5:54am   This morning I am missing our home away from home we had the past few days. Don't get me wrong, I am so thankful to be home, especially to be back with our big girls. :) Aili has changed in the few short days we were gone; that kid cracks me up...she makes me smile. And Brooklan seems like she's been the little mother hen, watching out for her sister and helping grandparents while we were gone. But while the girls are still sleeping this early in the morning it would just be so nice to walk down the hallway to see and love on our baby girl.--So thankful for the facilities that allowed us to do this the past few days. They said they have only had the area where I delivered for just over 3 years now; there used to be no labor and delivery area at Children's Mercy, so the mom would be recovering at a different hospital while her baby got transferred there. Can't even imagine. We will head up there later today and for now I will hold onto Avelyn's blanket. :)

4:22am  Yesterday while sitting with Avelyn a chaplain stopped by. After visiting with me for a minute, I got a bit teary eyed and she offered me a prayer blanket. She said it is something parents can hold onto at home while their baby remains in the NICU. Before she brought it back out to us she said she prayed for our baby girl. We have decided to travel to and from Avelyn with it. We will take it to the hospital when we go and sit it in her bed, and when we come home we will bring it with us. We have told the girls they can love on it whenever they want, as if loving on their sister, and I know I have already clutched onto it at times. Thankful for these little things that make a tough time a bit more tolerable.

Have a great day all. God Bless you for your continued prayers.

11:13pm Josh & I got home tonight around 7:15. We did fairly well, but yes I did cry as we were walking out. :( It's just not natural to leave the hospital without your new baby girl. However, I definitely felt God's presence and after we left I did better. Thank you for all the prayers re: this!! As we were leaving, Josh said she is in the best hands she can be right now...meaning not only the nurses, physicians, and other staff, but also God's hands. So thankful fir this.

Anyways, Josh and I decided when we got home that we would all go to Sonic, and then the day Avelyn gets to come home with us, we will do the exact same thing. So Josh, Brooklan, Aili, my mom, and I went to Sonic together. While there we also sang happy birthday on the phone to my Dad. Happy Bday Dad! It turned out to be a good night and we are SO looking forward to doing this again when our sweet Avelyn gets to come with us. :)

Entry by Josh:

11:32am  Since Wednesday our home away from home has been Michele's hospital room, which is within a 2 minute walk of Avelyn.  Tonight we check out of the hospital.  Please pray for God to guide us as we begin the transition back to some type of normal life.  We both miss our other two kiddos, and Grandparents have been wonderful about helping us watch them the past few days.  I have work to consider, we have the everyday life "stuff" to account for. 

We have already begun talking about how we can effectively manage things and the hospital has been wonderful about giving us information and potential resources that we can use.

All that said, we just pray for guidance as we make this transistion.  We want to be by Avelyn's side 24 hours a day - but life won't allow that...we will be with her as much as possible.  Help us to remember that she is in great hands at the hospital that she is in.

Entry by Josh:

11:30am

It is clear that with everything they try as a strategy to improve, there is a side-effect or something else that is potentially compromised. It could be that this is true for Avelyn because she has multiple complications, but it has definitely been a consistent theme the past few days.

Prayers for the Drs, Nurses, etc that they can continue to make the right decisions in this process....

Entry by Josh:

10:55am

Every morning the crew of Drs make their rounds in the NICU.  This usually consists of a Neonatoligist, a Nurse practitioner, the nurse that is at Avelyn's bedside and potentially other specialists.  Today all were present, and the specialist was a Dr from the cardiac team.  Here are some of the highlights:

- Good Stuff: They have had Avelyn on Hydrocortizone every 12 hours.  They are reducing that to every 24.  Originally they believed it was helping her to pee, which is super important for her to keep moving fluids out of her body and eventually reduce the edema (swollen, fluid filled skin).  Because she is peeing more regularly they are going to take her off of the hydrocortizone.
- Good stuff: Her "Blood gases" were better today.  This is a measurement of the oxygen, carbon dioxide and ph levels in her blood.  All three of those were better!
- Could be good stuff??  They are going to try her on Lasix - a drug that is a diarrhetic.  They hope that this will help to continue removing some of the extra fluid by helping her pee, etc...the downside is that they also need to make sure there is enough fluid traveling through her heart, so along with the Lasix they are upping her fluid levels a little.  There is also a risk with Lasix that the fluid that is removed is the good fluid that her body needs, not the fluid that is being retained in her skin.  At some point, but not yet they may try to increase her albumin levels. Albumin helps move many small molecules through the blood, including bilirubin, calcium, progesterone, and medications. It plays an important role in keeping the fluid from the blood from leaking out into the tissues.  They don't want to add the extra Albumin yet, but first see how she responds to the Lasix. 
- Good stuff: Last night they thought they read a slight irregularity in her heartbeat...they called it a "flutter".  However, this morning the cardiac Dr looked at the reading and determined that based on how random it was, and the fact that her numbers since then have been very stable it was an anomaly...nothing to worry about.
- Her skin color has changed significantly in the past 12 hours.  She has some jaundice, and her bilirubin levels have gone up a bit since yesterday.  These levels aren't overly alarming at this point, but the number did go up, so not great.  They have a phototherapy lamp on her to counteract this and are monitoring it at this point.

We need prayers that she will lose the edema.  The edema is being caused by whatever has made her sick, but causes challenges to her ability to breath on her own.  They have consistently said that fluid levels and edema can decrease quickly (within a couple of days) or can take weeks to subside.

Thanks for all the encouragement and keep those prayers coming!!!

10:27am Good morning! :) This is Michele again. We are trying to figure out this site to where I can update too, which will be easier; Josh has set this up, I just need to finish the process. Didn't get a chance to update yesterday. Yesterday was a good day as far as progress; at least the baby steps of progress we are trying to get used to. Avelyn started having more wet diapers, which is one of the major things we have been praying for because she needs to get rid of a lot of fluid. So we have been very thankful for that. Praise God! We are still continuing our slogan of 'pray for pee.' :) Also her chest looked less swollen to me, which was nice to see. Her little face and head were still so swollen though. They had to put a bilirubin light on her, which I absolutely hate bc her eyes have to be covered with a little mask and I cant see her beautiful eyes and she can't see us. :( This is really hard, so please pray that her bilirubin levels become normalized and we can get rid of the silly light. They are allowing us to turn off the light a couple times a day and remove her 'shades' as we call them, so I always look forward to those moments. She always tries to open her little eyes to see us talking to her and I love that. Bc her face is so swollen it is hard for her to do this, but she is able to a little at times, especially when we first talk to her.
Today: When I went to see Avelyn this morning, it wasn't as good news. Her chest looked more swollen to me again today and they also said her chest x-ray looked a little worse as well with a bit more fluid in her lungs. This is something we battled early on, and the chest x-rays had been improving. In fact her first night here, they were ready to do a chest tube to drain the fluid, but praise God the chest X-ray just before this showed some improvements, so they held on it and haven't needed it since, which we are very thankful for. It still looks quite a bit better than it did initially, so that is great. They let us take off her shades when I saw her earlier and it was so nice to see her try to open both of her bright blue eyes. Love those moments. She was getting a little agitated with them trying to reposition her, so they had to give her morphine, which they have been doing about one time per shift. When she gets agitated, her O2 goes down and her blood pressure goes up, which they don't like, so this is where the morphine helps. I'm sure she is SO uncomfortable having all that fluid, and I am complaining about a little swelling in my legs. I feel so bad for her. :( I'm sure the morphine helps with this extreme discomfort, as well.
One thing I am very thankful for is that all the staff here has been just wonderful. I missed rounds bc I was in the room pumping. Josh was there, which was good, but when I went back over there, they didn't hesitate to answer a couple extra questions I had between the rounds they were making with other kiddos. Praise God we are in good hands with great people. 
Please keep praying for her to get rid of all the fluid in her abdomen, chest, head, and face, her chest x-rays to also show the fluid is leaving her lungs, and for her bilirubin levels to normalize so we can get rid of the light and she can go without those dreaded shades (this is probably one of the least of our worries, but would be an added bonus to me and I'm sure her, too). Just pray for healing...
Love u all and thank you so much for the prayers.
-Michele

Entry by Josh:

11:41am

Many of you have had questions about Hyrdops and we found a good resource for information on what it is, the type of treatment that Avelyn is getting, etc .The site at the bottom of this post shares some info that may be a little scary, but we think it's good to know.

