After spending the past 6 months running around like the proverbial headless chicken, Madmummy once again has found herself with some time to write:
a) because it is the school holidays (Woohoo) and…
b) because she is currently immobile with her left leg in a cast (boohoo)
Yes, Madmummy is currently a plaster-cast wearing invalid, crutching delicately around the toys that lay strewn across the floor. She is incapable of more than basic household tasks. So, naught she can do….but write.
I know you are itching to know how Madmummy came to be so incapacitated. Well, I’m afraid you will have to wait.
Before she can divulge the details of her “unfortunate accident”, she must take you back a few months, to set the tone, the scene, background and generally update you on what was happening in her life. In fact, it is likely that there will be a trilogy of posts for you to enjoy and I warn you, there may be some long-winded flashbacks and tangents.
Since her last post about the journey to the Hulk’s diagnosis, he has now gotten his glasses (and has broken them no less than three times.) But this post is not about the Hulk, it is about her eldest son, the Jabbermonkey, and his equally arduous road to successful medical intervention.
Prior to realising that the Hulk was a bit different, Madmummy had long been concerned about the Jabermonkey’s height and weight. Since birth he had always been petit. But after a 7 year long battle, she is happy to say that growth hormones have now been prescribed!
Much like with the Hulk’s diagnosis of Autism, the process seemed to have come to a standstill. But following their move to Walsall (see Moving Madness post) they have made a breakthrough. As customary, here is the full chronological order of events leading up to this triumph:
Disclaimer: the following includes details of Madmummy’s experience of childbirth. While it is not too graphic it may contain some negativity towards her labour. Madmummy would like to state that the NHS midwives are all hardworking angels that deal with women at their most vulnerable. They work long hours and cannot be expected to be jolly every minute of every 16 hour shift. But, of course, when one is in labour with ones first child (with a hormone-addled brain) one may forget this.
She would also like to point out that she had a comparatively easier time when giving birth to the Hulk (who was double the size). So, if you are pregnant and reading this, DO NOT be concerned that your birth experience might be equally harrowing and traumatic. Saying that, you might wish to miss the the first chapter.
Chapter 1: Labour or niggles
October 2011
After a fairly event-free pregnancy, Madmummy was informed (with 2 weeks to go until her due date) that her fundal height was unusually small. In other words her belly was not big enough for a 38 weeks pregnant woman. A scan was performed and the decision made to induce her – 2 days before her due date (lest her placenta should shrivel and her baby shrink further).
During labour Madmummy managed her contractions so well that no one believed she is in true labour- until she started pushing. Having used her trusty hypnobirthing tape and yoga ball to get through 18 hours of contractions, she suddenly felt the pains intensify.
The midwife on duty seemed rather unhappy that Madmummy had gone into active labour during her shift. She was not the nice lady who has been monitoring her all day, (she had been called away to an emergency c-section). In fact she was the ward supervisor and had not delivered a baby in 2 years.
She was adamant (as Madmummy begged for an epidural) that she was merely having a reaction to the induction medicine. So, Madmummy had thought that all her hypnosis tapes and breathing exercises were in vain. She recalls the midwife saying “it’s just niggles – labour will be much worse” and her heart sank.
Worse!?
She had thought (and said) that she would NEED an epidural. “There’s no way I can manage pain worse than this- I feel like I’m going to explode!”
Only when the midwife finally “checked” her, did she concede that Madmummy was, in fact 8 centimetres dilated. So, the “reaction to the induction medicine” was actually…transition! The bit of labour where the contraction intensify, just before the pushing starts!
There was a moment of pure relief as Madmummy realised that, not only was she in active labour, but nearing the end! She felt a wave of new confidence and excitement. She wasn’t a weakling with a low pain threshold after all!
The pain was bad but she was proud to have coped well up to that point – with only a couple of paracetamol. She had been offered the two paracetamol a couple of hours earlier and politely accepted (with well disguised contempt.) In Madmummy’s experience paracetamol didn’t touch period cramps, so she felt a mixture of mirth, annoyance and insult at being offered it for the body-contorting-agony of back to back contractions.
