Nov. 30th update November 30, 2008

God is so gracious to our family today!  More good news1.  Eva, as of last night, weighed in at 6lbs!  YAY!!!  She was 5lbs 3 oz just on Thursday!  She is continuing to keep the food down, however she is throwing up.  It is frothy spit up (bubbles).  The doctors don’t seem concern with this type of spit up and she has only done it once.  She also is going up on her feeding!  Right now she get 5 ml of “momma milk” every hours… the goal is 15.  That, as long as she does well, will go up by one ml every 8 hours until she reaches 15 ml.  She is also having an echo (they are checking her heart) tomorrow to see if she can go off meds for her arterial pressure.  The cardiologist is pretty convinced that she doesn’t need it, but just wants to make sure that the test supports his thought.  Going off this will make Prevacid the last med, which she will be on for a long time… maybe even her whole life.  She still has her OG tube and will probably have that for sure until tomorrow.

Pray for stregnth for all of us… for Jim as he has to start back at work and wakes up early for that and stays late at the hospital for Eva, for Josiah as he doesn’t see his mom or his sister like he used to and doesn’t understand why and for me as going back and forth to different locations for two kids is already physically and emotionally exhausting.

Saturday Update November 29, 2008

Miss Eva is doing really well, the doctors gave us encouraging news for the day!  They are uping the amount of food she gets and she hasn’t thrown up for over 28 hours!!!!!  Praise God!  She still has the OG (tube suctioning out bile) in, but it isn’t suctioning.  They said if she doesn’t gag or throw up after a while they will take out the tube!  We are excited to see her taking the steps needed to get home.  We are still a while out from coming home, but it was nice to hear that she is finally heading the right direction.  My excitement was the fact that they didn’t mention any complications or risks!  I haven’t heard that in a while!

friday Update November 28, 2008

Hope you all had a great Thanksgiving.  We certainly are thankful that we will in the day and age that we do, otherwise miss Eva wouldn’t still be with us.

Eva was still throwing up after receiving the NJ tube.  It looked like she was throwing up bile, so the doctors decided to put in an OG (oral gastric) tube.  This tube suctions out the bile by going down her throat.  She still threw up today even though the bile was being suctioned.  The doctor informed us that he medication that she was on has a side effect of GI problems that can take 2 or so weeks to correct itself.  So, he is suspecting that her intestines are not working properly from that and putting some milk back in her stomach instead of moving it further into the intestine.  He said this is a very common thing for babies to have and didn’t give us reason to have too much concern.  Miss Eva is gaining weight and is having dirty diapers, so she is getting something and growing which is great!

We were moved to the NICU now.  Which although is good as far as Eva’s eating, it is devastating to Jim and I as our entire family will not be together again until Eva is out of the NICU.  Josiah is not allowed back to even see Eva and there isn’t a visiting room that I could take Eva to to see Josiah, so that is sad to us as we are limited in taking care of our children since they are separated and can not be together.  Please pray as this will be even more physically and emotionally exhausting to Jim and I and pray that Josiah will continue to be blessed with a gracious attitude and not take it out on Eva, Jim or I… or anyone that he doesn’t see us, his mommy in particular, as often as he used to.

shelter in the storm November 26, 2008

Throughout these past two weeks I have had a song that has been stuck in my head!  Usually, it gets annoying to have the same song in your head after a while, but I find this one so comforting I thought I would share.  I did not make the video, please focus on the words.  I hope you find it as encouraging as I have.

more tubes November 26, 2008

Eva is having a new tube inserted.  It is called a NJ tube.  She currently has a NG tube.  They are similar, but a little different.  The NG tube that she has goes down her nose and into her stomach.  The NJ tube will go down her nose, through her stomach and into the beginning of her small intestines.  This will help with her reflux problem by skipping the stomach she should not throw up most of her food.  The more she gains the more likely the reflux problem will heal itself.  In most cases the problem fixes itself by the time the baby reaches 1 year old, but typically it heals sooner.  Lord willing, Eva’s will heal before then.

explanation of her reflux problem November 25, 2008

Eva’s reflux problem was diagnosed on Sunday.  The muscle the is between her stomach and esophagus is not working properly.  It is suppose to close and keep her food down and her’s doesn’t even start to close.  At first we thought it was because her throat was swollen from the ventilator tube, but that was quickly shut down by the fact she wasn’t improving.  They did a test on Sunday that showed what the doctor suspected and that was her muscle right above her stomach isn’t working.  Most cases in newborns heal itself over time as the baby grow and in some cases they do corrective surgery.  Eva is not a good canidate for surgery, so growing is the option right now.  She is too small for the surgery.

unexpected, sad news November 25, 2008

Today we were told news that was completely unexpected.  Eva’s acid reflux is an extreme version.  The doctor actually said it is the worst case he has seen in years.  He told us if Eva throws up just right one time she will be gone forever.  She isn’t strong enough to handle throwing up properly where the throw up goes into her lungs.  If she gets enough into her lungs she will, I guess the best way to describe it is drown.  The doctor has said he has seen it happen and he is concerned that if she keeps this up she will have the same outcome other children.  They want to move her to the NICU where they are used to feeding problems in tiny babies.  How long will she be there is probably what you are wondering.  The answer is at least a few weeks or worst case scenario, months.  The only problem with this is the Josiah would not be allowed back there, not even to see her.  This is a problem since Jim needed to go back to work I will need to be in two places at once.  Please pray for wisdom as we try to figure out a God honoring solution to this new developement and that God would be honored, praised and glorified in our actions and attitudes.

still there November 25, 2008

We are still in the ICU.  Eva was still throwing up so the doctors decided to do a test to see if she is having stomach problems.  Eva has a severe, but common reflux problem that doesn’t just happen in newborns, but adults as well.  Doctors will decide this morning what treatment to try.  It could be as small as prevacid or as big as a minor surgery.  We are praising God that we found out what was wrong and that it is very livable!

Moving up November 24, 2008

It looks like today we will be moved out of the ICU!  Miss Eva is pretty much off oxygen (so little it isn’t really worth mentioning), off all her medications and only has TPN (nutrtional fluids) and is holding in more “mommy’s milk.”  She still doesn’t want to suck or eat, but the NG tube is feeding her until she gets there.  The nurses have told us that this is common for babies to take a few days before nursing/eating after having a tube down their throat for so long.   They said her throat is swollen and sore, and also her gag reflux needs to relax.  She is now able to yawn and cough without spitting up now!  Praise God

Josiah is loving being able to hold Eva and give her hugs and kisses.  He is very caring and concerned about his little sister.  Thankfully, she is no longer called “baby ow” by him, now she is called “baby E” again!  If she starts crying, or even just fussing, he stops whatever he is doing and tells her very sweetly “don’t cry.”  He also loves to sing the song “You’ll Be In My Heart,” from the movie Tarzan, to her!  He loves being a big brother!

pretty in pink November 23, 2008

Miss Eva has a few less tubes today.  She now has only one needle site!  This is for her medication.  She does have an NG tube, which is feeding her, and an oxygen tube.  She is having a hard time with food in her stomach.  We are praying that the Lord heals her of this and she can keep food down soon.  She is on some nutritional fluids to help her gain weight.  She no longer has a catheter as well!  Doctors are hoping she will out of the ICU in a couple days.