 25 month Brooke with 30 month old cousin Zoe Brooke is now 27 months old and is doing fantastic. She has begun speaking a little, she can sai Mum, up, out, no and Im sure there are many more that I cant understand becasue of the open palate. She communicates in other ways very well, she points and babbles to express herself and she has started to put two signs together. Last month she finally got her teeth removed. They had decayed severely as a result of her relfux and constantly sucking her bottle to get enough calories in. She is much happyer than she was with a mouth full for painful rotten teeth. She had to have 12 removed, all she is left with is 4 eye teeth and 4 back teeth with steel caps over them for protection. She coped really well with the extraction itsself and was able to come home from the hospital the very same day :). Becasue she coped so very well under general anesthsia last month getting the teeth out, they are going foward with the plan to close her palate. Her surgery is booked for the 26th of May, 3 days time. Im both anxious and excited. It has been a long time coming and this time there is no reason that it can't go ahead and we can start making progress with eating and speech. She has progressed well in all areas over the last few months, she is much more stable on her feet, learnt to crawl, can now climb a small ladder and even clamber up onto a low couch. She remains incredibly affectionate and is so much fun. She loves her baths, loves to swim at the pool, she loves visiting Mel. She has discovered playing outside is the best fun ever and is still cheeky and out going. 27 months, weighing in at a cutesy 8.3 kg and standing a proud 73cm she is still below charts for height and weight but that really is no big deal at all. She is cute as a button :)
Brooke went into the hospital for a level 4 sleep study to make sure she was fit for her surgery on the 9th. Well that was no good! Surpising to the doctorsm, they werent expecting her test to be so bad as it was, her test shows that she has obstructed breathing with many desaturations. 247 desaturations per night to be exact. So no surgery for Brooke. The doctors are concerned that when they close her cleft they will obstruct her breathing further and she will need to be admitted to the Intensive Care Unit following the operation. Becasue there is only one pediatric Intensive Care Unit in the entire country her surgery will most likely need to be performed in the Starship Childrens hospital in Auckland at a later date. Right now we are awaiting Drs meetings and tests. She may need to have an operation to bring her jaw foward before the cleft can be closed, and also they are thinking that a nasal pharangeal tube will help her obstructive breathing. So again we wait with no definite plan :S. Oh Brookie, you are so complex arent you!....and so we wait.
Today is the 4th of December and Brooke has her cleft surgery booked for the 9th. Hopefully she can stay well between now and then and we can start moving foward with feeding and speech. She will also be having grommets inserted so hopefully that will improve the hearing in her right ear. Time will tell.........
As I write this Brooke is 21 months and grooving along well. She is so clever, she has been wearing her hearing aids most of the time like a good little girl and its paying off with her speech. She cant make constanant sounds but is saying some words now. Today she learned to say look, she misses the k, but clearly points as she says it. What a star :). Big progress in the past few weeks is Brooke is taking some steps on her own! Yuss Brooke! Last weeks weigh and measure she is 8kgs and 68.8cm tall, gaining weight well but still a lil shorty. She hasnt had her overnight tube feed in well over 2 weeks and is feeding herself with a bottle overnight. She is becoming a real little madam, loves to hang out with her big brother and sister and is becoming very assertive.
I cant believe how quicky she has progressed lately, shes been a baby for so long and now all of a sudden she is a real little toddler becoming more independant each week. She bumshuffles at the speed of sound now, and is pulling herself to stand. Wont be long till she is letting go and walking off. She is almost there, just needs to get some confidence and she'll be off.
Her cleft surgery is not far away, after that feeding and learning speech will be so much easier for our little girl. At the same time they will put in some grommets and hopefully this will improve her hearing somewhat . Time will tell and I am very excited to see how much difference to her hearin
Brooke turned 1 year old on the 11 feburary 2010. What a milestone. Everyone had told us that the first year would be the toughest of her life and I sure hoped that was going to be the case. If she could get through that, she can get through anything.
She has started eating some solid foods, 3 tiny bites is a huge deal in our house. She chokes often because she still has an open cleft so grabbing the baby, tilting her upside down and performing back blows is a normal occurance at the dinner table At around 16 months she started taking her bottles during the day and only needed the tube at night time making life so much easier.
In may she became unwell and was admitted breifly 3 times, then as winter grew colder and the bugs started swarming she became very unwell with Adenovirus and needed admitted and put on oxygen. That was the beggining of august, then late August she got R.S.V, and was re admitted, then mid September she got very sick once again and her H1N1 swab came back positive. I had been worried about H1N1 when she was tiny, I was terrified it would take her from us. She was a very sick little girl and needed to be put into the High Dependancy Unit for 4 days and for 2 of those days I was unsure we would be bringing her home with us this time. But my little Brooke is a fighter and she got though!