Before the midwife had time to wheel her across the corridor from the induction suit to the labour ward, the pushing started.
The midwife shouted for her not to push, but by this time Madmummy’s body was no longer her own.
There was moment where Madmummy recalled one of the many articles she had read about giving birth and she asked, “shall I get on all fours?” The midwife calmly said “no, you don’t need to do that”. To which Madmummy replied “okay, so no hippy shit, then!” After a few puffs of gas and air, 10 BIG pushes and what can only be described as demented roaring from Madmummy, the Jabermonkey was born- expelled from her womb still in the caul.
He was perfectly formed but tiny and a bit on the chilly side. After being warmed up in the baby microwave (it literally went ping when he was done) he was handed to his weepy (and sore) mother. A surge of euphoria came over her as she held her precious, and very dainty, first born baby in her arms.
At this point the midwife asked if she had brought him a jumper and hat and was openly frustrated to discover that she had brought only a single vest and baby grow. She made some comments about her child being cold and squeezed on a rather ugly woollen hat she had found in the donations box. Madmummy recalls the exacerbation in the woman’s voice and and deep shame fore being so disorganised.
She and hubbykins then left her alone, to think about what a crap mother she was already proving to be within the first half hour of getting the job. Needless to say, with surging hormones coursing about her mind, the emotions were somewhat magnified.
Once she had finished bawling her eyes out she then felt a wave of anger, as she recalled that she had been told not to bring hats and jumpers by the nurse at her pre-natal classes. “Hospital are notoriously hot and your baby will not need layers- a hat could cause over heating” – she has been informed. She and the rest of the pre-natal class cohort, had been advised to pack two bags. An overnight/labour bag with things to get through labour and the initial few hours (first baby grow/nappy etc) and another bag for hospital stay/taking baby home with hats and mittens etc.
As Madmummy had been assured over and over again throughout the afternoon that she was NOT in active labour, she had told her secondary birth partner (her mum) to go home with the second bag. After all she didn’t want to cause an accident by cluttering up the hospital with two bags.
Although it may have been a poor choice, Madmummy still felt that the berating she got was a bit cruel and insensitive…after all she had been in a fair amount of discomfort at the time she made the decision. Besides, she had just given birth!! If ever there was a time to give a girl a break it would be after she has just GIVEN BIRTH!
Chapter 2: The early days
The dream Madmummy had dreamt of breastfeeding Jabermonkey was quickly shattered. In the first few hours she was informed that his sugar levels were low. Therefore she had two choices…feed him from a bottle or they would take him to Intensive Care. She couldn’t bare the thought of being apart from her precious child, so she agreed to bottle feed and breastfeed him. Unfortunately, she was totally unprepared for bottle-feeding and hubbykins had to rush out to get premixed formula.
Once she was on the ward, there was a deluge of information thrown at her, which she didn’t really take in (not surprising given that she had just undergone the most traumatising experience of her life, and hadn’t slept for 30 hours).
It was explained that Madmummy needed to request new bottles at reception for each feed. So every time she went to the ward reception, she apologised for bothering the night staff, who would reply “it’s okay” – unconvincingly, as they handed her a disposable bottle.
On the second day Hubbykins was surprised to find that she had run out of milk (Jabermonkey only needed 2oz of the 6oz cartons per feed and Hubbykins had purchased 6 cartons). It became apparent that she had been throwing 5oz away after each fed! Hubbykins and the midwife delicately enquired why Madmummy had not kept the leftover milk in the fridge.
There’s a FRIDGE!?!
Apparently she has been told about it during the “information monsoon”.
After beating herself up for her ineptitude, another patient took pity on her. The kind lady across the room made her a cup of tea and took her to the fridge where she could store the extra milk.
Chapter 3: Nipple confusion
Combination feeding did not go well. In the hospital the tiny Jabermonkey could not latch or suck properly, and immediately preferred the ease and reliability of a bottle.
Once home (when her milk came in) his minuscule mouth found it impossibly to gain any kind of purchase on Madmummy’s solid bowling-ball-like breast. They were intimidatingly large and overwhelming to him.
