1:18pm   A bit of a down day. Overall stable but not many baby steps today. Vent settings have remained about the same, but they have had to increase her O2% steadily due to her O2 sats being in the lower 90s today. They just did a chest xray, so we should get the results of this soon.--Hoping there is not more fluid in the lungs causing her O2 sats to drop. She is still peeing above what they want her to, just not as much as she had been. Praying this picks up again. The main thing we are do concerned about today is that early this morning and again just a few minutes ago, she had possible seizure like symptoms; no flailing of arms or legs or anything, but did have tongue thrusting and some rapid eye movement. They say this could also just be her wanting to suck on her tube; definitely hoping for that and not another thing we have to worry about. They said her vital signs remained stable during this time, so that is good. They will do a neurology consult to further assess her. Please pray this is nothing!!

They did an echocardiogram today to check the status of the heart. I am supposed to meet with cardiology shortly to get an update with this. Please keep up the prayers. Praying our baby girl keeps showing signs of progress!! Heal her Lord, just please heal her.

4:15am Just woke up needing to pump.--Wishing I was waking up due to hearing cries from our sweet Avelyn needing to eat or have her diaper changed. 'Lord, help to make this happen SOON, as I am so looking forward to this blessing more than I ever have before. Amen.'

4:13pm   So nice to be at church today to worship Our Lord and Savior. I will be honest, at times recently it has been hard to do this...I've had some interesing conversations with God...being angry, asking why, etc.--But ultimately I know He is in control and He has a plan and reason for all of this. Josh & I also truly believe God has a big plan for Avelyn and that she will do big things in life; we hold onto this...and God is faithful. So I was so thankful to be at church today; I really needed it. Worship was great.--Yes I cried; I'm trying to give it all to God even though it's so hard at times. And Pastor Paul's message was very applicable too.--Good for Josh & I to hear. Thank you Lord Jesus for today's service.

To the friends at church I saw, thank you for the hugs; that was perfect. For those I missed, I'm sorry. :( Hopefully it will get easier to talk about things. To all of you, thank you so much for the continued prayers. We appreciate it more than you know. And your support has been just wonderful; so thankful for each of you and God holding our hands to get us through this...as He holds our sweet Avelyn in His arms. Love and Hugs and God Bless You...

4:08pm   I can drive! I passed the driving test they told me to do before driving after my c-section, which will make this next week much easier. I was actually surprised the test went really well and I had no problems, so I am very thankful for this. And yes Mom...I was "truly objective" when I did it!! ;)

 3:59pm   Not much change today...but we r starting to see this is very typical...just baby steps; sometimes they say the fact that she doesn't decline is a positive.

The number on the vent (the delta p) that deals with the CO2 has improved, so that is good news. The O2% on the vent went up slightly, but not bad; still much better than what it was a few short days ago. Otherwise vent settings are the same. They were able to incease the amount of breastmilk she is getting bc she is tolerating that well, so that is good. Avelyn's neonatologist this past week said it would be nice if "Mom's milk had natural albumin in it," so I am working on that. :) (Albumin is what helps draw the extracellular fluid into the cells so she can pee it out). Unfortunately Ave gained 2 oz in the past 24 hours, so we r hoping and praying for a loss tonight; they usually weigh her during the night shift.

Thank u for the continued, faithful prayers!!

5:22pm   A funny story from earlier this week... Our main neonatologist that Avelyn has had since being in the NICU was standing by her assessing her--looking at her color, her swelling, etc. After he stood there for a couple minutes he said, "the longer I stand here, the better she looks." So immediately the cardiologist on our team said, "well then keep standing there!!" This made me laugh...and yes, I agreed with an "Amen!" :)

This brings up a prayer request...every 2 weeks they switch the neonatologists around so the one we have had working with Avelyn will no longer be on her team. We have been blessed to have Dr. Kilbride on our team.--He is the attending physician for the entire group of 17 neonatologists and he is always very informative, is great with education, and always takes the time to answer all our questions. I'm sure all of them are great, I'm just not looking forward to the transition. Please pray our next doc will also do a great job with Avelyn; I have faith that he will. --They told me his name is Dr. Okah. Thank u!!

