Please post your info/experiences with your twins' health issues here...

[SnowBirdie]

please share any ttts, reflux, prematurity, developmental delays, or any other health issues your twins had/have, how you made/make it through, what helped and didn't, and how they are doing now. there is nothing like hearing it from people who have lived it, so please share with us. :)

[Free Bird]

I have this recipe for a homemade diaper rash ointment that works miracles! I'm not sure which one it would go to so I'll put it here and ya'll can move it if necessary. I have used this with Morgan who seems to have the most sensitive Hiney I have ever seen.

1 tube of Desitin
1 tube of A & D ointment
1 tube of Lotrimin (or any other antifungal ointment)
1 tube of 0.5% Hydrocortisone cream
and a couple tablespoons of plain Maalox (or other plain antacid).

Mix all the ointments together and then slowly mix in the Maalox until it's blended in and nice and pasty. Add however much or little you need until you et a good consistency. Antacids seem to be the key ingredient in the butt pastes. When my singleton was a baby, the pedi gave us a script for butt paste and there was an antacid included in the doctor-prescribed version too, which is what prompted me to just make my own afterwards.

If there are open sores, I would buy some Lansinoh to apply on the butt first, let her go without the dipe for a while like you've been doing, and then put the butt paste on top of that. The pure lanolin will help heal the skin faster.

If that doesn't clear it up within a week, I'd take her in to the pedi.

[Free Bird]

Megan & Morgan were born at 34 weeks. Around the 6 mo mark, I was talking to my Pedi about Morgan does so much more than Megan does. He recommended I take them to Early Intervention. It is a free services offered to parent's of premature and special needs kids. He wasn't really concerned about the difference in their developement but thought it was a good idea to have them evaled just because they are preemies and they can catch things before it gets bad if there is something wrong.

The girls were almost 7 mo old by the time we got the appt. Yes, it does take a while to get an appointment sometimes. Anyway, both girls were evaled and it turned out Morgan was on or above target for her adjusted age, which I had kind of figured already. Megan was behind in her developement. She scored as a 4-5 mo old in most areas which was still younger than her adjusted age. They set up Physical Therapy (PT) and Occupational Therapy (OT) for her. We finally started it around the end of August. Megan has gone from a little girl who would roll over here and there to a little wiggle worm in just two months! She is consistantly rolling, which makes diaper changes quite a chore now. She is also starting to crawl and is now sitting by herself.

It hasn't been easy to see that one twin excells at everything she does and the other has such a hard time with everything she does. There have been many days that I just sat and cried wondering if my Megan was ever going to catch up with her sister. Those days are few and far between now. Seeing the progress she has made and watching her change before my very eyes has been one of the greatest experiences as a Mom.

[Iggy]

My boys were 34 weekers. Dominic had 8 days of NICU time, and then at 4 months he was hospitalized for 3 days with RSV. Christian had no NICU time and hasn't been sick much. Both of them have laryngomalacia. At 9 weeks old, they had to have a laryngoscopy (camera tube down the nose). It was extremely not fun, and the ENT wasn't very nice either. The laryngomalacia hasn't really bothered them at all, it just makes their breathing loud. Now at age 2 they only really make the stridor noise when they're tired. They do it deliberately sometimes too, drawing in a deep breath to hear the noise.

Laryngomalacia is a congenital malformation of the epiglottis and laryngeal structures. Inspiration causes partial collapse and loud vibration of the soft tissues around the airway; this produces the characteristic noisy breathing called stridor. Stridor sounds a bit like a seagull cawing or a hyena to me. It can be very loud. The ENT believes the retractions from the laryngo caused my boys to have reflux. As their airways stiffened as they got a bit older, their reflux disappeared with the retractions on inspiration.

