* Author Topic: Diary of a very happy mammy of 3 miracles  (Read 22401 times)

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Offline Shamrock.

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Diary of a very busy but very happy working mammy
« Reply #30 on: 23/06/18, 14:42 »
Saturday 23rd June 2018

P is 5 Years 3 1/2 months old
R is 4 Years and almost 3 months old
35 Weeks 2 Days Pregnant

Thankfully no more bleeds since I was discharged from hospital on 12th June but I have shingles at the moment  :-\  I noticed an itchy rash on my back last Sunday which has gotten progressively more itchy, sore and painful. I went to my GP on Tuesday and he diagnosed shingles and prescribed Valtrex which is antiviral medication. Hopefully I won't suffer with this for much longer because it is awful. It is stopping me fully enjoying my last bit of time before the new baby comes as I am in constant pain and discomfort  :-\

From today there are only 12 sleeps to my scheduled c-section date of 5th July. I can't wait to meet my little boy but I also still don't feel ready  ::)

On Wednesday 20th June I brought P to visit the primary school she will be starting at on 30th August. The school had organised for parents and new junior infants to visit. P met her teacher Miss G and saw her classroom and where she will do sports and the yard she will be playing in. I got information about what workbooks she will need  and what I need to buy for her uniform. I can't believe my little girl is starting 'big' school .... It seems like only yesterday she was a helpless newborn  :)


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    Offline Shamrock.

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    « Reply #31 on: 6/07/18, 08:46 »
    Friday 6th July 2018

    P is 5 years 4 months old
    R is 4 years 3 1/2 months old
    37 weeks 1 Day Pregnant

    Iíve reached the hugely significant milestone of full term in this pregnancy  :)

     ^milestone^  ^milestone^ ^milestone^ ^milestone^ ^milestone^ ^milestone^

    A few weeks ago I really did not think I would get this far. Our little boy was originally supposed to be born on 19th July at 39 weeks, then after the bleeds I had his c-section date was brought forward to yesterday, 5th July but because of me developing shingles his birthdate is now set for 16th July as there was a risk of me developing meningitis if I got a spinal block anesthetic injection while I had an active shingles rash on my back  :o

    So if I hadnít gotten shingles I would have given birth yesterday  :o Iím glad I didnít have him yesterday though because the longer he stays inside the more chance he has to grow bigger and stronger and the better it will be for his breathing when he is born meaning a lesser risk of him having to go to the special care baby unit or be in an incubator like R was when he was born.

    I have to be admitted to the hospital for observation from next Monday 9th July and my c-section is scheduled for Monday 16th July so I will have a week in hospital on total bed rest before he is born. I am happy with the idea of having a good rest before he comes and being constantly monitored in hospital but I will really miss DH, P and R  :-\

    We have everything set up and ready to go for his arrival now  :)
    - We have a cot bed set up in Ps room and a cot set up downstairs both with baby monitors installed and a crib that can be moved around so he will have a multitude of sleeping options day and night  :)

    - I have tried out his car seat in the car on the isofix in the middle of P and Rs high back boosters and the 3 of them will fit in a row  :) I have decided to put the baby in the middle of P and R in the car to hopefully prevent rows over who is going to sit beside him even though getting the baby in and out of the car might be slightly more awkward. (We bought a 7 seater people carrier last October with 3 full seats in the back)  :)

    - I have all his clothes washed and ready to go - most of which are clothes I bought or got as gifts for R when he was a newborn.

    - I also have changing units set up both upstairs and downstairs and I have stocked up on nappies and wipes  :)

    - I have also bought all the attachments and inserts etc I will need for our Out and About buggy and a new bouncer for him to sit in  :)

    So I think I have all the practical stuff organized :)

    I canít wait to meet our little boy now. Iím dying to see what he looks like. If heís anything like P was a newborn he will be super cute  :) Please let him get here to us safely  ^pray^