3:33pm  The neonatologist on rounds this morning is the sister-in-law of an old family friend of my family's. Our friend is Jenni (Lukert) Voos; her dad and my dad used to referee together and I remember going on family vacations with them. Jenni's husband Brian Voos is a PT whom I met at a continuing ed course a couple years ago; at the course I heard him say he lives in Sabetha (where Jenni is from) so I asked him if he knew the Lukerts and he said 'I'm married to one.' :) Anyways, his brother is an ortho doc that we were talking about at work about a month ago (bc my co- worker's son has been very impressed by him as a doctor) and it's his wife that was the neonatologist for Avelyn today. Nice to have a small connection like this...make things feel more normal. :)

 2:34pm   Avelyn is on a fluid restriction of 120 ml per kilo per day (of her weight); typical is about 150ml per kilo per day (for her weight). We are hoping she will lose weight, which the past 3 days she has. So thankful for this!! Keep the pounds (or I guess ounces) coming off Ave!! Not only would we like her to be losing weight, but I keep telling her we are going to do some crunches in order to shed some weight/water in her abdominal area as well. Exercise class starts in an hour baby girl; rest up!! :) Please keep praying she continues to lose weight. It seems like so many things are held back right now bc of her extra fluid. They say it's a slow process; we pray it continues and know God can keep this going steadily.

Ave has done well going potty and poopy recently and she seems to be tolerating the breastmilk well.-- Today they decided to bump up the amount of this she is getting. Praise GOD!!

The only other thing they changed today is one of the settings on her vent; bc her blood gases have stabilized, they continue to gradually change the #'s on her vent for the better. Pray this trend continues!!

Gotta go now. Exercise class starts soon... :)

2:19pm  We missed this morning's rounds bc we were with Aili. She had a minor planned surgery to repair her umbilical hernia. This went great. It worked out nicely that her procedure was also at Children's Mercy downtown. I guess our slogan is "Children's Mercy, your one stop shop for your children's healthcare." :) Thankfully my wonderful mom was at home bc Brooklan was diagnosed with strep and needed a couple more hours on antibiotic before going back to school. Thx Mom!! Thankfully Brooklan is feeling better and the docs here aren't worried about it spreading.

Today Avelyn's chest xray looked a little better in the left lung, but a little worse in the right lung; they feel this is because she was on her right side just before the xray was taken, so gravity had pulled the fluid into the right side more. Her bilirubin is down, so no more light...and she is opening her eyes at times, so that has been fun!! :) She lost almost 2 ounces, which continues to be one of our biggest prayer requests.--She needs to lose weight and get rid of that fluid in her lungs, so that was definitely a positive!! Please keep praying for pee!! :) Her vent settings seem to be stable with her blood gases still looking good; all the numbers on the vent have remained low, except the mean airway pressure (MAP) which basically expands the lungs more than what they normally would. In order for us to be able to switch vents (and for us to hold her!!) this number needs to go down...so please pray for this, as well.

Thanks all and have a great Friday night!

3:02pm   Sorry...had this written shortly after noon, but lost wi-fi, so here it is finally...

When my Mom and I first got here this morning they were just starting rounds at Avelyn's bedside, so it was good timing. It sounds like our main focus at this time is to continue to get the fluid out of her lungs. It sounds like all the vent settings are improving except the one that helps keep her lungs open. This setting is still up in order to keep her lungs from collapsing-- bc of all the fluid in and outside of her lungs. Please pray this fluid in her lungs goes away!! Also, the neonatologist mentioned this morning that the process of getting rid of all her extra fluid (outside of the lungs) just takes time. He's hoping in the next week she'll lose a pound total then will remain steady for about a week after this. The renal ultrasound did look pretty good, so they did start breastmilk through a feeding tube last night, so that was good. I pray she tolerates this well and it helps her to be getting 'real' nutrition, not just a mixture of electrolytes and lipids. They started the amount very slowly...like they only gave her 2 teaspoons total last night and will gradually increase this. They will leave the bili lamp on right now, but may get rid of it tomorrow. Her blood gases had been good, but this last one they just did at noon wasn't as good; more acidotic and CO2 has gone up.--They will likely adjust the vent settings that had just improved bc of this change; just seems like so much give and take in this.

I am thankful for time with my baby girl this morning. Just me and her hanging out with no other appts so far today like we were full of yesterday. I love this little girl and just love my time with her!!! :)