The girls are here!

Discussion in 'General' started by twinkler, Aug 30, 2011.

  1. ECUBitzy

    ECUBitzy Well-Known Member

    It sounds like you've been going, going. :grouphug: I'm glad that you've settled into a routine and that the girls (all three of them!) seem to be doing well.

    If you haven't already, get in touch with your NICU social workers at each hospital. They will advocate for your family for things like parking passes and meal vouchers to help offset the expense of the NICU time.

    Liara's swallowing issue sounds like it could be a normal developmental milestone. I was amazed every day by the things I learned in the NICU. The reflex that we have to suck, swallow, and breathe is actually something that develops at later gestation (you'd have seen "practice breathing" and such on ultrasounds). When babies come early they have to learn those skills. Same with maintaining body temperature. I really learned to appreciate how much of our body's reflexes are actually not so innate. It's amazing.

    Hang in there! I'm glad your mom is helping. Sometimes a mama really can make a girl feel better.
     
  2. Tamaralynn

    Tamaralynn Well-Known Member

    I am so happy to hear that the girls are improving! It's nice that you have a support system to help out, and I am glad that Aliah is adjusting fine to the hectic schedule. I hope that Liara and Sierra are able to come home soon. You are doing a great job. Thinking of you and your girls lots.
     
  3. monica77

    monica77 Well-Known Member

    I am so glad to hear things are getting better. Let us know about Liara's MRI results when you get a chance. You and your girls are in my thoughts and prayers also, I hope you will have them home soon. Is Siarra's surgery healing well? I am glad to hear she is eating more and more and she's over her birth weight. I hope you will get over the discomfort of the C-Section soon. Good luck with everything!
     
  4. twinkler

    twinkler Well-Known Member

    We brought Liara home yesterday!!! She was taken off her sedatives the night before and as she has been breastfeeding well, the doctor was happy to let us take her home. She was a bit unsettled last night and doesn't finish a full feed each time, probably every third feed she finishes, so last night was pretty hectic with very little sleep.

    We also received her MRI results - this the doctor has said is not good news. She shows signs of damage to the left and right side of her brain, called HIE. He says the prognosis doesn't look too good and it will be some time before we will know the extent of what this damage is ie. when her milestones are to be reached.

    We are being positive and not focusing on this prognosis at all, especially as she is feeding well and seems alert. We will be taking her to a paediatrician as soon as we get an appointment and pray that all will be well in the end.

    Sierra is still at her hospital where she will be for another week or so, they tried to give her a bottle today but she kept coughing so they will try again tomorrow. I didn't go to see Sierra today, DH went by himself, as I was so exhausted from the lack of sleep and most likely the stresses of last week.

    We managed to get a parking pass (took five days to be approved!) the day before we took Liara home - typical!

    I had an email from Aliah's dad today (he lives in another state) and he's offered to have Aliah for the Sept holidays in two weeks - our original plan to have her here so that we could all spend time together as a family but now with things the way they are, she is looking forward to the break and I think it will be good for me to try to settle in with the two bubs without having to worry that I'm not giving Aliah the time she deserves.
     
    1 person likes this.
  5. FGMH

    FGMH Well-Known Member

    So happy to read that you have one of your little girls home with you now. It is good that Liara is stable enough to be at home and that you can settle into a home routine with her and hopefully have Sierra join you all very soon.

    I am very sorry about the sad news from Liara's MRI and will be praying that you find good medical help and support for her.

    Take good care of yourself and accept any offers of help - this is a hugely stressful time for you, but a burnt-out mom is of no help for anyone.
     
  6. cheezewhiz24

    cheezewhiz24 Well-Known Member TS Moderator

    Tas,

    I've been thinking of you daily. I'm so happy to hear that you have Liara home. :wub: I'm sorry the MRI wasn't good news and will continue to pray for your family.

    Please, if you have any feeding questions or worries, stop by the Breastfeeding Forum- we are here for you, too. :hug:

    I'm sorry Sierra still isn't home and is struggling a big. I hope that gets worked out ASAP and she's reunited with you guys.
     
  7. ohd1974

    ohd1974 Well-Known Member

    I am glad you have Liara home now, only 1 more week till Sierra comes too, how exciting. You just keep snuggling and loving those little girls.
     
  8. miss_bossy18

    miss_bossy18 Well-Known Member TS Moderator

    :grouphug: Thanks for the update!
     
  9. Rollergiraffe

    Rollergiraffe Well-Known Member TS Moderator

    So glad Liara is at home getting all the snuggles she needs, and hopefully the week until Sierra is home too flies right by!
     
  10. Tamaralynn

    Tamaralynn Well-Known Member

    I am so happy that Liara is home with you. I am sorry about her prognosis, but with her being alert and feedling well, hopefully she'll be fine.

    Hopefully Sierra will be home with everyone soon.

    I agree with you about Aliah spending some time with her dad. It will be good for everyone all around.

    I have been thinking of you tons. Try and rest up and you are doing great!
     