Good link on stridor and laryngo: http://www.pedisurg.com/PtEducENT/Stridor&laryngomalacia.htm

In an issue unrelated to the laryngomalacia, my boys have speech delays. There doesn't seem to be any particular reason why, as they've been tested and evaluated left and right and there's nothing wrong with them except some underarousal of the mouth and lower facial muscles. But they are 2 years old even by adjusted age and they don't say any words. They can sign "more", "eat", and "all done" and don't seem interested in learning any new signs. Dominic takes the lead in communication. He was the first to use signs, and would sign on his brother's behalf, either by doing the sign and pointing to his brother, or by signing for food, giving it to his brother, and then signing for food for himself. Their cognitive and fine motor skills are ahead for their age, but their receptive and expressive language skills are behind. Less so for receptive than expressive. They just don't seem interested in talking. They babble to each other a lot but do not repeat any sounds after me or DH. They've been in speech therapy for over three months. We're currently trying to teach them to blow air out of their mouths, something they can't seem to understand the concept of. Chris blows air out his nose but not out his mouth. I just keep working with them and hoping they'll talk soon.

[SnowBirdie]

thanks, lissette! that sounds like a good plan. hate those rashes! we will add it:)

thanks also for your post on your sweet megan. i am so glad she is so doing well, and i agree it is really hard to wonder if one will do what the other seems to do so easily. the early intervention progeams have done a world of good, and it sounds as she is blossoming. thanks for sharing that with us! :):)

[SnowBirdie]

thanks, iggy! amanda has laryngomalacia too, and it was really hard for her to breathe when she was little. there were several months she couldn't even take a bottle at all. she snored horribly, and has only slept fairly quietly for a few months. we spent many nights wondering if she would catch herself if she couldn't breathe...ugh. she does that noise on purpose now too, and they call it the evil voice...silly girls. :lol

as for the speech delay, i hope the therapy helps, and it is interesting that amanda didn't talk really at all until her way after she was two. we thought annie said it all for her, but it would be interesting to see a study of kids with laryngomalacia, and whether it indeed might be related to speech delays. i know of two other kids with it, and now that you mention it, neither spoke until after their second birthday. one still doesn't much at three, and actually every child i have known of with it was slower to talk than expected. hmmm...that is very interesting! see what happens when we share info? i hope they start talking soon! :friends

[Iggy]

I asked the ENT whether it would affect their speech, because they have speech delays, and he swears not. All the therapist said there's no literature on it. I don't know.

[SnowBirdie]

i haven't found anything on that either, but just because they don't know the connection doesn't mean there isn't one, right? i guess it doesn't matter in the long run, since many cases of laryngomalacia and fairly mild and it would make sense people wouldn't correlate the two. as long at the kids can breathe and talk in the long run it works out, but i think it is interesting. :)

[Iggy]

Yeah I thought it was logical that there would be a connection, but they swear not :shrug Who knows. There isn't a ton of literature on laryngo, I looked it up in the medical journal databases when the boys were diagnosed and it doesn't seem to be a popular thing to write papers on. So maybe nobody has noticed a correlation between laryngo/tracheomalacia and speech delays.

[TEF]

A & A both had developmental delays. Not severe but still there. Mostly it affected their speech and it wasnt really diagnosed until they went to kindergarten. They were enrolled in a speech program from age 5 to age 9. Last week, Alex was released from the program and next week, Anthony will be. Our local speech program did wonders for them and we also did alot of "correcting" their speech at home.
My best advice is, if you suspect a problem with your twins' speech, get them help early on. I wish I had them start speech before they entered school. It would have helped immensly with day to day school work.

I don't know if this qualifies for the resources but, thought I would through it out there, anyway.

[SnowBirdie]

thanks, tef, it sure does qualify! i appreciate you sharing that with us, and you make a good point..get help if you suspect any problems! :)

iggy, i find the medical community dismisses laryngomalacia as no big deal and tells us how they outgrow it, so no worries. i know in some cases that is true, but i spent many, many nights with annie crying and me having to hold amanda upright to breathe..sigh. i had them both while simon was at work, and it was hard to give them both what they needed. she only could nurse for a long time in one certain position, and she really couldn't breathe if she laid on her back. the girl could pull herself almost upright to a sitting position at a very young age from frantically trying to breathe, and the doctors just said no worries, she will outgrow it soon :roll she had apnea at night, but she would gasp and catch herself and move to breathe better, so they didnt' want to do surgery. she didnt' outgrow it for a very long time, and it isn't completely gone now. poor girlie:(

i even had one make the brilliant observation (after seeing they were twins and hearing how much trouble amanda had) casually noticing that "you have two of them, so i guess that might make her not being able to breathe well a little harder." guess they gave him a medical degree based on his keen powers of observation and talent for understatement.:roll

[Twintastic]

I am up to this point in submissions.

