On the rollercoaster

The urologist we saw, mentioned that Boeboe may be very constipated, and would need a clean-out. So we took her to the pead in Dec 2009. She took x-rays and said that she indeed is impacted and prescribed movicol (miralex) to clear her out. We put Boeboe in pull-ups and gave her massive doses. It worked well. Almost too well. It was a huge mess. This didn't stop either the urinary or the feacal accidents. The oxybutynin didn't help at all either, it just caused major constipation again, horrible hallucinations and headaches.

Beginning January 2010, we took Boeboe to her orthopeadic surgeon for her yearly checkup. He diagnosed her at age 5 with a few small leg and foot deformities. Nothing serious and still "within normal limits for her age" so he just kept an eye on it. Her left foot had a toe-in, both feet had high arches, her left hip came out at a tiny bit higher angle than it should and her left leg was a tiny bit shorter than the right. On her checkup in January, he said she is doing well, but he was still worried about her issues, so he sent her for an MRI of the brain and lower back.

The MRI's were clear!!! We were grateful and thankful, but puzzled. Everyone, the pead, the ortho and us all thought she had a tethered cord. It would've explained everything. The bladder, the bowels, the constipation, the foot problems, everything.

We didn't know what to do next, so the pead and ortho both referred us to different pediatric neurologists. We went to both of them. The first one laughed at us. He said except for ADD, there's nothing wrong with our daughter. That she certainly was just naughty for weeing in her pants, and that she's lying when she says she can't feel her bowels move. And that I'm enabling her by cleaning her up (WTF?!?!?!). When I mentioned that I can't get an anal wink from her, he laughed (again!) and basically told me to my face, that I'm lying. We walked out of the appointment shocked, hurt, confused and extremely upset. And even more determined than ever to find out what was wrong with our daughter. For not a single moment did we think the neurologist was right. What hurt the most, was that there was a time we DID think she was lying. When she was age 4. But now, at age 6, we've passed that point and knew there was something physically wrong with her.

The 2nd neurologist was much kinder. She did a thorough evaluation, and said that there was just small ADD signs, nothing to worry about (yet). She also couldn't find anything "wrong" with Boeboe, so she phoned a nephrologist friend of hers, who said we must immediately go for a urodynamic study.

This was pure torture.

I lied on her chest, pinning her down, while she screamed blue murder. The bladder spasms continued to press the catheter out, so the nurse had to try so many, many times. And every time it hurt just terribly. But, the test was invaluable, and I'm glad we've done it. The nurse told me immediately after the test, that there was definitely something very wrong with the bladder. It's non-compliant and obstructed, and showed pressures of 110. Apparently sky-high. She gave me the name of a good urologist we should see, so I made an appointment.

The appointment was in March, and the urologist explained the urodynamic test to us. He said she had an uninhibited neurogenic bladder. He explained that when you're a baby, your bladder contracts continuously, expelling urine. That's why babies need diapers. Around age 2, the brain matures and starts to send signals to the S2-4 vertebrae nerves to stop the bladder contractions long enough for the bladder to fill itself to age appropriate volumes (250ml in Boeboe's case). Then only should it contract, when going to a loo with a full bladder. With Boeboe, the bladder started to fill normally and at 30ml already it contracted. At 50ml the contractions were so severe, she was unable to keep it closed. Somewhere along her spine, the signals from the brain to "inhibit" the contractions, got lost. I wasn't getting to the bladder, so the bladder reacts the same as a baby's bladder. The most probable cause is a spinal injury, acquired or congenital (like spina bifida, tethered cord, etc.). The urologist put us on another type of medication, oxybutynin immediate release, and sent us to a neurosurgeon for an evaluation.

The neurosurgeon was kind, soft-spoken and friendly. He told us that her MRI's really was clean, there's nothing he could see that could cause her problems. He said he doesn't believe in a tight filum, especially if it's not seen on MRI. I asked him about this, because in my research I read that sometimes tethered cord was caused by a thickened or tight filum, causing the same symptoms as what Boeboe had. He sent her for an upper thoracic MRI scan, to check for syrinxes or something else that could be at the root of the problem. Again, this MRI came back clear, except for a very vague signal loss in the upper cord. Maybe the beginning of a syrinx? I don't know.

The neurosurgeon said he couldn't do anything more for us. So back we went to the urologist. I told him that the medication made no difference to Boeboe's accidents, so what now. He said her pressures are just too high for medication to work. Her bladder pressure reached 110cm while in a normal bladder, it reaches around 20, maybe 40 when you urinate. In a damaged bladder, it could go as high as 50, causing reflux to the kidneys. Boeboe's was 110!!! He sent her for another VCUG scan, which again was torture. I think he couldn't believe that she didn't have VUG, with such high pressures. They again catheterised her, and this time 3 women had to pin her down, while a 4th, a dr, had to perform the test. The x-rays showed diverticuli and trabeculations, and a narrowed Christmas tree shape bladder neck. This pointed, again, to a neurogenic bladder. A bladder that does not get the signals from the nerves. Fortunately, again it did not show any renal reflux (urine pushed into the kidneys).

The urologist told us that he unfortunately couldn't help her any more. That shocked me. We were beyond help? What now...

He referred us to his colleague, dr W.

To be continued... (in June 2010 posts): http://roadtosanmichele.blogspot.com/2010/06/dr-w-was-very-very-kind-and-is-great.html

The long road begins...