    Update:
    Iím in bed at the moment resting up coz our childminder is here and P came into me to ask if she could do maths on my iPad. I bought a maths game for her a few weeks ago because she loved the free trial of it we had. You should see her doing the maths....she is brilliant at it  :) She can add and subtract and count and put items in order of size and in patterns etc  :) She hasnít yet formally learned any of that kind of stuff in school but she just knows how to do it. There are 10 levels in the maths app and she has already totally mastered 8 of the levels and is in the middle of Level 9.  I think she is extremely intelligent for her age  :)

    She is also very athletic - sheís brilliant at any sports she has tried so far like ballet, rugby and football and can run really fast. Sheís naturally very competitive and wants to be first or best at everything without me or DH saying anything to encourage it  :)

    She is also absolutely beautiful with her big dark brown eyes and sallow skin and perfect features  :)

    She has it all really  ::) I think Penny at Serum picked two great donors for us now all I have to is nurture all of her natural talents :)

    Offline Shamrock.

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    « Reply #32 on: 26/07/18, 10:39 »
    Monday 16th July 2018 - 38 Weeks 4 Days Pregnant

    P is 5 Years, 4 months Old
    R is 4 Years, 3.5 months Old 
    J is born 😊

    BIRTH STORY:

    Here is what I can remember about the birth of my son J who was born by elective cesarian section on 16th July 2018 at 38 weeks 4 days pregnant:

    I was admitted into hospital an in-patient for one week before my c-section date for observation due to a couple of bleeds I had at 32 weeks pregnant and due to me comtracting shingles at 34 weeks pregnant.

    On the morning of 16th July Dr M came to see me on the ward and she told me she had been given an afternoon slot in the theatre for my c-section and it would probably be about 2pm when I would be called up.

    DH arrived from home about 10:30am and we passed the time while waiting by chatting amongst ourselves and to another woman on the ward.

    During the morning my midwife went through a medical checklist with me and she checked my blood pressure etc and listened to the baby's heartbeat with a doppler.

    About 1pm I was given some tablets to take which I was told were to nueteralize the acid in my tummy.

    Just after 2pm the midwife came to tell us that they were ready for us in the theatre so I changed into a blue operating gown and I was given a small bottle of liquid to drink which tasted absolutely horrible.  We walked upstairs to the theatre area with the midwife. DH carried the small bag I had prepared for the baby containing a vest, babygro, nappy and hat.

    The midwife from the ward handed us over to the theatre midwife who asked us to sit in a small waiting room. It was a different waiting room (much smaller) than where we waited before P and Rs sections. At this stage I was very excited and very nervous at the same time. I could feel my heart beating very fast and I felt a bit nauseous.

    We were only left in the waiting room for about 5 minutes then the midwife came and asked us to sit on chairs in the corridor just outside the theatre. She gave DH green scrubs to put on over his clothes. Dr M passed by in her scrubs and said she would see us in theatre in a few minutes. My excitement/nervousness was through the roof at this stage.

    Next the midwife came out again to bring me in to the theatre and asked DH to wait outside until they had me prepped. I gave DH a kiss and followed the midwife. The theatre she brought me into was different to one I gave birth to P and R in...it was much smaller.

    I was asked to sit on the edge of the operating bed and I was introduced to the anesthetist who was a very nice Asian man. He explained how he would do the spinal block anesthetic and also told me that because I had recently had shingles that he would not be giving me the usual pain relief in with the spinal block as there was a risk it could reactivate the shingles virus and instead I would be connected to a morphine drip which I could control myself for pain relief immediately after the c-section.

    Dr M came over to say hello and remarked that I looked like I wanted to run away   ...She wasnít far wrong because nervousness had completely taken over excitement by then and I was terrified...I think it was just from being in a theatre wide awake seeing all the medical equipment and instruments and knowing you are just about to be cut open 

    The anesthetist did the spinal block injection into my back which didnít hurt but just stung a little. I was terrified that I hadnít been given enough anesthetic because my legs just felt like they had pins and needles rather than being completely numb but he reassured me that the anesthetic was working perfectly on me. He sprayed very cold liquid on my arm which I could feel then sprayed it on my tummy and I couldnít feel it.

