R and R

Kirby has continued to settle out and improve over the past few days. She is definitely not as fussy...really not fussy at all unless someone comes to mess with her. The oxygen was turned off yesterday morning and has remained off since. She went down for an upper GI study yesterday which is basically prep for the possibility of getting a G-tube. The drs. want to go this route to avoid the risk of aspiration since she has never eaten by mouth. This will be used until she is able to learn to eat and drink by mouth. She is going down today for a swallow study (Modified Barium Swallow) to look at her ability to suck and swallow. This will give us an idea what she can and cannot tolerate by mouth so we can continue to work with her on eating and drinking. Kirby has shown great interest in the baby food and formula she has been given so far, so, that is a positive sign. She actually LOVES it!
In the mean time....I have been kicked out and sent home for a few days. Ha! My mom and aunt have gone down to be with Kirby and made me come home for some R and R. After talking with the nurses and with mom, they insist that I do that. So, after battling with feeling like a bad mom for leaving my child, feeling guilty for putting the responsibility on someone else, feeling sad to leave Kirby, etc. etc., I decided to go. So, I am home for a few days to get some R and R. When I have come home in the past it has been quick and for a specific purpose and right back to Charleston when I finished with what I had to do. This time it is for no purpose other than refreshing my mind and body. I think it is hard for anyone to understand what those 4 walls of that room drain out of you and nearly 6 months of it, they begin to close in on you. Josh and I have been drained lately and the roller coaster of emotions have been hard. This break will most definitely refresh us for the weeks ahead. With that all that said...I am enjoying my coffee on the back porch, reading "Jesus Calling" and enjoying the fresh Fall air! I cooked dinner last night, washed a load of clothes, washed dishes, enjoyed a few season premiers of our favorite shows, showered in my own shower (AAHHHH that was great compared to the hospital shower) and cuddled in my own bed. Oh the little things I never thought I would enjoy so much (cooking, washing dishes, laundry in my own washing machine, ha). Continue to pray for healing and strength as we endure a few more weeks. Love to all!
Oh yeah...I don't usually spell check or or grammar check so sorry if I look extremely un-educated at times. Ha1
Here are a few pics from the last few weeks:

Colt came to visit! He loved reading Kirby some books.

 

Kirby's first taste of baby food! Peaches!

Trying to get a smile....unsuccessful. :(

 

Happy Fall!

 

Daddy lovin' time

 

No oxygen and no tape all over my face!

Well....

Since Saturday we have had ups, downs and all arounds. Kirby was extremely fussy Sunday and Monday. Nothing seemed to pacify her and she just didn't appear to feel good. We keep thinking she is teething so that makes her feel bad but not sure what is wrong exactly...could be just adjusting from the surgery. Monday mid morning Kirby's sats began dropping and they had to turn her oxygen back on after being off for 2 days. They still didn't improve so they turned the oxygen up more and did an X-ray. The X-ray showed fluid in the lungs which explains the drop in sats. So...they restarted one of her diuretics and by Tuesday morning the lungs were pretty much cleared up. Today has been a better day and they were able to turn the oxygen back down but not off yet. She was not fussy but not her sweet smiley self yet....we are getting there. She likes to be left alone so we just have to do that most of the time. I guess if I had been through what she has I would want to be left alone too. Something fun happened today...Kirby got her first taste of baby food and she seemed to really like it. They are beginning to introduce her to some tastes to see how she does. So right now the plan is to continue compressing her feeds and work on oral strengthening and oral training, work on weaning oxygen, and meds. We are continuing to but this situation in God's hands and believe for healing and strength. I will try to get some pics uploaded soon.

Chest tube out!

The drs came by today and decided to take out the chest tube! Kirby already seems to feel more comfortable. Her oxygen has been turned off for half of the day and she has done great! These were great things to come back to today after spending an evening at home to attend the Crossfit Spartanburg "Fight Gone Bad" benefit for Kirby. What an awesome turnout and a great event. We are so thankful for all who came early this morning to give 17 minutes of blood, sweat and tears to show their support for Kirby. Thanks to all who planned, donated, served, cleaned, organized, fought hard to give it all they had, cooked, etc. It was so great to see everyone they we miss so much. We continue to be humbled by the goodness of God through this journey. He continues to show himself strong through it all. We continue to see miracle after miracle of healing and provision. Until next time..............keep the faith and keep praying. Keep fighting baby Kirby!

