Big move!

Moving on up! We have graduated to a room in the childrens hospital. It is in the peds cardiac unit and I can stay with her. Kirby is still on her oxygen but not longer on the vapotherm which is a much lighter line to move around. Kirby has been doing really good and is good and stable with her vitals and her oxygen saturations. We no longer have a monitor to see her stats but the nurses station monitors her continuously. This is a big change for us. We are used to staring at a monitor all day. This makes us look at Kirby and monitor her rather than relying on the monitor.

My first night with her was rough and I slept none with the noisy neighbors and getting used to the nurses coming in and out all night. Last night was much better and I did sleep some. Josh stayed with Kirby for a while today and I got to go back to the Ronald McDonald house and take a nap. Whew...I needed that. Kirby slept all night with just a few squirms when they came in to mess with her but was easily consoled and went right back to sleep. Thank you Lord!

The plan from the doctors stand point is that she will stay here until her next surgery which they will do early...when she is around 11-12 lbs. This would probably be within the next 6 weeks or so depending on how fast she grows. They will also repair the leaking valve at that time. This is if God doesn't have other plans. We continue to give Him full control and trust in Him completely. Thank you Lord for continued to progress in Kirby. May you receive all the glory!

Continued Progress

It has been a long time since the last update and a lot of progress has been made. Kirby has now been off the ventilator for almost 2 weeks and is doing great! She is getting stronger each day. They are now only taking blood to monitor her gases twice a week as opposed to daily, she is no longer getting daily x-rays to take a look at her lungs, respiratory therapy is no longer doing therapy, her feeds are compressed to 2.5 ounces over 1 hour with 2 hours off as opposed to continuous feeds of 2.5 ounces over 4 hours, she is now 8 lbs and we are getting to hold her more and more. The doctors are pleased with her progress. They did another echo this week for the first time in a week or 2 and the valve appears to still be leaking a lot but she is handling it very well, so for now, they are just going to keep watching her and see how she does. She is still on oxygen through a nasal canula and they are slowly weaning her down on that support. There is a possibility we may move to a room very soon which means we will be able to stay with her at night and taking care of her most of the time. After talking with the doctors, they have basically told us to plan to be here until her next surgery but it will all depend on how she does over the next few weeks. If she continues to grow well, they will be able to do the second surgery early (around 4 months instead of between 6-9 months). I went home for the first time for a 24 hour period last Thursday and then came back and went home Monday morning and came back Tuesday morning. It was very tough leaving her but also refreshing to see my house and take care of a few things back home. 2 1/2 months is a long time. Thank you for your continued prayers. God is good and is continually revealing himself through this journey. I will try to get some pictures uploaded soon.

God is good!

Since the last update, Kirby has continued to improve. She has now been off the ventilator for 4 days and is growing stronger each day. She is still on the Vapotherm through her nose which provides oxygen and some pressure support. They are slowly decreasing that each day. Her blood gases have been great each day and her O2 sats have been good for her. She slept a good bit the first few days due to her body being tired from getting used to working on its own. The past 2 days she has been more alert and interactive.....we got to see a few big smiles from her yesterday which brought so much joy! We also held her for the first time in 2 months which also was a milestone this week. We have seen miracle after miracle and give God all the praise. We are so thankful for His faithfulness. We don't know where this journey is taking us, but we know our faith is stronger than ever and we can't wait to see how God uses Kirby, as we know He has great plans for her life. Kept the prayers coming....it is working.

24 hours

24 hours off the ventilator and doing great! They took Kirby off the vent yesterday and she is doing really good. She is breathing good and resting well. She is showing us that she has some lungs....her little hoarse voice is going to be so loud in a few days, but I can't wait to hear that voice. Continue to pray for strength and healing....it is working!

Tuesday, April 5th

Kirby has several good days and has been stable and steady. They proceeded with the cath lab this morning to do an evaluation of the valves, arteries, etc. They wanted to get a good look at everything to see if there was anything that could be repaired (by ballooning or by using a stint). Everything looked good as far as that goes and the blood flow through the arteries is good. They did see that the tricuspid valve is leaking pretty significantly. This is causing back flow of blood into the lungs, etc. The plan is to let her rest and continue to wheen the ventilator through the weekend and see if she can be successful with that. They mentioned doing a surgery to repair the valve next week depending on how the weekend goes. This is a risky surgery. We are continuing to stand firm that God is greater and for healing in her body. Continue to pray for the leaking valve to stop and for successful wheening of the ventilator.

Friday June 1st

Kirby has had a stable week. They have attempted to wheen down the ventilator support but she has not responded well to that change so they are at a point where they are stuck. Her vent settings are not high, but her oxygen levels drop some when they decrease it any more. We are also dealing with some more leaking of the valve in her heart which is causing some of the fluid in her lungs. With this said, they have decided to take her to the heart cath lab to take a closer look at some things to see what they can do to get her over this hump. They will do this sometime Tuesday. Pray that all goes well with that and for her to continue healing and gaining strength. We are believing for God to heal the valve. Pray for our strength as well as we are tired.