Boeboe age 6

So when Boeboe was 6 years old, and the wee and pooh accidents kept on happening, and was even getting worse, I took her to a urologist for the first time. Her first words to me was: “This is NOT your child’s fault. It’s NOT in her control.” Those words hit me hard. I used to think it is in her control. That she’s doing it because she’s too lazy to run, or because she’s too engrossed in play and doesn’t want to interrupt it. Especially because it so rarely happened during the mornings at school (she went from 7:30am until 12:45). But the urologist explained to me that because she’s 6 already, she knows that dehydrating herself would mean less accidents. So she doesn’t drink much at school. She also would use every ounce of energy, power and concentration she could muster, to keep from having an accident at school. Because she felt safe at home, and couldn't keep that up 24/7, she would lose control in the afternoons and evenings.

My poor, poor daughter. I never realised how hard, and how awful this was for her. She was just a little girl with a problem and I wasn’t helping her. The urologist did a thorough examination, also of her back. She said that she has a shallow, triangular dimple. Very shallow and very big. With lots of fine little hair over it. Which could possibly be a sign of spina bifida occulta (occulta means hidden). I was extremely surprised. The urologist also said her bladder wall was thickened and though her kidneys looked fine, there may possibly be reflux from the bladder into the kidneys. Called Vesicoureteral Reflux (VUR). This is when the pressure in the bladder causes old urine to back up into the ureters and even into the kidneys. This can be damaging to her kidneys.

She proposed we do a cystoscopy, because she also suspects a narrowed urethra which would need to be dilated. She believed this may be the cause of the accidents.

The cystoscopy was booked for 2 weeks later. I was extremely nervous as it would be done under anaesthesia. Before the procedure, they gave Boeboe dormicum. This caused her to become extremely relaxed, happy and over imaginative! It was hilarious. :-) She would sit up in the bed, and talk to every nurse, every porter, every other patient she’d see. She’d make jokes and laughed and thought we were so funny. She said we all have 4 eyes and two noses and two mouths. :-) It broke some of me and my husband’s nervousness to laugh at her antics. When they came to fetch her, me and “Sannie”, her doll, went in with her. I stayed until the gas took effect, then left the theatre. Less than half an hour later, they wheeled her out. She was groggy, but not crying. She was even smiling at me!

It was a bit painful in the beginning for her, but soon she was herself again, and released from hospital. At her check-up a week later, the urologist was sad to hear that dilating the urethra didn’t make much of a difference. She was still having accidents! She told me that there was fortunately no sign of VUR (kidney reflux), but the bladder looked horrible. She showed me a picture. It wasn’t yellow and smooth, but pink with angry red sores everywhere and trabeculations (little bumps and knobs) everywhere. It looked painful. She prescribed an anti-cholinergic drug, oxybutynin, as well as an antibiotic for 3 months. And told us to go see a neurologist to rule out Spina Bifida Occulta.

To be continued…

Pottytraining

 I potty trained my first son, Mr N, when he was a month shy from age 3. It took about 6 days for him to “get it”. Only the wee. For pooh, it took him 2 weeks, and many many tears and frustrations on both me and his side. And many continuous accidents for the year there after. Nearly never wee accidents. Only pooh accidents. I believe that I trained him just a bit too early. I did it before he was ready.

Boeboe age 3y2m

So with Boeboe, I decided to wait until she’s ready. When she was 3 years and 2 months, and it was summer, I decided it’s a good time to potty train her. We started on the Saturday. When she woke up, I put a panty on her and she was extremely excited about the whole event. Soon there was an accident, and I started to train her in all earnestly. It went very well. She had 6 wee accidents. On Sunday, she loved hurrying to the potty, and only had 2 wee accidents. So far, she had no bowel movement. She was always a bit constipated, since her birth, so it was nothing strange. On Monday, she had no wee accidents. She ran like a pro to the potty every time out of her own accord. But around lunchtime, she had a pooh accident. It scared her so much, she cried. I cleaned her up, explained to her what happened and how she should run to the potty next time. It worked! It was her one and only pooh accident during potty training. I couldn’t be happier or prouder. Only 3 days to potty train a child completely!! Whoohoo!!! She was even dry at night, so we packed all nappies away and thought that part of our lives were over with.

How wrong were we…

A few days later, she had a wee accident. I made no big deal of it. Afterall, she wasn’t even potty trained for a week. When it happened again a few days later, I though “uh-oh”, we’re not as home free as we thought. But I guess it’s understandable for a 3-year old to have wee accidents. She was probably too engrossed in play to notice the urge.

This continued for about 6 months. She’d have a couple of accidents a week during the day. Nearly never at night. Only about once every 3 or 4 months. She’d never have pooh accidents either. Just this persistent wee accidents every now and then.

In the beginning I didn’t mind, and I didn’t make a big deal out of it. I never scolded her, though I would on occasion frown and tell her she must please run in time. At age 3 and a half, the accidents got more. It wasn’t once or twice a week anymore. Rather 3 or 4 times a week, sometimes a couple of times a day. I got tired of it and started to scold her. I tried different disciplining methods. Nothing worked.

Then, when she was just past age 4, she had a pooh accident. For more than a year, she never had a pooh accident. And now, suddenly out of the blue, she did. I was so surprised, I just cleaned her up and then forgot about it. Until it happened again. And again. And again. Some weeks there would be nothing. Other times there’d be 3 accidents or 5 or even 10. It had no pattern. The only thing is that at playschool (which she attended 3 mornings a week), it would not happen. She’d sometimes have wee accidents, but nearly never a pooh accident. Which caused me to believe it was under her control. I got angry. But it didn’t make a difference. I tried reasoning with her. I asked her why it’s happening, but she couldn’t answer me except that she “doesn’t feel it coming”.

Boeboe age 5 (with baby brother)

I was hands in the hair. At age 5, I took her to a play therapyst and a phsycologist. Both ruled out any behaviour problem or something terrible like molestation. The play therapyst did some months of therapy with Boeboe, and coached her to stop the accidents. When this failed, she told me that something physical must be wrong. This was the first child she’s seen for whom therapy has failed to stop the accidents.