    Someone pinned a drape up in front of my face and Dr M said she was going to start the c-section. She asked if I could feel anything sharp and I said no. I could feel my heart beating a million beats a minute and I felt very nauseous. Someone put liquid into the cannula on the back of my hand which they said was for my blood pressure which must have gone really high.

    Next thing I remember is DH coming in and sitting beside my head and I held his hand and squeezed it tight. I was told I would feel pulling and tugging sensations which I did. I got a terrible headache right across the front of my forehead and I think they ssid it was something got to do with my blood pressure either being too high or too low.

    Then Dr M said "The head is born and the baby has a lovely head of dark hair"  Then they lowered the drape from the front of my face and DH and I saw Dr M lifting our little boy out of my tummy   It was amazing to see...an image I will never forget ...a life changing moment 

    They brought baby J towards me to show him to me and I tried to put my arms out to take him but the nurse held my arms down. They told me after that I couldn't take him at that stage because the area below the drape was sterile and I couldn't touch it.

    They cut the cord and brought J over to the side to weigh him and quickly clean him, I could hear him bawling crying and DH went over to watch what they were doing. Then they brought him back to me and put him inside my gown onto my chest for skin to skin. He was wearing just a nappy and a tiny blue knitted hat. It was amazing to finally have him on top of me snuggling into me 

    After about 5 minutes of skin to skin the midwife said she needed to take J to the recovery room to put him into an incubator because he was grunting a little. They asked DH to go to the recovery room with them and they finished stitching me up then I was moved to the recovery room too.

    J was born at 2:38pm. He weighed exactly 7lbs (3.180kg). His Apgar score at 1 minute was 9 and at 5 minutes was 10.

    When I was brought into the recovery room J was in an incubator and my trolley bed was initially at the other end of the room but they moved me up beside him as soon as they moved another woman out of the room. When I came into the recovery room I could see DH down beside the incubator looking at J and he looked totally in love with him already. When they moved my bed up beside the incubator I could see that J was lying on his tummy and already moving his head around and looking around.

    He only needed to be in the incubator for about 30 minutes then they took him out and immediately put him inside my hospital gown for skin to skin again.

    Like DH I was immediately totally in love with him. He might not have our genetic material but he is 100% our son  :)

    Offline Shamrock.

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    « Reply #33 on: 26/07/18, 19:44 »
    Thursday 26th July 2018

    P is 5 Years 4.5 Months Old
    R is 4 Years 4 Months Old
    J is 10 Days Old

    So much drama has happened to me in the last few days I hardly know where to begin with this update. I am writing this in the coronary intensive care unit of our local hospital where I have been an inpatient since Tuesday  :o

    I spent 5 nights in the maternity hospital after the c-section and J and I came home on Saturday 21st July. I was delighted to be getting home after spending 12 nights in total in the hospital. I had missed P and R and DH terribly and I was looking forward to finally starting to enjoy my maternity leave and to having J safely home with me. I felt fine leaving the maternity hospital..I was just sore where the c-section incision was and my feet were very bloated from fluid retention after the c-section which I was told was normal.

    Our neighbours that we are friends with made a big fuss of Js homecoming and they had decorated the front of our house with blue balloons and banners to welcome him home.

    We had a steady stream of visitors over the next few days and I thoroughly enjoyed showing J off and everyone who met him was smitten with his cuteness.

    P was instantly brilliant with him..she was like a little mini mammy getting things for him, constantly kissing and cuddling him and declaring that we had gotten the cutest baby in the world  :) R on the other hand didn't really take much notice of him but did share his teddies with him and give him a few kisses. 

    DH was a brilliant help as usual and offered to do all the night feeds for the first couple of nights so that I could recuperate as much as possible. We also still have our childminder T coming in to our house Monday to Friday to help with the kids so I was getting a lot of support and was not under too much pressure.

    Now to the drama:

    I felt fine coming home Saturday and slept ok on Saturday night with DH doing the night feeds. Sunday I also felt fine but on Sunday night I was very uncomfortable in bed. I felt a bit breathless and my tummy was sore at the c-section incision but also above it right up to under my boobs. On Monday I felt a bit breathless during the day and a lot more breathless that night while lying down and again my tummy was sore and I noticed my feet were still very swollen and my face was too.

