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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    That would be awsome. I won't be able to update till we get back from Calgary and that might not be till sometime Friday after noon or evening. Maybe later if the friends we will be staying with want us to stay the weekend. As soon as I get back I will update. Though I don't think I will get any news till next week or so when my doctor gets the results.
     
  2. nancy2394

    nancy2394 New Member

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    pm me your address so i can send out the info to you
     
  3. momto8

    momto8 New Member

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    (( hugs ))

    My daughter was tube fed for about 3 months, she had 2 heart defects and after arriving at Childrens Hospital her bowels ruptured. So when we got sent home after all her surgeries she came home being tube fed and with a colostomy bag. It wasn't really too bad,except that due to her bowel problems she had to have a feeding every 2 hrs, 24 hrs a day, so it was more than your normal sleep deprivation. I'm sure they have more state of the art pumps than they did 6 1/2 yrs ago, but mine was a PIA , it annoyed me so much lol! The way the hospital set it up for us, our supplies were delivered to our front door, and if we needed anything extra we just called in advance.

    I hope that everything goes good at your appointment.
     
  4. NicoleLJ

    NicoleLJ PSD Partner

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    Thanks momto8 for sharing your experience with me. It really helps alot.

    As many of you can imagine after talking to the doctor I have been trying to learn as much as possible about cleft lips and palates. The link below was very helpful. I will admit that I cried while looking at all the pictures but the end results after the surgeries are amazing. Every one is a beautiful baby/child. I cried knowing that my child has a chance of going through this and the idea of surgery on such a young baby just really makes me feel like I failed him/her. It is not how the baby looks pre surgery that is my issue that tears so much at my heart. It is knowing that surgery could be required and the pain invloved in that for such a small helpless baby. I know if this is confirmed that surgery is the best thing but it still hurts my heart and worries me. The pictures are graphic of pre surgery but the after surgery ones are amazing.

    http://www.cleftline.org/docs/‚ÄčEH_Binder_English.pdf
     
  5. NicoleLJ

    NicoleLJ PSD Partner

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    Exhausted but home and it is midnight. First the awsome news. We are having a boy. For sure. So Nico Owen will be joining are family in a few short months. The sad news is he does have a cleft lip for sure and a small chance of a cleft palate. Will explain in detail tomorrow. It is on the left side, extends up into his nostril and is 4mm. Otherwise he is very healthy in every way possible. Will update more once I have some sleep but wanted to let everyone know. Night all.
     
  6. puppydog

    puppydog Tru evil has no pantyline

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    Congratulation on your little boy!!! I'm sure he will be perfect in every way!
     
  7. -bogart-

    -bogart- Member of WHODAT Nation.

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    WOHOHOHH on little Nico ! And I knwo any kind of problem will have you super duper stressed , but really just keep doing what you are , and everything will be how it is supposed to be.
    You still have time to learn all you need and no matter what that little boy will be perfect in everyway!

    HUGE HUGS , and just think now you can get him little planes and trucks and bikes and balls and bats and alll the other fun boy stuff
     
  8. NicoleLJ

    NicoleLJ PSD Partner

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    Thanks so much you too. We very much appreciate the support.

    So here is how Wednesday and Thursday went. Had 4 appointments we had to go to on Wednesday. One was with the Living Healthy program. They let me know my results from the test about 3 weeks ago. It was a two hour test with 3 needles. The first needled showed my glucose as being 1 point over the average that they like. The second test at one hour showed my glucose as one point under the average and the third at two hours showed it as being 2 points over. So now I am diagnosed with Gestational Diabetes. They wanted me to do the prick tests 4 times a day to monitor it but when the realized just how bad my phobia is of needles(they watch me like crazy when I get them in the hospital because I can and do pass out) they realized that it won't work for me. I just would not be able to bring myself to do it. So they came up with another option of a urine test 4 times a day. And I have a referal to Doctor who will perscribe oral meds if the tests show the need for it. So glad for that. The people there were so nice and didn't make me feel bad at all for my issues. They are also having me test my Keystone levels because I have not gained any weight during this pregnancy. Instead I have lost 13lbs even though I am eating right and working with a nutritionist. Also they were very happy that Nico is now weighing in the average range and not on the overly large side. They showed me how to monitor my carbs too so that helps a lot as well. They said my removing sugars immediately from my diet(except for 1 fruit a day) when I got the first hi glucose results and increasing my exercise did improve that situation and help it a great deal. After the meeting they gave me a beautiful diaper bag with some things in it. So not a bad meeting.

