What a waste of time :(

 

Today started off badly as Logan decided 12.30am was 6am and preceded to be awake for 3 hours before finally falling asleep with me in my bed (poor daddy was kicked into the spare room :() But things only got worse when it began to snow, not only snow but bitter bitter cold and we had a trip to London to make in it.


As it happen the morning went fairly smoothly Logan was surprisingly happy after his broken sleep whilst mummy felt like a bear with a sore head in desperate need of coffee. We left nanny's house at 10 after Logan's milk and the snow began to fall even heavy grandma and I crossed our fingers that is wasn't going to get too bad whilst Logan had a little nap in the back of the car. We arrived in plenty of time and hoped for a parking spot close to the hospital but of course there wasn't so I unpacked all the car and Logan's buggy and grandma went with him into the warm of the hospital whilst i parked the car.


Logan's appointment was at 11.45am great i though should be over and done with by lunch time WRONG 12.15pm came and i asked the receptionist how long it would be Logan was now behaving like he had never been fed i mean he was 15 minutes over lunch time ;) her exact words were we are running VERY late now i understand they are busy so i said ok and we went and fed Logan he scoffed his dinner happily and we waited again it was nearly 1.00 before he got seem :( i was seething its too long for a little baby to wait. Anyway the scan was under way and as the scan was on Logan's .... 'boy bits' he thought it was great (typical man) he giggle through the whole thing the scan was to check that Logan's right testicle wasn't in his abdomen (which the junior surgeon was adamant it had) well she was wrong Logan had a Inguinal hernia as a result of his bowel surgery it seemed because of that Logan's right testicle has free run into the inguinal area which in small boys in totally normal erghhhh i couldn't believe it because of the dr incompetence we had a wasted trip into the cold, ohh well at least we knew everything was alright it is possible Logan may have to have surgery on it into the future but his surgeon with have to decide when thats needed.


With the scan done grandma and i went for some lunch whilst Logan was playing in his buggy, then we made the trip home in the cold, Logan is a little ratty this afternoon due to very little sleep so i am really hoping for an early night tonight for us all.

Beginning of a busy week.

Today is Monday the only day this week Logan doesn't have an appointment, it's going to be a busy one, Logan is feeling a little under the weather today he's teeth are really bothering him he cried all through his lunch that was of course until we came to the fruit which when down with no trouble at all ;) He cheered up a little after some Calpol and seems to be totally over it now.

Great Ormond street called today they have had to cancel Logan's appointment next friday due to the Dr not being available which means he is now going on March 1st great birthday present for mummy a trip to London :( still it has to be done so we don't complain.

The afternoon Logan and I are going to cook daddy some sausages and then have a cuddle and a play, hopefully Logan goes to bed early tonight so i can prepare for our trip to London tomorrow.

Adele 'Make you feel my love'

Logan's favourite Adele song :)

Fun Times

Today Logan and I played at home whilst Daddy went to get a new tyre for our car. We had lots of fun playing with all of Logan's toys including his drum, musical toys, and giggle ball, Logan is sitting supported much better now fingers crossed it won't be too much longer before he's doing it all my himself.

At Lunch time Logan was in a giggly mood laughing all through lunch at least it was laughter and not tears, He's doing so much better with eating now and seems to actually enjoy food trying new finger foods and even feeding himself milk and water out of a beaker.

 

After Lunch me and Logan played with his push and walk bunny he loves that thing and seems to be getting the hang on the push button to make it walk.

All that giggling and playing wore Logan out and he's having a lovely sleep now. Hopefully he will be ready for more playing when he wakes up.

Daddy needed to do some work during the afternoon so Logan and I went for a walk around Orpington for some fresh air, he loves to be out and about walking in his pram, we then went to Tesco to put the finishing touches to a special gift for daddy. All the fresh air tired Logan out and he was in bed by 8.15 blisssss.

It's Fridayyyyyy !!

Today has been a chilled day Logan has a 2 and half hour nap this morning while i had a quiet day at work, this afternoon has been taken up with me and Logan having some playing time together at home which has been lovely and i'm enjoying it because the next 2 weeks are going to be crazy with only Monday next week free in Logan's busy diary so although we are always together it won't be quality mummy and Logan time :( but on a good note Logan is back in the sensory room next week the first time since christmas, he has also been accepted into a stay and play group at the phoenix centre which we will go to together every Wednesday afternoon hopfully Logan will make some friends of his own age :) It will also mean if he needs it he has a better chance of getting a place in the additional needs pre-school there so its not all bad.