    On Tuesday morning when J was 8 days old the breathlessness was worse but I was trying to ignore it and just get on with things. I made an appointment to get my hair done because my grey roots were driving me mad. My appointment was for 12pm and the public health nurse had phoned me and arranged to call to our house at 2:30pm to do the usual checks they do on mothers and newborns when they are discharged from hospital.

    As I'm not supposed to drive for 6 weeks after the c-section DH drove me into town for my hair appointment and I walked two minutes from where he dropped me off to the hairdressers and by the time I got there I was completely out at breath. While I was getting my hair done I texted DH and told him that I thought I needed to go to the doctors because of my breathing but that I would wait to see the public health nurse for her opinion. After my hair appointment I walked the two minutes back again to where DH was picking me up and I was really struggling to catch my breath and had to take huge gasps every minute. DH dropped me home just in time to meet the public health nurse and as soon as she heard my breathing she told me to ring the gps immediately for an appointment.

    When I described my symptoms to the gp receptionist she told me to come in asap. DH drove me there and we had to bring J with us as our childminder was gone out with P and R. When we got to the gps I was immediately brought into a treatment room and seen by a nurse who checked my blood pressure and pulse and called the doctor in.
    The doctor also checked my pulse and listened to my heart and put me on an oxygen mask and put in a cannula and attached a saline drip and then said he was going to phone an ambulance as my pulse was very weak (only around 35), my blood pressure was high and my breathing was very laboured.

    The ambulance arrived in less than 10 minutes and they brought me to the local hospital with sirens wailing and blue lights flashing  :o DH had to bring J home to our child minder who was back by then before he could follow me up to the hospital.

    When I got to the hospital I was brought straight into the A&E resus area and immediately surrounded by doctors and nurses and attached to loads of monitors and I had another cannula put in and bloods taken.

    The heart rate monitor I was attached to showed my heart rate was only 33bpm so they were concerned that I could have a blood clot from the c-section or my heart was just about to stop :o A normal heart rate is between 60 and 100bpm and even at that you would have to be very fit to have a heart rate of 60bpm. I was asked if I was an athlete and I said definitely not as I hadnít done any sort of exercise at all whilst I was pregnant and before that it was just mostly walking. They stuck big pads to my chest which I think were to use encase they needed to shock my heart back to life with a defibrillator  :o

    I was sent for a ct scan which ruled out a blood clot but showed I had some fluid on my lungs. It hurt like hell when the dye for the ct scan was pumped into the cannula in my hand  :( As my heart rate was still very low a couple of hours after arriving at A&E (not rising above 40bpm) and they were concerned about my feet being very swollen I was admitted to the coronary intensive care unit. The unit only has 4 beds and there are at least 3 specalist nurses working in it 24 hours a day. While I was there I was attached to a heart rate monitor at all times and constantly had my blood pressure and oxygen levels checked. I was given diuretic tablets to reduce the swelling in my feet. (I was weighed twice a day in hospital and I lost 7lbs in 3 days from getting rid of excess fluid)

    The first night I was there (Tues) I had blood taken at about 1am then I was woken by the nurse at about 4am because she wanted to do an ecg trace of my heart then she said she was going to call a doctor up to see me so the registrar I had seen earlier in A&E arrived at about 4:15am and he told me there were enzymes (Troponin 0.49 pro-BNP 825) raised in my blood that they would normally only see in someone who had heart failure  :o ???

    On Wednesday morning the consultant cardiologist Dr F came to see me and I was sent for a heart echo which is a detailed ultrasound scan of the heart. The sonographer took about 100 pictures of my heart from all angles. The scan showed my heart was slightly enlarged but appeared to be functioning fine albeit a bit sluggish  :o

    On Wednesday evening I was resting in bed after talking to my sister on the phone and I saw on the heart monitor that my heartrate was only 38bpm when suddenly I felt very tight in my chest and I couldnít catch my breath again. I couldnít speak to call the nurse so I raised my hand and luckily the nurse saw me and came over to me. Someone called for a doctor to come to see me and the nurse did an ecg trace of my heart. The registrar came to see me again and he examined me and reviewed the ecg and said he couldnít find a reason for the episode. I was given half a Xanax and I calmed down and my breathing went back to normal  ???

