Full/Near-term NICU support thread-- May/June 08 - Mothering Forums

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#1 of 135 Old 05-20-2008, 07:10 PM - Thread Starter
 
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***Please note: This is a SUPPORT THREAD for parents of NICU babies who were born at or near term. This is not the place to post that your experience was so much worse because your baby was born much earlier, nor the place to suggest that parents of later babies should check themselves. Having a child go to NICU is traumatic, regardless of their birthweight or gestational age. If you worry that your baby didn't have "enough" problems to post in the rest of the forum, this is meant to be a safe thread for you. ***

While my most recent baby, Mr. Bear, did not go to NICU I've recently rediscovered the need for such a thread. I have two NICU graduates-- BeanBean, born at 37w3d stayed for chorionamnionitis (my water was broken for 4.5 days before he was born) and meconium aspiration. Bella was born at 36w5/6d, and went to NICU because she was having a hard time breathing, and for a few hours refused to do so without CPAP. Today they are 5.5 and 26 months old, and for the most part they're all right (though Bella is still very different from her siblings, and I still think she would have benefited from more time on the inside).

Rynna, Mama to Bean (8), Boobah (6), Bella (4) and Bear (2)
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#2 of 135 Old 05-20-2008, 09:25 PM
 
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GREAT idea Rynna!

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#3 of 135 Old 05-21-2008, 03:46 PM
 
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Oh, thank you. I have never been able to post about my experiences her and hope this is a safe place to find support. I *really* need someone to talk to. But my baby did not stay in NICU, though he does suffer from some developmental delays. I did experience trauma at the hands of medical staff due to medical incompetance. I also experienced neglect and abuse of power by the medical staff. I don't know what is wrong with my baby, but I do know he was a planned c section that was a month early due to a CLERICAL ERROR! I had been telling my ob for months I felt my due date was wrong, and was ignored and one time he even patted me on the head. I don't think my baby was even all the way out before Dr. hollered "37 weeks!" I know for a fact my baby was NOT 37 weeks!! He looked horrible, like he wasn't done!

I wasn't able to get any answers from anyone, they are all to worried about covering their *ss. So, here I am 2 yrs. later with a baby that looks like he is 12 months, and acts the same, and I don't know why.
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#4 of 135 Old 05-21-2008, 03:51 PM
 
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Oh man, lilsparrow, that's terrible! When my ped checked out Audrey, she said she had all the classic signs of her gestational age- she was 34wks, and some of the things she mentioned were no cartilege in her ears, very non-prominent nipples, and I know there were a few others that I can't remember at the moment.
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#5 of 135 Old 05-21-2008, 04:00 PM
 
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Oh man, lilsparrow, that's terrible! When my ped checked out Audrey, she said she had all the classic signs of her gestational age- she was 34wks, and some of the things she mentioned were no cartilege in her ears, very non-prominent nipples, and I know there were a few others that I can't remember at the moment.
He had very prominent nipples too, and he was all wrinkled, like a little bird. Do you know where I can find the info for the signs of gestational ages? I wish I knew, because I REFUSE to accept 37 weeks. I just know it's not true.

ETA: Plus, he had a very poor latch and a weak suck, and could not keep weight on. he lost 11 oz in the hospital and we were only there for two days. They wanted to keep the baby ... hmph .... no thank you, they had done enough. it took forever to get weight on him. He wasn't diagnosed failure to thrive (thank God), but we had to fight for every oz for the first four months, and bring him in for weekly weigh in's to the lactation consultant. she was great. The only one I could trust from the hospital.
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#6 of 135 Old 05-21-2008, 05:01 PM
 
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Oh, no, she had NO nipples, like absolutely no protusion, no color differences at all. Audrey only lost 7oz in the hospital, starting at 5lb2oz and left the hospital at 4lb11oz. As of right now she is gaining an oz a day, so for us nursing is going well.
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#7 of 135 Old 05-21-2008, 05:03 PM - Thread Starter
 
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Assessment of Gestational Age; That might help. What a scary experience.

My Bella would have scored 33, which puts her right about where her calculated GA was-- 36w5/6d. BeanBean's would have been different, but it's really difficult to apply those to him because he was born after 4.5 days have being surrounded by almost no fluid.

