Posted (Tina) in All Posts on January-14-2008

Ella did fine this early morning and was being herself with Nurse Michelle at 5am. She was not behaving tremendously different for Nurse Andrea during the morning.

Around noon, based on her saturations alone, it seemed like she was starting to work harder. Nurse Andrea was convinced that she was fine and tried to convince me to look at Ella more than her numbers.

She was asleep for the early afternoon until around 3pm. As I sat and watched her saturations, they seemed to slowly be creeping in the wrong direction. I was getting the feeling that she wasn’t horrible, but was having to work a bit harder than yesterday around the same time (and it had been almost 48 hours since her last dose of IV Lasix).

When she woke up around 3pm, she was fussy and not consolable. During that time, Nurse Andrea and I were trying everything to make her happy. Nothing was working. Finally, Nurse Andrea moved her back up to 1 liter of oxygen (up from 800ml) and that seemed to help. The whole episode lasted about 45 minutes and she finally fell asleep again.

About 4:15pm, Dr. Kays, Dr. Saxonhouse, the nurse practitioner and a fellow surgeon came over to the bedside. Dr. Kays sat in the rocking chair, smiled at me and said, “So, what should we do next?” and looked right at me. I laughed and asked, “What do you mean?”. He expressed that he had some thoughts, but wanted to know mine and to make sure that we are addressing my concerns.

One idea that Josh and I discussed earlier was the concept that the Lasix via IV gives her body an immediate burst of diuretic. I told Josh that I wonder if increasing the dosage of the Bumex would have greater impact than increasing the frequency of the dose.

When I asked Dr. Kays during the meeting, he mentioned that pharmacy told him that .25mg was the highest dose that was recommended for a neonate, although he doesn’t feel that giving her a higher dose would necessarily have a negative impact on her.

After about 15 minutes of discussion and a round of voting by the medical staff, here were the decided steps for Ella:

  • Give 1 dose of Lasix IV right now at 4:30pm. Since we have the IV access, let’s give it to her to keep her more comfortable, while we continue to test different methods.
  • Try increasing the Bumex to 1.0mg total and only administering it twice per day, at 11am and 11pm, when her tummy is less likely to be full (hoping this helps with absorption).
  • Since the Portagen is high in sodium content, try adding breast milk 25% to feeds and monitor tolerance.

Since we gave Ella the Lasix via IV, it will take almost 2 days to once again see if the increased Bumex and dosage strategy is really working. However, one thing is positive. She just had Lasix IV and increased Bumex, so if she does have a fluid issue in the next 24 hours, we can make the assumption that it is likely to be the food and not the diuretic.

A note of praise – – the culture came back and Ella does not have RSV. We know that she has a cold, which is not helping her entire situation.

Since they determined that Ella does not have RSV, they moved Ella out of the isolation room and over to to bed #5 in the NICU 3 (which is out in the more open space). One of the nurses mentioned that we should make her a NICU Tour shirt and list all the beds that she had occupied. So far, there would be 7 different beds!

About 1.5 hours after the Lasix, Ella had a huge diaper. This means that there was fluid in her system that needed to be gone. Again, Lasix via IV is magic!

Please pray for the following things:

  • That her virus/cold would clear up.
  • That she can tolerate the transition to breast milk and eventually a standard formula.
  • The strategy with Bumex will work. If not, that the medical team will have increased knowledge and discernment to come up with a long term diuretic plan for Ella that will work.

Thanks for the thoughts and prayers. We continue to trust in Him and His timing.

Psalm 9:10
Those who know your name will trust in you,
for you, LORD, have never forsaken those who seek you.

leslee on January 14th, 2008 at 6:33 pm #

keeping you in our prayers
rusty’s (& par’s) cousins in NC

Tracy Schultz on January 14th, 2008 at 7:22 pm #

Breast milk is great for keeping poops loose, so I’ll bet the addition of that will help move things along (in addition to the diuretic changes). Continuing to pray for you and your family!

Williamsburg on January 14th, 2008 at 8:14 pm #

Tina, we are so amazed at the way you have used your considerable skills and resources to just dive into this entire educational process with Ella – what an incredible gift to your precious daughter. I know it’s hard not to know for sure what steps to take next, but I imagine it must be affirming to be considered an important voice in the team based on your knowledge and the instincts of your heart. We do continue to lift you both as parents up alongside Ella and her fight to progress, trusting God as always in it all. Much love and hugs. XOXOXO

kristin on January 14th, 2008 at 11:18 pm #

Wow! 7 beds…this little girl is certainly working the gypsy gene passed on from her Mom & Dad!!

Ella, we are praying for you. Your eyes in this picture show your strength.

You are so loved.


Joel Snyder on January 15th, 2008 at 12:06 am #

Ella, I think you have everyones attention and they are all on the same page trying to figure out what to try next. I am praying that you get over your cold and try some of Moms milk lets see how that works. Tina and Josh I will be ready to board the new Pony along with the dogs. I will check on you three again later. Love,Grandpa!!!!!!!!!!!!!!!!!!!!

Matt, Abby, Austin & Caed on January 15th, 2008 at 6:35 am #

However, as it is written: No eye has seen, no ear has heard, no mind has conceived what God has prepared for those who love Him.”
1 Corinthians 2:9

We continue to pray for you three as you go through this time. We pray for wisdom and guidance for Ella’s team of Doctors and Nurses, we lift Ella up to the Lord for healing, peace and comfort, we lift you two up to God for peace, rest and strength. May His mighty arms wrap around your family and surround you with His matchless love and grace.

Laura Marold on January 15th, 2008 at 7:03 am #

Hopefully, all the listening really helps now (along with alot of intellectual horsepower). Listening to God. Listening to the healthcare professionals and them listening to you both. Please, let this work!!!!

Lizotte Family on January 15th, 2008 at 7:21 am #

I think Miss Ella is making progress. I’m also pretty certain that she will love sports, judging by the way she loves watching people run around. hehe
XOXOX Big Hugs for you!

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