    Thursday morning the nurse told me that my heartrate had dropped to 35bpm during the night. The cardiologist Dr F came to see me again and told me that they were going to send me by cardiology ambulance to a different hospital in Dublin to have an angiogram (cardiac catheterization) done to check for blockages in the arteries of my heart  :o DH came with me in the back of the ambulance and we had a heart specialist paramedic with us constantly checking my blood pressure etc and I was attached to a heart monitor. We drove at normal speed until we hit traffic then the ambulance driver put on the sirens and blue flashing lights again and we raced through the traffic.

    At the Dublin hospital I was seen quickly and brought into what looked like an operating theatre for the angiogram. During an angiogram the cardiology doctors pass a tube into the artery in your wrist and it goes up your arm inside your artery into your heart and dye is injected into it to look at your arteries and inside your heart to check for blockages. If there are any blockages they can immediately put stents in to unblock them   :o  Thankfully my angiogram didn't show any blockages but it did show the muscles of my heart were slower than normal. The procedure itself wasn't the most pleasant thing I've ever had done but I was sedated so I was conscious but kind of out of it so not fully aware of what was happening. After the procedure I was kept in recovery for a while then the paramedics from the ambulance I was brought to Dublin in came back to bring me back to the locsl hospital. Poor DH was in waiting room all the time and he said he was very worried about me because it took so long.

    Offline Shamrock.

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    « Reply #34 on: 12/08/18, 09:08 »
    Sunday 12th August 2018

    P is 5 Years 5 Months Old
    R is 4 Years 4.5 Months Old
    J is 4 Weeks Old Tommorow

    I was allowed home from hospital on Friday 27th July after spending 3 nights in the coronary intensive care unit (CCU). My heart rate was still low when I was discharged (I think around 45 to 50bpm) but they needed a bed in the unit for someone else,  all my tests had come back relatively good and I was getting very upset about being away from P, R and J. Children were unnderstandibly not allowed to visit the CCU because of the very ill patients in it so I had only seen them once on the Thursday evening when DH had brought them all into a waiting room beside the CCU for a few minutes to see me.

    I was diagnosed with peripartum cardiomyopathy which is basically heart failure brought on by pregnancy. Dr Google says it is a very rare complication of pregnancy which most often occurs in the weeks after giving birth. The damage to your heart can be permanent or you can make a full recovery - I donít know which category I fit into yet  ??? Future pregnancies need to be avoided because there is a 1 in 5 chance of maternal death if you become pregnant again and develop the heart problems again  :o So we definitely will never be going back to try again with our remaining frozen embryos!

    Since coming home I've been taking it easy but still carrying on with normal family life as much as possible. I've felt a bit tight in my chest a few times which I've tried to ignore and thankfully I haven't been short of breath again. Mentally I'm still trying to process it all and be strong and just get on with things. I feel lucky to be alive so I just want to enjoy being a mammy. I feel like it's a bit of a wake up call for me not to take anything in life for granted.

    I have a follow up appointment tommorow morning (13th August) with the cardiologist in our local hospital and I've also made an appointment for Monday 20th August to see a private consultant cardiologist in Dublin...I am paying for private health insurance for years so I want a second opinion from someone privately. I asked my gp to refer me to him.

    Anyhow, baby J is doing great. He is totally oblivious to everything his mammy has been through in the last few months and he is thriving. When he was born he fitted into up to 7.5lbs babygros for about a week then I had him in up to 10lbs babygros and now in the last few days I have had to move him into 0-3 month old ones  :) I can literally see him growing!

    He has been very alert since birth but in the last day or two he has become even more alert when he is awake and he can now make eye contact and look at things directly. He hasn't had a real smile yet but I've seen a few of his reflex smiles and they are adorable. I know babies don't start to give real smiles until they are between 6 and 8 weeks old so hopefully we don't have too much longer to wait for those  :)

    We are bottle feeding him formula and he is now going 4 hours between feeds. At the moment he gets his last bottle around 10:30pm and we put him down in his cot around 11:15pm. He gets his next bottle at around 3am and then at around 7am. He sleeps great during the day and he comes alive in the evenings from about 7:30pm to bedtime and has to held and fed a good bit then.

