Me and Romans 8 month journey.

Here is our story on how the last 18 months have been starting in the beginning(it is quite long!)

I fell pregnant and at my first scan they found roman had a cystic hygroma,me and my partner went to fetal medicine where they kept an eye on Romans development,they noticed how small he was growing and endlessly offered  an amino,I never took the offer because of the small risk of miscarriage.At the 18 week scan Romans  heart problems were found and also the gender,as we thought he could have turners syndrome before hand we were told it was a slim chance of that as more things were being found. I had an amino after knowing we needed answers and At 25 weeks Roman was diagnosed with wHS deletion of 16.1 to 16.3,as me and my partner only being young parents to be it was very hard to come to terms with all these problem but we was not willing to give up on our  baby no matter how complex he would have been, the hardest part was knowing the unknown of what we would expect. Many consultants told us worse case scenario and every scan we went to we never had good news,many woman and partners have a positive experience and no worries of their child’s health during pregnancy but for us it was a different story it was soul-destroying knowing that our child was not in great health and that we could lose him at anytime in the pregnancy,my fear was a still birth as many times I was told I was at high risk but we fought far.At 35 weeks I noticed Roman was hardly moving so I went to triage and it turns out he was desating one after the other in me,my heart sank as we thought this was really not good,aswell as being told there was small chance of him making it after birth.I had emergency c section at 35weeks and Roman was 3lb bang on,the moment I saw him I sobbed because he was so beautiful,my partner also saw him and we was both took back by his beauty.I didn’t get to spend time with him as they whizzed him of to neonatal unit,2 weeks went on Roman was still in neonatal and he picked up sepsis,he had to be vented and was lucky to fight through that ,my partner couldnt come as much as me because he works but I was there everyday without fail seeing to him and his care.as the weeks went on he was thriving and growing in neonatal untill 8 weeks after he was born he fell extremely ill with a bacterial chest infection requiring full oxygen on ventilator,our hearts were crushed as we knew he was not doing good at all,having to leave him every night praying you don’t get that bad phone call and seeing the fresh Moses basket and wardrobes we never used for him destroyed us as we thought we would never get to use them. They attempted him on and of vent it being unsuccessful the first few times untill he was on high flow.A day after being on high flow we get that phone call no parent wants to hear, that he has aspirated and they were struggling to save our little lad,again he ended up on ventilator .As something became better there was always something else to hit us in the face and at this point me and will felt hopeless and pure guilt that we couldn’t help.

Roman fought through all the ventilators and infections in neonatal and when became better one month later was transfferred  to a closer pediatric hospital.He still needed oxygen for a bit and we actually got to stay with him over night which was the best sleepover I’ve ever had! Finally one month after this he was of oxygen and prepared to go home.

Roman  has now been home for 5 months but we still have had a lot of hospital stays due to his chest and seizures.Even  with all his conditions he has still fought to be here today and has proven many consultants wrong,the fact he had two strong parents made him a stronger little boy and a lot of our love  helped him pull through the hard times. We are so proud of him and he blossoms every day into a new child doing things we never knew he would do.Many people we can’t speak to about Roman because they just don’t understand but parents with children who are super special do understand.Even  with Roman having cardiac problems,tube fed,reflux,cleft palate,chronic lung disease ,seizures and his delays to me he is perfect and i wouldn’t change him for the world,I am thankful that he can wear all them clothes I bought before he was born and that I can hold him and love him whenever I want to and finally he can sleep in that Moses basket we bought for him .He will continue to beat odds and fight just like many of our kids! Roman is 8 months old and thriving now weighing 12pounds,his lungs may be weak but his heart sure isn’t! And this is our journey from the first ever scan I had. X