She began expressing before each feed in order to “soften them up” for him. Perhaps it was too much effort, or perhaps he just didn’t like the taste of her stress-hormone-laden breast milk, but he refused. He would cry and resist, squirm and generally refuse to do all things babies are meant to do with lactating boobs! 30 minutes to an hour would go by and he would give up and fall asleep.
Madmummy would then give in and offer a bottle, to which his little eyes would light up. He would suck away on his Cow and Gate and stare up at mummy with wide eyes and she knew what he was thinking.
But she persevered. She would express, then attempt to breast feed, and then bottle feed and repeat. She was aware that any supply would be thwarted if there was a lack of demand and that, while he was getting a bottle, she would not be generating enough milk herself. Sometime during his second week it was recommended (by health visitors) that she should not offer him bottles – “if he’s hungry he will just have to learn to breastfeed”.
It lasted 1 agonising day, during which time Jabermonkey lost 5oz and screamed continually. Knowing that a 4lb 8oz baby could not afford to loose 5oz in a day, and she couldn’t afford to loose her sanity, she went back to combination feeding. EVERY THREE HOURS…DAY AND NIGHT…FOR THREE WEEKS.
At the beginning of the 4th week she began to hallucinate. Thus it was decided that she would give up breastfeeding and accept that, breast is not always best.
It felt as though a weight has been lifted.
Apart from expressing a bottle a day (as a gesture) she left her breasts alone and oh…OH sweet lord it felt good!
Chapter 4: Regular weigh ins.
The reason Madmummy knew that Jabermonkey had lost 5oz (during her foolish attempt to breastfeed exclusively for one day) is because he was being weighed everyday by her health visitor. Apart from the day in question, the formula milk seemed to be working and the numbers on the scale were gradually rising.
After her midwife discharged her, she recommended that Madmummy took him to be weighed at a baby and mummy group, which was frequented by a midwife. So, every week or two, Madmummy took Jabermonkey to be weighed. After each “weigh in” his weight would be entered and a point plotted on the graph in his “little red book”. It went up steadily, but always under the lowest percentile on the graph.
Chapter 5: Blood test torture.
By his first birthday Jabermonkey was still under the 4th Percentile and Madmummy’s had become concerned that he was still very tiny.
So the GP referred her to the growth clinic at her local hospital. They suggested a blood test to look for an underlining condition. But getting blood from a 14lb 1 year old prooved to be difficult and traumatising. The usual blood clinic tried, the children’s ward tried and finally the children’s A&E department tried. They had tried 8 different places on her tiny baby’s body until they finally got blood…from his WRIST!
During all this her child had screamed and squirmed and she had held him as best she could, while imagining herself in her happy place (thank you birthing hypnosis).
It was so traumatic that her Mother in Law, who had come for moral support, felt quite faint by the end. For Madmummy’s part, she felt emotionally drained and horrendously guilty for subjecting her innocent child to such butchery. What made it worse was that, after each attempt, (during which time his little face would be contorted in agony), he would look around and smile or even laugh at the medical team in delirious relief.
The blood results turned out to be fairly inconclusive, nothing major wrong. During the course of the following two years he visited the hospital a number of times to be weighed and measured and even get a bone XRay.
Unfortunately the blood tests had caused him such trauma that he had became very anxious. He panicked when the doctor tried to X-RAY his arm and started screaming and crying. Eventually, Madmummy managed to get Justin’s house on her phone to distract him and calm him down.
Another blood test was carried out when he was 18 months old, which was marginally less traumatising – but it still took several upsetting attempts and various nurses trying various areas in his body. It didn’t help that he would begin crying and panicking as soon as his arm was touched. He later developed a fear/suspicion of all female dentists, hairdressers and (obviously) nurses and refused to wear short sleeved tops.
It was around this time when she was prescribed special milkshakes from the dietitian to boost his weight and growth. These were useful, especially when he was going through the typical toddler food refusal stage. There was no danger he would lose weight if he didn’t eat all his tea, as long as he had a shake before bed. Af this point, he was still just 16lbs (some people have newborns heavier).