This little girl is just amazing. She now has a killer grin and the funniest little quirks. Shes happy and bubbly, everyone that gives her a chance loves her. She began bum shuffleing at 17 months and is so pleased that she can do things for herself and get into whatever she likes. I was overjoyed when she started, I was really worried that her lack of interest in moving was going to mean something for her intelect but now shes off and you can see the spark in her. She is no ones fool.
As far as she is going with her medical bits and pieces:
She had an M.R.I at 18 months that showed brain damage and explains the weak left side.
She still has no diagnosis, we saw the genetics people at 16 months and they have decided to let her grow and re visit the causes of her multiple problems in 2 years time.
She was due to have her cleft fixed in August but that has been put off till latewr in the year, possibly December, January or February.
It will be great to have it fixed, but I am not looking foward to the actual surgery. Poor wee brooke will go into hospital happy and healthy and be made sore and miserable again. I hate that.
She will have grommets inserted at the time of the cleft surgery and the dr is hopeful that her hearing may improve.
At 18 months brooke is in 3-6 month clothing, bumshuffeling around the house, walking with the help of a walker, slapping her brother and sister in the face and laughing, wearing her hearing aids almost all day, sleeping as poorly as ever, kissing and showing huge amounts of affection, showing interest in everything going on around her and using her voice to make more sounds and has discovered that the jolly jumper is awesome fun.
As I finish writing up to 18 months, she is 5 days away from being 20 months old. I started this blog quite late in the peice but from now on I can write things up to date as they happen.
Brooke continues to grow slowly In every aspect. Developmentally she is way behind and at 6 months she weighed just 10lbs, at her first Christmas when she was 10 months the turkey was bigger than her. She grew out of her newborn clothes at 10 months.
Her feeding is still one of her main issues. She made a massive leap foward when she was 9 months old and began to take some of her daily intake orally! She was able to manage 20 ml from each bottle orally and the tube would take care of the rest. Her reflux became much much less and her feed rate was able to be sped up. No more grueling 90 minute tube feedings. She was able to suck her bottle for 30 mins and whatever was left was fed via her tube in around 15 mins. I was free to go out for more than an hour at a time and It was great.
But freedom to go out more into society came with its own issues. It was these months between 6 and 12 months that I became aware of society and how they can be so afraid of difference.
Because her nasal tube was out the public stopped automaticaly avoiding so the people felt free to come and meet her, and most often they wished they hadn't. They would come and say hi to the little baby and ask me her age, I would tell them and they would recoil as they noticed her facial differences and realised that the little baby wasnt perfect and off they would run.
I had one woman stop and talk to me while brooke slept in her carseat capsule, commenting on my wee baby, cooing and then asked her age, I said 12 months cheerfully. Off she went, calling out over her shoulder "I hope she is okay!" as she ran from the uncomfortable situation of speaking with an abnormal baby.
There continues to be many situations similar to that, people who are very friendly and forthcoming, eager to meet this little bundle of joy and quickly realising this baby is different, suddenly became in a hurry to get anywhere but near her.
I became blunt and I guess sometimes a little rude as the months wore on and I became more protective of my girl.
People notice her hearing aids and often ask if she was deaf from birth? I got sick of it one day and told a poor woman that no, she has the kind of deafness that comes with age.
Meanwhile aside from what I was dealing with day to day, Brooke was in and out of hospital with reccurent viruses and it is now a way of life for us.
At 12 months she was, and continues to be, a mix of developmental stages. She doesn't coo or babble. She laughs a strange silent laugh, only a little and only when tickled. She doesnt post objects and appears to have no interest in moving from the spot she sits in. Brooke began sitting at 9 months and by 11 months she no longer needed a cushion, she is not yet rolling or crawling and attends physiotherapy regularly. She is stiff thru all her limbs and her trunk and her left side is weaker than her right. She makes no attempt to reach objects that are not within immediate grasp which has worried me because it seems she has no desire to challenge herself, I work with her daily and she will get mobile, Im determined to see that she does.
 It was the last day of April when we were finally allowed home. Winter was already on its way, and we had spent the last days of summer and most of autumn tracking back and fowards between Ronald Mcdonald House and the Neonatal Intensive Care Unit. It was the weirdest thing to sort of miss an entire season. I was meant to have a March baby, that's how it was planned, everyone knows newborns in May are no fun. But here I was, heading into Winter with a special needs, delicate, tiny baby with frail health who weighed a fraction more than my son had at birth. Brooke had been home for almost excactly a month before she was admitted to the paediatric ward for a virus that caused bronchialitis and she was back on oxygen. Much of our first year home with Brooke was like this. We would wait till she was sick enough for hospital, and take her in, and wait for her to be well enough to come home, then wait for her to get sick again. Ward 22 became our second home, Ronald McDonald House our sanctuary after numerous days with sleep constantly interruped by Brooke's coughing and vomiting. Big brother Ollie was a new entrant at primary school and germs seemed to stick to his school bag, and under his fingernails, and just lurk in the house waiting to infect my baby girl.
