tag:blogger.com,1999:blog-401303964563152307.post8646985293845552414..comments2024-03-28T03:35:52.176-04:00Comments on Love That Max : Dealing with the invisible disabilities of preemie babiesEllen Seidmanhttp://www.blogger.com/profile/01433429847255621203noreply@blogger.comBlogger14125tag:blogger.com,1999:blog-401303964563152307.post-68042925668095233492013-10-23T20:28:41.530-04:002013-10-23T20:28:41.530-04:00I know this post was written al long time ago, but...I know this post was written al long time ago, but I wanted to comment anyways... I had my twins at 28 weeks due to complications of TTTS. Our sweet Anne only survived a few hours, but our little Jillian was able to work through her issues and is now 3 and doing great. She is little had has some delays, but considering what she has had to over come... shes doing fantastic! My problems lately have been with friends and family treating me like I'm overreacting about her sensory issues or her chronic lung disease. I have Drs and therapists (OT, PT, and speech) helping and being very understanding! I don't have to convince them of anything! It's friends and family. "She'll grow out of the baby talking. Leave her alone." Friends also told me to "give her time" when she wasn't walking around 18 months. I actually waited too long to get her help. And by the way my preemie is my 5th child. It's not my first time around the block. Our girl is tiny, but other then that (and her LARGE head) ;) she looks great. She is great, but she does have issues and I hate when people discount her issues. Statements like, "My kid did that too and they weren't premature! She's fine!" I get that a lot! "My friends son wasn't a preemie and they have the same breathing issues and they grew out of it." I usually come back with, "Well... your/their kid wan't born at 28 weeks and on a vent for a week nor did they spend months in the NCIU." I'm fine in the Drs office or when talking to her therapists, but as soon as I start to explain anything to my friends... one look or a brush off and i'm back to, really having my feelings hurt. UGGH! sorry for the rant. Your post really made me feel less alone. Thank you.Sharonhttp://www.homegrownphoto.netnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-53863540009108583002012-07-18T15:22:42.319-04:002012-07-18T15:22:42.319-04:00My friend's mom had a preemie baby. His name ...My friend's mom had a preemie baby. His name is Ian. He got bad allergies and had to be given Benadryl. Now, he is healthy, charismatic, and can hold a ball for 10 seconds.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-45170728709942543402012-05-03T04:16:40.263-04:002012-05-03T04:16:40.263-04:0011/29/08, our twins were born at 27 1/2 wks, one h...11/29/08, our twins were born at 27 1/2 wks, one home 02/09, the other with many of the same medical conditions you have described but more, home 05/09. If I would have listened to the docs & nurses however, he would not have lived as long as he did. <br /><br />On 03/22/12, our home bound Chase died under the care of Loyola. He went in via ambulance 03/04/12, come to find out he had RSV Pneumonia (caught from his more able bodied brother in preschool)and was not intubated until approx. 9 hrs later due to no blood gas being done in ER. He was on an Oscillator I was holding with good ph, o2 sats, blood gas, etc., until they introduced a hospital born gram negative infection via one of his IV lines and was then given a .5 to 1% chance of living. This gram negative infection was present at Loyola when they were born & apparently still there over 3 yrs later.<br /><br />Point is, the protocol is not being followed enough to curtail these infections, especially in those at greater risk. Understanding that avoidance to virus & germs until age 5 or longer, IS THE WAY TO GO, I KNOW FIRST HAND!!! <br /><br />I do not want Chase's death to be in vain, as we need more protocol and understanding with preemies, especially those with multiple factors.<br /><br />Chase had a grade III brain bleed, hypotonic, BPD, a finger contracture, lymph edema of one hand, various vascular markings over his body, ROP left eye, & others. In/around 06/11, we found he had prader willi syndrome, and in 12/11 through 01/12, found he had a renal cyst, scoliosis, cervical spinal stenosis without compression & his permanent teeth were in his maxillary sinus cavities. <br /><br />I wanted to care for him no matter what, keep him away from what I could & against my better judgement, sent his twin to preschool and asked for Special Ed to keep me informed of ANY ILLNESS. This was not done.<br /><br />Thus, what ultimately caused his death, infection.<br /><br />To all out there with compromised children, no matter what, keep them away from illness. No one knows this better!<br /><br />Good Luck to all of you and I am sorry for your losses.<br /><br />I am still on a roller coaster everyday, wanting more time with my Chase, to love him more, to care for him more, but I know I can only hope he is now not bound by any earthly body and he is now able to run, sit, stand, eat, laugh.....Debbie Rudinoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-35295385974101724072012-03-23T10:38:16.069-04:002012-03-23T10:38:16.069-04:00Nick,
#1 - You ROCK for Parents of Preemies Day!