Rynna, Mama to Bean (8), Boobah (6), Bella (4) and Bear (2)
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#8 of 135 Old 05-21-2008, 05:28 PM
 
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Great thread! DD is a 35 weeker and we had a rough start, although only 1 night in the NICU and 1 night in the nursery for jaundice.

We have some ongoing issues that I believe are related to her gestational age - "moderate" VSD, reflux (improving now that she's sitting and on solids), tracheomalacia... She also had a horrible time figuring out how to nurse effectively and latching.

The first 10 weeks or so were impossibly hard.

ETA - Lilsparrow - that sounds really difficult - I'm so sorry.
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#9 of 135 Old 05-21-2008, 05:56 PM - Thread Starter
 
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We have some ongoing issues that I believe are related to her gestational age - "moderate" VSD, reflux (improving now that she's sitting and on solids), tracheomalacia... She also had a horrible time figuring out how to nurse effectively and latching.
Bella would not latch for a time; Things got better after we clipped her tongue tie, but even so her little mouth just wasn't big enough for my gigantinormous boobs. She was also the only one of my children who would fall asleep rather than nurse, if it was too much work. I fed her with a fingerfeeder for several weeks, and then got her to nurse with a nipple shield before weaning her to the boob.

Of my four children, Bella was (so far*) the latest talker, the latest to become interested in her own independance, the latest crawler, walker, etc. She's also had the worst time recovering from illnesses which her older siblings would just blow off, and she's the only one who has asthma all the time (though BooBah wheezes when she's sick). She has *much* more sensitive skin than her siblings, and has more allergies (to food and everything else) by a *long* shot.

When she was tiny, she used to cry and then stop and freeze in awkward positions, like she'd gone into shock; It's something that premature babies do quite commonly, but I'd never heard of a baby who was nearly 37 weeks doing it. It was quite disturbing to watch. She still does it, but to a lesser extent than when she was younger.

*Bear is only three months old, but he's much more alert and interactive than Bella was at this age, and his speech & motor development seem to be developing more along the lines of BeanBean & BooBah.

Rynna, Mama to Bean (8), Boobah (6), Bella (4) and Bear (2)
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#10 of 135 Old 05-21-2008, 06:02 PM
 
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Bella would not latch for a time; Things got better after we clipped her tongue tie, but even so her little mouth just wasn't big enough for my gigantinormous boobs. She was also the only one of my children who would fall asleep rather than nurse, if it was too much work. I fed her with a fingerfeeder for several weeks, and then got her to nurse with a nipple shield before weaning her to the boob.]
Isabella (is that Bella's full name, or just Bella?) was on a nipple shield for probably 12 weeks and was triple fed for probably 10. It was an exhausting time - I'm not sure how we did it. I also ended up with really severe breast/nipple infections as well and was in a huge amount of pain for much of that time (finally cleared up around 4 months). I have fairly flat nipples and she would try so hard, but just couldn't latch on. She lost a lot of weight initially, which I'm sure contributed to the jaundice. My milk also came in really slowly so she got formula supplementation for a bit, which I worry now contributed to her food intollerances.
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#11 of 135 Old 05-21-2008, 06:48 PM - Thread Starter
 
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Isabella (is that Bella's full name, or just Bella?)
It's her nickname/pseudonym; It's not related to her actual name at all. That said, she's called "Bella" a lot more than her actual name, as well as variations thereupon: Screamabella, Poopabella, Sleepabella, Bellatrix LeBella (like Bellatrix LeStrange, only less evil and more odd), Bellatricksy... Yeah, we pretty much go on like that. Bella herself will frequently correct people with her actual name these days, which is adorable because she doesn't have all the sounds required.

My NICU babies never had any formula at all (though I did have to pump for them-- never had to do much of that for BooBah); It's Bear, who was born full-term and healthy who ended up with the artificial milk, and the predigested milk, and who today is on Neocate because he can't tolerate anything else. :

Rynna, Mama to Bean (8), Boobah (6), Bella (4) and Bear (2)
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#12 of 135 Old 05-21-2008, 07:49 PM
 
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Oh, no, she had NO nipples, like absolutely no protusion, no color differences at all. Audrey only lost 7oz in the hospital, starting at 5lb2oz and left the hospital at 4lb11oz. As of right now she is gaining an oz a day, so for us nursing is going well.
Oops ... I meant to write non-prominent. They weren't invisible, but they were barely there. You could hardly see them, and they were so little.