Long couple of days

We didn't have the chance to write a blog post yesterday as we were out most of the day, Logan's dietician  came to visit us yesterday and gave us a new neocate powder so hopefully that will help with the weight gain although he hasn't gained much weight he has grown he is 10cm's longer now so thats reassuring for us all :) she told us not to worry too much and that he will gain at his own rate, snail rate then lol after that we went to tesco to get great auntie Nicola and great uncle a photo from Logan.

Logan enjoyed walking around the shop he loves it even more when he gets to sit in the trolley hehehe.

Today we went to see his homeopathic dr to disscuss his progress, he was happy and also gave us some medicine for when he has his MMR to stop the reaction to the jab being so server. 

After we treated grandma to a cake and cup of tea in M&S it was lovely :) on the way home Logan had a nice nap in the car.

                                     

Now we are both having a little relax on mummy and daddy's bed waiting for daddy to get in from work.

Weight

Bit disappointed Logan didn't put on much weight only 10g still we are thinking positive at least he didn't loose weight :)

What a day

Logan was awake bright and early this morning 4am so mummy is shattered. We went to Nanny's house to work and Logan enjoyed playing with all the children especially the musical toys

The Grand pops noticed that mummy had a flat tyer which would have been fine until we noticed the special key for the alloy wheels were at home, so grandma had to drive us all the way home after lunch because Logan's health visitor is coming to weight him today grrrrrrr so we had the leave the car at nanny's and daddy is dropping us off at nanny's tomorrow so we can collect the car as we really really next it all fixed by next week, lets hope me and Logan have a restful rest of the afternoon :)

Not Much

Not much to report today. We stayed at home as Logan was suppose to have Physiotherapy but she was poorly so she didn't come, so me and Logan went for a walk around the shops which he loved here are some pictures of our day so far. and a video of Logan and his giggle ball.

 

Day At Home

We had a quiet day today Logan enjoyed eating banana porridge with mummy this morning managing to get it everywhere which he found hilarious ;)

He then had a play, and later in the morning enjoyed a nice cup of milk with his daddy.

The rest of the day was spent, playing, and having cuddles, he had a little toothache in the after noon so extra cuddles were needed, but mummy's special sweet potato cottage pie for tea should sort him out :)

Chilled Evening

We had a lovely time at nanny's house and had a lovely meal cooked for us by Auntie Lizzie and her partner Jon

  

now we are having a chilled evening enjoying some time together and chatting to Tia Lupita to say happy birthday on skype. As well as chatting to Abuelita and Abuelito.

Family

Thank goodness Logan seems a little better today, we are having a family get together as everyone was poorly over christmas and we didn't get the chance. Logan is really looking forward to seeing his Auntie Lizzie, and Great Auntie Margaret and Uncle Ted. He having a nap at the moment to prepare for his crowds heheheh. 

How it all began

All About Logan
​
When we first found out we were expecting a baby back in March 2010 me and my husband were over the moon and quickly got used to the idea of our impending parenthood and for the first 3 months i really did have a text book pregnancy a bit of sickness but other than that nothing out of the ordinary. 3 months came and we eagerly prepapred for the first viewing of our little one, 


Although our baby seemed fine and had a strong heart beat it was also very fast 'nothing to worry about' they said it happens in early pregnancy sometimes we were relieved they booked us in for a repeat scan in 3 weeks time and we went home with the first pictures of our little one they told us our baby would be born 9th November 2010.


Three weeks later we were back but this time there was more they also found 'increased fluid' at the back of our little ones neck. We were told this coupled with the fast heart rate was serious, mostly likely a chromosomal disorder down syndrome or worse Edwards Syndrome or possibly a serious heart defect. the odds were bad and stacked up against us and our baby We were offered a termination there and then we said no (thank god we did) and so they offered us an invasive procedure a little like and early amniocentesis a CVS we went for that and i was taken in that very day. I remember being so scared, scared for our, baby scared what they might find, if i moved even an inch the needle could slip, i held my breath as they took the small amount of fluid from around our baby. It was done now we had to wait it was the longest 3 days of our lives.


We talked about what we would do if the inevitable happened and our little one had a serious disorder, we decided that if they discovered a serious disorder that would mean our baby lived a sort and hard life we wouldn't put they or us through it it was the hardest decision we ever made.