    P is absolutely brilliant with him. She kisses him and tells him she loves him constantly. She stands beside the changing unit and comforts him every time I change his nappy and gets me things I need. I have given her the job of picking out what J is going to wear every day and she loves that  :) She has been a bit difficult to manage and having mega melt downs in the last few days but it's hard to know if that's just normal threenager behaviour or related to Js arrival  ???

    R didn't pay much attention to J in the beginning  but in the last few days he has been bonding with him by singing nursery rhymes to him and making him things. He now draws him pictures and makes him cards and things to play with  :) In the first two weeks after we brought J home R had a few wee accidents even though he has been fully toilet trained for a year which I presume was his way of protesting about the new member of the family and probably the upset of me being in hospital so much. Thankfully he is back to being completely dry again now.

    We have brought J on a number of family days out since I came home from hospital and he has been absolutely no bother at all. I'm a lot more relaxed this time about going places with a newborn. We have been to two local festivals with him and yesterday we all spent the day out in a heritage park. I've also brought him on a lunch date to meet up with my friend G and I've brought him around all the shops in town.

    Offline Shamrock.

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    « Reply #35 on: 21/08/18, 21:45 »
    Tuesday 21st August 2018

    P is 5 Years 5 Months Old
    R is 4 Years 4.5 Months Old
    J is 5 Weeks, 1 Day Old

    Day 2 of Js hospital stay

    Iíve just had yet another hospital stay ...this time for baby J  :(. (I counted that up to today Iíve spent 27 nights in hospital since 1st June  >:()

    Since J was about 3 weeks old he has been snoring at night...a different kind of snoring sound than an adult would make  ??? At first I thought it might have been caused by him having a blocked nose from a cold but I quickly realized he didnít have a cold. Then I thought maybe it was just normal for some small babies to snore or make strange noises while asleep. Anyhow initially I wasnít overly worried about it but the snoring noise got progressively louder over the course of 2 weeks and it was also happening while he was asleep during the day and then on Sunday evening I noticed he was making a funny noise while breathing while awake too even though he seemed to me to be breathing fine so yesterday morning (Monday) I made an appointment for him to see the gp about it.

    The gp said it was stridor which is noisy breathing and that it needed to be investigated. She said I needed to bring J immediately to the paediatric unit in the local hospital and she wrote me a referral letter. (I had my appointment to see the private cardiologist in Dublin so I had to ring to postpone that to a later date)

    Baby J was admitted into the hospital and I stayed overnight with him. I stayed beside his cot on the worlds most uncomfortable pull out chair bed.  J was attached to a heart rate and oxygen monitor and his oxygen levels kept dropping during the night and then going up again. With everything going on I got less than an hours broken sleep in total all night and I was absolutely exhausted. I was very worried about him that he might stop breathing or turn blue  :(

    This morning a consultant came to examine J and said that he needs to be transferred to a childrenís hospital in Dublin for tests to determine what is causing the stridor and dips in his oxygen levels. He said they will put a camera through his tiny nose and down his throat to see what is happening  :o

    He will be transferred by ambulance to the Dublin hospital but there is no suitable bed available for him until tomorrow so he is staying in the local hospital again tonight. DH is staying with him tonight so that I can go home to P and R for a night before the logistical nightmare of trying to balance their needs and getting them minded as necessary and being in Dublin for J begins :(

    Please let my baby be ok  ^pray^

    Offline Shamrock.