So, I took her to the pediatrician. Firstly also because of some leg problem we noticed. But that’s a whole other story. While we were there, I asked the pediatrician about her accidents, and she did a quick examination and told me Boeboe is just naughty and need some strong disciplining. She did take a sample of her urine, and phoned me with the results. There was an E.Coli infection. She didn’t have any symptoms, but I decided to take the antibiotics the pediatrician suggested. But it made no difference to the wee accidents. Some weeks would be good, some would be horrible.

At age 6, I decided she’s now really old enough, and she would soon be starting grade 1. It cannot continue like this. So I took her to a urologist.

To be continued…

Baby Days, Sleep Apnea and GERD

In the beginning, Boeboe slept allot. I had to wake her every hour to feed her. She was 2.4kg when she was released from hospital. Too small to be fed every 3 hours (without the IV to sustain her). I took her temperature every 30 minutes during the first few days. She was cold, but just borderline where I needed to take her back to the hospital. My instinct kept telling me she’s fine. After two weeks, she started to keep her temperature up. I started breathing. I stopped waking her at night every hour, and let her find her own routine. She breastfed about 21 times out of 24 hours. Boeboe was still very yellow. At 9 weeks, I had to subject her to a blood test again. Mr N got very upset and I had to console two crying babies. The blood test showed that she had the same liver disease that me, her daddy and Mr N have. Gilbert’s disease. It’s not a dangerous, life threatening disease. Our livers just struggle to release enough of the enzyme necessary to break down bilirubin in our blood. It turns us yellow, like jaundice.

Look at how yellow Boeboe is (here with Mr N)

Boeboe slept and fed. That’s all. She didn’t interact with us at all. I started to worry, but at just past 9 weeks, she smiled…:-) Shortly thereafter she laughed at the tinkling butterfly above her bath. We sighed in relief. There didn’t seem to be any brain damage because of the dying placenta.

One morning, at precisely 2 months of age, Boeboe was in her basket, fast asleep. I was in the kitchen eating breakfast when the sleep apnea alarm went off. I bought the alarm with Mr N’s birth. It was both a breathing and sound monitor. So once Boeboe came home, she slept on this monitor at night. And now it was screaming.

I ran to her crib, and she was stretching leisurely. Wide awake and friendly. I sighed in relief, my heart still bouncing in my throat.

Two days later, it happened again. This time it was 2 o’clock at night. She was lying dead still, not moving at all. I put my hand on her stomach, and she woke up with a start. She was white in the face, but breathing.

A few days later, it happened again. At 9am. It kept happening. Anything from 2am to 9am. It happened once or twice a night, 2-3 times a week. Sometimes she'd wake from the alarm, sometimes she'd be blue or gray in the face and only woke once I picked her up. We got stressed and tried to read everything we could about SIDS. The pead said she didn’t know why it happened, but we must never ever let her sleep on anything other than the breathing monitor. She believed it had saved her life.

At age 4 months, the apnea attacks stopped as suddenly as it began. For 2 months I went through hell. And now it was over. For 2 months, I could barely sleep. After every feed at night, I would cuddle her and put her down in her crib, on the monitor, with a heavy heart. I’d kiss her forehead and wonder if I’ll ever see her alive again. If this would be the last kiss she’ll feel from her mommy. If there will be another attack. If she won’t wake up from the next one. I laid awake, staring at the blinking green light that flickered with every breath she took.

Slowly me and daddy started to heal. Slowly, we accepted that the attacks have stopped. That we don’t have to fear anymore. Slowly we got rid of the stress we were living under.

Boeboe was a tiny, tiny baby. She was around the 3rd percentile on her growth chart. At age 1, she weighed 7.5kg. At 18 months, she weighed 8.3kg. She was still on the 50th percentile for her length, but her head was a little on the small side.

But overall she was doing well. She rolled over at age 4 months. She started to look around and reacted to her environment. She slept less and fed less. She didn’t want to sit, so we did physical therapy and at 8 months she sat alone. At 91/2 months she crawled on her stomach. Me and hubby went out for the night for the first time since her birth. Her granny watched her and Mr N for the evening. When I got home, she noticed me and got so excited to get to me, that she pulled herself forward by her arms. My love for her at that moment had no boundaries!

Then I fell ill. I had one infection after the next. Tonsillitis, farangitis, bronchitis, etc. Even Epstein Barr/glandular fever. It was a tough time in our lives. We knew something was wrong. Everyone suspected it was the breastfeeding, but I refused to believe that. Boeboe needed it. With her apnea history, I was desperate to keep her on breastmilk until age 2. I got better slowly, and Boeboe turned one. She has been crawling since 10 months (leopard crawling) and on all fours a little later. Mr N was also getting big then. He adored his sister, and she loved him completely. They played together every day. He never hurt her intentionally and felt awful when he got a bit too rough with her and she cried. He helped me with everything I asked, and kept quiet when she was sleeping.

When boeboe turned 15 months, the apnea alarm went off again. It happened again and again. We were so sad. And very worried. The good news was that she started walking at 14 months. Very unsure and wobbly, but we were proud none the less.

I fell ill again. This time I sat crying in the doctor’s office. Told her I can’t take it anymore. I’m a stay at home mom (SAHM) and I couldn't afford to be ill so much. The doctor referred me to an internist. A specialist. He did test after test after test. It came back with 3 problems. The one was that some receptors in my brain didn’t register changes in my body quick enough, which caused my dizzy spells. The second problem was that my Gilbert’s disease was confirmed. And for the third problem he wanted me to see a gastro-enterologist.

The GE did a gastroscopy and colonoscopy and confirmed the IBS (irritable bowel syndrome) I knew I had, and diagnosed me with GERD (gastric oesophageal reflux disease). He said the valve between my stomach and oesophagus didn’t work at all. It explained why I was nauseous all my life. Why I was always ill with throat infections. Why I couldn’t tolerate certain foods or drinks. Why I had problems swallowing, especially pills and dry food. Why I woke up every morning with a sore throat. It wasn’t post-nasal drip like previous doctors diagnosed.