You all are really nice women. I am glad this thread is here.

ETA: Just checked his nipples, they have grown with him , but there is still very little difference in color. Maybe that's normal?
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#13 of 135 Old 05-21-2008, 08:42 PM
 
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I might belong here. DD2 had a wonderful beginning though, she was a HB at 38 wks, was perfectly healthy for the first couple weeks of her life. The day she turned 2 wks old, we discovered the nasty cough DH had when she was born was actually pertussis, DD2 started coughing exactly a week later, although she didn't get really ill until she was 5 wks old. Life went downhill from there. Gabrielle ended up being O2 dependent for 6 months, and now at 19m old has reactive airway disease and requires use of inhalers when ill.


I often feel like I don't belong anywhere, she wasn't a NICU baby, isn't really special needs, but isn't completely normal either. Parents with preemies often understand the precautions we take with her so I lurk here at times.

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#14 of 135 Old 05-21-2008, 08:58 PM - Thread Starter
 
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I often feel like I don't belong anywhere, she wasn't a NICU baby, isn't really special needs, but isn't completely normal either. Parents with preemies often understand the precautions we take with her so I lurk here at times.
Welcome!

Rynna, Mama to Bean (8), Boobah (6), Bella (4) and Bear (2)
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#15 of 135 Old 05-21-2008, 10:37 PM
 
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Welcome!
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Also, when my ds was born, his fingernails looked funny. They are better now, with only two still looking funny. Did anybody elses baby have funny fingernails?

I heard that preterms caught up by two, but my 2 yr old still looks and acts like he is 12 months old. He still eats baby food, and he just still looks like a little baby, even though he is fat now. He doesn't say anything other than, ugh, he didn't even sit up until he was 14 mo (tonal issues). Will he get better? Will he eventually catch up, or is it a maybe, maybe not thing?
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#16 of 135 Old 05-21-2008, 11:10 PM - Thread Starter
 
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Lilsparrow-- would you mind posting a bit more about your son's birth & development? After two years, I'd be concerned about something else going on; As you said, most premature infants (all but the very youngest) are developing more normally by age two.

That said, while my Bella is fairly average for two, she's so different from her siblings that it doesn't quite *feel* average to me. She is, however, making progress.. and I suppose that's the most important thing.

Rynna, Mama to Bean (8), Boobah (6), Bella (4) and Bear (2)
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#17 of 135 Old 05-22-2008, 12:34 PM
 
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That said, while my Bella is fairly average for two, she's so different from her siblings that it doesn't quite *feel* average to me. She is, however, making progress.. and I suppose that's the most important thing.
Gabrielle has turned out to be average in most things, sitting up, rolling over, all those things were behind for a while due to poor muscle tone in her chest but then she just caught up all of a sudden physically. She is 19m but not that verbal yet, only a few words.


What we struggle with the most is illness, Gabrielle gets sick so much. Last summer she went 2 months without getting a bug and that was the longest period without being ill. Since Thanksgiving, we have only had a week or two here or there without her fighting something.

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#18 of 135 Old 05-22-2008, 03:25 PM
 
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I am not sure if we belong here or not. My kids were a bit early but not terribly so, but at least my youngest has other issues which complicated his arrival and made him act a lot earlier.

DD1 was born at 34w5d at 4lbs 1oz and came home day three at 3lbs 11oz. She has scarring on her brain MRI that is likely from her prematurity. She had trouble keeping her body temperature for a while and her suck was terrible. I didn't have to release her latch until she was six months old. She had bronchiolitis many times during her first years, asthma and breathing problems. She was on inhalations until she was 7. She is 10 years old now with some issues, but not necessarily related to her prematurity.

My DS was born at 36w4d at 5lbs even. He was intubated and ventilated for a week and in the NICU for almost a month with problems with his sugars, bradycardia, apnea, oxygen saturations, feeding, and body temperature. He is still not verbal, tube fed, and on oxygen while sleeping, though he is walking and mischief! He will be two July 2nd. At this point it is thought that he has a mitchondrial disorder which may explain his extreme reaction to his mild prematurity.

