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Multiples
T&P needed please!!!
My niece (sister's daughter) was born at 34 weeks. She is now almost 8 weeks old and is still in the nicu. On Memorial day, she was transferred to another nicu, about an hour and 20 minutes away from my sisters house. This hospital has a bigger nicu and more specialists/resources. Today, she failed her swallow camera test (sorry, I don't know the exact name for it) and it was shown that she is aspirating during her feedings. She also has very bad reflux and pretty consistent desaturation episodes. My sister thought that she was going to come home today (tube and monitor free!) but now has learned that she will have to come home with both a monitor and a feeding tube. My sister has a 3 yo and a 5 yo and is exclusively pumping. I just feel so awful for her. She is trying to juggle so much and is pumping round the clock, not getting much sleep and driving 2-3 hours round trip to the hospital daily. 
So if you could spare some thoughts and prayers for my sister and her sweet baby Natalie, I would really appreciate it. Also, pray for me and my patience as I've had my niece and nephew and both my boys for the past two days. 
I love them to death and am very glad that I am able to help out, but having a 5 yo, 3 yo and two 17 month olds while pregnant is insanely exhausting!
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Re: T&P needed please!!!
Peanut Butter and Jelly!
<a href="http://s568.photobucket.com/albums/ss122/AliceNP/?action=view
Sending you many thoughts and prayers. For your sis and niece and for you. You get sister of the year award in my book. I wish my sister would have been sweet and offered to help me.
My DDs were born at 32 weeks. Lauren, on the right in siggy, was going thru exactly what you are describing. She went thru 3 types of vents.... her 5 weeks NICU stay was rough. When they transferred her to the step down unit, she began desaturating....and her oxygen dropped down to 30! It was awful to watch, as I am a nurse. I insisited she was refluxing after feeds, and no one believed me. Finally, I turned her to her tummy after feeds. Of course, to be safe, they want babies on their backs. She couldn't handle that. To make a very long story short.... I was her advocate, and she went home on oxygen. Lauren needed oxygen with feeds for 3 months at home. I could not imagine spending all that time in a hospital. With the oxygen help, she was able to handle feedings safely and also sleep safely on her back. I feel for your sister. I have been there. it gets better. but the reflux road can be a long one. ((Hugs))
*just adding:: by no means do I think your niece will need oxygen. Lauren's lungs were very weak.
She did come home on a monitor. It was a nice peace of mind to have her on the monitor. Some reflux things that helped us; a swing (that can go side to side)...keeps baby upright after feeds. Also a bouncy seat is a must.... helps to keep them elevated throughout the day. I also bought wedges at BRU. To raise the head of the bed when they are asleep....helps with reflux. I kept a wedge in the pack and play, and one in her crib. Oh, and a Baby bjorn carrier.... I carried her a LOT, as being upright helped with her reflux.
Sending lots of T & P your way!!!!!
FWIW, I work as a speech therapist in a hospital and the swallow test or Modified Barium Swallow Study, indicates that she is not able to tolerate the thin consistency that formula/breast milk naturally comes in so they may need to thicken her feeds. I would highly recommend that she continues to work with the SLP's (speech language pathologists) and lactation consultants while there in the NICU to figure out what thickness/bottle nipples/supplementation can be used as returning to breastfeeding is not out of the question in this situation but will take some extra work. Plus hopefully the GI (gastroenterologist) MD is keeping a close eye on the reflux to prevent those desatting episodes and may be able to manage it with medication and/or position techniques. Another thing I would recommend is finding an SLP that she can follow up w/ when she and her LO is discharged to monitor the feeding/swallowing issues. She will definitely want to look for someone who has experience with feeding/swallowing especially in the pediatric setting, as this is a very complex subject and not all SLP's have the training/education in it.
Unfortunately, this exact situation is very common in babies (especially when multiples are involved) born before 35-36 weeks as that suck/swallow/breathe reflex is not as fully developed as it is in babies born closer to term.
Hope some of this information helps
Sending lots of T & P's for you all. FWIW, my twins were 26 weekers, DD is having surgery Monday to have a G-Tube and Nissin put in, so I can totally relate to what your sister is going through. Even though it sucks that her DD was moved to a hospital further away, it is a great thing to be in place with specialist who know what they are doing. My DD was transferred after 40 weeks gestation and let me tell you it's like night and day...I feel like we wasted so much time just "waiting" at the first NICU.
((hugs))
Thanks so much for the t&p ladies. Also, thank you for the advice. I will pass it along to my sister.
kmb585-thank you so much for sharing what you know. Unfortunately, the thickener that they usually use in the hospital has been recalled by the FDA, and the hospital won't use a powder thickener because it's not sterile.
It's just so frustrating because they won't even let her try to see if it helps.