I told the GE about Boeboe’s sleep apnea attacks, and he confirmed my fears. It could be silent reflux. Even though she rarely vomited. We both got tubes pushed down our throats to do a 24h ph-balance study of the contents in our oesophagus’s. It’s hell. Boeboe screamed and I felt horrible. She went through this 18 months ago. How can I put her through it again? What kind of mother am I?

Boeboe looked rather cute with the little computer hanging from her tiny frame. She left it alone. Didn’t press the buttons. Didn’t pull the tube out of her nose. I was relieved.

Our results came back. I had a count of 31 (it has to be under 14). It’s reflux. GERD. I also only have 20% swallowing function left. No wonder I struggled so much!

Boeboe’s count was sky-high at 75!!! The highest the doctor has ever seen in such a young child. He believed it definitely explained her sleep apnea. Why hasn’t the pead mentioned this as a possibility?

Her reflux was especially bad between 1am and 6am accordingly to the results. It explained why her apnea episodes were always in the early morning hours. We both got put on medication to control the amount of acid in our stomachs.

I requested that my son, Mr N also got tested because of his dietary issues. He was 4, old enough for a gastroscopy with PH study.

The results were that his valve was also not working at all. His ph count was 28, and he too got put on medication. Suddenly his eating improved and he started to pick up weight. His bony shoulders got a bit rounder.

Boeboe slept better, looked healthier and had more energy. And after another month of being on the meds, her apnea attacks stopped completely! Never to return again.

My throat wasn’t sore anymore every morning when I woke up. I didn’t get ill anymore. I felt healthy and better than I felt in all of my 30 years. Life was good.

Pregnancy and Birth VIII

Mr N cried hysterically when we wanted to leave on Tuesday morning. I couldn’t take it, and asked mother-in-law (MIL) to come along to the hospital with us and Mr N. Mr N settled down immediately. We looked through the glass door to show Mr N his sister, but her little crib was empty. My heart stood still. The seconds ticked by in slow motion. I couldn’t move. I couldn’t breath. Blood pounded into my head. It can’t be. We phoned them earlier and she was doing fine. She had a good night! What happened? My husband went in. And called me. She was moved to the back of the NICU. She wasn't the most critical baby anymore. She was doing well! Next to her was a 1.2kg 29-weeker baby. She was doing better than our daughter. Her mom had steroid injections before her birth. I was jealous.

Boeboe got weaned from the CPAP oxygen machine, and was put on normal oxygen through a little pipe in front of the nose. She got more milk, and was given a bottle.

But she vomited it all up and were put back on the gastric tube. It was a long day for Mr N and his grandma at the hospital. My husband took them home, and fetched me later. Our daughter was doing so well.

I was asked if I wanted to breastfeed Boeboe on the Wednesday, day 7. She latched immediately, and drank like a pro. I held her gratefully in my arms. She only drank 30ml, so another 20ml was fed to her through the gastric tube.

Boeboe was incapable of keeping her own temperature up. The heater above her was keeping her alive.

Mr N was having a hard time at home without his mom. We decided that daddy will spend Thursday with him at home. First he took me to the hospital and then went back home after saying hello to his daughter. I sat next to her the whole day. Holding her hand. I read a magazine, but couldn’t consentrate. I breastfed her every three hours. I got a chance to bathe her for the first time. Her IV line was taken off permanently, and all the other wires and tubes temporarily. I touched every arm, every leg, every cm of skin. I looked at her from head to toes for the first time. I counted her toes and touched her nose. I kissed her soft black head and breathed her smell in. She loved the warm water. She lied still, eyes open. She didn’t cry.

That night I felt much more contend. Though it made me depressed that the one nurse said no baby would leave the NICU before the weekend. She laughed at me, like it was the most ridiculous notion. On Friday morning my husband dropped me again at the hospital and came to say hello to his daughter. The doctor was there, and told us it was going very well with her. I asked if it’s going well enough to be taken home? She looked at me for a long time and asked if we’ll look after her and keep her temperature up. I promised, my heart in my throat. The doctor picked up her pen and wrote: Released on her file. I smiled from ear to ear, and asked if I can dress her. My husband went to fetch the car seat and her bag of clothes, which we kept in the car with such high hopes every day.

A nurse came to give Boeboe’s first innoculation. It was sore and she cried. I picked her up and cuddled her. She stopped crying. It felt good.

I dressed her warmly, put her in the car seat and tuck some blankets around her tiny body. Suddenly, my throat closed up. Here she was safe. She had every electronic monitoring device possible hooked up to her. Help was close by. People who knew what to do, were watching her. The nurse noticed my reluctance and encouraged me. She’s young and friendly and sad to see Boeboe go. She told us we must relax, and trust our instincts. We did attend the CPR course through the NICU (given mandatory to all NICU parents). She told us to enjoy our daughter. Her words recovered my confidence. I decided that that’s precisely what we’re going to do. Enjoy our daughter.

When we got home, Mr N was gone. He left for the shops with his granny. We put a sleeping Boeboe in front of us and sat down on the couch, looking at her. She was home. Where she belonged.

Mr N’s whole face lit up when he got home and saw his sister.

He bounced up and down with happiness, having his sister home. He loved her so much. She’s beautiful, he said, even though there was a bald spot on her head, scars on her arms, ankles and head from all the needles. She lives, she’s beautiful, and she’s ours!!!