It is nice to meet you all!
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#19 of 135 Old 05-22-2008, 03:41 PM - Thread Starter
 
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Shalom!

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#20 of 135 Old 05-22-2008, 04:08 PM
 
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#21 of 135 Old 05-22-2008, 11:49 PM
 
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Hi everyone, I'd like to subscribe if that's ok!

I'm due anyday now, but if my babe isn't here by the 28th (I'll be full term on the 30th) I'm having another c-section. I'm hoping and praying for a VBAC.

I know my babe will be in the NICU but not sure for how long. He's been diagnosed with a slow growing, benign brain tumor so he'll be there initially for observation and testing. If things look 'bad' which is a very slight possiblity, he'll be transported to another hospital for brain surgery right away. Ideally they'd like to wait a couple of months for him to get bigger. The bigger he is, the more blood volume he'll have and the more chance he has to survive the surgery.

Thanks for starting this thread, I've lurked here a lot trying to gather some information but as my little one will be full term, I haven't found too much.

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#22 of 135 Old 05-23-2008, 12:17 AM
 
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Lilsparrow-- would you mind posting a bit more about your son's birth & development? After two years, I'd be concerned about something else going on; As you said, most premature infants (all but the very youngest) are developing more normally by age two.

That said, while my Bella is fairly average for two, she's so different from her siblings that it doesn't quite *feel* average to me. She is, however, making progress.. and I suppose that's the most important thing.
Bean was very skinny, and wrinkled. he weighed six pounds, but he was VERY skinny. And he had a different look about him then my other three, he looked *not done.* When my visitors saw him, everyone said, "Awwwww," but not in a "he's so cute" kind of way. More of a "poooooor little thing." His look evoked pity. He looked very very vulnerable, like a baby bird.

I had mentioned in the hospital, that I was neglected and abused. In one instance, after two days of laying on the same bloody sheets, (they had by that time gathered around my feet) and I was lying directly on the plastic mattress cover. Bean had a lot of trouble latching because he was very sleepy and weak. I was on pain medicine because of my surgery and I was having trouble holding on to him because of the slippery mattress cover. I needed something with more grip because the one tiny pillow I had kept slipping. My nurse button was being ignored as usual. Bean was crying and I was crying because I couldn't feed him. Finally a nurse came in on her rounds to see if the baby had eaten. SOBBING, I told her no, that I couldn't feed him because of the sheets, and I needed another pillow, the baby kept slipping. She said, "Okay, I'll mark that on my chart, and she NEVER came back!!

I felt abandoned and helpless and powerless to feed my baby, it was a horrible feeling and one I can only describe as traumatizing. I have never felt so alone in my life. I decided that I was going home the next day. My then dd6 could have taken care of me better. She would have at least got me a pillow.

I informed the next day nurse, that I was leaving AMA. She said that I could leave but that I couldn't take the baby because according to the chart he WASN'T EATING ENOUGH. I don't remember exactly what I said, but I do know I was primal, and when I was done my speech of rage, she did not argue with me anymore, but did convince me to stay through the next morning so the doctor could sign me out. BIG MISTAKE. That night, the evil nurses come out at night I suppose, I was left without pain medicine, AGAIN. I had to walk to the nurses lounge to find a nurse for my previous dose. This time I woke up two hours, after I was supposed to get my next dose. The pain from the c-section was EXCRUCIATING! After ignoring my button forever, the nurse came in and exasperatedly asked me what was the problem. I told her I needed my pain medicine, and complained that it wasn't given to me on time. She responded that the prescription said "if needed." I told her, ( I was really pissed), "I just got my f*2#$ abdomen sliced open ... ASSUME I need it!" So, she went to get the medicine, plopped it in my hand and left. No drink to take it with, nothing. So, I called her back and she brought me a drink and set it on the other side of the room! Well, my husband who before this didn't believe me, happened to be there sleeping (we thought) in the recliner, and he heard and saw the whole thing. He was really mad and packed my things and we left. Fled is more like it. They were evil.

