Saturday, May 2, 2009

Having a BABY!

How many of you are on the edge of your seat right now wondering if I am pregnant??
NOT ME SILLY!!! There is no baby in this belly! I think the Lord knows my two precious girls are all that I can handle for the time being!

But there are other people having babies...lots of them! I could not tell you who they are...I do not know them!

When were at the hospital in Lubbock, I heard this lullaby playing over the PA system...out of nowhere and then it stopped! When Lily's nurse came in to check on her I asked what the lullaby was all about. She said that they play it every time a baby is sweet is that!! I heard it several times throughout the morning and everytime I thought about the moments right after my girls were born...sweet memories! THEN....later in the afternoon I heard it....not once, not twice but THREE times in a row....a lady had delivered TRIPLETS! Congrats to her but NO THANKS!!

Sorry for my delayed post! We are finally back home and things are back to the normal madness! And to think I was bored those couple of days we were in the hospital....why on earth was I not enjoying the time to rest and relax???
Anyways, I got a call from Dr. H yesterday about the results from Lily's test. It was confirmed that she does have GERD but it is not such a severe case that it should be causing her to not eat, not gain weight, have blue episodes, have respiratory problems and wake up screaming/arching her back/thowing her head in what appears to be pain. This is what I was afraid of...putting my child through this and still not having an answer....being told that there is something "not right" with your child but not knowing what it is is an AWFUL feeling...I feel so helpless and my heart breaks for my sweet Lily.

Dr. H and Dr. S talked....Dr. S is Lily's pediatrician. Dr. H reviewed Lily's history with Dr. S and thinks that Lily should be looked at from a neurologic standpoint. When she was about 6 months old she started jerking/shaking randomly...for just a few seconds at a time and it was thought that she might be having seizures. She had a CT scan and an EEG done but nothing showed up so it wasn't really worried about. We saw a pedi neurologist in Lubbock and he said he was not really concerned. She has continued to have those every now and then but I have never mentioned it again because they had ruled out seizures and were not worried about it. Well, now they are.

Her specialists and Dr. S think that all of her symptoms have to be related but they aren't sure how.

An MRI has been ordered and while I want them to find out what is going on, I don't want Lily to have to go through anything else. She has gone through so much in her 12 months of life and as her mom, I want to wrap her in my arms, keep her safe, make everything okay and not let one more test be performed. This last procedure she had done broke my heart. I had to take her in to the OR and hold her while they put her to sleep...I was crying and kept my head turned the whole time...I didn't want to see. I don't ever want to have to do that was horrible!

In my eyes Lily is perfect. Now I have to remove my "mommy goggles" and think about it from a medical standpoint. There could be something wrong...but I just don't want to think about it.

Lily is now wearing a pulse ox monitor at night....well she is supposed to be! When she woke up in the middle of the was no longer on her cute big toe...for how long I don't know!

On a brighter note, Lily slept from 10:30 to 3:30, ate and was back asleep by 4:00...good job baby girl!! Some of you are probably wondering why I am still nursing her...especially at night. Lily weighs 17 1/2 pounds and is 27 inches long...she is approximately the size of a 6-7 month old 12 months. She won't take a bottle or a sippy cup and gets few calories from the small amount of food she eats during the day so breastmilk is still the main source of her nutrition. And I have to take advantage of any time that she will eat, even if it is in the middle of the night.

I have to be honest, I have been strong for months now but I am starting to get worn down. I am exhausted physically, mentally and emotionally.

Please keep us in your prayers. Pray for Josh and I to have strength and wisdom and pray for a miracle for Lily. Pray that she starts eating and growing and that all of her symptoms go away....God can do anything and we believe he can work a miracle in our sweet baby!

Thank you listening to be vent some frustration, putting my thoughts into words is actually quite therapeutic!

I hope everyone has a wonderful weekend!


Anonymous said...

Bless your sweet family's heart. You are a trooper. I love reading your is so evident how much you love your girls and Josh. Brent and I are praying for Lily, for a diagnosis and cure, for patience, strength, peace and rest. You are amazing. Kiss little Lily for me and bring Kiley down to play with Emma anytime. If you ever need to just call or come by and vent and yell and get mad, I would be glad to listen.