Special Babies' Stories

A place for moms and moms-to-be with special needs children to find support.

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Special Babies' Stories

Postby PixieB » Sat Feb 09, 2008 3:34 am

I thought I'd start a thread where we can each share the stories of our precious Special Needs babies, whatever their special differences are. Much like the Nursing Stories thread in the Breastfeeding forum, but this time sharing the joys and struggles of being a parent to a child with additional needs. I'll see about making this a sticky thread too.
Talia Grace: born Friday 13th of July, 2007, at 27w4d gestation, 700g/1.5lbs. Nursed for 4 years
and Violet Joy: born Thursday 19th, VBAC waterbirth, 39w2d, 3.35kg/7lbs 6oz, still a booby monster, just shared it with her big sister for 18 months.
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Postby PixieB » Sat Feb 09, 2008 4:13 am

Talia Grace's story

All through my pregnancy my baby was known as Button, and we didn't want to find out the gender until they were born. I had dreams of a natural birth in a birth centre with a dedicated midwife, and got as close to the opposite of that as I could go.

At 24 weeks even I started getting bleeds thanks to placenta previa. After being in and out of hospital with these bleeds, at 27 weeks I got a bad bleed and I was admitted to hospital for the rest of the pregnancy. I was to get u/s every two weeks to monitor the baby, and my blood pressure was starting to creep up. On the morning of Friday the 13th of July 2007 (Black Friday) I had the first of these ultrasounds, and the sonographer said in a soft voice (with a European accent I would have loved any other day) "This baby hasn't grown very much, I think they may have to be born very soon." She gave me a printout photo of my baby's profile from the u/s. That photo is the first in Talia's photo album.

1pm that day I was told I was on nil by mouth, then by 4pm we were in the absolute chaos of preparations for a c-section. My blood pressure was up rather high, they were suspecting pre-eclampsia, the baby's heartrate was regularly dropping, the placenta wasn't getting full pulses through to my baby, and she was significantly undersized for her gestation.

My local hospital has a NICU, but it was full. The first NICU bed to come available was abotu 6 hours drive from home. The next one to come available was 3 hours drive away. With either of those DH might not have been able to travel with me in the plane, and could have missed the birth. Oddly thankfully the doctor was looking at the CTG trace they had me on in the last hour whilst they were prepping the plane, and decided my baby wasn't worth risking the flight for and they'd have to be born here.

Talia Grace was born by c-section (I was under a general anaesthetic for the birth and DH wasn't allowed in the theatre because of it) at 6:25pm on Friday the 13th of July, at 27 weeks and 4 days gestation. 3 months early. She weighed 700g/ 1.5lbs, was 31.5cm long, and her head circumference was 22.5cm. She was about the size of a 24 weeker. I have a huge ugly scar running up my belly because they thought they might have to do a classic c-section with her being as small as she was, thankfully they were able to do the horizontal incision on the inside so I may be able to have a natural birth with my next child.

It was 14 hours before I got to meet my baby girl. I kept waking wondering what the time was, and fearful that my baby would die before I'd get the chance to see her.

She was intubated for a little under a day, then on CPAP for 7 1/2 long weeks, which was enough to class her as having Chronic Lung Disease. She had PDA but it closed with the medication they were using. She got two blood transfusions, the first thanks to so many blood tests, and the second due to her not coping so well with a low haemoglobin level. She was on the low flow oxygen, and eventually the micro flow up until 2 days before she came home.

We got our first cuddle on day 4. The nurse's name was Julie and I was stunned when she offered having a cuddle, though I leapt at the opportunity. A kinda funny cuddle really though, given I was sitting on a recliner and Julie picked up the mattress from the isolette, complete with baby and monitors and leads and CPAP, and let me cuddle the mattress with an extra blanket over top. Talia had one hand barely peeking out, and I could see about 1/3 of her face.

Our first skin to skin Kangaroo cuddle was on day 9, and I remember this light fluttery nothing of a baby being rested against my skin, she was so light I could barely feel her.

I was expressing milk for her every three hours, and it contributed hugely to her ability to thrive. She continued to gain weight, and somehow just glided through all the things which could go wrong. So many three letter acronyms which she avoided: PDA closed, no ROP, no NEC, no brain bleeds or infections, no surgeries. Just my scrawny little monkey imp cruising through life as a baby in a box. At 1 1/2 months old we finally got to try breastfeeding, it was Father's Day here in Australia, and the best present either of us could have gotten.