Enough about me, bean has not been vaxed. He had trouble keeping on weight. he lost 11 oz. in the hospital. It got only slightly better, when we got home. Also, I was so wigged out about the doctors and nurses the only only one I would talk to was the LC. She was LIVID about my treatment at the hospital, and the only one I trusted.

He had bronchiolitis a lot, and he would lose the weight we worked so hard to put on. So, he was yo yoing for a while. it was really hard, because he had such a weak suck, and I was very inexperienced. When he was four months old, my then ds8 was diagnosed with Type 1 Diabetes. It was very sudden and within 24 hrs I found myself back at the same hospital I had fled 4 mos. earlier, and SWORE I would never set foot in again. And needing to depend on the peole I hated and distrusted to care for my son. It was very surreal.

I tried to pump the first day, and the stress of it all was just too much for me and I weaned him, even though I didn't want to. I just didn't have it in me. The room in the hospital was not conducive to pumping, and I didn't know how AND I had a crappy manual pump AND I was so devastated about my ds8, I just didn't have it in me. BUT when he started the formula, he didn't have trouble with the weight anymore. He finally started to look better.

Bean hit ALL of his milestones, either on time or early, until six months, when he should have started to sit up. Then he just stopped. He was saying the syllables ma and da, then he just stopped. It was like he stayed at 10 mos. FOREVER. He finally sat up at 14 months, and now at two is still in the beginning stage of walking. He just discovered his toys a few weeks ago.

He has always enjoyed a lot of social interaction, he just always seems alot younger than he is. His hearing and vision are good. When he was accessed for speech, physical and cognitive development right before he turned two, he was given the range of 9-18 months, depending on the category.

Ok, this was long. Excuse the mini vent in the beginning.

Oh yeah .. a couple of nights ago in bed, I was laying my head on his chest and it sounded like his heartbeat was irregular. But, wouldn't the doctor have noticed that at his check ups? He listens to his heart. Bean was just there a couple of weeks ago.
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#23 of 135 Old 05-23-2008, 11:30 AM
 
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i'm so sorry mama.

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#24 of 135 Old 05-23-2008, 04:04 PM
 
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lilsparrow - your treatment in the hospital is heartbreaking - I wish your DH could have been there for you more, too.

What does your ped say about bean's growth and development? Have you contacted Early Intervention in your area? (I know it's free.) I would definitely get ahold of them.
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#25 of 135 Old 05-23-2008, 06:41 PM
 
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I think I might belong here too. I charted for pregnancy with DS2 and am POSITIVE of my dates and he was born @ 40 weeks, 1 day. The problem is that he came out weighing 6 lbs 4 ozs and COVERED in vernix. He was a HB and the MW did an assessment on him and agreed he looked "pre-term". She mentioned something about ear curling and of course the vernix and size.

Cut to 2 weeks later, he had a cough that got worse and worse along with periods of rapid breathing that became more and more frequent. I e-mailed my MW to ask if it was normal and told her I felt "paranoid" she said she would come over the next day to check him. She came over and sent us to the ER.

ER said he was fine and he was being discharged. We called MW and she actually came to the hospital so they would not send us home. Shortly after they tried to take blood and DS turned blue. They discovered he was having congestive heart failure and transported him 90 mins away to a children's hospital and they discovered a life-threatening heart defect. They called the cardi surgeon in @ 4 am and had him in surgery by 7 am. 8 hours later and he was fixed. We spent 9 more days in the CVICU and they sent us home.

That was almost a year ago and it is still hard to type it out. It fills me with anxiety and sadness. DS's heart appears to be doing well - he had Total Anomolous Pulmonary Venous Return. Now his issues are hypotonia and low weight. He's losing weight We start PT next week and are meeting with a nutritionist. He's BF and eats lots of fatty solids.

Nice to "meet" you all. It feels nice to know I'm not alone.

Zen doula-mama to my spirited DS1 (2/03), my CHD (TAPVR) warrior DS2 (6/07) & a gentle baby girl (8/09)
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#26 of 135 Old 05-23-2008, 10:09 PM
 
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I think I might belong here too. I charted for pregnancy with DS2 and am POSITIVE of my dates and he was born @ 40 weeks, 1 day. The problem is that he came out weighing 6 lbs 4 ozs and COVERED in vernix. He was a HB and the MW did an assessment on him and agreed he looked "pre-term". She mentioned something about ear curling and of course the vernix and size.