To be continued…

Pregnancy and Birth VII

On Sunday morning, day 4, I was released from hospital. But I decided to lodge in the hospital to be close to Boeboe. I couldn't bear the thought of going home without her. It’s going so well with her, that she’s being given 1ml of expressed breastmilk every 4 hours. It broke my heart, though. She was extremely hungry, and 1ml did nothing for her. But she still had those strange gasses in her stomach and bile coming out, they couldn't afford to give her too much. All the grannies comes to visit. They’re allowed inside NICU on Sundays. They didn’t stay long, you could see it was too difficult for them. They’re not used to today’s technology. Seeing a baby on beeping monitors and tubes, wires and needles coming out from every orifice and extremity.

Some other family members visit, and we sat and chat in one of the sittingrooms. It lifted my spirits. Everyone was happy and Mr N played with his cousin as if nothing was wrong. I felt normal and alive, until I went to stand next to my daughter’s crib once everyone left. Her arm was swollen and yellow and looked extremely painful. The IV line went into the muscle. They had to move the drip into her head. There were no veins available anymore in her arms or legs. Her beautiful, black hair has been shaved off in the front. It pained me and I wanted to cry. They didn’t even save some of the hair for me to keep.

But she was alive. She was fighting. And she was healing. She was getting stronger and stronger. Our little Mcguyver. She didn't sleep every moment anymore. She loved her dummy and sucked it constantly.

On Monday morning the pediatrician told us she was recovering beautifully, and that they could give her more milk. She was getting 10-20 ml. It went well. They gave it through a gastric tube. They wanted to chase me out each time, but I refused. Once they pushed it in through the nose and it came out her mouth. With blood. I felt like fainting. She screamed and screamed.

She loved the milk. I was expressing way too much, but at least she was drinking some now. She had jaundice, and the lights were put above her bed. She had a big mask over her eyes to protect them from the UV light. Between the mask, the plasters, the tubes and the wires, you couldn't see much of her face.

I started to get depressed. Next to me a mommy came in with her newborn baby and all the family visited and laughed and celebrated. I cried and phoned my husband. I couldn't take it any longer. He said he’s coming. We went to Boeboe, and said goodbye. It broke my heart, but I needed to do this for me. It felt like a huge weight rolled off my shoulders when I left the hospital with my husband, hand in hand, our little boy in his other arm.

Mr N smiled from ear to ear. He was so much happier with me back with him. He was still not feeling well, so back we go to the GP. He got some meds. My husband took me to Woolworths, where we bought some prem sized clothes. We gave our first photo film in. Boeboe looked so alone on them, with all the wires and tubes. I wanted to go back. I wanted to be with my daughter. I needed to go back.

It was going well with her. They said she was doing well on the milk. I greeted her with a very heavy heart that evening. I was going home without her. I couldn't stay in the hospital any longer. Mr N missed me too much.

It’s chaos at home. Fortunately, I froze some meals before the birth. I spent some time with my son, and then went to unpack the bags. It broke my heart to unpack Boeboe’s unused bag. I chose each outfit for every day so carefully before the birth. I pressed the pink babygrow to my chest and cried. I cried and I cried. For the first time I let all the emotions out. It felt good. I repacked her bag with one set of clothes, and a soft blanket. And I hoped we get to put it on her soon. I stared at the empty crib next to my bed for hours before sleep overcame me.

To be continued…

Pregnancy and Birth VI

I slept better on the second night. I still had the feeling of peace and acceptance in me. The gynae visited me again the next morning. Everything is going well with my own recovery. She said I must hang in there, Boeboe was taken out in time. She’ll be fine. I told the gynae how extremely thankful I was for her timeous intervention. She smiled at me.

I visited my daughter on Saturday morning as soon as I was bathed and dressed. I didn’t feel like fainting from the pain anymore while sitting on the straight, hard chair next to my daughter’s crib. I held her tiny hand and told her very softly how much I loved her. It was quiet and dark in NICU. The nurse said they keep the lights dimmed so that the babies can sleep. The more they cry, the more energy (and thus weight) they wasted. They needed to sleep as much as possible. Boeboe’s crib was the very first one at the door. I found out later that the sickest little baby got that crib. My husband brought his mom and Mr N to visit. They were not allowed inside NICU, so they stared through the glass door at Boeboe. But all that they could see was wires and pipes and a tuft of black hair. But it did Mr N the world of good to see his little sister. At least now he has a visual in his head of where mommy and his sister was. He didn’t feel well, poor boy. The doctor said it’s just a cold with a bad cough. It’s good that he’s not allowed close to his sister. She should not get his cold at that stage.

Boeboe got her very first wash on the Saturday at age 2 days. Things were starting to stabilize. Ventilating her is off the table. Yay!!! She moans a tiny bit less with every breath. She hated the bath and screamed because of the cold. We tried to console her, but hearing our voices caused her to cry hysterically. The nurse asked us to stand a few steps back. We did. And she went quiet and fell asleep. I was shocked beyond belief. It was a terrible feeling to know your child is better off without you. I had this image of Kangaroo care in my head. You have to be there for your prem baby. Talk to them, sing to them, hold them. But the stark reality was so much different. I wasn’t allowed to talk or sing, because the babies needed to sleep. I couldn’t hold my child, because she was too ill. It was difficult not to cry.

They told us to only touch her hand or little foot, as she was too sensitive being touched. Her skin was so paper thin, it may even hurt her. I could see that. Her knuckles shone through white. I could count the veins on her stomach. The ribs were perfectly outlined. The shoulders were just knobbly bones.

I got to change my first nappy for my daughter. It felt fantastic. :-) It was difficult, cleaning the tiny, bony buttocks while trying not the break her thin matchstick legs between my fingers.