    Also met with my nutritionist and she was very impressed with how well I am maintaining my eating habits and following her instructions. Even asked me for my homemade ice cream recipe because it is so healthy. She wished us luck for seeing the specialist and asked us to keep her informed. Then we saw the doctor for our check up. They were very happy with how healthy the baby looked in the second ultrasound, listened to the heart beat and were very happy with how strong it is. Then let me know we were going to start seeing him every 2 weeks now instead of once a month. Checked my urine for glocose and there was none. Very happy about that.

    By 4:30 we loaded up the car with everything and the girls and away we went. It was a 3 1/2hr drive and so exhausting but it was nice to have friends to stay with that could understand my stress level and give us both support. We didn't sleep hardly at all that night though we tried. Had to get up very early to exercise and feed the girls before we left. That city is bad for heavy traffic so we had to leave over an hour early. The traffic had me in almost a near panic but we found out way and got there 15 minutes early. They took our info, let us know we would get a beautiful framed photo before we left(and it is). Then we met with one of the nurses who listened to any concerns(with my psych disabilities this is important since I can't handles a male tech at all for this type of things and my anxiety issues). She let us know that as soon as the ultrasound is done the specialist sits down and discusses the results right away . So no waiting and that was so nice.

    We had a really nice tech how let me ramble on and on about dogs to try and destress myself. It last 45 minutes and by the time it was done I had to be helped off the table thanks to my hips that have spread a month too early and my lower back. I was in tears with pain but it was worth it. We got in to see the specialist and he let us know that the cleft lip was minor. It is on the left side and goes up into the nostril but is only 4mm. He was actually very happy because it means little to no scaring after the surgery. He said that the position of the head made it so they could not get an accurate mouth shot to check for a cleft palate. But assured us the chances of having a thin cleft lip and a huge cleft palate were very remote. He said in all likelyhood that IF there is one it will be small as well. He let us know that the next issue for them was any genetic annomalies besides cleft lip or palate but all those pictures showed the baby healthy in every way other then the one issue. He said he is swallowing normally which makes them very happy, the amount of fluid was as it should be around him, that his heart, kidneys and so on were all good. So we breathed a sigh of relief with that. He also let us know we would not have to be in this city for the birth. That we could carry to term and stay in our city to have the baby. We are very happy about that. When it comes to pumping and feeding that it will depend on if there is a cleft palate and also how difficult the baby has of latching because of the lip but was very impressed that I was already researching and trying to learn from experienced moms and others on what to do to ensure I could still give the baby breast milk. He told us to keep up with the researching and learning. He said he was refering us to the cleft lip/palate childrens hospital and that if we had any questions to let them know and that he would send me a copu of the report and referal along with my doctor.

    So it was a lot to take in. We were so happy to learn we are having a boy, saddened that he does have this issue and will need surgery so young, but also glad that the doctor was so addament that if he was to have it then this is how you want it since it is so small and easily correctable. We are still processing it all. We have great supports in place(proffesional as well as friends) so we know we will have all the help we need. Just a lot to take in. We stayed to visit with our friends and headed home later in the evening since Doug had to work today.

    Sorry this is so long. It was a long two days. But worth the stress to know the baby is healthy and what we need to do now. So those with experience, support or advice we would love it all. Will keep you all updated on how things are progressing.
     

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