Overall it wasn't easy. I went into the hospital almost every day. I had many conversations with other NICU mums sitting in the expressing room hooked up to pumps. I made little cards with the children's names in calligraphy to stick to each of the cribs in the NICU, special keepsakes for such a difficult time. I crashed badly when Talia was transferred from the NICU to the SCN in another hospital. That was just horrid for so many reasons I won't go into now.

At 9 weeks old we got to give Talia her first bath, and took her for her first walk in the pram, trundling along with an oxygen cylinder in the basket beneath the hospital's pram. 2 days before she came home she pulled out her NG tube, so they decided to see how she'd go on full suck feeds. We've been tube free ever since. :)

2 days before Talia's due date, after 85 days in hospital, October the 6th 2007, we finally got to take our baby girl home. That was a fabulous feeling, finally getting to be her parents, and not having to ask permission from anyone first. The morning she came home she weighed 2.53kg.

Since then she's continued to thrive. No complications, she's still petite, still fits her 0000 clothes, but I kinda like that. She's full of gummy smiles, occasionally accidentally rolling from her tummy to her back, loves splashing in the bath, and has just discovered the joy of jumping whilst held upright. We've got lots of ongoing medical monitoring to be on the safe side, but she's really doing beautifully well.

See photos of her journey at:
http://pics.livejournal.com/littlebutton07/
http://pics.livejournal.com/littlebutto ... top&page=2
Talia Grace: born Friday 13th of July, 2007, at 27w4d gestation, 700g/1.5lbs. Nursed for 4 years
and Violet Joy: born Thursday 19th, VBAC waterbirth, 39w2d, 3.35kg/7lbs 6oz, still a booby monster, just shared it with her big sister for 18 months.
http://pics.livejournal.com/littlebutto ... y/0000scpq
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Postby mamalynn » Wed Mar 05, 2008 12:11 pm

that is a moving story! thanks for sharing! :D how is talia these days?
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Postby irishsweetie2003 » Mon Nov 24, 2008 12:35 pm

My story is still continuing... When Matt finally comes home from NICU I will share his story. i did have a 29 1/2 weeker born who had a level 3 cerebral hemorage, fluid ont he brain, an infection, and stayed on a ventilator for about 2 weeks. He's a healthy 8 year old today.
Matt, didn't get any brain bleeds, infections or anything like that, but being born at 28 1/2 weeks payed it's toll on his lungs. They were too premature to be working so hard, so they tore and leeked air into his chest (nemothorax). This cause pressure on his lung and it collapsed. They reinflated it, but it's ery weak still. he's now 2 weeks and 2 days old and still on a vent. we just start a steriodal treatment in hopes of getting him off the vent.. I hope it works. I pump too... God do i pump. it's the only thing I can do, especially sense we live 2 hours away fromt he hospital he has to stay in... We can't visit everyday... So, i pump...
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Postby mom2abandkb » Thu Sep 23, 2010 5:12 am

Kiran was born 10 weeks early and spent 130 days in the NICU. She had many complications, thankfully only one was respiratory only when she had her hernia surgery. She had so much trouble tolerating her feeds that she would go back and forth from pump feeds, to TPN and IV NPO, then back to full feeds, etc. She had 3 hernias fixed and was intubated for the surgery. After she was extubated they sampled it and found that she had serratia, an infection that can travel to the blood, in her trachea. Thankfully, it just stayed in her trachea, and with a hefty dose of two antibiotics she got rid of it.

She has ptosis (lazy eyelid) in her right eye and we don't know if it affects her eye also, has severe reflux classified as GERD, has hypotonia (low muscle tone) and is taking longer to do everything like crawling, etc, and takes meds 7x a day and has a G tube in her belly because she has oral aversions to food and formula.

She has had two hospital stints this year, one for parainfluenza (4 days) and one for gasteroenteritis (5 days), and then 2 more for a G/J tube insertion with complications, and then another 2 days after the G/J was removed due to possible perforation and a G tube placed. She has had every test imaginable for her GI symptoms. The PH test came back grossly abnormal and she refluxed over 370 times in less than a 24 hr period and her PH level was high I believe without any meds.

She is working with a physical therapist once a week and a speech therapist twice a week to help with the food aversions.

She has always been tiny. She is basically the size of a 6 months old at about 17 pounds and 28 inches and she is 13 months. Her weight is in less than one percentile.

Our struggle with her GERD, food aversions, hypotonia continue. Her GERD is controlled with all the medication. We are working on her eating chunky food now and she is also pulling herself up to stand and cruise the furniture. She babbles endlessly and loves her sister to death!

I gavage or pump feed her at least once a days because she will get dehydrated because she doesn't drink enough. She never finishes even a 5oz bottle. At night I pump feed her about 14oz just to get her to gain weight and make up for what she didn't drink during the day.

