Thursday, July 16, 2009

Asher Update.....sorry it took me so long!

Asher found his feeding tube...

I can't believe it has just been 2 weeks since I posted last!!! Life is just moving too fast now a days. Quick update on Asher. We have been following up with his kidney doctor to find out what exactly is causing the swelling in his kidney's and haven't really gotten any real answers. We had our first visit with the urologist on Tuesday and he gave a good description of what he saw going on and some solutions. We are waiting to get a long test done next Tuesday to get a definitive answer as to the cause of the swelling and from there we will find out if he is going to surgery to fix it or not. From what it looks like, the ureter, which connects the kidney to the bladder, is restricted some how and that is causing back pressure which is dilating the ureter and could eventually damage the kidney. We have some solutions that are being tossed around....one of which being to temporarily detach the ureter from his bladder and route it outside his body for a time. This will eliminate the resistance and allow the dilation to go down, hopefully returning the ureter to it's normal size. After that happens, Asher would undergo surgery to reconnect the ureter to the bladder. We will know more after the test. Pray for healing in Asher's kidney's and ureters!!!

We are also having a bit of difficulty with feeding Asher. Since my breastmilk production is only about half of what it needs to be, I was supplimenting with stored breastmilk from my deep freezer, which has since rut out. I am looking to begin making formula for Asher as I personally know of two children who have used this and they are perfectly strong and healthy boys. The recipe calls for a number of suppliments which need to be ordered and that takes time. So, in the mean time I had to suppliment with something and purchased some organic formula. Well, his little body did not like the powdered forumula at all and he began throwing up.....or trying to throw up since his nissen doesn't allow him to do so. We freaked out, not knowing what was wrong with him, and took him to the ER where he then proceeded to act like normal and made us feel really silly for taking up an observation room. I'm not usually that jumpy but with Asher's condition, you can't be too safe. So, from my perspective, anything that makes my child try to throw up that violently isn't good for him to be eating. So, we put the word out to all of our friends with new babies asking for any spare milk they had....and we have received a nice little bit...probably enough for a week or so of supplimentation. HUGE BLESSING!!!! While we have that to help feed him, I'm trying to see if he is sensitive to goat's milk and if he isn't, then I'm going to order the ingredients needed to make the formula and see if he can take that. I know I can't always count on wonderful mommy's to donate their milk and I need to find another solution pretty soon. My primary hope is that he would be able to nurse soon and could bring my milk back up that way. I have a suspicion though that my milk supply is dwindling because my body is just plain worn out. I'm over tired, over stressed and don't eat well as of late due to the before mentioned things. Put all that together and I don't see much milk being made.

Now, there are some bright points in this seemingly cloudy day. I just called the neurologist today to ask about Asher's EEG results of 3 weeks ago (hated having to wait that long for an answer) and it came back clear of seizure activity. So, we are beginning to ween him off of the phenobarbitol. It will take us 5-6 weeks to ween him off and then another 2 weeks for it to be completely out of his system so that's another 2 months and then hopefully he will be free. The urologist wants me to take him off of the amoxacillin (antibiotic), THANK GOD!!! I have been pushing for the to take him off of that stuff for over 2 months now. Apparently the urologist is the only doctor who sees the cause and effect relationship between using routine antibiotics and encountering super infections from antibiotic resistant bacteria. He said that if Asher is to get an infection, he would rather it is from a bacteria that they can treat with antibiotics. So, with that med gone he is just on the Phenobarbitol (which is being weened) and the Calcitriol, a Vit D suppliment used to regulate his calcium. Thank God he is coming off the meds!!!!

We are still seeing an occupational therapist for his pinky finger. It is starting to straighten out a little bit more which is good. I need to remember to put his splint on more than I do. He is also seeing a speech therapist who is working with his oral motor skills to help him eat better. Right now he is taking 1 ounce by mouth 1-3 times a day, depending on my hectic schedule (can you believe I had to take him to 5 different appointments last week alone!!!) He loves his bottles and I can't wait for him to get his full feeds that way.

Well...it is so late and I need to get some sleep. Sorry again for the delay in updates but I was overwhelmed with life's happenings and didn't want to write about them ;)

Blessings!
~Erika~

Aside from all of that, he is doing very well. Growing and rolling over. ...playing with toys and vocalizing. He is finally growing some hair, it's just blond and doesnt show up too well ;)

5 comments:

Dixiemom7 said...

Hang in there Erika! You're doing a great job! Asher is growing strong and healthy, he is God's child. Take some time for yourself, please. Even if it's only an hour at the library or a bubble bath. Your family needs a healthy you. Even if you're not getting the good meals you need, eat healthy snacks on the go and drink lots of water. Also, since Asher is taking a bottle sometimes now, is it possible to put him on the breast? Just a little bit may kick in your milk supply. You might also put him skin to skin with you while he's eating. Love you, bless you!

elvishlingo said...

Have you tried taking herbs or Domperidone for your supply? Adding extra pumping sessions? Are you still waking up at night to pump?

Matt & Erika Bond said...

Pumping every 2 hours, once during the night, taking Fenugreek and Mother's Milk Tea (even tried Dill tea because I heard it would help) and eating oatmeal for breakfast every morning. Nothing is really helping much. I never was able to pump much with my first son so the fact that I'm getting as much milk as I am is a blessing.

elvishlingo said...

You could try Domperidone. You can get it through inhousepharmacy.com

It is also called Motillium. I too have horrible supply problems due to thyroid/hormone issues and Domperidone was the only thing that helped my supply. Try baking housepoets lactation cookies.

Also, you should be pumping about 12 times a day if you have supply problems. I get up 3 times a night to have 10 min pumping sessions. Breast milk is also 90% water so drinking more water also means more milk production. Breast compressions/massage while pumping helps a great deal too. Having your baby there also helps with active let down.

I would def. give the Dom. a shot though, I know many moms that wouldn't lactate if it wasn't for it.

Matt & Erika Bond said...

Thanks for the helpful tips. I think right now I just have to psyche myself back into thinking "I can do this" instead of focusing on the fact that the milk is going away. More pumping sessions aren't helping much at all and now I'm just exhausted which causes me to become stressed out and stress has a huge role in shrinking my supply. Maybe I'll try the Beer remedy that my pastor's wife recommended.....alcoholic free of course ;)