Cut to 2 weeks later, he had a cough that got worse and worse along with periods of rapid breathing that became more and more frequent. I e-mailed my MW to ask if it was normal and told her I felt "paranoid" she said she would come over the next day to check him. She came over and sent us to the ER.

ER said he was fine and he was being discharged. We called MW and she actually came to the hospital so they would not send us home. Shortly after they tried to take blood and DS turned blue. They discovered he was having congestive heart failure and transported him 90 mins away to a children's hospital and they discovered a life-threatening heart defect. They called the cardi surgeon in @ 4 am and had him in surgery by 7 am. 8 hours later and he was fixed. We spent 9 more days in the CVICU and they sent us home.

That was almost a year ago and it is still hard to type it out. It fills me with anxiety and sadness. DS's heart appears to be doing well - he had Total Anomolous Pulmonary Venous Return. Now his issues are hypotonia and low weight. He's losing weight We start PT next week and are meeting with a nutritionist. He's BF and eats lots of fatty solids.

Nice to "meet" you all. It feels nice to know I'm not alone.
OK Jillian, I watched your montage and now I am BAWLING!! The pics of Evan after his surgery are heartbreaking!! You poor mama! I am so glad he made it through, so glad he is recovering well. I bet it was hard typing that out. I had Bean 2 yrs ago, and didn't have NEAR the stressful situation you had, and it was hard to type out mine. You have a beautiful family, I hope Evan grows stronger everyday. My d10 with type 1 watched the montage and was very touched. He couldn't believe how little he was and his heart melted when he saw him after the surgery, then he was so relieved when the progressing pictures showed him looking healthier and "fatter" in my sons words.

to you and : to your family.

ETA: Jillian, did you see anything in my post that would make you think I should get my LO's heart checked?
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#27 of 135 Old 05-23-2008, 10:15 PM
 
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Thank you Justmama and veganone. My ped is about as helpful as Jillians was. I did contact Early Intervention. They were the ones who assessed him. He is receiving services for occupational and physical therapy, and speech. Seems like a great program.

I love my Bean, and after reading Jillians post, I am very grateful and I am going to go and give him a great big hug.
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#28 of 135 Old 05-23-2008, 10:31 PM
 
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Oh yeah .. a couple of nights ago in bed, I was laying my head on his chest and it sounded like his heartbeat was irregular. But, wouldn't the doctor have noticed that at his check ups? He listens to his heart. Bean was just there a couple of weeks ago.
You can ask for an EKG - it is really non-invase and can detect any arrythmia (abnormal heartbeat). Or, if you REALLY want heart answers ask for an echo - it is a u/s of the heart and will show the entire anatomy. Most heart defects have a murmur that can be heard just from listening to the heart. It sounds like a "whoosh" between beats. But nothing you've said really screams heart issues. The biggest warnings are blue lips and/or nailbeds and periods of rapid breathing with lots of "work" like chest retractions. Sadly I no longer trust doctors to do what they are supposed to so I check a lot of things on my own. I have an entire medical closet of tools - stethoscope, blood pressure cuff, glucometer, etc

It is scary when you're little one is behind. I completely understand. I go back and forth between wondering if he is just delayed to wondering what other scary surprises are in store for us. Not knowing is the worst. Have they checked your LO for malabsorbtion? I think that is next for us. If he loses weight again they will freak out for sure. I'm trying to ignore it for now and hope for the best. Evan's 1 yr surgery follow up is in a few more weeks and I'm really excited to see the echo and hear how his heart is doing.

