Need Support and Info if someone has experience

Discussion in 'The Fire Hydrant' started by NicoleLJ, Aug 20, 2012.

  1. NicoleLJ

    NicoleLJ PSD Partner

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    Had our second ultrasound last week on Wednesday. Thought everything was fine. Then get a call first thing this morning requesting us to come in because the doctor wanted to talk to us about the ultrasound results. Never had a call back before for an ultrasound so my stomach dropped. Luckily Doug was not working till noon so we headed right in together. Turns out the baby is totally healthy BUT there is a high chance that it might have a cleft lip/palete. So they are sending us to Calgary to see a specialist and to have another ultrasound up there with them. I am glad that there is nothing wrong that is life threatening but this is still very stressful news. They pregnancy has been soo hard. And then to find this out I can't help but wonder if it is something I have done or didn't do.

    All my supports here know and are waiting along with me for Calgary to call to set up the appointment. I am a huge planner so I wanted to talk to people that might have had a child born with one. My doula said that lots of times it means surgery around 6 months old and until then they are tube fed. I did confirm with the doctor that I can pump and feed breast milk to the baby instead of formula and if the baby has to stay in the hospital it should not be an issue to pump and provide that way as long as I make enough.

    I have never cared for a baby that had to be on a tube. If/When they confirm that is the case I want to make sure we get everything we need here at the house to care for the baby. We have all the usual stuff already. Been stocking up for months now. But feeding through a tube must require special care for cleaning, feeding and so on. Any advice would be greatly welcome.

    Also got a call this morning about my glucose. Had a test for it 2 months back and it came in high so they had me do the 2 hour test a month ago. Just got a call today letting me know it also turned out high and I should have been informed by now and wasn't. I have already cut sugars out of my diet except for one apple a day that my nutritionist recommended I have. Plus swimming several times a week since my hips prematurely spread. So I have no idea what else they will suggest.

    So very stressful morning and really in huge need of support and advice if anyone has it.
     
  2. Romy

    Romy Taxiderpy

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    Tons of ((((hugs)))) for you and your little one. It sounds like they're getting everything lined up for you guys, I hope you're able to find someone with experience who can put your mind at ease, and that it turns out there's nothing to worry about once the baby's here.
     
  3. Dizzy

    Dizzy Sit! Good dog.

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    This is usually easily managed these days and I am sure they will get you all sorted. Can't offer any advice, but keep positive!
     
  4. NicoleLJ

    NicoleLJ PSD Partner

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    Thanks for the support guys. Right now we are preparing for the worst and hoping for the best. I am feeling somewhat overwhelmed right now. I am glad it is not a life threatening issue but it is still a huge worry and concern. I am trying to stay busy by learning as much as I can and reading as many examples and such as possible. This way if it is confirmed then we can get and have everything ready and on hand so we don't have to worry that way. And we have lots of inhome supports that all know now and will be here several times a week to help. So that will help.

    The dogs are being awsome. I know they feel my stress. All of the are relax at my feet and have not had their usual wrestling session. Even Daya is just crashed at my feet with a bone and not tried even once to wrestle with Luna. Which is their usual morning ritual. Their cuddles and kisses help a lot too.
     
  5. Kilter

    Kilter New Member

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    I sent you a PM, hope it all works out. Keep positive, they can do amazing things!
     
  6. JessLough

    JessLough Love My Mutt

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    As far as care at home, they'll likely have a nursing team to your house daily to be sure it's all too ok
     
  7. NicoleLJ

    NicoleLJ PSD Partner

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    That would put me at ease a ton. I do have several inhome helpers that will be coming in several times a week that is already set up and they know about what the doctor said this morning. So they are just waiting to hear what happens with the next scan.
     
  8. NicoleLJ

    NicoleLJ PSD Partner

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    Thanks agian so much for your pm. Sent a reply back.
     
  9. JessLough

    JessLough Love My Mutt

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    Yah, that way they make sure it's cleaned correctly and everything :) they usuall don't mess around with stuff like that, especially since your provincial health care will cover the cost :)
     
  10. Fran27

    Fran27 New Member

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    Oh I'm sorry... how stressful. I'm sure they will not let you leave the hospital without teaching you what to do, if it comes to that. I know it's routine surgery at this point though, so the baby will be fine either way... but hopefully it's just a false alert!

    Maybe PM Nancy, she probably has experience with that kind of things.
     
  11. nancy2394

    nancy2394 New Member

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    I haven't had a chance to read all the replies, so i apologize if someone has already said this. Anyway, just because a baby has a cleft lip or palate does not mean they have to be tube fed. They actually have special bottles/nipples made especially for a baby with a cleft lip or palate. The bottle is usually a squeeze type bottle and there are a variety of different types of nipples.

    In regards to eating... one of the problems with a cleft is that they are unable to create a seal/suction around a nipple to effectively suck the formula/breast milk. Depending on how bad the cleft is will determine how your baby will be fed.