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    « Reply #36 on: 25/08/18, 06:10 »
    Saturday 25th August 2018

    J is 5 Weeks 5 Days Old
    Day 6 of Js hospital stay

    I'm awake at 6am crying and worrying and stressed out. I'm alone in the hospital parents accommodation with nobody to talk to. I think it's all just finally hit me. I'm worried about J and also upset about missing P and R and I don't know how we are going to manage everything when they start back to school next week and J will most probably still be here in hospital more than an hour drive away from home  :(

    Someone (a parent) has to stay with J all the time. I want to be here with him but I also want to be home with P and R especially for Ps big milestone of starting primary school. And if things weren't bad enough our child minder T who we have for the last 2 years has found out unexpectedly that she has to do something from 10th September and she can't work for us anymore. So we will have no child minder and we have absolutely no family help available to us so I don't even know how we are going to get the kids to and from school in Sept if J is still in hospital then  :(

    DH is trying to keep his job going and meet his work targets so he is under pressure trying to be here for J and me, trying to be at home for P and R and trying to manage work commitments so I donít want to burden him further by telling him how upset I am  :-\

    UPDATE
    I suppose I should backtrack and try and record what's been going on the last few days:

    Baby J spent Monday and Tues in our local hospital. I stayed overnight with him on Monday night and DH stayed with him on Tuesday night.  On Wednesday we were told that a suitable bed was available for J in the children's hospital in Dublin. We were told it could take hours to arrange an ambulance transfer and the available bed could be gone by then so we opted to drive J ourselves. J was admitted to the Nazareth ward which seems to be mostly just for small babies.

    On Wednesday evening J had a chest X-ray done and on Thursday morning he had a tiny camera put through his nose and down into his throat by the senior ENT consultant (Mr R) who then diagnosed that J has Laryngomalacia which is a congenital condition where the babyís larynx is not developed properly and it partially blocks the airways causing a noise when the baby exhales. The noisy breathing it causes is called stridor.

    Since being admitted to hospital on Monday J has been connected to a machine to monitor his heartrate and oxygen levels and the machine is set to alarm if his oxygen levels fall below 90%. Anyhow the machine has been constantly beeping as his oxygen levels keep falling but luckily he is able to bring his levels back up again himself by taking a breath of air. I was told that he only needs to be given oxygen if the levels donít resolve by themselves  ??? He has been given a small amount of oxygen twice so far.

    On Thursday night the respiratory team did a sleep study on J where they attached him to a sensitive oxygen and heartrate monitor which was recording each time the oxygen levels fell by a certain % (desaturations). He was put on the monitor at nighttime because that is when he would have the longest spell of sleep and they needed to monitor him for at least 5 hours.

    On Friday the senior consultant over the respiratory team (ROR) came to see us and told us that the sleep study had shown concerning results. Js oxygen levels had fallen on average 70 times an hour during the night  :o She said that it is of course not good for a babyís development if their oxygen levels keep falling like that. If left untreated it could affect his brain development and heart  :(

    She said they wanted to do a more in-depth advanced sleep study on him to get more information so they did that last night (Friday night). J was attached to a number of different monitors. He had a strap across his chest, one across his abdomen, a probe on his nose and one on each foot. The monitors were attached to a computer and there was a camera recording video images of all all the movements he made. We were told it will take a technician 3 hours to analyze the information from it and it wonít be done until Monday because there are no technicians available at the weekend.

    On both Thursday and Friday a speech and language therapist came to watch how J drinks a bottle and a dietician came to talk to me about the volume of formula he should be drinking. He will be weighed regularly to make sure he is gaining weight well and they might organise more tests for next week to make sure his oxygen levels are ok while he is feeding.

    I have been staying here at the hospital since Wednesday. Luckily I was able to get a single room in the parents accommodation which is located in the hospital. It is only Ä18 a night which is very cheap for Dublin and they provide cereal, bread, milk, tea/coffee etc so that you can make a basic breakfast. Some of the fast food companies and restaurants in the locality donate free food into the parents accommodation as a goodwill gesture for the parents of sick children so Iíve been able to make use of that sometimes. The nurses have kindly offered to do Js middle of the night feed so that I can go upstairs each night and get some rest which is absolutely brilliant. I usually go upstairs around midnight and come back down around 7am.

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    « Reply #37 on: 26/08/18, 21:08 »
    Sunday 26th August 2018

    J is 5 weeks 6 days old
    Day 7 of Js hospital stay

    DH brought P and R to visit yesterday. It was lovely to see them but a hospital full of sick children isnít the most ideal place to bring a very lively 5 and 4 year old as they need space to run free and be allowed to make noise so it was a bit challenging.