...Nick,<br /><br />#1 - You ROCK for Parents of Preemies Day!<br /><br />#2 - Your post is beautiful. Nicely put!Deb Discenzahttp://www.preemieworld.comnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-5340665633374536232012-03-20T18:23:28.421-04:002012-03-20T18:23:28.421-04:00Reece is a blessing to you and she is also blessed...Reece is a blessing to you and she is also blessed to have a parent like you, who never give up on her. Thank you for sharing. It was really nice of you sharing your story to help other people.Maricris @ SittingAroundhttp://sittingaround.comnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-85829999718586392432012-03-20T12:50:43.940-04:002012-03-20T12:50:43.940-04:00Loved your post, Nick. "The lasting impact o...Loved your post, Nick. "The lasting impact of prematurity". Indeed! I can relate to sensory, behavior, autism, etc... I would add attention problems, slow processing, and fatigue. My son did not leave the house for a year after the NICU except for doctor appointments. There were lots of comments about that. His fatigue continues to be an issue (he is now 10). My efforts to help him conserve his limited energy are often questioned. Agreed that the feeding tube and braces were easier to deal with than behaviors are now. <br /><br />I'm sure you know, Nick, that you and your wife will need to be strong advocates in the school system for years to come. Good luck and thank you for raising awareness of the hidden issues.Cathynoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-75992576254452409512012-03-20T12:37:25.149-04:002012-03-20T12:37:25.149-04:00I love your post and it really helps to know I am ...I love your post and it really helps to know I am not alone. My daughter is a survivng twin. she was born at 29 weeks and has a weak immunity and is delayed in some areas everyday is a blessing.jennanoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-28165031057907151132012-03-20T10:37:51.497-04:002012-03-20T10:37:51.497-04:00What a great post. It's nice to hear stories o...What a great post. It's nice to hear stories of people who have gone through what we're going through. So many of our friends and family don't really understand. People don't get why it takes so long for me to "pack up" the kids when it requires oxygen, special formula, a monitor, medicine, and so much more even if it's just leaving the house for a few hours. Our twins were born at 27 weeks and we're so very very blessed that they both were such strong fighters. They're 9 months old now, we still have a lot of struggles, we get a lot of judgmental comments on their size, we still have way more doctors appointments then I'd like, but they're getting bigger and stronger every day and they're such beautiful little miracles :)Emilyhttp://twicethemiracle.blogspot.comnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-72566231876585921962012-03-20T02:16:23.871-04:002012-03-20T02:16:23.871-04:00This is such a great post. I just ran the L.A mara...This is such a great post. I just ran the L.A marathon yesterday for March of Dimes. My best friend lost his son due to complications from prematurity. He lived for five months and far exceeded all odds. <br /><br />I really like how you pointed out that we can't always "see" prematurity. Furthermore, I really wish we could be less judgmental towards parents. We really have no idea what is going on with the child, the parents, or the history.<br /><br />I've said it many times in the three years since my son has been born and I am sure I will say it many times more. I think he teaches me far more about life than I could ever teach him.<br /><br />"The child psychologist who thought she had all the answers to parenting until she became one herself."<br />www.themommypsychologist.comthe mommy psychologisthttp://www.themommypsychologist.comnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-3437274117581624882012-03-19T20:20:49.435-04:002012-03-19T20:20:49.435-04:00Wow, what a great organisation - kudos to them!
E...Wow, what a great organisation - kudos to them!<br /><br />Even though we did that preemie stuff with Mac as a 26wkr it has absolutely no focus in our lives, I guess on reflection that was our safe haven and a time we NOW remember almost fondly.<br /><br />The thing is it was completely overtaken by Mac getting sick with that 'dreaded flu' four months after leaving the NICU - despite being careful with contact. And, sadly... courtesy of some pretty poor medical support Mac sustained a massive brain injury due to lack of oxygen on day 9 in hospital. <br />So our kid that had got through beingt a 1 pound poppet leaving the NICU unscathed was now slammed into the severest end of disability.<br /><br />The big difference is Mac's disability is far from invisible, and I maintain it is much easier having an obvious disability and I think easier to have a severe disability compared to a mild disability when it comes to the judgement of others.<br /><br />Keep up the good work, what a great legacy in honor of your little boy Graham.Gina @ Inky Ed!http://inkyed.wordpress.comnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-76485167045751997162012-03-19T11:32:27.191-04:002012-03-19T11:32:27.191-04:00Thank you for this post. I also have a surviving t...Thank you for this post. I also have a surviving twin who was a preemie. She is three and we continue to deal with the repercussions of her early birth. I have written on my blog about my mixed feelings of her invisible disabilities, other than her tiny size. She is the size of an 18-month-old. http://wp.me/pUxaF-nd<br /><br />I love the work of the Graham Foundation. Thanks for featuring it here.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-14482081279453381732012-03-19T11:16:09.525-04:002012-03-19T11:16:09.525-04:00Thanks for sharing that. I think all parents of ki...Thanks for sharing that. I think all parents of kids with disabilities -- visible or invisible -- experience those feeling of others not 'getting' them and their unique challenges, and not rising to the occasion in the way we would hope. What a great idea to have the Parents of Preemies day! LouiseBLOOM - Parenting Kids With Disabilitieshttps://www.blogger.com/profile/06901482901008135659noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-42696423868560815872012-03-19T08:06:32.840-04:002012-03-19T08:06:32.840-04:00Although my son wasn't a preemie, we have deal...Although my son wasn't a preemie, we have dealt with many of the same issues. The immune thing drives me crazy!! Eight years later, we are still trying to explain that he has a GENETIC immune disorder. Exposing him to germs will no more fix his immune system than hanging out with a friend will make your hair or eye color change. <br /><br />Anyway, excellent post and continued success with your daughter. <br /><br />StephAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-48030040760027938362012-03-19T07:56:50.195-04:002012-03-19T07:56:50.195-04:00I couldn't love this post more. I am so sorry ...I couldn't love this post more. I am so sorry for the loss of Graham. We had triplets at 28 weeks and our daughter did not survive coming home from the NICU either. My surviving triplets are now 4 and we deal with so much of the same, especially with our daughter. She too had a brain bleed and has so many unexplained issues going on right now that it is difficult to even keep her in school. This post brings back so many memories of what we went through. I look forward to joining you on Parents of Preemies and so glad to meet you.McKennahttps://www.blogger.com/profile/09299201553545817162noreply@blogger.com