Magnolia was born on 10.5.10 weighs 3lbs 7ounces and she is 15 3/4 inches long. We are extremely excited with how well she is doing!!! Currently Magnolia is getting all her calories from a breast milk and formula mixture delivered through her nasal gastric tube. The doctors want to talk to us about a g tube as well as fundoplication. We were wondering what everyone’s thoughts are on the subject. Right now Magnolia has an awesome suck however she has very rapid breathing and because of that the doctors are nervous about her aspiration potential. The speech pathologist came to talk to us and said she doesn’t feel comfortable at this point trying to work with Magnolia and bottles. The speech path said she will work with Magnolia on her suck by dipping a pacifier in my milk, but didn’t want to try bottles until we can get Magnolia’s breathing slower. We are struggling with the g-tube decision and we would love to hear about how you decided to either g tube or not and why.
THANKS!!!
~Hilary http://iwontweargrey.blogspot.com/
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Congratulations! Magnolia is beautiful!
I will give you my opinion and background with the g-tube but I know several moms who wish they did not have the g-tube. I personally think it is the best thing and strongly believe Amelia would not be where she was today without it!
Our local hospital where she was delivered was not going to let us leave the hospital without one and I was against it because they hadn’t even tried a bottle. We were transferred to CHOP and she began eating from a Haberman bottle. She did great afor the first five months and was slowly weened off the NG tube. But then she got several viruses that winter and stopped eating by mouth so we went back to NG tube until she was well enough for a gtube surgery. i would like to say that those five months of her eating by mouth were wonderful because we did not have to worry about medical supplies for her but they were so stressfull. Feeding took about an hour and she ate every three hours. She gained very little weight during this time and I worried constantly about her eating enough. When she finally got her gtube I can not even begin to explain the stress that was lifted off of me. I knew she was getting enough to eat and she was able to be fed all night while she slept. She also got all of her feeds when she was sick and she was sick a lot the first two years.
But this is just my experience. There are many WHS kids who do not have gtubes and are doing great without it. But I wish I had gotten one for Amelia before she came home! Congrats again and keep sending pictures!
Chrissy (mom to Amelia)
Congratulations on Magnolia’s safe arrival 🙂 I looked at your blog, what a doll! She is beautiful. Sounds like she’s doing really well. Sabrina was 3lb8 so almost the same. She was born at 34 weeks.
I can’t really offer any advice about the feeding. Sabrina has always been a difficult feeder, she wouldnt breastfeed in the beginning but she would take a bottle. It was so hard in the early days to get her to drink more than 50ml at a time. (Think thats about 2 oz.) She has since gotten a lot better and will take up to about 180ml. But it’s still very random – theres no predicting what the next feed will be like! I dont know if she will need a g-tube in the future. Sabrina also had the rapid breathing when she was a newborn. She was actually ventilated for a day because she had a hole in her lung. By the time we took her home her breathing was great.
Take care, I look forward to hearing more about your lovely Magnolia.
Leonie
Congratulations Hilary, that’s great that Magnolia is showing signs of sucking. Sorry I can not offer much advise re the g-tube. Eve had a ravenous appetite and would DEMAND her bottle every 3 hours, breast feeding never really happened for her and I. G-tube is a big decision however I am sure you will make the right choice for you and your daughter.
Breanna (mum to Eve – 7 months)
Ryley was born at a relatively good size (6lb 7ozs), but was never really able to suck very well. He could never attach for breastfeeding, though I did express for 2 months. He had severe reflux right from birth and used to throw up half his feed most of the time. It used to take him a long time to feed, but I was pretty patient and persisted with him, despite the fact that he threw so much up!
We always opted to go with oral feeding, but when he turned 6 years old and started the Ketogenic Diet (for seizure control) we really had no choice but to get a g-tube. He is now on the “normal” charts for weight for his age and is heading that way for his height, and that is down to us being able to ensure he gets all the calories he needs.
We don’t believe we should have got it earlier or anything, but have only seen improvement in his health, seizures and growth obviously!!
Every child with WHS is so different. Before you make the decision, ask for tests to be down on her swallow reflex. If she has no problem swallowing and she is sucking well, then you probably don’t need to have the g-tube put in? I would give her a go with the bottle too while she is in hospital. If she is positioned well then she shouldn’t aspirate. Have you seen a physiotherapist or occupational therapist yet?
Big decision to make, but definitely get more than one opinion if you can!
Best of luck!!
Anna
PS. Magnolia is so beautiful.
Congrats Hilary! Magnolia is gorgeous! I also checked out your blog! Great photos!