    Today DH came to visit by himself so we were able to have a conversation and put a plan in place about how we will manage P starting primary school on Thursday and R starting back to pre-school on Wednesday. We have decided if J is still in hospital I will stay here with him tonight, Monday and Tuesday day and night. DH will get as much work as possible done in his office Monday and Tuesday and on Wednesday morning he will come up to the hospital and I will go home to sort out Ps school uniform and books etc and DH will stay with J Wednesday and Thursday day and night and I will be at home to bring P to school for her first two days.

    I feel happier now we have a plan in place for the week coming at least and tomorrow we will know more about the doctors plan for J when we get the results of Friday nights sleep study.

    J was weighed today and he is now 4.3kg (9lbs 8oz) ...a few days ago he was 4.2kg (9lbs 4 oz) so his weight is heading in the right direction. In the last two days he has increased the volume he is drinking to about 120mls at a time since one of the nurses advised me to use faster flow teats on his bottles.

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    « Reply #38 on: 27/08/18, 22:56 »
    Monday 27th August 2018

    P is 5 years 5 1/2 months old
    R is 4 years 5 months old today
    J is 6 weeks old

    Day 8 of Js hospital stay

    Not good news today  :(  The consultant over the respiratory team came to see me and told me that J needs to have throat surgery because the advanced sleep study from Friday night showed that his oxygen levels are falling very frequently when he is asleep. I asked how many desaturations an hour J had Friday night and he said the lab was still analyzing the study because there was so many instances that it was taking them a long time to do it but he had seen enough from it to be very concerned. He said that putting J on an oxygen cpap machine at night would not be enough and that we basically have no choice but to have surgery on him. He said he would liaise with the ENT team about it.

    A short while later the consultant over the ENT team and his registrar came to see me to tell me that they are going to do the surgery on Wednesday and asked me to sign consent forms :o The surgery is called supraglottoplasty.

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    « Reply #39 on: 30/08/18, 03:49 »
    Thurs 30th August 2018

    J is 6 Weeks 3 Days Old
    Day 11 of Js hospital stay

    J had his throat surgery yesterday and the poor little mite is intensive care now.

    The ENT surgeon said the surgery went fine but we won't know if it will be a success or not until all the swelling etc in Js throat goes down and he is recovered enough for them to be able to do another sleep study on him to monitor his oxygen levels. They have told us that he might still need to wear an oxygen mask when he is asleep even after having surgery but the surgery was absolutely necessary to try to unblock his airways.

    After the surgery yesterday J was struggling to breathe on his own because his throat is very swollen and sore so he had to be intubated and put on a ventilator which was then doing all his breathing for him. We were told it was basically a life support machine  :-\ :'( He was also sedated and on a morphine pump to make sure he wasn't in any pain. It was absolutely heartbreaking to see him like that. I just wanted to hold him in my arms and cuddle him but I couldn't.

    This morning they have started to reduce his dependence on the ventilator and later on they are going to try taking him off it to see how he will do breathing on his own. They told us they may need to intubate him again if he doesn't breathe well on his own. They are also going to slowly reduce his level of sedation and try feeding him through a tube to see how he gets on.

    Yesterday when he was going in for the surgery myself and DH went down to the theatre area with him and the theatre nurse asked if we wanted her to take him into theatre or if one of us wanted to so I said I did. I was then allowed to carry him in my arms into the theatre and I met the anaethetist who explained how he was going to put J to sleep by putting a mask over his tiny face and pumping anesthetic medication into it. I was allowed to hold him until he went to sleep and then the nurses helped me to put him lying on the operating bed. It was awful but I'm glad I did it because I wanted my face to be the last thing he saw before the surgery. I was then ushered out of the theatre and brought back to where DH was waiting. J was gone from us for almost 4 hours before we were allowed into the intensive care unit to see him.

    I drove home last night because P started in primary school today and I wanted to be there with her for the very important milestone in her life. DH stayed at the hospital with J.