    If the cleft is severe enough to warrant tube feeding... it's no biggie. You can do it :) I do it all the time at work. They have 30 day feeding tubes that can be taped in place or you can use the regular ones that you can put in for each feeding and take out. They will show you how to do it. It might sound scary, but I promise you... it's not. They will show you how to check for tube placement, that will be the most important thing.

    Another thing.... plastic surgery for cleft lip/palate has come a long way. It is truly amazing to see what they can do with them now. Sometimes they can walk away with nothing more than a teeny tiny scar :) It's hard not to stress about things when you know there is something not quite right, but try not to stress about it. This is a fixable thing.

    Have you ever seen a baby with a cleft lip or palate before? Have you seen them before they've had surgery on it?
     
  12. NicoleLJ

    NicoleLJ PSD Partner

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    I have not ever seen a baby born with one but my sisters son had one in the womb that was detected on an ultrasound but when he was born it was together though a large part of the upper lip was raw looking skin. He is now 13 and has a scar there. He never had surgery. That is the only experience I have with it.

    So never seen a baby with one or what it looks like after the surgery. My biggest concern when we were first told was getting breast milk into the baby. He said tube feeding would most likely be required. I hope he is wrong but in either case he did tell me that as long as I produce enough then pumping and feeding should not be an issue at all. Thanks for letting me know about the bottles. Right now any info and all info is what I am looking for. Prepare for the worst and hope for the best type thing. I am glad the surgeries have gotten much better. I am hoping that the ultrasound is wrong. No mom wants to hear that anything is wrong. But I am glad it is not a life threatening issue. Thanks agian for the info.
     
  13. nancy2394

    nancy2394 New Member

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    ultra sounds are not always right. Worse scenerio... your baby has a cleft. You can do this... it might be a shock when you see the baby for the first time.. but after a few seconds, you won't see anything but a beautiful baby in your arms. You can get the breast milk into your baby.. don't stress about that. Even if you did have to go the tube feeding route, it's no different than putting formula through the tube. Breast milk is best for your baby :) You will have to work a little harder with your milk supply since you will rely on pumping rather than putting the baby to breast.. but it can be done. And there are compounds some pharmacies can mix up that can aid in milk production. Some mothers take reglan to help boost milk production. No need to stress, you got this :)
     
  14. NicoleLJ

    NicoleLJ PSD Partner

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    Thanks. Looks was not even an issue we thought about or honestly care about. Though I can imagine it will be a shock at first but it is still our baby and is perfect no matter what. We are more concerned on the feeding, cleaning, the surgery and how to prepare for that and what to do after. The idea of one of my babies having a surgery so young just worries me to no end for obvious reasons. Pumping I am used to. Did it for my last too though with breast feeding too. I also had to be on medication to keep my supply up since I always seem to dry up for no reason around four months so that is a non issue for me. We will do what ever we have to to ensure this baby is healthy as possible prior to the surgery and after. Thank you so much for your advice. Huge help and stress reliever.
     
  15. Miakoda

    Miakoda New Member

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    My niece was born with a severe cleft lip and mild cleft palate. I'm on my phone and it's about to go dead, so I'll get more into it tomorrow. I'll post some pics pre- and post-op as well. :)
     
  16. puppydog

    puppydog Tru evil has no pantyline

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    No advice here. I just wanted to say that I'm sorry that you are going through this.
     
  17. Paige

    Paige Let it be

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    I have no advice either but I want to offer all my support and hugs.
     
  18. jenv101

    jenv101 Bite Club

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    Sending lots of positive vibes your way - I can't imagine how stressful that news would be! Lots of reassuring advice and support in here though! :)
     
  19. NicoleLJ

    NicoleLJ PSD Partner

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    Thank you so much everyone for your kind thoughts. Here is the update for this morning. Just got the call from Calgary. The appointment is set for this Thursday morning at 7:45am. So we will be heading up there tomorrow after Sheena's vet appointment for her spay incontence meds at 3pm. So long day tomorrow. Got a Living Well appointment for my high glucose at 9am, see the nutritionist from Best Babies here at the house at 11am, have a doctors appointment at 1pm, have to dropped the referal note to Calgary off at the AISH office right after that and then at 3pm Sheena sees her vet. Then off to Calgary. Luckily AISH is covering the gas and food costs and would have covered a hotel but because of some very awsome friends we can bring all the dogs with us and stay with them so no need of a pet sitter at the last moment. I am nervous and stressed for obvious reasons but at least we have something to plan for and do now to get answers. That is our update now.
     
  20. nancy2394

    nancy2394 New Member

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    I'm on vacation for the rest of this week, but i'll try to swing by work tonight and snag some info for you. It's not impossible to actually breastfeed a child with a cleft lip or palate. Sometimes, they actually do better on the breast because the breast tissue helps enable them to create a suction.
     

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