08-5-2008 - BABY'S DIARY - April Updates

My mood while writing this blog: ok

APRIL 7:

So DH is home from the hospital. Everything went well in surgery and he is going to be ok. Ive been going crazy doing absolutely everyting for him. He cannot walk or use his left hand anymore. Hes fine tho, hes just chilling in bed and xbox 360 allllll the time lol. I dont know what this means about him ever going back to work or what will happen now, but things are very difficult and i do not need the pressure of worrying about that right now. DS and i had lots of cuddles yesterday, we are taking one day at a time. Hope everyone is keeping good and happy :)

APRIL 8:

Today they have given a diagnosis of cor pulmonale, DSs heart is failing. It is because his lungs are scarred from the ventilator, it restricts the amount of oxygenated blood he can produce. This means his heart has to work extra hard. Because he already has heart defects its even harder for him. When the heart works so hard the muscle begins to swell and constrict, thats what is starting to happen. He is being monitored closely now. The better his lungs get the more pressure it will take off his heart. These effects cannot be reversed, but his lung tissue can and will continue to heal. He is due his next surgery once he reaches 16lbs, but we dont know if or when he will be there.

Soo 74 DIFFERENT people have visited my page in the last 24 hours ... and not one of them have donated to the charity :( I must say, im pretty disappointed. I thought in a group of 'supportive' and caring moms, that at least a small percentage would care about innocent suffering babies and their families. I mean only £2 to go straight to charity, what can be so worth it that someone cant even spare 2 quid?!! Well, i guess it just shows what people are like these days, its a real real shame.

As for us, DS lungs are showing no sign of improvemnt and his heart is under an increasingly amount of pressure. Ive had alot of medical appointments recently and im trying hard to keep eating and getting some sleep when i have the time. The sunshine is out (even tho its freezing), it keeps me positive - until i dream about playing in the park with Giaan, or taking him for a walk, then i know it might NEVER happen. Now when i sit in hospital and stare out the window at the sunshine, it shatters my heart all over again.

:( Im so angry, frustrated and upset right now. Im so devasted and heartbroken, i want to scream but im too tired to even cry. Im too tired for anything. Why do things have to be so hard?

APRIL 23:

Last week DS tested positive for virus, hes been in isolation pending further tests. His lungs are real bad and oxygen settings are up. They are pretty sure he has bronchitis again. Hes been suctioned and his mucus is being cultured again. Just now im just waiting and praying and taking things as they come. Hes getting treatment for the bronchitus symptoms, this should help alot, but it really depends if he shows positive for the virus again. He has to have 3 negative tests before hes allowed out of isolation again. We'll have the second test results back soon. Thank yall for caring about my lil soldier x x

183 people have visited my page since i told yall about the charity im fundraising for in the memory of the babies we've lost. 3 wonderful mommas have donated, i just wana thank you girlies SO much :) It means so much to me. Our religion teaches us to donate 10% of all of our earnings, this is something i strongly believe in and DS is being raised with these values; to help others whenever and wherever we can. Im glad i met you girls, it gives me hope, and it will help all the other preemies and their parents. Thank yew x x x

APRIL 27:

Soo, our wee snuggle bum is still in isolation following the positive RSV result. The bronchitis is pushing him and hes having to be suctioned alot, at least twice whilst im there (6-7 hour period daily). Its a horrible thing for him to go through, and it hurts me too :( Its all putting more pressure on his already failing heart. Its just one thing after another and it SUCKS! As if the CLD wasnt enough! They took more cultures and we still need to wait for another negative as they cant have him near the other babies just incase. Its nice having our own lil space though, only bad thing is i have to wear a mask & gown which messes up our bonding and snuggle time :( Praying for him to stay strong. Hes on meds so hopefully his bronchials will be abit better soon (apparantly it can take many months for them to heal depending on how long this goes on for). The most important thing is to keep his oxygen levels up without working his heart too hard. The quicker the inflammation goes the better as it can cause long term damage and/or be fatal. They said he is doing well to just be using cpap right now as most preemies with RSV end up on the vent. They are thinking about giving him some steroids. Or, if it doesnt improve he will have to go back on the vent to help his heart out for a few days. Personally im terrified that going back on the vent, he will never get off it again. In his better times he began fighting the vent and came of it relatively smoothly, but most the time he seems to become quite dependent on it and that really scares me. Praying for his lungs to keep functioning on the cpap and for his levels to stay high.

On a more positive and rather random note, daddy bought some cool lil finger puppets of all sorts of animals, so once hes doing abit better we are gona entertain him and play with them! We got him some cute new small toys, he really likes holding them tight in his hands, so hopefully he will be out of isolation and reunited with his lil buddies soon!