We just asked one of the senior neonatal Drs, "Can you have Hydrops and grow up and live a normal life?"  And he said Yes...so that is VERY exciting after reading and hearing of all the challenges that can arise.

We are praying for healing, answers, and guidance a lot: http://www.chw.org/medical-care/fetal-concerns-center/conditions/infant-complications/hydrops-fetali...

5:58am

This is Michele. As long as I can remember, I have always believed a healthy baby is a miracle. Now I am seeing this first hand and feeling it personally. Our baby girl is so precious and I just want to be able to hold her and take her home to be with her big sisters. She is taking baby steps with improvements, which I hear is very typical. It's just hard bc we want her to be better now. :) Her heart and lungs r improving and her kidneys seem to be functioning well. Her biggest thing now is getting rid of the fluid in her chest, abdomen, head, and face. She just looks so puffy and this can't be comfortable. :( We r praying this fluid will go away, that God will put His hand on her little body and she will start getting rid of more of this fluid. Still no answers on the cause of all of this. They know she has a condition called hydrops, but all that means is that she has a collection of fluid in more than one area. Josh actually asked the doctor about this at my ultrasound appt on Monday, before all this even started ; Avelyn was born on Wednesday. More on this story later...as we feel God led us to where we could get the best care possible, as quickly as possible to help out our baby girl. There a whole wide range of causes for hydrops and they don't know in Avelyn's case what it is yet. The doctor's would really like to know, as would we, especially if it helps her care, but as long as they r able to treat her symptoms, she is improving, and she makes a full recovery, that is great with me.

For those of you that have been waiting for updates, we apologize. Yesterday was full of people (staff) who just happened to come in pretty much one after another to explain something, give us an update, or provide another service to help us. We talked to a neonatologist, nurse practitioner, cardiologist, Avelyn's nurse of course, social worker, clinical genetics contact, research genetics liason, and the PaCT team (who helps us if we need assistance with her coordination of care and other things)...that's all, I think.--All of this while still finding time to eat, pump, see our baby girl, see our big girls :) and recover from a c section. Just not enough time in the day... All the staff has just been wonderful, which makes a difficult situation easier to handle. She is in good hands, which we r very thankful for.

I am headed down to see Avelyn now. Will only get to do this super early like this while I am in the hospital, so want to take advantage, as this is only for tonight and tomorrow. Then we will be making trips up here to see her. They say with her symptoms it is likely a long journey ahead.--God is able and we r praying for a quick and full recovery...that God will heal her. Thank u all SO much for your texts, emails, fb messages, etc. -- Thank u for your encouragement, help many of u have offered in all kinds of ways, concern for our new baby girl, and most of all the prayers bc that is the main thing we need right now!!

Love and Hugs.

-Michele

Entry by Josh:

4:20pm

Hi everyone.  This is just a first attempt at the journal.  I'm not even sure who is able to see this yet.

Michele and I have been meeting with a whole bunch of folks from Children's Mercy over the past two days, and they have all been wonderful.  Truth is, we wish we had never met any of them, but it's clear that they love what they do and have been so great with the care they provide.

Avelyn...She continues to progress with less fluid in her lungs but there is still quite a bit there.  The fluid affects her breathing, so I'm sure that many of you already know that she is on a ventilator.  She is attempting to breath on her own as well, but without the kind of capacity she would need to sustain things.  Her heart is thick, and this is causing blood flow issues.  There have been lots of tests to determine the cause(s) of all of this but they don't know yet.  She also is having a bit of a hard time going potty on her own, so they have given her a steroid to help with that.  They have found a few other things and plan on conducting a few more tests, but for now I'm going to end this journal entry.

We love her so very much, and appreciate all the support that you have given us, and will give us.