Newbie! So desperate to take my baby home :(

[kizzie1504]

Hi all, i just needed to find somewhere i could let all out!! Hope i dont come across as a moaner, first time ive moaned really! but having such a bad year! I found out i was pregnant at 9 weeks, and at 10 weeks i was diagnosed with cancer! Im 19 years old! I made the choice to delay all treatment untill after my baby was delivered no way was i putting myself first!! So that was the first hurdle, and then at 30 weeks on the dot, i gave birth to my beautiful girl Olivia Maye, on 26/7/10, weighing 2lb's1oz! and i have to say she has done so fab!! no breathing help etc!! been fab! all she needed was a little phototherapy light for jaundice! she is now 5 weeks old, please someone tell me when i can take her home i started my chemotherapy last weds, & although its going ok, i just want my baby home so we can enjoy every second, at the moment the nurses just constantly worry how i am coping, or if im feeling ok, its all very patranosing at the moment, some nurses are brilliant, others are just rude!!! sorry for rambling, just feeling a little down xxxxxxx

 

[mammyy]

they say about the time of your due date but could be before that. does she still get fed through a tube? because onces shes on bottles all the time you'll probs get your date. xxx

 

[katy1310]

Oh my goodness, what a terrible time you've had First of all, I just want to say I think you are so so brave, and you're not a moaner at all. Having a baby early is a huge deal without having to cope with cancer too. You sound like an amazing person.

I had my baby 13 weeks early, and she was in hospital for 12 weeks. She weighed just 1lb 13 when she was born, and was on CPAP for 10 weeks. She came home weighing 5lb 6. In our hospital, they didn't go by the baby's weight or due date, it was whether they were off CPAP, able to hold their temperature and able to feed and put on weight.

Your baby sounds like she is doing great - it's brilliant that she's not had any breathing problems etc as that's one of the main hurdles. Sophie's CPAP was the huge thing that we had to get past. Other than that, she did so well with everything else - she was slightly jaundiced at the start and had a bit of phototherapy and she had one blood transfusion. She had to go back on the ventilator for a few days when she was a couple of weeks old but other than that we had no major problems. She was in intensive care for 7 weeks, high dependency for 3 weeks and special care for 2 weeks. She went into a heated cot when she reached 4lb which was when she was about 7-8 weeks old, and started learning to feed when she reached 37 weeks.

You are doing so amazingly well dealing with your cancer as well as having your baby early and I really admire you. You are an inspiration. We are all here any time you need to talk.

xxxxx

 

[kizzie1504]

thankyou both!! Olivia is on bottle's now, still has her tube, but is on one bottle to every 2 tubes, although since yesterday morning she has had bottles at every feed!! although on a couple she had to finish the last few ml's through the tube as she got sleepy! one nurse did say the other day that they finally clicked she was always going to be tiny, as when she was born at 30 wks she was still only the size of a 27wk! weight was the only thing keeping her in hospital, and now theyve said she will go home very small anyway, (she is gaining well, but still only 3lb 4!) so feel much better knowing that as i felt like screaming at them that she was always behind her age! the nurse even admitted that they often forgot how old Olivia actually was as she was so small, she is 5 weeks old now so feel relieved now! one nurse has said at 5 weeks old she should be home as she has "completed all the stages", so i dont think it will be long, but when i ask they dont give me an answer frustrating! although i know i will be ever so nervous when they finally let her home lol! Olivia had an apnea moment yesterday though, is this seen as a setback? she just had to have a little tickle on her toe's to stimulate her again, is there a certain lenght of time they have to go without these? but to be honest, i'd wait months to take her home if i could garantee she wouldnt have another one, i wouldnt want to deal with that at home! argh panic!! lol!

Thankyou for saying im an inspiration! everyone call's me brave etc, but the last two week's i really havent felt brave! been difficult, when i was pregnant people would ask how i felt about the treatment, and to be honest it always seemed so far away that i never really thought about it much, and since delivery now its all go go go!! so ive really panicked!! cant stop crying someties! now ive actually began the treatment, its easier, as im just concentrating on getting better for my baby! it was more the thought of it i was frightened of!! But still it's great to have found somewhere to go to talk!! thankyou! xxxxxxxxxx

 

[Agiboma]

woww, so much to deal with @ such a young age, you are not a moaner, what you truly are is mature and all the wiser for your age way to go. I am so sorry to hear about your health issues, and hope they will resolve very soon. As far as i know you can take a baby home closer to their due date.
You are very brave and dont thank us, we should thank you for sharing your story with us and welcoming us into your life, you have a wonderful positive spirit and i really do wish you all the best

 

[25weeker]

Congratulations on the birth of your amazing wee fighter. To not need assistance breathing at 30 weeks is really good.