Our daughter Emma was born 2 weeks early at 3lbs 11ozs and 16 inches. She’s going to be 4 in Decemeber! Feeding Emma in the beginning was not easy most the time! It took a long time to feed her (most of the time an hour), and I was pumping breastmilk for her that we mixed with some formula. She also would throw up often. But she was growing well until about 4 months when she took a dip on the growth chart and they did an NG tube to get more into her. I hated the NG tube, she pulled it out a lot! After 3 months of NG, we decided to go ahead and have her get the G-tube, so she got that at about 7 months old. It definately made things a bit easier, especially in the winter when she got several colds and refused to eat orally! I still sometimes wonder what would’ve been different had we not gotten it, but I do believe it was the best thing for her!
Only two things I would do differently I think: First, I would have continued to give her tastes of food at 7 months. She was interested in rice cereal, but the feeding clinic told me her neck was not strong enough to swallow well (but they never did a swallow study on her). She is now interested again in eating orally, but doesn’t understand that she needs to swallow food! She just puts it in and then drools, spits, or takes it back out! We’re working on that though with a speech therapist and the feeding clinic!
Second, after they did the G-tube the dietician really upped her calories a lot and she got overweight, which I feel made it take longer for her to get mobile!
So, that’s our story on the G-tube! (btw, she did NOT have a fundo) I’m sure you will make the best decision for Miss Magnolia! You guys will be in my thoughts as you prepare to make this decision! 🙂 You have a beautiful family!
~Shannon, mom to Emma (and 3 other cuties)
Hi Hilary,
Dylan was born with a cleft palate and he also had rapid breathing for the first few days. The NICU did put in an NG tube and they didn’t let us try to feel him orally until day 4. I did try to breastfeed him but was unsuccessful due to his cleft palate and his inability to make a seal on my breast and draw out the milk. He had the NG tube in for his entire stay in the NICU (20days) and I finally said “will he need a G-tube or can we please see how he does with only oral feedings?” So, they pulled the tube and watched his intake for 24 hrs and said he was fine and he was discharged. I will say this, feeding him was very very difficult in the beginning. It would take almost an hour just to get a few oz. in him, but he eventually got stronger and his suck improved and it got easier. I pumped milk for him for 9 months and I would add milk fortifier to his bottles at every feeding to add extra calories. He eats like a champ now and drinks from a cup but I still have some doctors ask if we have ever considered a g-tube because of his small size (he is currently 16lbs and 29″ long at 19 months), but our Pediatrician and Geneticist both feel that his growth is perfectly fine, just slow. It is a tough decision, however if I was in your shoes I would probably wait on the g-tube and see how she does. She is only a week old and if she has a good suck then why not let her try to feed orally and if she is positioned correctly it should help prevent aspiration. I personally think that the g-tube should be a last resort. I hope that this helps. Congrats again and enjoy your little bundle. 🙂
Hi Hilary,
Congratulations, Magnolia is beautiful, love the pics on your blog! Our story is similar to Kristy’s and Dylan’s. Brodie was 5 lb 5 oz when he was born full-term and had a cleft palate. He spent a week in the NICU and was unable to breastfeed due to the cleft palate, we started the Haberman bottle right away, I pumped for 3 weeks and then switched to a calorie-boosted formula. The speech pathologist in the NICU was very little help with the Haberman, but it didn’t take long to get the hang of it. Until Brodie’s surgery at 1 year old to repair the cleft he had a very poor suck, never could use a pacifier even. But he steadily gained weight on the Haberman for 6 months – it was hard work getting Brodie to take every ounce he ate, only 2-3 oz. at a time for about 6 months, every 3 hours around the clock and sometimes it would take 45 min to an hour. We had a hitch at 6 months when his reflux got very bad with the introduction of solids which were boosted with butter at the suggestion of his feeding team- big mistake. But once we scaled back to primarily formula and gave Brodie more time to develop before introducing many solids he was on track again…we basically focused on formula feedings til he was a year old and he weighed 14 lbs. at that point. We are glad we avoided the g-tube so far- Brodie is 16 mo. old and drinks out of a cup and has 5 bottles a day and eats 2 jars of purees 4 times a day. We still have to work hard to put weight on him but we are happy with his development to new feeding stages. Whatever you decide will be right for Magnolia. There are pros and cons both ways. The more information you have the better, this was just our experience. Brodie never had rapid breathing and no trouble aspirating though it was a concern with the cleft palate.
hi hil-
i am bored in computers…:(it would not let me meave a comment in the other site……so i came here…:) so how is magnolia?????????????????????
well bye:)
isabella:)
p.s. give magnolia a kiss for me:)