Three days later the result arrived 'all normal' i actually asked 'are you sure your sure' the lady laughed and said 'absolutely positive chromosome all normal' she also asked if we would like to know if it was a boy or a girl well durhh of course i did so at 18 weeks pregnant we wound out we were having a little boy and from that moment on he was a fighter :)


I became very sick and vomited morning noon and night but our little man seemed ok and he was now bouncing around inside me, at 21 weeks we went for another scan this time a specialist scan to check out little boys heart and to do his anomaly scan. The scan revealed a potentially serious heat condition but they assured us if he was born in a specialist unit they could operate they had a 90% success rate and did this type of operation as 'routine' we were upset but also happy it could be fixed by this point we were prepared for anything our little one liked to surprise us and that he did we went for the anomaly scan next 2 arms, 2 legs, everything seemed there and growing well despite the heart issues, that was all except his right kidney, yes out little mystery boy only had the one kidney, but he seemed to be coping very well with just one and we were reminding that many people live totally normal lives with just one kidney.


So we decided with no known link between out little boys issues that we would weather the storm and keep our little one. 


As the pregnancy progressed i went for regular scans to check our little ones progress all seemed ok apart from my constant sickness which was now stopping me from eating much at all the baby was growing well, that was until i went for a scan at 30 weeks he seemed to have stop growing and was falling off the growth chart i was refereed to st thomas hospital in Lambeth which is where our little boy would be born, they had some of the countries best Heart Surgeons and Cardiologist there children came from all over the country to be treated there, it would be a hospital that we would get to know very very well 


On the 20th September 2010 i went for my booking appointment and scan at st thomas' a get to know the midwives and book in for my induction to insure he was born in the right place to meet his needs, the midwives were lovely and we were booked in for the end of October we went off for our scan i was being sick in a bucket in the hospital i was having a particularly bad day and had a killer headache.


The consultant was fairly happy but as i was so sick and our baby's heart rate was fast she wanted a continuos scan done there at the hospital so we had an up-to date one. I went to the day assessment unit and was now so sick i could barley sit up we waited for 5 hours in the waiting room to do the test by the time they did it i was dehydrated and our little boys heart beat was going up and down like a yo-yo i was admitted and given fluids in the end it took 5 bags to re-hydrate me. The baby's heart rate improved but not enough they weren't happy so the consultant was called, it was decided they couldn't wait any longer and so at 33weeks on the 21st September 2010 at 1.35pm via cesarean section our beautiful son Logan Ruiz Aguilar was born weighing 1.5kg (3lb 3oz) and now was when they real fight began.

Logan couldn't breath on his own and was intubated at birth, he was small but perfect they moved him to the NICU where he was settled in daddy never left his side a wonderful nurse Jenny looked after Logan and as i recovered from surgery the full extent of Logan's heart condition was being assessed but a team of cardiologist, unfortunately the drs fears were confirmed Logan needed heart surgery ​​but for now they put him on some medication to keep his heart stable as night came it became obvious to the nurses and drs that Logans heart wasn't the only worry, he hasn't pooed and his tummy was becoming very descended tests were done and we were given some blowing news Logan had malrotation a potentially life therating gut condition in which the whole of Logans bowel had formed and settled back to front we were devastated we were told by the surgeon the surgery would be long and Logan was week but they would do all they could to help him we were warned that he may loose lots of bowel but we agreed to the operation Logan would die without it so at less that 24 hours old Logan had his first major surgery, it took hours but it felt like days for us amazingly Logan made it, he was left with a stoma (a small piece of bowel left outside of his body) but his gut was healthy and he lost very very little all this was good news in time his stoma would be reversed and he should have a healthy, normal gut system but that was a long way ahead of us his gut would need to rest for months we were told it was most likly we would go home with the stoma, we didn't care we were just happy he was strong enough to make it. 

​​Logan grew stronger quicker over the next few days as he did he fought his intubation so for the first time at a few days old logan was able to breath on his own, he did well and was off all help by the end of that day, we were ecstatic it seems weird but it was lovely to see his mouth properly we had never seen his mouth without the tube, however it wasn't to last long the line that had been put into Logans belly button was no longer viable for his drugs and fluids and however much they tried they couldn't get a line into Logan so for the second time in a week he was Intubated and taken back down to surgery to place a special line directly into his chest more worry for us but Logan came back from it like nothing had happened. 