Prayer requests: Keep the oxygen off, continued healing of the valve, successful feeding (including sucking and taking a bottle) and toleration of the feeds, wheaning of the heart medications and other meds., and continued strengthening of her heart.

Slow and Steady

So I again apologize for the delay in posting. We have been in our room now for almost a week. The first few days were rough dealing with the fussiness due to the milk protein allergy and her being miserable bc of that. They decided to give her a days rest from feeding and restarted her feeds the next day. .....and we prayed hard. They restarted the feeds and her belly has been fine since. They haven't they have tweaked a few things but Kirby again has shown us that slow and steady wins this race. She still has her chest tube and it has been draining until the last 24 hours. We had a little scare that we were going to have to go back to ICU to put in another chest tube on the other side but thank the Lord the fluid on that side diminished. Our hope is that the chest tube can come out in the next few days which will hopefully give her some relief and comfort. We are still limited with how much she can be moved around. They are beginning to compress her feeds giving her bolus amounts as compared to continuous feeds. Continue to keep us in your prayers. The days get long here and we can grow weary at times. We miss home and are ready to bring Kirby home.

Friday, September 14

Kirby has continued to make good progress over the last few days. They were able to remove her arterial line yesterday so we were finally able to hold her. She has one chest tube still that is not ready to be removed because it is still draining some fluids from around her lungs. They will leave that in for a few more days as it continues to minimize. Some of this fluid comes from the pressures in her heart because of them having to do an early second stage surgery, along with her having chylothorax (due to the surgery, the fats from formula leak into the pleural space around the lungs). She had this after the previous surgery as well. She is on a special formula that is essentially fat free that will help with the leaking of the fats. With that said, we also have to battle the fact that she has the milk protein allergy and this formula is not made to help with that....so we have an uncomfortable at times fussy baby. Bless her heart.
Today is a big day! We were able to move back upstairs to her regular room! We love the PCICU staff but love being back in a room. Pray for continued healing of Kirby's valve (it is still leaking but about 50% less which Dr K says is ok), healing of the chylothorax and the milk protein allergy and reflux. The goals for Kirby over the next few weeks will be to come off of the oxygen (she is only on a small amount), come off of the heart medicine that is going through her PICC line, and learn to eat by mouth. So, these are our prayer request! We are closer than ever to coming home and we are so ready to begin our life together at home as a happy family! Love to all

Progress

Kirby is doing great! She came off the ventilator yesterday morning and has done really well. Her oxygen saturations are good along with all her vitals. She is a bit frustrated with laying around and being confined to the bed in ICU. She is used to being held, moved around and in her swing. She is limited with being moved due to the lines and tubes all over her.....but....they are removing some of those as I type. Hopefully I can hold her very soon. The dr is pleased with her progress and we are happy that she is moving right along too. Josh and I are going a little stir crazy being back in ICU but we will just have to get over it. It's all worth it to be with our little girl. Lord, it is only bc of you that e were able to stay sain for 2 1/2 months of this last time we were in ICU. Ha!

Update

Kirby has had a good day and had a good night last night. She was awake a little more today but continues to be puffy in her face. This is to be expected due to the body adjusting to the pressures from the new anatomy from surgery. There was some fluid buildup around the lungs today which is also to be expected from being on the heart-lung bypass during surgery, therefore, the doctor placed a small chest tube to drain the fluid from that area. He was unable to get to this area during the open heart surgery, so, the tubes were not placed at that time. It was a simple procedure done at her beside today with some sedation. So, now that the fluid is gone and the chest is closed, the next step is to get Kirby off of the ventilator. That is the plan for tonight and tomorrow. They will begin CPAP trials (turning off the ventilator to let her breathe on her own) during the night and tomorrow and depending on how she does, they will remove the ventilator tomorrow evening. Praise God for continued progress!

Chest closed!

Kirby had a great day yesterday and a great night last night. The dr closed her chest this morning with no complications. She is still puffy and the swelling needs to come down a little more but all in all she is doing really well. They are continuing to wean down the ventilator support and her meds. The next step is to get her off the ventilator. The plan is to do that in the next 24-48 hours. God is good!