Tell your son thanks for watching the montage! How sweet

Zen doula-mama to my spirited DS1 (2/03), my CHD (TAPVR) warrior DS2 (6/07) & a gentle baby girl (8/09)
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#29 of 135 Old 05-23-2008, 11:23 PM
 
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You can ask for an EKG - it is really non-invase and can detect any arrythmia (abnormal heartbeat). Or, if you REALLY want heart answers ask for an echo - it is a u/s of the heart and will show the entire anatomy. Most heart defects have a murmur that can be heard just from listening to the heart. It sounds like a "whoosh" between beats. But nothing you've said really screams heart issues. The biggest warnings are blue lips and/or nailbeds and periods of rapid breathing with lots of "work" like chest retractions.
No woosh sound for sure. It was more like a regular heartbeat and every 25-30 beats or so it would skip a beat. It was pretty consistent. Maybe it was the way I was laying my head on him. I think I'll get him checked out to make sure.


Quote:
Sadly I no longer trust doctors to do what they are supposed to so I check a lot of things on my own. I have an entire medical closet of tools - stethoscope, blood pressure cuff, glucometer, etc
I am with you there, Jillian.

Quote:
It is scary when you're little one is behind. I completely understand. I go back and forth between wondering if he is just delayed to wondering what other scary surprises are in store for us. Not knowing is the worst.
I don't know anything about heart defects. What are the typical concerns after heart surgery? I noticed you mentioned weight gain, are there other complications? Is his life span impacted, and will he need special considerations for physical activities and things like that? What is the best/worse case scenario?


Quote:
Have they checked your LO for malabsorbtion? I think that is next for us.
No, he is actually quite chubby now, praise God. Except he seems a little vertically challenged.

Quote:
If he loses weight again they will freak out for sure.
Praying hard for Evan.


Quote:
I'm trying to ignore it for now and hope for the best. Evan's 1 yr surgery follow up is in a few more weeks and I'm really excited to see the echo and hear how his heart is doing.
I hope, hope, hope it goes well.

Quote:
Tell your son thanks for watching the montage! How sweet
He's a great big brother, and I know he couldn't help but think of what it would have been like if that was our Bean. Aiden looks like a great big brother as well. I imagine this has been difficult for him too, God bless him.
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I think I might belong here too. I charted for pregnancy with DS2 and am POSITIVE of my dates and he was born @ 40 weeks, 1 day. The problem is that he came out weighing 6 lbs 4 ozs and COVERED in vernix. He was a HB and the MW did an assessment on him and agreed he looked "pre-term". She mentioned something about ear curling and of course the vernix and size.

Cut to 2 weeks later, he had a cough that got worse and worse along with periods of rapid breathing that became more and more frequent. I e-mailed my MW to ask if it was normal and told her I felt "paranoid" she said she would come over the next day to check him. She came over and sent us to the ER.

ER said he was fine and he was being discharged. We called MW and she actually came to the hospital so they would not send us home. Shortly after they tried to take blood and DS turned blue. They discovered he was having congestive heart failure and transported him 90 mins away to a children's hospital and they discovered a life-threatening heart defect. They called the cardi surgeon in @ 4 am and had him in surgery by 7 am. 8 hours later and he was fixed. We spent 9 more days in the CVICU and they sent us home.

That was almost a year ago and it is still hard to type it out. It fills me with anxiety and sadness. DS's heart appears to be doing well - he had Total Anomolous Pulmonary Venous Return. Now his issues are hypotonia and low weight. He's losing weight We start PT next week and are meeting with a nutritionist. He's BF and eats lots of fatty solids.

Nice to "meet" you all. It feels nice to know I'm not alone.

DD2 was covered in vernix as well, I was shocked at how much. She was born at 38wk and 6d, she came naturally at home as well. DD1 had also decided to come at 38 wks, no vernix at all. The one year anni is hard, I wasn't prepared for how hard it would be. It was difficult when Gabrielle turned 1, when she got sick, and right now I'm facing when she got off O2. Which I didn't think would mean much, but I guess when it was such a part of our lives, it does. It was the last day of May last year, it's all I've been thinking about all week, I can't believe it was only a year ago.



LOL, and I hear everyone about all the medical equipment, we have a number of things as well. I have a great pedi but I've found that I still have to speak up, be very proactive, and push for the things I want. If I feel something didn't get discussed in enough detail then I make another appointment, and another if I feel like it. Early intervention in my area has been a joke, not helpful at all for DD1. I have been debating about waiting a bit longer to see if DD2's speech increases or going the private route. . I totally understand the scary surprises, I just wish they all would go away.

There is no way to happiness, happiness is the way.
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