  11. Heathermomof5

    Heathermomof5 Well-Known Member

    Tas, you are one heck of a strong woman. I am glad you guys are doing ok I hope and pray everything gets better and better each and every second.
     
  12. lharrison1

    lharrison1 Well-Known Member TS Moderator

    Thank you for keeping us all posted, we are all thinking of you and your sweet girls! :hug:
     
  13. twinkler

    twinkler Well-Known Member

    Thank you ladies for the words of support...

    A quick update on Sierra...

    Have been going every morning to see her, started one breast feed and one bottle feed on Monday, the rest of the feeds she is still being fed via the NG tube. The medical team feel that she is still too little to progress on more suck feeds so it doesn't look as if she will be home by this weekend :(

    I am so frustrated and exhausted! I have stayed home today, just to give myself and Liara a break, and Mum has gone to do the midday bottle feed and I will go this evening with DH to do a breastfeed.

    She is just a little over 2.2kg (approx 4lb8oz) so over her birth weight and has been increasing every day. She takes 45ml (about 2oz) via her tube every three hours now.

    So frustrating that it's going so slowly!
     
  14. TwinxesMom

    TwinxesMom Well-Known Member

    Sorry I haven't posted before. :hug: it's so hard having one at home and one in the hospital still. We did it for almost a week before bringing Jess home. When she did come home she had so many issues with temp and earring still. Jessy had an undiagnosed hole in her heart( which went undiagnosed till she was 4). She had issue with breathing and eating also. They told us to tap the end of the bottle to keep her alert and interested. They let jessy go home as soon as she was off tube feedings for 24 hours with a promise to bring her back if she stopped eating.

    Hopefully liara's issues turn out to be less than a problem than they think. We will be praying for her. I'm a firm believer in the power of prayer. Jessys heart surgery scar looks better than some kids who had surgery at birth and it's healed for six years. Dynamite come in small packages. Jessys birth weight was 2lbs 13oz
     
  15. Tamaralynn

    Tamaralynn Well-Known Member

    I have been thinking of you and your girld snd yes I fully admit to stalking the thread for updates. Hopefully Sierra will improve by leaps and bounds this week and will be joining the rest of her family very soon. You re doing great
     
  16. monica77

    monica77 Well-Known Member

    I have been thinking about you as well. I think Sierra is doing great considering, be patient, I am sure she will be off the tube soon. How is Liara doing at home? I hope she is doing well also. How do you feel? I hope your C-Section is healing. Good luck and keep us updated whenever you can.
     
  17. twinkler

    twinkler Well-Known Member

    Just a quick update... Sierra came home last night! With her feeding tube still in although we are now attempting all suck feeds unless she is asleep, then I am to feed her through the tube.

    Last night they were very restless and it is now just as it should have been three weeks ago, having both my little beauties home :) :).. although very tiring as I am sure you will all understand :)

    Mum is here for the week to help, she is so amazing, don't know how I would handle without her...

    Will update more later... thank you all so much for being there for me for the last few weeks... truly appreciated :)
     
  18. TwinxesMom

    TwinxesMom Well-Known Member

    Wow they wouldn't let Jess out till she could take all her feeding by bottle. I'm really surprised they send her home with a tube after such a short time
     
  19. Tamaralynn

    Tamaralynn Well-Known Member

    Yay! I am so happy to hear that both girls are home where they belong and thank god for mums!
     
  20. ECUBitzy

    ECUBitzy Well-Known Member

    Tas, that is the best news I've heard all week! SO happy for you!
     
  21. 4jsinPA

    4jsinPA Well-Known Member TS Moderator

    So glad to read both your babies are home!! Isn't it the most amazing feeling?

    I hope they both recover quickly. Have you heard anymore news on the brain scan? Is an HIE the same as an IVH? Mine both had brain bleeds. McKenna's was more severe a bilateral 3 out of 4. We were told in the nicu she would more than likely never talk/walk/eat on her own. She is a perfectly healthy 6 yr old now. The thing with brain damage in preemies is you just don't know what will happen..they are little fighters and miracles. I will keep your girls in my thoughts/prayers for a full recovery!
     
  22. miss_bossy18

    miss_bossy18 Well-Known Member TS Moderator

    Great news Tas! Thanks for the udpate. :good:
     
  23. FGMH

    FGMH Well-Known Member

    I am so happy to read that you have all your babies at home now and a great thank you for a helpful grandmother!
     
  24. monica77

    monica77 Well-Known Member

    I am so glad Sierra is at home and I hope she will be done with the tube soon. Congratulations for having them both with you!!! Try to hang in there, it's tough in the beginning, but you can do it, especially since your mom is also helping. Good luck!
     
  25. Leighann

    Leighann Well-Known Member

    Just saw this thread today. What a rollercoaster you were on, but I'm so happy to hear your precious baby girls are home together. :hug:
     
  26. twinkler

    twinkler Well-Known Member

    They weren't happy about it, but I pleaded my case, they don't have the staffing resources in the nursery to feed her bottles every feed, feeds are late making her more stressed, I can't get to the hospital for more than a few hours each day, milk running low, not getting Liara into a routine because of the all the travelling... I really put the hard case on them and I asked to be shown how to do the tube feeding at home and plus had a few clinical people who had been liaising with me on my side also.. I then got some training on how to do the tube feeds at home.... and result!!! (Not to mention the tears - mine that is!)...

