feeding issues

well i think you all know macy entered this world on friday may 14th just a bit early.  she is perfect but having issues with feeding.  i know it can be normal, but i want her to eat on her own (without use of her feeding tube) so she can come home, i miss her!   how long did it take your babies to get it?  i know we have several issues that she is dealing with besides ds, born early and is tiny and tired.  

i know all kids are so different in when they accomplish different tasks, i just wanted to hear how your baby just one day got it!! im hoping this weekend might be that time but im keeping my mind set in the real world.  

[Dragon1973]

Hello Pertykitty!

Congratulations mommy!
And I am glad she arrived well and safe.  Feeding issues can be so overwhelming and distressing.  When Hunter was born, he was so sleepy that he didn't want to eat.  It took him a bit to get it, we had to feed him with a nursing tube attached to my breast, but he was a smarty from birth, figured out how to spit out my breast and just drink from the nursing tube!  Crazy.  While he never had a feeing tube (or NG tube) he lost more than 10% of his birth weight, and was threatening to say in the hospital if I couldn't get him to gain.  He was born 5 lbs, 14 oz, and went down to 5 lbs 3 oz.  He eventually got the hang of breastfeeding, which we were ecstatic about, knowing that babies with Ds have latch troubles with low muscle tone in their mouths.  Keep with it mom, she will get there, and hopefully she will be able to nurse from you.  Even though it may seem that it is so difficult, many moms have been able to get their babies to breast feed.  I am here if you have any questions at all.  Hopefully if I can't help, I can find the answers, if not just to be support.
Sincerely,
Sandi (Dragon1973)
MedHelp Down syndrome Community Leader
& Ds Group Forum Founder/Moderator

[martikadragoon]

Hey! I'm so glad most everything is going well with Macy.

With my firstborn TJ who has DS he had his feeding tube until his open heart surgery, and then in the 3 weeks before he went back in he was all bottle fed (it was AWESOME!) it was simply due to him not having the energy to bottle feed before hand, and once his heart was fixed he had all sorts of energy and downed a 2oz bottle in 5 min when it used to take almost an hour.

I attempted to breast feed but his heart issues were too severe (3 holes and PDA) so I pumped and fed him for a month.

ttyl
Cindie

[pertykitty]

i think what macy has is a pda, we are going to have surgery in 3-4 months.  she just cant stay awake long and when she does its very here and there with her eating.  she has latched on to me but it doesnt last long but its a start!!  if she is in there still past friday the cardiologist will come back to see her in the nicu, i will ask him if that could be why she is having trouble.  

i would love to just bf, pumping is so much work! lol

[Dragon1973]

Hi Perykity!

Latching is such a great start!!!  I knew she could.  Now, if you can figure out exactly what the condition is (if PDA or ASD or VSD...), that would be a great thing because they all can be repaired!  And once that is done, she will probably have a much easier time with feedings, and staying awake!  Hunter had an 8 mm ASD to which we didn't even know about until after a few weeks of having him home!  When I had the fetal echocardiogram, everything was "normal" and visualized just fine.  So, we were really in no rush to "rush out" and see the paediatric cardiologist, but that doctor made sure we came and saw him since he knows better than anyone else that our kids have such a high percentage of heart conditions.  And boy were we ever surprised that Hunter had this 8 mm hole.  In our case, (and I had done my own research also) it was told to us that holes larger than 5 mm probably wont close on their own but there was a chance.  And when the doctor discovered it, he rescheduled us back for when Hunter was 6 months of age.  When we returned, the hole had closed spontaneously to 2mm, and was continuing to close!  We were flabbergasted (but in a good way, since that meant Hunter likely didn't or wouldn't need surgery.)  We will be going back this September 1st, to review the hole and see if it's now completely closed, which I am hoping it is.
I have read many forums where babies have had a PDA, and had surgery to repair it, and all is now well - especially happy to hear that they seem much happier, awake and able to eat wonderfully!  So, I hope that you know it's so common, and also quite repairable.  I also read that the babies seem to bounce right back with in a week of the surgery!  So that too is great news for you and Macy!
(side note:  Hunter too was a sleepy baby that we had to continuously wake up for feedings and he would always fall asleep while or when I fed him, whether by the nursing tube at the hospital or by my breast after that, until he was nearly a month old - And on top of that, he did lose more than 10% birth weight in the first week, he went from 5 lbs 14 oz to 5lbs 3ozs... and we were told if he didn't gain 2 ozs by the next day, he would be readmitted.... We pushed every bit of milk into him that we could, and it worked.... but it was hard because he was sooo sleepy!)
Keep us posted!!
Sandi  :)
(Dragon1973)
MedHelp Down syndrome Community Leader
& Ds Group Forum Founder/Moderator

[pertykitty]

i will ask about the hole today.  it is the center of all 4 chambers i believe.  how sad i should remember!

i called and told my soc worker to set an appt with the drs and us so i can talk about them teaching me how to do the ng tube at home.  its a bit scary to think about placing it, but i want her home.  she needs to be here, god knows what nasty stuff is lurking in the hosp possibly making her sick.  

the cardio dr said there is no chance of healing on its own.  in 3-4 months we will have to do the surgery.  im scared but i will deal because after she should be fine!  

[Dragon1973]

Sound great!  And I would definitely ask them to teach you to do the NG tube, because you are right, being at home will definitely help her to thrive with her family who loves her dearly.  And yes, who wants those nasty god knows what lurking around the hospital to get within inches of your sweet sweet baby girl.

For the surgery, I have read so many surgeries that were done and with in one week their babies were doing so so great.  I have no doubt that Macy will be the same, and she will feel so much better.  She will be up and at em and alert and going before you would even guess.  I know you are scared but the surgery is very routine these days, and is the answer to this dilemma - the hole.  All she will need is your tender lovings to get her back on track and feeling great in no time.  Try not to stress, although I know it's absolutely impossible because she is your baby.

Let me know what they said about the hole and if you find out if you can do the NG tube at home.  I have read a really wonderful (sometimes scary) story about a mom who had a baby with Ds, and had to do much the same things and more with her son... You may like to read it when you get the chance, it's called "The year my son and I were born" by Katheryn L Sopher (the same author who then wrote Gifts, and Gifts 2).  All wonderful reads.  I really recommend those if you are up to reading a bit.  I couldn't put them down!

Sandi (Dragon1973)
MedHelp Down syndrome Community Leader
& Ds Group Forum Founder/Moderator