[azedazobollis]

I wasnt quite sure how to title this post. Im not so sure I really have any questions at this point. But I wanted to get some thoughts out there. I am a foster mom. My new baby is 15 days old today. Her parents are both mentally retarded. Katie was in the NICU for 11 days after her birth as a result of respiratory distress. She was born via c-section at 37 weeks 8 lbs 2 oz. mom had gestational diabetes. As of yesterday, she is 7 lbs 15 oz. Katie had constant problems with keeping her blood sugar levels normal and was treated for pneumonia and sepsis infection. (one hand typing now.. excuse the typos). Her suck is nearly absent. there were no remarks about problems with feeding in the nicu. we have a visiting nurse daily to weigh her and asses her. she takes .75 oz -1 oz. at a feeding and this is a big improvement. The best feeding I had with her was using an SNS on my finger and continuosly stimulating her to move her tongue. She took just over an ounce in 45 minutes.

At this point, per dr.'s request she is on enfacare 22 cal. formula and birth mom is pumping some milk too.

We are trying a variety of nipples. I have the red preemie nipples (the taste of them even after washing and boiling is awful) She had a couple good feedings with them because they are fast. She doesnt seem to have a good suck reflex. (On that note, she doesnt have the foot and toe reflexes either when you rub your finger up and down and the toes curl round as you rub upwards). Im thinking that on Monday they may start her with tube fedings if we cant get her eating. I have all the brands of nipples fast and slow... The best ones that we have now are nuby brand and I poked extra holes in them (Dr. told me to). She isnt choking and she is getting the milk with this method. However, the best way that I have gottem her to suck is with the gumdrop pacifier. I am going to use the SNS feeder with the tube taped to the gumdrop pacifier. Having the sides of her mouth sealed off is helping her suck. Wide mothed nipples like avent, playtex and soothie are too hard for her to push with her tongue- even with fast flow she doesnt "get it" with them.

Any thoughts? Ideas? Experience? In addition to this, she has some bumps on her head like cysts. Dr. said, we will checkthis out on Monday- the main concern now is getting her to eat. I want to stress that I want to be able to keep her home. I am afraid they will put her back in the hospital. I have her skin to skin in my sling hours a day and I dont want her alone in the hospital. If we can get her to gain weight, we can keep her home.

One more thing: Mom caomes to my home and I am her mentor. She is high functioning but cannot care for the baby right now. Last night, she bathed her and changed her. She tried to feed her too. This baby cannot latch onto the breast. I even tried myself (dr. told me to

) . Her tongue is short and rests curled upward with her mouth open when asleep.

 

[USAmma]

Hi! Sounds like she's in a very good place with you right now, that you care about her and the birth mom is trying too.

That's awesome that she's pumping a little bit!

It sounds like she needs help though. The lack of sucking reflex at her age is unusual. Usually babies will suck well if they are born full term and no other issues. Was she on a vent or respirater in NICU? The kind that goes down her throat? Or was it just on her nose? If she had it down her throat she may have developed some oral aversions and is associating her mouth with bad things and is afraid to eat.

She needs to be evaluated by an Occupational Therapist ASAP because the lack of reflexed with her feet and all that, it could indicate other issues going on. Perhaps she has low tone in her mouth and is unable to suck well. Since she is foster care she should be covered by Early Intervention for a free eval and therapy. The sooner the better.

If she needs a feeding tube, they will probably start with one down her nose, an NG tube. These are good for short term use and will prevent her from starving. I hope she doesn't need a tube, but if she does, she will most likely be able to stay home unless she has other medical issues going on that require a hospital. Many kids on NG tubes go home right after placement. I was trained on how to place it myself by a nurse and was able to do it myself after that. I had her on the NG tube for four months before going to a gtube (which I also change at home). If it looks like tube-feeding is going to be long-term and she's still going to be working on eating by mouth too, a gtube is a better option for most kids. NG's tend to create more oral aversion because the tube going down the back of the throat can be felt when she swallows. Also, it can make reflux worse in some kids. Other kids are fine long term with NG's.

As far as nipples go, it sounds like your instinct to go with SNS is right on. However it would take a LOT of work to continue feeding her at that rate. You might look into the Haberman Feeder. They are made for preemies, babies with cleft issues, and other difficult feeders. Many babies do well on them. You might be able to find them at a breastfeeding supply store or by calling an LC to ask where they are sold. Most NICU's have them.

Good luck!

 

[azedazobollis]

The OT will see her next week. I got a haberman feeder and she is eating!!! one ounce in 10 minutes!!! huge improvemenT from .5 oz in an hour!!!

Mom came to visit today and pumped. We tried to get baby to latch, she did for moments and mom kept trying. We will get there!

 

[USAmma]

That is awesome!!! Sounds like she's doing great under the circumstances.

 

[Guinevere]

Just saw this...hooray, so happy to hear that she's eating better!

I was also going to suggest the Haberman -- I have a 16-wk. old DD with Down Syndrome and the Haberman was an absolute godsend for us. She was really pokey with any other feeding method, including any and all bottle nipples, SNS, finger feeding, etc., and it was really using the Haberman that allowed me to transition her effectively from an NG tube to the breast. I'm thrilled to say that she's been nursing exclusively now since she was 12 wks. old, and I have to give the Haberman much of the credit -- it really helped her to strengthen her suck and build stamina for nursing.

Hope things continue to get better and better!

Guin