[Pie]

My 18 month old son has reflux - has had it since birth. I am frustrated with the doctors (he's had 2 pediatricians) because I think the first doctor thought I was just a first time mom & I was exaggerating how much he was throwing up when he was little. I kept getting, "he'll grow out of it by 6 months." She finally put him on reflux meds when he fell off the growth charts at 6 months & was consistently throwing up 1/4 of his food every day. 2nd doc kept telling me he'd grow out of it by a year. We have tried 4 or 5 times to take him off the meds without success. Now at 18 month checkup, doc says he could be on meds until he's 5 or even later. I have checked reflux.org, and it seems that my son is on a relatively low dose of medication (7.5mg Prevacid 1x/day). His reflux is totally controlled by this dosage. I am concerned about the long-term use of medication because I have been unable to find studies of long term use in children. We haven't taken him to a GI specialist because the ped. doesn't think it is necessary & I don't want to subject my son to a bunch of tests that he doesn't need. Does anyone have a similar experience? Do any of you have children that needed medication, but were eventually able to go off of it? What age were they? Thanks!

[TwinzGear]

I was 20 weeks along with my pregnancy before we discovered we were going to be blessed with twins. The ultrasound showed two healthy babies with two sacks but just one placenta. My doctor informed me that this meant my boys were identical twins, and their consistent & stable growth would be closely monitored. I believe she also mentioned something about the possible risk of TTTS, but at that point in time, there was so much to take in, that I don’t really think I heard it all.

Every two weeks for the next 10 weeks, we had ultrasound after ultrasound after ultrasound. And every time, baby A was a bit smaller than baby B, but both boys were growing consistently and their size difference wasn’t changing. Everyone assured us this was good news.

At about 30 weeks, my weight began to shoot up. Of course being pregnant with twins, a large weight gain was to be expected. But I was gaining more than a pound a day and the swelling in my legs and hands was literally beyond belief. My blood pressure was also beginning to climb and I was put on bed rest at 32 weeks. I did my very best to actually follow doctor’s orders and stay in bed, but I was so darn uncomfortable, that I just couldn’t stay in one place for too long. From the chair to the bed, from the bed to the couch, from the couch to the shower (all of this with the help of my mom and my husband as I couldn’t get in or out of any of these places my myself anymore) just trying to find some position were I could be comfortable for a few minutes.

Then all of a sudden it hit me……like a ton of bricks….at 12:30am it hit me. I was pregnant with twins and the “romper room” that I had become accustomed to in my stomach was still. Scarily still in fact. I quickly realized that I was so pre-occupied with myself and my own discomfort that I was ignoring what my body (and my babies for that matter) were trying to tell me. At that point I woke my husband and insisted that we call the on-call doctor. She instructed us to go to the hospital which we did immediately.

Once we got all settled in a birthing room, the nurses hooked up two monitors to my enormous stomach in order to monitor the heartbeat of both of my boys. Luckily both boys’ hearts were strong and steady. The concern came when Baby A’s heart was a little too steady. I know that might sound strange, but it’s true.

My boys had developed TTTS and Baby A was (in laymen’s terms) drowning in fluid. As a result, he had become despondent. Believe it or not, the doctor actually took an old style “ringer” telephone and held it close to my stomach in the area of Baby A’s head. Her goal was to see if she could startle him. She wanted to see if he would respond to outside stimulation. Well, the phone rang (literally) and there was no change in his heart rate. Our doctor quickly informed me, “we’re going to have two
birthdays today” which was her way of informing us that Baby A needed to be delivered quickly.

Sure enough, both of my boys were born within 30 minutes of our doctor’s diagnosis. Baby A was born with an APCAR score of 1. He was swollen on every part of his body and his weight dropped half a pound in the first 24 hours as all the excess fluid left his body. In fact, the nurses in the NICU affectionately called him “The Wizard” as his little body “processed” all that fluid out of his system. All that fluid had left him with diluted blood and he required a number of IV supplements to get the chemical balance back to normal in his blood. He also required Pressure Assisted Breathing (CPAB) & an oxygen tent for the first few days.

