And it was all going so well until...

[renaissanceed]

I am still doing well, well rested and relatively energetic, but baby Silas is not doing so well.

I started to get a bit concerned about him on Tuesday because he's such a sleepy baby. He will sleep 3-4 hour stretches all day long and hardly eats when he is nursing. I told myself it was just such a change from DD that I wasn't used to it, and he had regained his birth weight within a week, so everything was likely OK.

But then on Wed and Thurs I really paid attention to him and he really isn't nursing very well - his latch is fine but he falls asleep so fast and no amount of toe tickling or face tickling or naked time with me seems to help. Also he isn't peeing as much as they'd like for a baby his age. And he actually lost some weight.

Today the MW called because one of the tests they ran on him came back with higher than normal results so she had to come by to take blood again so they can run it again to see if the levels go down. And she weighed him again and he hadn't gained any weight since Tuesday, and in fact was still down from his weight on Tuesday.

So now I have to really try to wake him up and get him to nurse and empty the breast. I'm really having to limit DD's time on the breast too because she would empty them both given the opportunity.

I just need him to gain 4 oz by next Tuesday - so I guess I'll be spending a lot of time nursing in the next 4 days. Poor little guy - no wonder he's asleep all day and night - he's not getting any calories to do anything but sustain him.

So now I have to really try to wake him up

[Curlita]

That is the most stressful thing -- worrying that baby is not getting enough to eat. Sorry you are going through it. Here are a few ideas from the Breastfeeding 911 thread I'm compiling. Good luck - it's probably a temporary trauma. You and baby will be OK.

Keeping Baby Awake to Feed
·Take off baby’s clothes so they aren’t too comfortable. You can even use a wet washcloth to keep him awake (sounds harsh, but I did this with Dylan).
·The grasping instinct and the sucking instinct are linked. Hold baby’s fingers and as s/he grasps your finger, s/he will also suck.
·Pull baby’s hand and arm up and away from their side. They will feel like they are being pulled away from the breast and instinctively start sucking again (courtesy of University of WA lactation consultants).
·Compress the breast while baby is sucking. Squeeze gently to express milk into their mouth, then release. This keeps the milk flow going and keeps them more interested in the project. (courtesy of University of WA lactation consultants).

[*Lindsey*]

Wake up and eat, Silas! Breastmilk is delicious.

I hope things improve, Edwina. How very stressful.

[renaissanceed]

Of course I've just looked up some info on what his test results were +ve for (galactosemia) & if he does have this, bf him often will not help as he will be unable to digest the galactose in bm & it will build up in his liver & become toxic. Urgh Hoping the next results are -ve.

[Valerieg]

I hope the results are negative as well...and second the recommendations in the PP. Hopefully things improve quickly for you guys! Glad you're feeling well though.

[sorteep]

OH Edwina, I am so sorry for your stress... I am praying for a neg galacto test buuuuutttt if pos it is totally able to be managed (have an ex- sil with a galcto baby) best to find out NOW than later the ahrd way,,, still praying for neg but I know you will be OK no matter.. many hugs nurse Silas, nurse!

[Kontessa]

You poor mama, what stress this must be for you! Poor baby, being here is such work and I am sleepy too. He will get it though, he has to. We are here for you, lots to read while you are feeding baby!

[Googy]

Edwina,
I went through this with DD--
I had to set my alarm and wake her up every 2 hours all night to nurse, plus to the whole naked/tickling thing. It did work, though it was exhausting. I was so relieved when she finally gained her weight (it took a month to get her back to her birth weight) and I could let her sleep longer at night! Hang in there!

[Googy]

Originally Posted by renaissanceed

Of course I've just looked up some info on what his test results were +ve for (galactosemia) & if he does have this, bf him often will not help as he will be unable to digest the galactose in bm & it will build up in his liver & become toxic. Urgh Hoping the next results are -ve.

Oh my--so scary--please keep us posted!

[GinaRae]

Scary, mama. I am SO sorry you have to stress and wait for more news!!! Send us updates on the feeding.

[renaissanceed]

Well, now DH is all concerned since I told him the news and he's done a bunch of research and is pushing me to start feeding Silas soy formula tomorrow since if he does have galactosemia, the sooner we stop feeding him bm, the better the outcome by some accounts.

I'm really torn. On the one hand, he could be fine. It could be a false positive, which happens. I have no problem working hard to get him to stay awake and bf every two hours if he's just sleepy and I don't want to ruin our bf relationship.

On the other hand, if I'm making him sicker by continuing to bf him, I would feel absolutely awful for having continued.

I'm hoping that if I sleep on it, I'll get some sort of resolution in the morning.

Right now we're just monitoring him for signs, but of course as soon as you get a suspected diagnosis, everything is a sign. :

[Googy]

How high was his level on the first test? I'm confused as to why he needed a second test--usually a standard newborn screening is highly accurate for detecting galactosemia. Did they just do a second newborn screening today, or did they do a Beutler/Hill/Florida test specific for galactosemia?

Does he have any diarrhea, vomiting, or jaundice? Is he refusing to eat? Is he irritable or having convulsions? If not, its a great sign that its probably not galactosemia.

What does your pediatrician say???

When will you get the test results??? This is something that you shouldn't have to wait to weekend for!!!

At this point, since you don't have an official diagnosis, I would keep breastfeeding unless you start seeing any of the above symptoms. It would be a shame to lose your breastfeeding relationship now for no reason.

Hang in there and PLEASE keep us posted!!!!!!! I'll be really thinking about you!

[meisterfrau]

Can't type a lot holding the baby, but you and Silas will be in my thoughts. Worrying about a maybe-sick baby is so stressful!

[renaissanceed]

Well, DH and I did a lot of talking last night and decided to leave it until today. I think Silas is doing better - more alert, nursing better, fewer tremors, no vomiting for a few days. He's never been jaundiced or had convulsions or diarrhea and as for weight gain - well, hard to tell what's happened since yesterday.

So I've decided to keep on nursing and not switch to soy formula right now. I'm hoping this is the right decision.

I don't know all the details of the tests they ran. I know there was a problem with lab A where the blood samples were dropped off not getting the samples to lab B where they do the testing in a timely manner and not sure if that could have affected the tests.

I doubt they'll be able to get results before Monday at the earliest.

We don't have a pedi yet, so the MW got called with the results and she honestly didn't know much, since galactosemia is very rare and she's never had a positive result before. I think they are doing the more specific test that Googy mentioned in the screening but I'll find out more after the weekend.

For now, we're going to take it easy, wake up baby Silas every two hours to nurse during the day and try not to worry too much.

Thanks for your support.