The nurse needed to change her bedding and said I could hold her. My heart started to beat very slow and my breath caught in my throat. I wanted to with every cell in my body. But I got to hold her twice on Thursday when she was born. Daddy hasn’t had a turn yet. I turned to him and told him to go ahead, take her from the nurse. She helped us push the wires and tubes out of the way, so that nothing got tangled or pulled out. I watched daddy hold his daughter with so much tenderness it broke my heart. I took some pictures and caught the moment on film forever. He was in tears.

Saturday evening Mr N laid on my bed and slept. It felt heavenly to have his little body close to me. To breath him in again. To watch him sleep. I saw the peace he felt in his heart. I felt like I could breath again. It’s going better with both my children. I was contend.

To be continued…

Pregnancy and Birth V

 

At 5am the morning after Boeboe’s birth, I asked the nurses how it’s going with my baby. They didn’t have news, and said no news is good news. But I insisted on more. So they phoned NICU and came back with the words “she had a good night”. I was immensely relieved. She’s still alive.

I forced myself to eat breakfast. To swallow it down past the lump in my throat. I needed to get my strength back asap to be able to be there for my daughter. Just after 7am, the gynae came to give me the go-ahead to stand up. She told me that Boeboe wouldn’t have made it to the evening in my tummy. The placenta was totally dead and Boeboe’s oxygen would’ve been cut-off soon. She said the placenta was calcified so much that she couldn’t even believe it herself. My baby girl would’ve died inside me if I didn’t have a check-up with the gynae on that day. That was my fear throughout the whole pregnancy. It was a premonition I had. With a few hours to spare, my daughter’s life was saved. She was better out in this world, than she would’ve been inside. Now she had a chance on life. Inside she didn’t have any chance at all. For the first time I had peace. Peace about God’s plan. He looked after her. He took care of her. It was destined that she must live. Had to live. I had peace, and I had faith. I experienced it, and I accepted it. I didn’t realise I would need it later that day.

After I bathed and dressed, I was pushed in a wheelchair to see my daughter on her second day of life. The pressure on the c-section hurt, but I was determined to bite through the pain.

Everything looked the same. Or so it seemed. Her chest still went up and down with tremendous effort. The machines were still beeping. I looked at her heart monitor, and all I could remember was the green flatline when my mom died. The round zero for a heartbeat. I looked at the up and down curvature on Boeboe’s monitor, and I prayed that I would never need to see that green, straight line on her monitor.

After some time the c-section cut was pinched from my position in the chair, I couldn’t handle the pain any longer. I stroke my daughter’s small fingers. They were so thin, so small. I bit the tears back and asked the nurse to push me back to the maternity ward. I won’t cry. God saved her for a reason. I will be strong, for that same reason.

My husband came visiting. Mr N wasn’t doing well. He missed me and wanted to know if his sister was out of mommy’s tummy now. He didn’t understand why I wasn’t there when he woke up. It broke my heart. He’s still so small, his communication level still so rudimentary.

My husband went to sit with our daughter while I tried to rest a bit, willing the painkillers to take effect. He came back some hours later, but he was upset. They told him that Boeboe was very, very ill. We knew she was doing worse today, but we didn’t know what to do. We were frustrated, upset and helpless. I was in pain, and feeling scared and uncertain. My husband drew into himself. It was too much. He needed to look after the house, and had to make sure his mom was okay. She was looking after Mr N in our house. Daddy needed to be there for Mr N and his questions as well. We weren’t able to prepare him enough before the birth. What a pity. He was just too small. He couldn’t understand. And he was coming down with something, a viral infection probably. It was just too much for my husband to take in.

Me and daddy went to visit Boeboe together. Every now and then they chased us out to draw blood. No amount of protest convinced the nurses to let me stay. I knew that meant that it was too difficult for parents to see. I could hear her scream in terror and pain. They were measureing the oxygen levels in her blood. Hers was doing badly and they kept on pushing the oxygen higher and higher. She was on a CPAP machine. It pushed oxygen into her nose. It’s not invasive like a ventilator. But the pipe that goes through her mouth into her stomach was. There’s gas and bile coming out of her stomach. They tested this and it didn’t look good. They were surprised that a 37-weeker were doing this badly. They were also keeping an eye on jaundice levels and infection count. They suspected pneumonia, and started antibiotic therapy. The x-rays showed a lot of amniotic fluid in her lungs. There’s talk of putting her on a ventilator and injecting surfacant. Which is a very, very expensive, last resort for the lungs.

The day went by in a haze. My husband fetched our little boy to come and visit me. It helped a lot when he saw me sit on the bed, apparently healthy and normal and happy. I was fully dressed and tried to control the pain in my stomach so that he didn’t notice it. He had a cold, and my husband said he’ll take him to the doctor the next morning.

I didn’t want to see any visitors, just like on the Thursday after Boeboe’s birth. But I realised I couldn’t hide from everyone forever. My one brother arrived, and was happy and celebratory. Until they asked where the baby is. I went cold. No one told them. My husband forgot to phone them. To let them know. I could see the accusation and upset in their eyes. I pleaded forgiveness, but I could see they didn’t understand. I think they only really really understood when their baby boy was on the verge of dying himself at age 1, about 9 months later. Fortunately, their little boy survived and recovered completely.

More visitors arrived. Everyone congratulated us, but without smiles. I wanted to scream at them that it isn’t a funeral. She’ll be fine. She’s going to live! But at the same time I just wanted to fall into someone’s arms and cry my heart out. My one friend showed so much understanding, empathy and sympathy, that I took that with me for the rest of the evening. It sustained me.

I went to say goodnight to my baby girl after the visitors were gone. It was so painful to walk across the hall. So painful to stand next to her little crib. And too painful to pull a chair closer. But even more painful to see her suffer through each breath. I went to wash my hands in the prescribed way with soap and alcohol. Next to the washing basin was a little boy. There’s an IV line in his head. Silently I was thankful that it wasn’t Boeboe.