​​This time the tube stayed in as Logan heart became more unstable, he was given more drugs to try and allow him a few days but it didn't work and so for the third time in two weeks Logan went back to surgery this time for the second major operation in his small life it had an 80% success rate but 20% mortality we tried not to think of the 20% our boy was a fighter and defied all odds we knew he would make it Logan would spend the night in the intensive care unit at the children's hospital as he would be too fragile to move, we kissed him goodbye and put all our trust in the heart surgeons its the hardest thing to out all our trust in complete strangers when they are dealing with the most precious thing in your life but again we knew he would die without this operation this was giving him the best start. Logan was in surgery for 3 hours all sorts of things go through your head the wait in agonising, but we were given the phone call to say the surgery had gone very well Logan was stable but the next 24 hours were critical for him. 

The nurses were lovely and very caring in the PICU but they were not used to tiny babies like Logan so as Logan was nice and stable we was moved back to his first 'home' the NICU were he soon settled back in.


Logan progressed well and within 2 days was breathing on his own he also found his lungs too screaming for milk, but he was still not allowed to eat so instead was given nutrition through his new line TPN (Total parenteral nutrition) as his tummy still was too sensitive to have anything else this kept Logan healthy but didn't stop him feeling hungry. But he didn't have to wait long and about 4 days later he had his first taste of milk 1ml every 3 hours heheh i still laugh now 1ml still he really enjoyed it.

Logan came on leaps and bounds and was moved out of the NICU and into HDU where mummy and daddy had a lot more freedom with him, and Logan became very used to lots of cuddles ;) his milk was being increased and his TPN was stopped and replace with just clear fluids he did so well he was moved again to SCBU the dr's even dared to talk about him going home.

Then things began to deteriorate a little Logan's routine 'heal prick' test came back and it showed he had an under active tyroid Logan was to be seen and checked over by a endocrinologist , but that wasn't all, he was also struggling to maintain his blood sugar level they were becoming dangerously low and unfortunately he had to be put back onto TPN and was moved back to HDU we were devastated so close to going home and now a massive blow, but Logan took it all in his stride and began becoming more alert and responsive to us.


Dr Hulse (endocrinologist) came to visit us and actually gave us good news although Logan did at the moment have an under active thyroid he felt that this would not be a permanent thing for Logan he had had a hard ride and the sterile solution they used in surgery and sent his thyroid to sleep so he felt as Logan got bigger and stronger he would no longer need medication for the condition, but for now Logan was put on Thyroxin to control his thyroid.

The next few months were spent trying to get Logan home but unfortunately due to not controlling his blood sugars and tolerating very little milk he had to stay in hospital. In Febuary 2011 Logan had his stoma reversed and our little man had his 3rd major surgery, but he was a trooper and the next day was out of intensive care and back in HDU amazing !!!!!

and he really did come on, he tolerated his milk, pooed lots and maintained his blood sugars finally after 3 broviac he was wire free and he was able to get his first taste of being off the unit we took him for walks around the hospital, at first he hated it too much hustle and bustle he was used to his quiet room but as the weeks went by we loved to go out with me and his grandma at lunch times.

Finally Logan was well enough to be transferred to our local hospital and so after 51/2 months of being at St Thomas' we said goodbye although there was nothing more i wanted than to take Logan home i was unset and very nervous to leave all the DRs nurses and friends there they knew Logan and all his drs were there if anything went wrong but as we were assured Logan was well now and didn't need the specialist care there were there if he needed them (so far he hasn't :)) our local was small and not as intence and in a way that scared me, but we soon settled in and it was a dream to be at home it was so much closers for us. 


Things were put in place for Logan to come home this was really just a 'stop gap' he didn't need hospital care anymore, but he was still NG tube fed and me and his daddy needed to learn how to replace and deal with that.


The week before we went on March 1st 2011 we found out Logan had a serious eye condition Nystagmas more blows, his sight was most likely "very compromised" but they needed to do more test so we had to wait and see. We didn't let it spoil the fact that we were so close to having Logan home and we put all our energy into that.


Finally Mid March Logan came home 6 months after he was born we were over the moon our little man at home were he belonged :)

Logan has been investigated by a genetics expert and has under gone many test but they still have no idea what happened to him, they do know that he has some sort of Genetic disorder they have told us they may never know they have never seen a child that display as Logan did, Nether they or us know what the future holds for Logan we hope one we will find out for Logan and our sakes until then we just enjoy Logan for all the joy, fun wonderfully brave little boy that he is.