So that's Kiran.
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Hernia surgery 11/5/09,G tube 7/24/10
130 days NICU- reflux,hypotonia,ptosis,2 meds 2x/day
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Postby BrandyJ. » Sun Oct 03, 2010 7:03 pm

I woke up in the middle of the night thinking my water had broken. It was not a happy thought considering I was 25 5/7 weeks pregnant. I ran to the bathroom only to discover that the wetness was not water, but worse..blood. I had had a major hemorrhage. I had been told at 20 weeks U/S that I had a low-lying placenta and not to worry because 90% of the time it would correct itself...Lucky me!

I went to the hospital and was admited for observation. I had sonograms, lab work, more sonograms.. I had a second hemorrhage 6 days later. I was just praying praying praying that we'd at least make it to 27 weeks.

I remained in the hospital the remainder of the pregnancy. I had 2 children at home and was a good distance away. I was depressed, lonely, angry...etc.

I had another bleed at 28 weeks and my doctor told me at that point that with the next bleed that he'd be forced to take the baby. The bleeds were so bad that I'd soak my sheets and the floor!

4 weeks go by..NOTHING.. I'm begging , pleading to go home, the placenta had corrected almost completely to be sent home safely. I thought I was going home. I was scanned one last time and a new discovery I had polyhydramnios and I hemorrhaged the next day and had a placenta abruption. Cyrus was delivered via emergency C-section.

Cyrus weighed a whopping 4 pounds, but the doctor said it was extra fluid. He really ended up weighing 3 pounds and 3 ounces. Cyrus had to intubated after he was born... not very common for his gestation. We were worried but confident everything would be ok. The next morning the doctor called my hospital room to tell me that Cyrus had a seizure. They did a head ultrasound and was diagnosed with a grade I-II brain bleed. Things were never right after that.

Cyrus had many many apneic spells with hundreds of resucitations and intubations. After 7 weeks at this hospital we asked to be transfered. We were transferred to Children's Milwaukee. No one knew what was wrong with him. He has a swallow study and upper GI and was diagnosed with SEVERE reflux and silent aspirations. He was having laryngospasms with refluxing.

We then placed a NJ tube. A tube that was placed down his nose to his intestines, by passing his stomach all together.. nothing to reflux, right? A few days later he became gravely ill. He was diagnosed with Group B Strep meningitis. He nearly died. We sat by his bedside not knowing what the next breath would bring.

He fought through the meningitis and remained stroke free..he was goign to live!! The NJ tube had worked decently. We then had a GJ tube placed.. a more permanent solution so we could go home. The GJ was a disaster! The nurses fed him through the wrong port and he had milk coming through his nose! the milk was supposed to be delivered to his intestines..no where near his nose! It was a HUGE disaster for many reasons, but the most important reason is Cyrus's heart rate dropped to 20 and his oxygen sats were 8%...yes, a near death experience yet again.

We fixed the feeding through the wrong port issue and managed to go home. Sadly, it only lasted for 4 days. Cyrus was readmitted for another month. During that month he had a Nissen fundoplycation to tie his stomach up so he can't reflux any more and need constant oxygen and resucitations. It was a success. We finally got to go home after a total of 6 months.

Cyrus was following up with all of his doctors and diagnosed with a condition called benign axial hydrocephalus.. a fancy word for a big head. A somewhat common occurence and is hereditary. But, because of his past history of brain bleed and meningitis we had to follow him carefully.

3 months later, Cyrus was diagnosed with true hydrocephalus. His head circumfrence jumped like crazy and his ventricles are doubled in size. He needs a shunt placement sooner rather than later. Fortunately, it isn't an immediate emergency and we have a few days to prepare our other children and lives for a his surgery.

I'm so scared.. for everything.. his life, quality of life, prognosis, .. it is a temporary fix to a permanent problem. He could have multiple multiple shunt replacements due to malfunction and/or infection.

he is such a happy boy. Meeting milestones, making leaps and bounds.. more than we could ever hope for...to be broadsided by this diagnosis is almost too much.

I'll keep you posted..thank you for listening.

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brandy
Me-38 DH-32 DD#1 (12), DD#2(3), DS (16 months/14 adjusted)
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Postby betafish25 » Sun Oct 10, 2010 2:06 pm

Brandy bless you and your family for all that you have Been through. I pray that your sons surgery goes well and that he has no complications from this. Please keep us posted on his progress. I too have a son who spent 106 days in the NICU and has to date had 7 surgeries and is due to have another one on the 21st. He is also listed for a liver transplant which is the most life threatening of them all.
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