To be continued…

Pregnancy and Birth IV

After Boeboe spent some time in the nursery’s incubator, my husband came to tell me it doesn’t look good, they’re admitting Boeboe to NICU (Neonatal intensive care unit) because she’s still blue). I knew it. In my heart, I always knew it. All the months, weeks, hours and minutes that took place before her birth, I knew she was going to end up in NICU. I thus wasn’t surprised or even shocked. Just sad. I nodded my head in acceptance.

Two and a half hours after her birth, they brought Boeboe to me. The nurse said she couldn’t take her to NICU without showing her one last time to her mommy. Her tiny face was bluish and she was breathing very very fast, and very shallow. I pressed her tiny head wrapped in the blanket against my lips. And handed her back to the nurse. I knew that she was struggling with every breath she took. She needed help I couldn’t give her. It broke my heart, watching the nurse walk out with my baby girl. Would I ever see her again?

Me and Daddy just sat there. Too emotionally fragile to even talk. We didn’t phone anyone. We didn’t even sms. We were too sad. We couldn’t cope with any questions, or any sympathy at that stage. All we thought about was that our newborn baby was lying somewhere alone, fighting for her life. And we could do nothing to help her. Just pray.

After a short while, I told my husband he can leave me alone. He must go check up on our daughter. He didn’t come back. I started to stress. Something must be wrong. I wanted to go crazy, why didn’t he return? Was she fighting for her life? Is she getting worse? Is she already gone and he can’t bring himself to face me?

I called the nurse, who said they knew nothing, but she’s sure that NICU would call if there’s anything I need to worry about. Yes, sure.

Two hours later my husband returned. He was close to tears and white in the face. It was difficult for him to speak. He said she was given concentrated oxygen in a glass “bowel”, but it didn’t help. She’s struggling to breath. They chased him out, because they needed to hook her to the machines. Put an IV line in, and draw some blood. Pushing pipes into her nose and mouth. Pressing needles into my tiny baby’s litle arm. And we’re not allowed to stay. I was furious. I wanted to stand up and run to my daughter. I wanted to be there for her. I was furious with my husband for letting them chase him out. I was angry at God for letting her get worse, not better. I was angry at life that didn’t let me keep her in a few days longer so that her lungs could develop and strengthen. And I was especially angry at myself for my body that failed her. That I couldn’t have a normal vaginal birth that would’ve squeezed the water out of her lungs.

My husband went back to Boeboe, and AGAIN he stayed away 2 hours. (Remember, no cellphones in those days where I could've whatsapp him.) This time I cried. I was so scared and frustrated for having to stay in a bed 20 metres across the hall from where my baby girl needed me. The nurse came in and saw how upset I was. She called some help, and they pushed me across the hall where NICU was. It was agony. Every bump felt like a hot knife cutting through my stomach where the c-section was. And then I saw her. The small, itty bitty body. Pipes in her nose, a machine that went beep. Needles that was wrapped tightly into her paper thin arm. The naked, tiny body with only a too-big nappy on. Open, exposed before the world. A heater was providing her with life-giving heat. The soft pink teddy bear that I used to hold before her birth, dreaming about my daughter, was sitting in the corner. There were so many plasters over her nose, I couldn’t see it. Her beautiful, soft pitch black hair was plastered to her temples. She lied still, unmoving, except for the immense effort in taking every breath. The whole chest falling and rising, and with each breath she was moaning this awful sound. I couldn’t take it. I just stared at her in terror. Wondering how she’s going to make the night, fighting for each breath like that. I touched her little finger with mine, every cell in my body screaming to pick her up and ran away with her. To press her close to me. To hide her from the pain of needles and pipes and plasters. But I didn’t, I left her lying there. And tried to will her to keep on breathing, however difficult and painful each breath was.

They pushed me back, saying the bed was in the way. I went through all the necessary motions. I ate a piece of toast. I forced myself to drink a glass of water. I brushed my teeth and took my contact lenses out. I did everything that was needed. It was so different from the last time when I had Mr N. On that evening, there were people all around my bed. We were joyous, and everybody commented on our beautiful baby boy and celebrated with us. Now I was alone. Daddy had to go home because Mr N needed him more than I did. He was only 2 and a half. Still baby himself. I couldn’t sleep much. I had nightmares every time I did fell asleep. With every movement of the nurses’ coming and goings, I startled awake, wondering if they’re coming to tell me that Boeboe didn’t make it through the night.

To be continued…

Pregnancy and Birth III

I went to the gynae when I was 36 weeks pregnant with my daughter, for my weekly checkup. She was certain that I’ll go into labour within the next week or so, since the placenta was giving in. It scared me so much that she would die within me, so I kept counting her kicks every day, making sure that she’s moving every few hours. On Wednesday, 1 day before I was 37 weeks along, I scarcely felt my baby move. I counted, and got to 10 by the evening, but I knew something was off. She moved very softly, very slowly. I should’ve followed my instincts and went to the ER, or phoned my dr. Fortunately, the next morning I had a checkup with my gynae. The reason why I didn't phone at midnight the previous night. At the checkup, I told the gynae that the baby isn’t moving. She gave one look at the sonar and said “this baby needs to come out today”. She did a stress-test on me, and it confirmed, our baby was in distress. I was immensely scared. But, the baby was still alive. The heart was still beating. We had hope!

We rushed home to pick up our bags, and then back to the hospital (while the gynae's people organised a theatre and team). My sister came to fetch Mr N (who was 2 and a half). He was so sad to leave me, it broke my heart into a thousand pieces. My husband phoned all the family to tell them that baby is on the way! I was wheeled into theatre, after I first requested that they listen to the heart rate. It was still beating.

