tag:blogger.com,1999:blog-466513217185453243.post2801137759283481572..comments2023-12-11T04:50:24.091-05:00Comments on The Good Kind of Crazy: Be Glad it's YOURose of Sharonhttp://www.blogger.com/profile/09272239718318884874noreply@blogger.comBlogger100125tag:blogger.com,1999:blog-466513217185453243.post-66681119483081689862014-06-08T21:23:35.386-04:002014-06-08T21:23:35.386-04:00I hope you have a good support group to help you t...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. xoRose of Sharonhttps://www.blogger.com/profile/09272239718318884874noreply@blogger.comtag:blogger.com,1999:blog-466513217185453243.post-77775891857551946132014-06-08T06:48:55.745-04:002014-06-08T06:48:55.745-04:00I know this post is several months old, but thank ...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. nicihttps://www.blogger.com/profile/10257855018530027364noreply@blogger.comtag:blogger.com,1999:blog-466513217185453243.post-71542654305135763442014-02-26T20:05:59.602-05:002014-02-26T20:05:59.602-05:00It really touches my heart to read comments from o...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 <3Rose of Sharonhttps://www.blogger.com/profile/09272239718318884874noreply@blogger.comtag:blogger.com,1999:blog-466513217185453243.post-16018350902731657792014-02-11T02:41:48.018-05:002014-02-11T02:41:48.018-05:00This is beautiful. Thank you for writing it. My ol...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. <br /><br />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. <br /><br />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. <br /><br />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. <br /><br />Since both boys were little, we've dealt with severe food allergies and intolerances. <br /><br />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. <br /><br />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?Cradle Rocking Mamahttps://www.blogger.com/profile/08325723145996206907noreply@blogger.comtag:blogger.com,1999:blog-466513217185453243.post-24872914730958477372014-01-21T18:21:03.662-05:002014-01-21T18:21:03.662-05:00I'm so very touched that something I wrote can...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 <3Rose of Sharonhttps://www.blogger.com/profile/09272239718318884874noreply@blogger.comtag:blogger.com,1999:blog-466513217185453243.post-31959891579507644082014-01-20T22:43:54.169-05:002014-01-20T22:43:54.169-05:00Cant stop crying, but I just have to stop for a se...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.<br /><br /> 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.Mari Brown and Colourblobhttps://www.blogger.com/profile/09031663861630821478noreply@blogger.comtag:blogger.com,1999:blog-466513217185453243.post-56313507121156997032014-01-20T20:24:02.630-05:002014-01-20T20:24:02.630-05:00the only thing I have to say is don't judge, m... 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. <br />Anonymoushttps://www.blogger.com/profile/10156130135974287004noreply@blogger.comtag:blogger.com,1999:blog-466513217185453243.post-5590489440311177662014-01-19T13:52:02.387-05:002014-01-19T13:52:02.387-05:00Thank you for sharing, and for your kind words. Y...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. Rose of Sharonhttps://www.blogger.com/profile/09272239718318884874noreply@blogger.comtag:blogger.com,1999:blog-466513217185453243.post-74283881115638595952014-01-16T22:59:27.767-05:002014-01-16T22:59:27.767-05:00Thank you for your beautiful post. I sobbed as I r...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. Rachel Oliverhttps://www.blogger.com/profile/06601209917113155646noreply@blogger.comtag:blogger.com,1999:blog-466513217185453243.post-72712357875878026352014-01-14T18:01:18.129-05:002014-01-14T18:01:18.129-05:00I've taken some time to reply to you as I'...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. Rose of Sharonhttps://www.blogger.com/profile/09272239718318884874noreply@blogger.comtag:blogger.com,1999:blog-466513217185453243.post-55829967589111469462014-01-12T21:46:17.776-05:002014-01-12T21:46:17.776-05:00I'm so sorry you feel that way. I cried writi...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 <3Rose of Sharonhttps://www.blogger.com/profile/09272239718318884874noreply@blogger.comtag:blogger.com,1999:blog-466513217185453243.post-32187144785137777802014-01-12T21:43:17.087-05:002014-01-12T21:43:17.087-05:00Thank you for your comment :) I live in Canada, I...