re: gaining weight, updated

Hows your son doing? Is he better?

Quoting glittergrape:“ Hows your son doing? Is he better?”

Hey, id clicked on this to update this morning and my screen froze! Jeez its crazy looking back and knowing how different things seemed at the time, i think i was just working on auto pilot and not taking anything in, id certainly never imagined things would turn out like this!!

DS actually dropped to about 735g after infection and we nearly lost him, i was asked if i wanted to switch his machines off. At this point he was having blood tests every few hours around the clock and they discovered the extent to his heart problems (which hadnt been diagnosed during the pregnancy). My first proper hospital scan wasnt until later on so we werent sure of gestational age. Unfortunately all id had early on was at the free clinic as they were aware of my medical history and were encouraging me to have an abortion. Id guessed my date due then, but due to pcos its pretty clear id skipped a cycle. He had stopped growing and the consultant said there was no way he got past 26 weeks gestation, i guess he was going to be a very long baby and a very tall boy! (although not surprising; im about 5'11 & daddy 6'4). Due to the nec (infection of bowel/intenstines due to immature digestive system) it took a very long time to get him on decent amounts of milk. Because of this he was still under 5lbs by 40 weeks.

He had a grade 2/3 intraventricular hemorrhage (brain bleed) that got worse until the fluid stopped building by his u/s at 4 weeks. Fortunately after several later scans we didnt need to place the BT shunt. We cant be sure of the resulting disability for a few years yet but his motor skills and general development is coming along nicely so we're incredibly lucky.

He was diagnosed as having pathological jaundice which we finally got rid of at Christmas. Again it could have been a sign of chronic problems but in the end all he needed was time. He spent along time on various medications to stimulate his system to help produce the red blood cells he wasnt making himself and encourage his iron levels, bp meds and insulin among others.

At Christmas he became very sick and again i was convinced i was going to lose him, he had multiple rounds of tests including a spinal but nothing showing up other than bacteria from his trachea. After 3 sets ofantibiotics and some steriods he was much more stable. Hes had 2 heart catheterisations and 2 open heart surgeries and ended up on a heart lung bypass machine (external life supprt), it was the worst days of my life andweare truly blessed that he made it off of that.

As of now hes got wonderful sight with no signs of ROP, this in itself is a miracle after spendinglike 100 days on the vent (oscillating and standard). Hes got severe BPD (broncho-pulmonary dysplasia/chronic lung disease) resulting from 3 months on mechanical ventilation. Through this hes had other complications like pulmonary edema, collapsed lung etc. The combination of poor functioning lungs and multiple heart defects have put a huge amount of pressure on his heart and he has a condition called Cor Pulmonale, which basically means his heart is failing. We finally got him off the vent after the second heart surgery in Febuary, at this point he should have only been a couple of weeks old and it really hit me hard that he'd already gone through so much. He was slowly weaned until he was doing half the day on the vent and half on CPAP. By March he was going betweenCPAP and nasal canula.

4th of March we finally began breastfeeding for the first time, about 4 months after his first drops from the ng tube. That was one of the most rewarding experiences ive ever had, after all the months of heartache we were finally doing a normal 'mum & baby' thing. By mid March he was taking most feeds orally and i guessed we would be home within a few weeks on a heart & oxygen monitor and nasal canula. Then he suddenly took 2 'funny turns' out of nowhere and he had to be reintubated and bagged. Personally i think it was some sort of reaction to his shots, but im told he was just working too hard with his breathing and feeding. After 2 days on the vent we are taking things much slower and hoping for things to steadily improve. Lung tissue continues to develop and heal for 3 to 5 years so i know this will be a long journey for us.

Just now hes in isolation with a virus following a positive test result and hes still struggling with bronchitis too. This means his breathing is bad, his oxygen levels are up high, his heart is struggling and his lungs are constantly being suctioned to remove mucus. Right now we are considering whether or not to put him on the vent again for a few days to give his heart a break. Unfortunately his windpipe has become damaged over time so he would need a tracheostomy, this is a real nightmare for us and something we badly want to avoid. The consultants have decided that the recurrent bronchitus/swollen bronchials and inflammation are due to severe reflux, so hes going in for surgery to be permanently fed straight through his belly. Because of all the hard work hes doing it means he isnt gaining any weight. He still has aspirations too and is beginning to develop an oral aversion, at least with the bottle and the nurses. Although he is fine sucking on his own hand and nippling with me, its decided that the only way for us to move forward is to stop oral feeds altogether. After how sick he got from the heart surgeries ive been avoiding this for a long time and im incredibily emotional about it, not knowing if im making the right decision or not. Ive heard alot of stories of kids refusing to eat because they get so used to gastric feeding. However, hopefully this will allow the inflammation to go and his lungs will have an easier time of healing. Our aim is to improve his lungs as much as possible which in turn will stop the heart failure from progressing. His next heart surgery is once hes reached 16lbs, so its more than likely he could end up staying in hospital until then, depending on whether or not he needs a tracheotomy.