Chapter 6: He’s how old?!
Jabermonkey was now walking and, indeed, talking and many people would look surprised to see a child the size of a 6 month old dancing and forming sentences. Madmummy would always be amused by this at first, but when she explained he was actually 3 times older than he looked she would be met with concerned faces and questions.
More than evershe needed to be proactive in her quest for answers. Although having a smaller toddler had its perks (she could just fling him over her shoulder when he was having a tantrum) it was becoming a concern that his weight and height were still not increasing enough to get him on the graph. At 21 months it was decided to stop giving him the milkshakes, as they were just preventing him from eating the meals she prepared for him, and had not improved his growth.
At around this time the doctor at the growth clinic was concerned Jabbermknkey might have rickets due to his boney ribs sticking out, so another x ray was performed and a Vitamin D blood test. It was during the latter that Madmummy finally lost her composure.
She was heavily pregnant with the Hulk at the time and lacked the strength to restrain her terrified child. So his nana had to hold the him, while a nurse tightened the tourniquet and he began to scream and struggle (before a needle had been inserted).
Madmummy ended up leaving, not only the room, but the entire phlebotomy department (that’s posh for the blood test room). Hearing his desperate cries even in the corridor, she was overcome with hormones and helplessness. She burst into fits of tears, much to the dismay of passers by, who upon seeing a distraught pregnant woman came to comfort her.
When she explained (through blubs) that she was upset that her toddler was having a blood test, they politely patted her on the back and continued on their way – clearly thinking “she’s mad”.
The blood test wasn’t even successful after all that, as not enough could be taken. Nonetheless the doctor ruled out rickets from the X-Ray.
Chapter 7: The big test
A year or so later, the doctor decided to arrange a Growth Hormone Simulation test, which would measure his growth hormone level and involve taking a series of blood tests over the course of a morning.
Obviously, Madmummy was concerned that he would not be able to cope with this due to his previous trauma and subsequent anxieties. But the doctor arranged for a play worker to help provide therapy prior to his test. So, each week they attended the ward, where the play therapist talked him through the process of inserting the cannula. He even got given the tubes and plasters to practice on his Peter rabbit toy and was well prepared on the day.
Madmummy had even been given a special cream to put on half an hour before his test to numb the area where the needle would go. Why on earth this was this not offered before? ‘Answers on postcards.
So, on the day of the test, Jabbermonkey and Madmummy came to the hospital and the regular height and weigh checks were done. The nurses asked the standard questions: “is he well”, “have you put the numbing cream on?” “has he been fasted?”
I’m sorry…what…fasted?
Now, Madmummy at this point has not only given birth to the Hulk, he had become a strapping toddler (with as yet undiagnosed autism). She had therefore endured all new levels of sleep deprivation (without the ability to rest during the day with a demanding 4 year old and very mischievous 2 year old). So she acknowledges that she may have missed something said during the consultation with the doctor.
She had indeed had no idea that he was meant to be fasted and had fed him breakfast. So the test was postponed and they returned home, shaking off their annoyance and calling it “just another practice run”. A week later she received a letter with a new test date and two pages of information which were NOT provided with her previous letter. It included information about the test, and right at the bottom it stated that the child could not eat or drink 8 hours before the test.
So on the day of the test Madmummy dutifully ignored his request for breakfast, creamed up his inner arm and they trekked back to hospital.
With a little support from the play therapist they succeeded in getting in a cannula and gave Jabermonkey a substance called Clonidine to drink. He behaved very well and it was less harrowing that Madmummy had expected. The only issue was, having not fed him since 7pm the day before, he became weak and tired. By the end of the test he was sound asleep.
Unfortunately, just before the end, his cannula dried up. They ended up trying to take blood from his other arm but could not get a full sample and had to get the last bit from his heal. Considering that neither of these places had been numbed, Jabermonkey coped bravely with only a little squeal of pain. This may have been because he was too exhausted, dehydrated and hypoglycemic to struggle.
After the test was over he was offered toast which he scoffed hungrily before proceeding to vomit everywhere. After he had eaten a bit of lunch (slowly) and was feeling more himself, Jabermonkey returned home and received much praise and many rewards for bravery.
