderful. However, I also saw many babies there who were all alone with no visitors, and it broke my heart.

    At one point in our stay, we decided we needed to go home for a bit but I couldn't bear the thought of leaving my baby alone. Our wonderful NICU nurse told us "go. He's going home with you soon and you'll be no good to him if you're walking zombies!" When we told her how we felt like going home for one night would make us bad parents, she shared some stories that stunned us.

    She told us of the baby whose parents decided to take a vacation to Hawaii while their baby was in the NICU, and the baby who was ready to be sent home - only every phone number they had for the parents was a disconnected number. Eventually the child was released to the state and police were called to arrest the parents for abandonment.

    Our second son was hospitalized at 7 weeks old and helicoptered to a childrens hospital 4 hours away. With a 2 year old at home, we scrambled for babysitters so we could both go with our baby. He also spent a week in the hospital and again, we were allowed to room in with him.

    Since both boys were little, we've dealt with severe food allergies and intolerances.

    My 20 month old son literally cannot eat anything except my breast milk and quinoa. He has reacted to every formula and food we've tried to feed him. Knowing that if anything happened to me my son would slowly starve to death is a heavy boulder on my shoulders to carry.

    Reading this was very validating. Thank God my sons were born to me! If another mother were given these children, I can't imagine the pain and sickness they'd have gone through. Without the utter devotion I've given them, who knows if they'd be the healthy, thriving boys that they are?

    ReplyDelete
    Replies
    1. It really touches my heart to read comments from other parents who understand what I am trying to communicate and who feel validated, encouraged, etc. While I am sorry to hear about the complications both of your children have endured (and continue to endure) - I am so glad they have such a devoted Mama, and what sounds like a wonderful Daddy. Thanks for the kind words <3

      Delete
  45. I know this post is several months old, but thank you so much for taking the time to write it. We are currently in the hospital with our 7 month old son who has Spinal Muscular Atrophy. It causes a lot of respiratory problems and he got a cold and pneumonia. We are on a total of 18 days in the hospital, 1.5 day break inbetween. Because of the muscle weakness, he is very hard to draw blood from. My husband and I stand next to him, holding his hand and rubbing his head while they look for veins and have failed attempts at getting blood. We have had to tell them to stop because they had tried so many times and kept failing. I couldn't imagine a little baby or child going through this alone. I don't get out of our room much, but I have seen and talked to a few other parents. It broke my heart when I heard during rounds at another patient's door that they needed to talk to the social worker about getting a parent in the room. It may be hard on my husband and me, but it is much harder on an innocent child who doesn't understand what they are gojng through and why someone isn't there for them. This post makes it a little easier to sleep on this horrible hospital bed and miss my two year old as he is with his nana. Thank you.

    ReplyDelete
    Replies
    1. I hope you have a good support group to help you through this time. Don't be afraid to ask for snacks and meals to be delivered, etc. What a lucky baby to have you and your husband stand next to him through all of this. The nights on the uncomfortable bed, or sitting sleeping up, and needles and beeping and fear will be gone one day and you will slowly forget how horrific this is. In the meantime, be glad your baby has such a wonderful mama and know that I'm lifting you up and wishing you all the best. xo

      Delete

Just say Yes

Utilizing a budget means making small choices that add up to big numbers.  No impulse buys (even when it’s only a dollar or two) , and n...