Our other son (Baby B) came out of the whole ordeal in pretty good shape. He was small and week, as babies typically are when delivered at 34 weeks. He was also given oxygen and monitored closely for the first few days in the NICU, but since he had always been the larger of the two, he seemed to handle the whole thing pretty well.

After 10 days in the NICU, my boys were released from the hospital. It was a truly glorious day for our family. We were so lucky to be coming home with two wonderful little baby boys. And no monitors and no special machines, just the thrill (and challenge) of welcoming our newest family members and helping our 4 year old son adjust to becoming the big brother of two!!

The whole experience was very humbling for my husband and me. I can’t help but think there was some sort of “guardian angel” watching over me and my boys that rainy night in November. We feel so blessed for the excellent medical care our boys received and there is just no way to repay that kind of generosity. So that’s why we are so excited to be involved with the Fetal Hope Foundation. We are so blessed, and we want to help other families be able to share their survivor stories as well.

It’s a wonderful way for us to thank God for how blessed we’ve been.

For more information regarding TTTS, please visit www.fetalhope.org/TTTS.htm.

[Sizzle Muffin]

My twins were born at full term. However, I started having major feeding issues with Brooklyn. She screamed at feeding time, hollered, cried, squirmed and basically just freaked out every single time I tried to put the bottle in her mouth. We discovered she had a milk intolerance due to a black stool she produced. I switched her to a Soy based formula, after going through several brands available, we settled on Nestle Alsoy. Very pricey.

Anyway, she had always "spit up" since birth and it was merely brushed off as just that, spit up. No biggie..babies spit up all the time. The spit up eventually became projectile vomitting. I continuously told their doctor that she was not just spitting up, she was 'exorcist, projectile vomitting' daily. My concerns were never addressed and simply, again brushed off by the doctor saying "She's gaining weight, so there isnt a problem"

My issue was never whether my child was gaining weight or not. That was clear as I was having to buy her clothes in bigger sizes as she grew. My issue was the fact that she is projectile vomitting at every feed, and I attributed her fussiness and freak outs at feeding time, to the fact that she knew she would vomit and it would hurt, obviously. Babies are not as stupid as some like to think they are.

I tried absolutely every bottle you can possibly buy in the stores. From the ones with vents, to curved ones, to Dr.Brown ones. Nothing worked. I tried every nipple, every feeding hold, burping her throughout the feeding.

I was so fed up. I had to put cereal in her bottle and cut X's into her nipples just so the majority of her formula would stay down.

I took her to the emergency room. Drastic I know, but I was at my wits end. I explained her symptoms from birth and I was told that she had every indicator of GERD/Reflux. I was prescribed a 4 month supply of liquid Zantac which I was to give her 1ml from the dropper twice a day. The moment we started her on Zantac at 6 months, yes, 6 months, she has not projectile vomitted once.

I was told by the ER doctor that Zantac may not reduce the amount of vomit, but it will reduce the amount of stomach acid and make the vomitting more comfortable, thus resulting in a less fussy baby at feeding time. And, it may reduce the vomit a bit, or entirely.

She spat up ocassionally at feedings for 1 month but it was just spit up. No spewing from the mouth and hitting the floor 3 feet away. Then it just stopped. She doesnt even spit up anymore. She stopped fussing at feedings a week into the Zantac.

Moral of the story is, if your concerns as a mother are not being heard or dealt with by your health care professional, seek a 2nd opinion, a 3rd, 4th etc however many it takes until you're satisfied.

Just thought I'd share my story :)

[Dixie Momma]

Alex and McKenzie were born at 35 wks 2 days and were very healthy other than both temporarily having low blood suger and a mild case of Anemia for Alex. (I did not have gestational diabetes, so we are not really sure why they had low blood sugars.)