    OMG truly THANK GOD!

    OH YES! I keep taking pictures of them together to see how alike they are :) :)

    - It's not quite the same, as HIE is a result of trauma although I think the prognosis is about the same.. but it's really encouraging to hear your story, thank you :) that's my hope too... Have an appointment with her Pedi next week but nothing will be really known until she starts to reach her milestones

    -------

    Both bubs had a good night, getting into a good routine which Liara desperately needed. And we got the sleep we needed.

    Oh it is so nice to have them home.
     
    1 person likes this.
  27. Nancy C

    Nancy C Well-Known Member

    So glad to hear they are both home! I work with kiddos with feeding tubes and have seem parents do great with using them and working on oral feeds to be able to discontinue the tube. If you are able, try to get home nursing and OT to assist you.

    Keep up the great work!!!
     
  28. twin_trip_mommy

    twin_trip_mommy Well-Known Member

    I just found your post. Reading at the beginning was heartbreaking but as I continued on I began to see how your girls are progressing and improving.

    I pray your strength is building and your girls continue to improve. I look forward to the next positive update
     
  29. twinkler

    twinkler Well-Known Member

    Thanks Cheryl, it has been a rollercoaster of a ride for sure...!

    Things are going well for us, albeit very busy and suffering from the lack of sleep as I'm sure everyone will relate to but it's absolutely wonderful to have them both home. There is slowly a routine happening.. Liara sleeps most nights about 8-10 hours and that's wonderful especially for my DH as he feeds her during the night - she is on formula. I am still breastfeeding Sierra and last week took her feeding tube out as the sticky was coming out anyway and I had only fed her twice through the tube (the first two days she was home).

    This week I've had them by myself for all week and it has certainly been challenging but luckily DH gets home about 4pm which helps during the "witching hour" which seems to occur every night from 5pm to 7pm. We've learnt to just let them cry while I get dinner ready and/or we eat otherwise we would starve. But this is good practice for when Aliah gets back from holidays at her dad's - hopefully she will be understanding and help me too, which I hope she will.

    We had our first pedi appt last Thursday - Sierra now is 2.7kg and Liara over 3kg so they are putting on excellent weights, lifting their heads (they're very strong!) and being alert. The pedi was very pleased with their progress. We have also taken Sierra off her reflux medication and so far so good. Probably the only thing is that Sierra makes a weird inhaling sound at times and he says that is just her windpipe which will get stronger as she gets bigger. Also Liara's fontanelle isn't closing so she has a funny shaped head but he will be monitoring that. I asked about whether it was too early to tell about any delays she may have due to her seizures and it seems that usually if there was a neurological affect, she wouldn't be so successful at feeding - so I think we are right to be positive about any outcomes. Of course all the appointment for her 4-5 month checks are booked at a specialist clinic and we will know more then.

    Today was an excellent for me because I got to go and have a haircut and pedicure- oh how bliss to feel semi-normal again! Apart from the pedi appt I hadn't been out in over a week as I've been too nervous in getting myself organised with the bubs - luckily my mum helped with that.

    This Thursday is my biggest challenge - going to the airport to pick up Aliah, with the twins and by myself!!! Wish me luck!

    Oh... and the hospital where Sierra was called and they would like us to be featured in a special story in the Sunday paper to help raise money for their fundraiser cocktail party to raise money for the surgical team - so I've spoken to the journalist and they're sending a photographer over to take a photo on Tuesday (a good enough reason to have a hair cut :) )! Sierra is also going to be pictured in their fundraiser coffee table book out in Decemeber and also in their Annual Report - they took those pics when she was two weeks old - so bless, my girls are getting exposure at less than a month old!!

    So, DH is being amazing, he is a dab hand with babies (having had four before) although I envy he gets more sleep than me...

    I even have a half hour every now and then to come and read the first years forum and find that everything that is hard for me, is normal because everyone else seems to be experiencing it as well, I love this site!!!

    I've put some pictures up on facebook - I'm not sure how I can share pics through TS so here is a link Liara and Sierra - hope this works...

    More Liara and Sierra
    More Liara and Sierra
    Sierra
    Liara
    Aliah with Liara
     
  30. Tamaralynn

    Tamaralynn Well-Known Member

    I am so happy that they are doing so well! They are absoultely adorable! :)
     
  31. ECUBitzy

    ECUBitzy Well-Known Member

    Fantastic update. And no wonder they want pictures, your girls are BEAUTIFUL!
     
  32. Leighann

    Leighann Well-Known Member

    Beautiful pictures! Glad you guys are getting into a routine.
     
  33. ohd1974

    ohd1974 Well-Known Member

    Simply beautiful.
     
  34. Lindala25

    Lindala25 Well-Known Member

    Ditto! They are beautiful!
     
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