Chapter 8: the results!
After a few months the results came back …
Growth hormone levels: normal.
Growth rate: normal.
By this time Jabbermonkey was still just 20lb and his 2 year old brother was fast catching up. In fact they were often mistaken for twins.
He was also due to attend school and many more people has begun to make comments about his weight and height. However, Madmummy was determined that, as the the professionals had confirmed he had no growth hormone deficiency, she would confidently respond that he was just small and would grow in his own time.
Case closed…or was it
Chapter 8: A second opinion
Upon moving to Walsall, Madmummy decided to ask their GP to refer her to a bigger hospital for a second opinion. After all he was, at the age of 6, still wearing 2-3 years old clothes. The GP agreed and within a few months she had an appointment with Birmingham Children’s Hospital. The same blood tests, x-ray, weight and height checks were repeated and yet another growth hormone test was scheduled.
On the day of the test the cream was put on by the nurse (who probably did a better job of it) and Madmummy gave Jabermonkey a midnight snack (9 hours before his appointment). This time he was given a different testing substance, called Arginine, intravenously and they shared a pleasant day together – reading books, playing with the toys and watching videos on the iPad.
He was even wheeled over to a party in another ward, where he had his face painted.
Walking back to the car park, Jabermonkey sweetly expressed how much he had loved spending the day with her. Indeed, it has been a while since Madmummy’s attention (which has been torn between the Hulk, the house and her job) had been so firmly fixed on him. But what prey-tell were the results I hear you cry…
Big drum roll
Growth Hormone levels: normal.
“Well, that’s that” thought Madmummy. After having got two professional opinions, she must accept it…he would just carry on being petit. She had never really been unduly concerned about the prospect of him being small, what he lacked in high he had always made up for in personality. But since his birth, she had felt increasingly dogged by comments and looks every time a stranger was surprise to learn of his age.
Moreover, with two other cases of short stature in the family, she felt justified in ensuring that all checks were made. Madmummy had often worried that one day he might find being small difficult and he would ask why Madmummy hadn’t pushed for growth hormone therapy. Now she felt sure that she had done all she could…she had tried.
So she went along to his next consultation, expecting that the doctor would reassure her that Jabbermonkey would grow in his own time. Perhaps the doctor would arrange regular follow up appointments, or just discharge him altogether. After going through the motions of the usual height and weight checks, the doctor explained that the test proved his growth hormone level was fine.
However.
Due to the fact that he was born “small for dates” he would be eligible for growth hormones to “boost” his growth.
Hold the phone!
“So he is going to actually get growth hormones” she had uttered in disbelief.
“Yes” replied the doctor.
Before she knew it, she was being shown several injection devices to choose from.
Thrilled as she was, she suddenly felt apprehensive about the prospect of administering daily injections into Jabermonkey for the next 11 years. By this time however, Jabermonkey was on side and had started to really want to be taller.
Having just watched Captain America, he likened his new injections to the super juice that was injected into the weedy Steve Rogers. (Hence the title of this post Captain Jabbermonkey).
He was all for becoming a burly super hero
Madmummy she was thrilled when she got a call a few weeks later to arrange the first delivery of growth hormone. However, it was another month before she got the actual device, along with a growth chart, a story book, stickers, teddy bear and three sharps bins. There was a bit of delay getting their nurse visit to train them how to use it, but Madmummy wasn’t going to complain- she was just thrilled that it was all happening.
By April 2019, after 8 years of doctors visits, traumatic tests and uncertainty Captain Jabermonkey had his first jab of growth hormone…and the superstar didn’t make a peep!
He has since grown 6 cms in 3 months (which was how much he was growing in a year previously!) So it seems to be working!
Apart from a few mood swings and growing pains he is very happy to be finally getting taller.
Madmummy, on the other hand, is getting increasingly emotional about her little guy growing up fast. She’s even had to get him a new wardrobe as he’s growing out of all his clothes!
But, before Madmummy’s eyes could well up there would be all new “distractions”…
madmummyblog 