Hes an incredibily patient baby and brings me more joy than i ever thought possible. Despite all hes been through he still loves nothing more than a mummy snuggle and is easily comforted. His vocal cords are pretty badly damaged, so hearing his first cry at 3 months old, and his quiet talking now just melts my heart after thinking it would never happen. Hes holding his head up well and can pretty much roll over now too. He gets regular therapy to help his development and we do exercises to loosen the mucus in his chest. Its hard to estimate his current weight because of fluid retention but we guess his actual weight was around 8lbs at 3 months.

I guess the biggest thing ive learnt through all of this, is that miracles can happen, and that we are always alot stronger than we think. The biggest piece of advice i could give to a micro preemie mum is to get rid of all your expectations and stop looking at the calender or stressing over milestones or 'what ifs'. The doctors will let you know if you need to be concerned and then you can research and find sources of help. Its so important to not beat yourself up over things, stressing over 'small' issues or feeling guilty. Living in hospital is not just a part of my life anymore, it is our life. I went through a deep depression from 5-7 weeks pp and i couldnt see that it would ever end. For the longest time i would think 'we will do this, or that, once we are home from hospital'. Now i take each and every day as it comes, i try to make every single day our best and enjoy our life together in hospital.

I know you werent asking me any of this LMAO i didnt mean to write so much  . So many things have happened over the last 5-6 months and its good for me to look back and see how much progress we've made, its hard to see it when you are living through it! NICU is a rollercoaster, but no matter how bad things get, one day it will all be over and you will be home. I know its easy for me to say, but theres no point stressing over things before your babies due date, it will only harm yourself and you want to be in best condition for your baby. Preemies need time to develop and whatever youre going through is normal, its just the journey you have to take.

Im guessing this is probably the longest post in baby gaga history   if its of no use to anyone then i will delete it, just let me know!!

Quoting twinmami:“ Hey, id clicked on this to update this morning and my screen froze! Jeez its crazy looking back and ... [snip!] ... is probably the longest post in baby gaga history   if its of no use to anyone then i will delete it, just let me know!!”

God bless you and your little one!

I am praying for you and your little fighter.

aQuoting twinmami:“ Hey, id clicked on this to update this morning and my screen froze! Jeez its crazy looking back and ... [snip!] ... is probably the longest post in baby gaga history   if its of no use to anyone then i will delete it, just let me know!!”

aawwwww you made me cry. i'm so glad it's getting better

Quoting Pirate Santa *EVIL BITCH*:“ aawwwww you made me cry. i'm so glad it's getting better”

sorry! thank you tho   Hes off oral feeds as of Monday, so hopefully over the coming weeks his lungs will get better. At least ive learnt to be patient lol

Reading this really puts things into perspective. I saw a girl on here complaining because her baby had to go to NICU for 5 hours. I just thought oh please lady, you have no idea. But I have no idea either. No matter what we're going through, its our own hell, even though it might seem like a walk in the park to others. I've actually never really known your story, but I think of you and your little guy often. On my son's last day in the NICU I cried. Not for him, but for all of the other mommies and babies that had to stay, and all the ones that were to come. I cried for you. It just breaks my heart. I know that as mothers we find the strength to deal with things, but I'm just not sure I could deal as long as your have, and with the things that you have. As far as we can tell, my kids' NICU scars are only on their skin, and for that I will always be incredibly grateful. I hope your little guy gets the time he needs to heal and you guys will finally be able to enjoy him in the comfort of your own home. I hope that some day soon you can adopt a whole new version of 'normal'. I look forward to hearing about that day!

it must have felt so good to finally bring him into your home! even just to be outside and away from the hospital, just to see his little face looking out at the real world! i cant wait for that day, especially now its sunny, im dreaming of just being able to take him for a walk and sit out with him.

I guess we just have to take things as they come and do the best we can. I never ever imagined i/my child would have to go through the things we have. I cant believe how much my life has changed. Sometimes i just sit and sob and feel so bad (like today!), but then i know that its not me stuck in hospital, and that i need to stay strong for DS. Ive lost contact with so many people since back when i was first put on bedrest, i think thats one of the hardest things about our life now, that i find it so hard to relate to anyone. My mind is always on ds and whats happened/happening/going to happen. We have these few things we can do to help him. Im praying so hard that he gets through this, i can see this clear path that we have to walk to come home. So far its like we've hit every possible obsticle, i always wonder why every bad thing that can happen has. I just hope to God that finally this time we will have good luck and things will go smoothly!