I am sorry to hear you are having such a difficult time at the moment and hope things improve and 2011 is a brilliant year for you.

I think going home will depend on holding her own temp and feeding on her own. What weight is she now and are they bottle-feeding her sometimes?

Hopefully you will get her home very soon.

Take care xx

 

[mammyy]

they will probley just out of the blue tell you. we had no idea then one time we asked (on the friday) she said monday and we could room in on the weekend (the sat on sun nights) we couldn't beleive we finally had a date.
good luck for getting her home soon, and good luck with your treatment xxx

 

[kizzie1504]

i had steroid injection's fortunately, hence the good breathing so thankful for them! bottle's yes she is doing fab on! they said she would have one bottle to every 2 tube feed's, 3hourly, although since 6am yesterday she has had bottles for every feed! even demanding them now too temperature she is holding, although she is still in her incubator, but in the nursery stage of NICU, as they wanted her to grow as much as poss, but maybe they'll move her out if theyve figured she will always be behind in weight? a question i'll ask today! one thing im terrible at is asking questions! always think of them, but when i ring or visit mymind goes blank lol. she is 3lb's 4 now! put on 100g in 3 days, going up ever so fast! she is on formula milk as i couldnt express due to treatment thanks again everyone for replying, feeling much more happier now xxxxxx

 

[katy1310]

Olivia had an apnea moment yesterday though, is this seen as a setback? she just had to have a little tickle on her toe's to stimulate her again, is there a certain lenght of time they have to go without these? but to be honest, i'd wait months to take her home if i could garantee she wouldnt have another one, i wouldnt want to deal with that at home! argh panic!! lol!

Was it during a feed? Sophie had a few of these moments when she was just learning to feed. They told me it was just because it's such a big thing to learn, sucking swallowing and breathing all at the same time. At our hospital, the babies had to pass a sleep study before they were allowed home, I think just if they'd had an oxygen requirement for any length of time. This involved being monitored during all normal activities like sleeping, cuddles, nappy changes, feeds etc etc and their oxygen level had to be above 94 I think. Sophie dipped right down to 40 and actually stopped breathing and went blue during her first sleep study (which, needless to say, she failed.) I was terrified. I was breastfeeding her at the time when it happened and the nurse ran in and took her from me and she was patting her on the back and blowing on her. It was the most scary moment of my life. She was fine after a minute but it was enough to spook me and I was scared feeding her after that. She did dip right down again another few times but didn't go blue again. The doctor told me something would just suddenly click in her brain with the feeding, and these moments would stop. She failed a second sleep study, but after that, the doctor was absolutely right and she suddenly got the hang of feeding and passed her 3rd sleep study with her number averaging 98-99.

We've had her home for 12 weeks now and haven't had a single scare with her since she has been home. They kept telling me in the hospital it was just a matter of time and they were right. Our hospital did give us rescusitation training before we brought Sophie home, which is handy to have for peace of mind but I hope we'll never have to use it. I think they said that out of all the babies that have gone home from that unit, you can count on one hand the number of people who have ever had to use it, and all those babies have been absolutely fine.

It is scary taking a preemie home but you get used to it! I think there will always be that element of worry but you do start to relax enough to sleep etc! The first few nights Sophie was home, she slept and we didn't! She used to wake around 3 for a feed and the first few nights she went longer than that I was still waking at 3 - she goes to 6.30-7.30 now and i still wake up checking on her. I don't think I'll ever sleep really deeply again!!!

Sophie is still quite small for her age - she is 11 weeks corrected and is 9lb 11 - but the hv is pleased with her as long as she's putting on weight consistently, which she is. She's doing everything she should be doing for an 11 week old baby and is even trying to pull herself up into a sitting position using our hands!

Don't worry about having days when you don't stop crying...I've had those days too and that's without having everything you have to deal with. Don't underestimate what you're going through - having a preemie is hard enough on its own without everything else. Big hugs.

xxxxx

 

[mammyy]

ahh i just wish steriod injections worked quicker.
at the hospital we were at we got told he could go in a open cot when he reached about 4lb. so if its the same it wont be long for her. they suggested to us to try writing the questions down, we were the same with minds going blank xxx

 

[25weeker]

100g over 3 days is a good gain. When I was in Nicu the consultant said fullterm babies ave 30g a day but for preemies it can be as little as 10g.

Apneoa's are common but it is really like a switch flicking on and they stop. My lo had quite a few until she was around 38 weeks and has never had one since.

It won't be long before your lo is in a hot cot and it is so much better seeing them in one and so much easier for lifting them out and then hopefully the next step will be taking her home. Xx