As if that wasn't enough she was on a hellish feeding scedule. She had her naso-gastric tube in so we couldn't leave her alone during feedings in case she pulled her tube and aspirated. She was on her pump feed for 90 mins then off for 90 mins then on again, all day, and all night - with up to 4 bouts of projectile vomiting during and between feeds.
During Brooke's 3rd month she had her follow-up ABR hearing test. She failed. My little baby was deaf. I sort of knew; it wasn't a total shock. Her ears never did start to look right and Mum and I had talked about it and clapped about her head a few times and gave each other meaningful "oh dear, that's not good" looks when she failed to respond in the slightest.
Just another thing to add to the "problem list".
The problem list changes all the time; it's hard to keep up.
At this stage it said things like:
Repaired VSD
Dysmorphic Features
Large cleft palate
NG tube fed
Micrognathia
There were maybe 10 things on the list at that stage, add to it failed ABR.
She was fitted with bone conduction aids on a non elasticated head band around a month later. It fell down all the time rendering her blind as well as deaf. Poor child. She preferred to chew on it more than have it on her head so it was removed quite often. (Much later we learned that it was not doing much good for her in terms of improving her hearing, so the guilt from not making her wear it constantly went away.)
6 months came around: she was almost 5kg now, that was her weight goal to have her gastrostomy operation to insert a feeding tube into her tummy, thus removing the need for her horrid nasal gastric tube. A very exciting time for us. The tube was becoming more of an annoyance for Brooke as she was getting older. She was pulling it out more and her little face was always irritated by the tape. The biggest pro of this (from a purely selfish point of view) was that the tummy tube meant we could feed her continuously overnight so no one had to do the 90 min feed watch 3 times during the night. When I thought of the prospect of sleeping for possibly 6 or 7 hours straight while the machine did its job it felt like Christmas, only 100 times better!
She recovered well from the surgery itself and was less irritable once the tube and tape were off her face. It was an adjustment getting used to her new look, as we had only had brief glimpses of her whole face during tube changes before. The reflux continues to be a problem and she is still not orally feeding. At 6 months she is not rolling, but I'm not too worried, she has had a lot of setbacks and there is time to catch up. She is very much like a 3 month old and there is a little personality starting to wake up in there she's started to smile!
Brooke is currently 18 months old as I begin this , but I will start where everything should be started, at the beginning.
The entire pregnancy was stressful from start to finish. I had bled almost daily from week 4 to week 21 and baby was very inactive, and I had been having weekly scans. I was worried, the Doctors weren't. We had been assured that our baby was fine, perhaps a little small, but nothing to be concerned about. It did not surprise me in the least when my waters broke at 34 weeks and I had to have an emergency c-sec the following day. What did surprise us was as her first weeks unfolded it became very clear that we would not be taking a perfect little baby home.
On day one we had a perfect little baby, born a little early, quite small 4lb 6oz, chubby because she was just 31cms long, A perfect little chubby preemie (with funny ears but surely they will come right?). On day two we have a baby with a large cleft palate, two thirds of her hard palate and her soft palate are clefted, okay thats awful and breastfeeding is out the window. I was devastated. It seems silly now that I cried my eyes out over the cleft.
Day three, our perfect little preemie with a cleft showed signs of heart failure. She had her very first echo: she had a hole in the heart and the Doctor wanted to discuss it with us. I said to Rhys, "Okay hun, we want to hear small and we want to hear A.S.D." (I was familiar with small A.S.Ds as my eldest had one and she was fine after catheter surgery to fix the hole aged 3) I shouldn't have said it, Doctor says "Large V.S.D" and that wasn't the best news ever.
Over the following days I noticed Brooke's small eyes and jaw, and those ears didn't appear to be springing to life, but: okay, we have bigger fish to fry right now.
She became so unwell that it was clear that she would need surgery sooner rather than later. Originaly they had said 6 months, then 4 months, then "we will try to get her to 3000g". She was well under her 1995g birth weight; she had lost 25% of her birth weight by the time she was ventilated. Rhys suggested to me 3 months? I said "Hun, she will be lucky to last 3 weeks".
So that was that, her heart was failing rapidly, at 2.5 weeks old she was put on a ventilator and we were sent up the country in an air ambulance to the Starship Childrens Hospital (where miracles happen everyday) for 8-hour heart surgery where they stopped my 4lb baby's beating heart and somehow fixed 5 holes in her walnut sized heart. The main offending hole measured 12mm by 8mm and is described as "huge". She was 3.5 weeks old when her precious life was given back to her.
Right, so that's out of the way! Onwards....
Her feeding difficulties are "more than to be expected with a cleft" so her growth is a little slow, but she finally made it to the 3rd centile(only just but fell quickly under again and has so far not retuned). So our baby is 11 weeks old and she is finally sent home with a zipper scar down the middle, a few negative chromosomal tests (no defects found), a failed hearing screen, a feeding tube and pump to feed her, a few follow up appointments for the next month and a giant bag full of medical equipment and medications..... Our new life with Brooke has begun!
More to come...
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