Alex has reactive airway disease. When he was about 11 months old, I took him to the doctor with a strange "cough". I have an older son who had had experienced RAD before and this sounded very similar to that. It turned out I was right. Alex's RAD flares up usually at the changes of seasons, with the pollen counts rising. His worst time was in the Spring of 2004 when we had him on 2 inhalers and Singulair. Most of the time, Alex's RAD doesn't slow him down. In fact, it's even difficult to know when he is wheezing and when he's not because his "wheeze" is hard to hear. We now treat him as soon as symptoms start since I am becoming better in tune with hearing the wheeze. We keep the inhaler (Albuterol) on hand and use it as needed.

McKenzie battles reflux. She had always "spit up" as well. I really didn't concern myself with it because the doctor always showed her gaining height and weight and I knew she was outgrowing her clothes. I have an older child, too, who spit up like she did and the doctor kept telling me it was normal, so I figured McKenzie was the same as the older child. Well, after a fight with Rotavirus just after she turned 1, I noticed that even though the virus was gone, she was still puking every night. She'd be fine until I laid her down and almost as soon as she hit the bed, up it would come. It was literally an instantaneous reaction. I took her to her doctor and she put her on Prevacid for 3 months. After that 3 months, we were able to wean her off and she did well for about a year. Then, it flared up again. Our new pediatrician (we moved to a new state) recommended Maalox or Mylanta. After 3 months, again it seemed to get better. Then it came back with a vengeance about 6 months ago. We tried the Mylanta for 2 months and, seeing no improvement, we've started her back on Prevacid. The only time she's puked in the last 3 months was once when we were trying to wean her off the medication. The new pediatrician has stated that she has reflux but it is mild and that stomach viruses and such she picks up cause her reflux to flare up. We think she will eventually grow out of it.

All in all, I think they are very healthy and though technically born at 35 weeks, they don't seem to have any "complications" from being preterm.

[Sizzle Muffin]

(I did not have gestational diabetes, so we are not really sure why they had low blood sugars.)



Both mine had low blood sugar when they were born and I also did not have GD..thats odd. I didnt realize the two were connected (having GD and then the baby(ies) born with low blood sugar) Now I'm wondering why that it is too..:shrug

[twinsmomma4]

My boys were born at 33 weeks and both had reflux, we didnt find out until Dylan stopped breathing on us at 6 weeks. My husband did cpr on him and he was rushed to the hospital, we found out he had pnemonia which was caused by the reflux. Then Andrew had got bronchitis the same week, he also had reflux they were on meds for about a yr and cereal in their formula. Then at 3 months they both had hernia. Since then they have been fine except being a bit delayed on their speech.

[Loosey]

Kaya and Maddie were born at exactly 34 weeks due to marked evidence of (enter fancy schmancy medical term here) ...essentially it means the placentas had so much calcification on them they were no longer functioning and caused the babies to go into extreme distress. I had been on strict bedrest for 4 weeks due to PTL. They both have severe cases of reflux so the first few months of their lives were nothing but screaming, screaming, and more screaming. When they had their upper GIs to see if that was in fact the problem there were several doctors and interns in the room and with each baby there was a collective gasp as they had never seen (at least not in babies that small) such bad cases of reflux. Their GI doctor (god love that woman!) put them on prevacid and bethanechol (helps emtpy the stomach faster with no ill side effects commonly associated with Reglan). I can not even begin to tell you the turn around that took place with our girls! That doctor saved our sanity that's for sure! As hard as it was getting through that time, not knowing what to do to help them, it was nothing compared to what some have gone through and I am so thankful for that every day. Other than Maddie gasping for air one night (because of the reflux) when she was 3 weeks old (and warranting the need for both of us getting our first ride in the ambulance!) we've had no health issues other than a couple of colds. As far as developmental delays, we've definitely been meeting the milestones a little bit later, but I no longer chalk that up to them being premature...I think with Kaya she just likes to "perfect" things for awhile before she feels comfortable enough doing it all the time...like now, she takes a few steps, but then won't do it for awhile. She's on her way though. With Maddie it's a stubborn factor...she does it when she is ready and not a minute before. :wink I do think she likes to let her sister be the guinea pig though, she watches her intently for awhile before she tries things. She was about 6 1/2 months old before she rolled over and I was SOOO worried, but in the end, she just didn't feel like it yet and she has been that way with everything. :teehee