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. <br /><br />All that being said - thank you for sharing, and peace and love right back at ya! Rose of Sharonhttps://www.blogger.com/profile/09272239718318884874noreply@blogger.comtag:blogger.com,1999:blog-466513217185453243.post-44000991843666818992014-01-12T21:40:22.241-05:002014-01-12T21:40:22.241-05:00Thank you so much for sharing. In some of my repl...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.Rose of Sharonhttps://www.blogger.com/profile/09272239718318884874noreply@blogger.comtag:blogger.com,1999:blog-466513217185453243.post-7717204894429354192014-01-12T21:34:38.294-05:002014-01-12T21:34:38.294-05:00Laura, I'm glad you honour your lost son by ra...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.Rose of Sharonhttps://www.blogger.com/profile/09272239718318884874noreply@blogger.comtag:blogger.com,1999:blog-466513217185453243.post-51653483508915523902014-01-12T21:32:26.171-05:002014-01-12T21:32:26.171-05:00You're very welcome - thank you for sharing. ...You're very welcome - thank you for sharing. I'm glad your child had you <3Rose of Sharonhttps://www.blogger.com/profile/09272239718318884874noreply@blogger.comtag:blogger.com,1999:blog-466513217185453243.post-8494570346831558832014-01-12T21:31:00.618-05:002014-01-12T21:31:00.618-05:00My pleasure. :)My pleasure. :)Rose of Sharonhttps://www.blogger.com/profile/09272239718318884874noreply@blogger.comtag:blogger.com,1999:blog-466513217185453243.post-27415311072175887182014-01-11T23:22:06.240-05:002014-01-11T23:22:06.240-05:00My son lived for 2 months and 2 days, Today would&...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? <br />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.Clara Harmonsonhttps://www.blogger.com/profile/02729432397360297440noreply@blogger.comtag:blogger.com,1999:blog-466513217185453243.post-48539166463996175992014-01-11T22:40:58.173-05:002014-01-11T22:40:58.173-05:00I am one of those mommies who questions what I did...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. Anonymoushttps://www.blogger.com/profile/11982772765609643939noreply@blogger.comtag:blogger.com,1999:blog-466513217185453243.post-24546845070651323002014-01-11T17:14:03.516-05:002014-01-11T17:14:03.516-05:00Great Dads make all the difference, I'm so gla...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. <br /><br />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.Rose of Sharonhttps://www.blogger.com/profile/09272239718318884874noreply@blogger.comtag:blogger.com,1999:blog-466513217185453243.post-7377601049535841502014-01-11T17:02:21.113-05:002014-01-11T17:02:21.113-05:00I remember wondering why nurses didn't snuggle...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. <br /><br />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 <3Rose of Sharonhttps://www.blogger.com/profile/09272239718318884874noreply@blogger.comtag:blogger.com,1999:blog-466513217185453243.post-6777757483611609632014-01-11T15:26:33.676-05:002014-01-11T15:26:33.676-05:00Beautiful, real, truthful, brave story!! God Bless...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!!!! :)Anonymoushttps://www.blogger.com/profile/06754220266737757624noreply@blogger.comtag:blogger.com,1999:blog-466513217185453243.post-4081952919402315292014-01-11T10:41:39.782-05:002014-01-11T10:41:39.782-05:00P. S. I fail them daily, but I try to do better! ...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! Unknownhttps://www.blogger.com/profile/06632791809082946035noreply@blogger.comtag:blogger.com,1999:blog-466513217185453243.post-62316434801856837012014-01-11T10:37:34.159-05:002014-01-11T10:37:34.159-05:00This comment has been removed by the author.Unknownhttps://www.blogger.com/profile/06632791809082946035noreply@blogger.comtag:blogger.com,1999:blog-466513217185453243.post-36148326227713546332014-01-11T10:32:37.172-05:002014-01-11T10:32:37.172-05:00This comment has been removed by the author.Unknownhttps://www.blogger.com/profile/06632791809082946035noreply@blogger.comtag:blogger.com,1999:blog-466513217185453243.post-74359064932681507062014-01-11T10:31:05.583-05:002014-01-11T10:31:05.583-05:00I AM one of those parents! I appreciare your blog,...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! <br />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! Unknownhttps://www.blogger.com/profile/06632791809082946035noreply@blogger.com