The moment the spinal took hold, the gynae started to cut. Boeboe gave a little mew of a cry and stopped. My heart stopped with it. I was sooo worried. Unfortunately the spinal anaesthesia made me nauseous. I tried to ignore it and watched how the pediatric sister took care of my little girl. The pediatrician came running in (late!) and administered some more oxygen. Boeboe was quiet. She was alive, and moving, but she didn’t cry. She was slowly, very slowly, turning blue from her hands and feet, upwards.

The pediatrician wrapped our baby girl tightly and brought her over to me, laying her on my chest and turning my oxygen onto her face. She had blue lips, but was the most beautiful sight. She had thick, black hair and the smallest little face. She only weighed 2.63kg. And she was 46cm. I was overcome with nausea from the spinal block, and just as I wanted to call someone to please take her so that I can throw up, the pediatrician took her and said she needs some more concentrated oxygen so they’re going to take her to the nursery.

I can’t remember how many meds the aneasthesiast injected before the nausea dissipated. I just remember him trying one after the other, and in the end Valoid did the trick! I was so immensely relieved. Then I started shaking. Fortunately, Pethidine helped for that. My blood pressure went sky high! For the first time in my life, I didn’t struggle with low blood pressure, but with high! Just for a while, then it settled down. I was moved to the maternity ward.

My husband, who followed our baby to the nursery, came back. He was pale and stressed out.

To be continued…

Pregnancy and Birth II

I woke up one morning at 13 weeks pregnant with my second child and noticed blood. Fortunately I was on my way to the gynae for a checkup. She did a sonar and said the same was happening as with my first pregnancy. The placenta implanted low over the cervix and was tearing loose at the one corner. It caused the bleeding. Like with the previous pregnancy, I was told to take it easy, not lift heavy objects, not drive long distances, etc. It was scary, even though it was the second time I was going through it. Every time I noticed new blood, I’d freak out. Even when you have a child already, this isn’t just “another baby”. This is YOUR baby. This is a new, unique life and you already love it more than life itself.

The good thing about the gynae visit, was that she confirmed my instinct, we were having a girl! I was also, like with my first son, struggling with constant UTI’s (urinary tract infections). It caused some pain in my lower abdomen and back. Unfortunately I needed numerous courses of antibiotics for it. :-(

At 14 weeks I was starting to feel movement. :-) It was lovely and made everything so much more real. She was a little busy body. Mr N, our oldest son, loved to play with her inside my tummy. He watched “Postman Pat” quite a bit in those days, and the moment she’d hear the tune, she’d kick like crazy. It was so sweet.

The bleeding episodes continued until week 32, though by week 30 the placenta slowly started to lift out of the way of the cervix. I was quite relieved. Unfortunately the stress just continued, because around week 32 the placenta started to fail. It didn’t provide enough oxygen to the baby, and the amniotic fluid came close to a dangerously low level. I was sent for extra sonars to keep a close eye on the baby. She slowed dramatically with her movement. Only making about 10 movements per day. I counted each and every day and kept a close eye on it, because I was extremely scared that she’d just stop breathing without giving us time to get her out alive. By 34 weeks, my nerves were shot.

I stopped picking up weight. In fact, I stopped at 20 weeks. I’ve tried everything. I’d eat and eat, but for some reason, my weight stood still. The baby still grew, so I was actually “loosing” weight while she picked up little by little. The dietician prescribed a very high calory diet, and it helped zero. I ate everything she told me to, but to no avail. I felt so helpless.

At 35 weeks, I knew something was going to go wrong. I felt it. It felt like the day before you fall ill. You know something’s “off”. You’re irritated and tired, but you can’t put your finger on the problem. Something’s just wrong and there’s nothing you can do to prevent it. At my visit at the gynae, she confirmed my fears and said the baby’s going to come early. But there was still amniotic fluid, the placenta was still alive though calcifying quickly, and the baby was still picking up a bit of weight, so she was going to keep an eye on it and take her out the moment I turned 38 weeks. We were contemplating a VBAC (Vaginal birth after Caesarian), especially since she would be a tiny baby and the reason I needed a c-section with my first was because he was a big boy. Now, only to shake the feeling of foreboding I had…

To be continued…

Pregnancy and Birth I

I decided to tell Boeboe's complete story. Starting at pregnancy and birth. I'm going to post it over the next few weeks.

I’ve always wanted children. More specific…babies. When I was about 5 or 6, I asked my mom why we can’t have a baby brother or sister. I was very sad when she said she can’t have any more babies. Three of my friends’ mothers had babies in the next 10 years, and I was just soooo jealous. I wanted one, and I wanted it now. Not waiting 20 years.

I see the same yearning in my daughter. She talks about it constantly. She even prayed for twin girls a few nights ago. She is mother-instinct personified. Fortunately for her, she has a baby brother to dote on…:-) But she keeps on asking for a baby sister. Unfortunately for her, we’re done with having babies. She’ll have to be patient and have her own one day. (Edit to add in 2013 - she got her wish!! We decided on one last baby, and it was a little girl. A little sister for Boeboe. The best give we could ever give her.)

Not only did I want children, I wanted a little girl. I wanted to dress her prettily, and wanted to have a friend in her, and I wanted her to be a mini-me. So when I fell pregnant for the second time (having had a little boy first time round), I really wanted it to be a little girl. When I was about 2 months pregnant, I had a dream. I dreamed that my daughter was sitting on her haunches, looking at me. She was about 2 years old, and had dark curls, with big dark eyes, long black eyelashes and a very small face. I dreamed that she was a dark-haired version of how Annie Malan looked in Fiela’s child, the movie. I dreamed that she was small, tiny with soft round cheeks.

Two and a half years later, this was exactly how my then 2-year old daughter looked. Since that dream, I knew I was going to have a little girl. The third month of her pregnancy passed by in a haze of nausea. Then, on the morning I had a checkup with the gynae for my 13th week, I stood up and noticed blood.

To be continued…