A Fiesty One

We have a fiesty one on our hands. They have taken Kirby off of her paralytic and she is swatting and kicking. She is not happy with these tubes. Her eyes are still closed and her chest is open but she is letting us know she doesnt like it. They have had to tie her hands down and give her some more sedation. :(  The plan is to close her chest tomorrow. The dr wants to get some more of the swelling down and the fluids out of her body before they close her chest. They have weaned the ventilator some more and are pleased with her progress. They are planning to start introducing some small amounts of milk in her belly today. Her stats are good including heart rate, blood pressure, oxygen saturations, and temps. Happy Friday to all!

Recovery

I did not have Wi-Fi last night at the Ronald McDonald house so I wasn't able to update.....so.....
Yesterday was a long day. Kirby has definitely proven to give the Drs. a run for their money. The surgery lasted about 11 hours. Initially getting in to the chest was difficult due to scar tissue. He said that it took 4 hours just to get in the chest and into the heart. He began with the valve repair which took several hours. He stated he had never seen anything like it before. She had an extra "leaflet" and he repaired the valve with every technique he knew and had ever heard of. He then proceeded to do the "Glenn" which is the second stage surgery with Kirby's heart defect. There was some instability with heart pressures and blood pressure along with her heart being enlarged b/c of it working so hard with the leaky valve. So, he decided to leave her chest open to give some time for the swelling to decrease and the pressures to decrease. He plans to close her chest within the next day or so, then they will get her off the ventilator. He feels good about the procedures and the echo's are showing good heart function and definite decreases in the "leaking" valve. Kirby had a good night and they were able to wean down the ventilator support and take her off 2 blood pressure medicines. They plan to let her start waking up slightly today. They tell us that headaches are very common for days after this procedure b/c the body has to adjust to the changes in blood flow and pressures. They call it the "Grouchy Glenn" b/c the babies can be fussy and in pain from the headaches for several days. Kirby is very swollen and puffy....I can't wait to kiss on those sweet cheeks soon and see those bright eyes look me in the eyes and know her mama and daddy are here. 

We could definitely feel the peace of God yesterday through all of your prayers. We are so thankful for family, friends, and friends of friends who have lifted Kirby up in their prayers. We know how good our God is and He is faithful to his promises. Continue to pray for a quick recovery and continued comfort and peace.

Update

The actual procedure is done. She is off the heart-lung bypass and her heart is pumping on its on. They are waiting on the bleeding to stop and then they will close her chest. Hopefully only 1.5 to 2 hours before she is all done.

Surgery update

We have been getting hourly updates. The last update said she is good and stable and they are finished with the valve repair. They are working on the "Glenn"...the second stage surgery. We don't know anything regarding the valve repair. I will keep you posted. Keep those prayers coming.

Surgery

As I type, we just got the first update that Kirby is very stable and they are just getting through the scar tissue from the previous surgery. Everything is good so far.

This morning marks probably the most difficult day of our lives, turning our sweet spirited, smiling, loving, beautiful, almost 5 month old daughter over to the hands of a surgical team to conduct her second stage surgery and a repair of the common valve....a moment we have anxiously waited for....yet dreaded at the same time. Many tears have been shed and many prayers have gone up. We know she is in great hands b/c we put Kirby in God's hands from the beginning and again this morning. We know the peace of God and his presence fills that operating room and God is guiding the hands of everyone involved. She smiled so big this morning as we talked to her and played with her at 5:00 am and rested in our arms as we waited to hand her over. I can't describe the joy that her smile brings...it is contagious.

Her surgery was postponed for a third time (was supposed to be yesterday morning September 4th) b/c of another emergency surgery, so we were just bumped one day. All of the postponing has been so frustrating but we have had to remind ourselves that God's plan is bigger and he has a plan that is out of our control.

We have had some great moments with Kirby lately. Her personality if blooming and her smiling will light up a room. She has had a few trips outside, enjoyed her first USC football game, met one of her great grandmothers for the first time, cooed at us, gotten to visit with our family and some of our closest friends etc, etc.

The 8d staff has been remarkable to us during our 2 month + stay and we are so grateful for each of them and their support. They love Kirby too and can't wait to see her out of the ICU and back on the floor to recover and go home.

We love you all and are so thankful for all of your support and prayers. Keep it up. God is good and He will heal baby Kirby!

 

The faculty of Cherokee Technology Center (my mom's work) supporting Kirby in their team Kirby shirts