Bump part 2

Since the last update, there have been some changes. After a closer look at Kirby's resent echos and because of the increased swelling, they became more concerned about the valve. They decided to look closer and some comparisons and it looks like there is a clot in a vein going into her Glen (her second stage surgery) as well as some possible clotting causing the valve to not open as effectively. So...they are giving an 8 hour drip through iv of a clot dissolving med. This should take care of the clot and the valve issue so blood can flow more freely. The risk of this med is the dissolving of clots that are good clots...like where an iv line was removed or surgical incisions, etc. and bleeding risks. We know God is in complete control and has her right in His hands. Continue to join us in prayer.

Update

Just a quick update with what we know so far. Kirby is still on the vent and is pretty swollen. She has begun to "pee" a little more so our prayer is that the swelling begins to decrease. They echoed the valve 2 different ways and did an xray under fluoroscopy. The valve looks good and does not seem to causing any problems. So...they decided to start running tests including blood, urine, and sputum. It takes a while for the cultures to grow but it looks like something is showing up in the urine. They have already started antibiotics and steroids to help. They have thrown out UTI and Spesis. So, right now we are just waiting and praying. Thank you Lord that Kirby is healed in Jesus name. Continue to pray for "pee", for all her organs to function just as they are designed to funtion, the swelling to decrease, fluid in her lungs to leave, and for strength in her little body.

Bump

Kirby has had several really good days. The sedation meds were taken off Monday night and yesterday Kirby was awake all day. She was alert and comfortable. Today, as the day went on, Kirby's breathing seemed to get progressively more labored and she was very sleepy and difficult to wake up. This progressed to a point that the drs. needed to do more to look into what was going on. After several breathing treatments and some therapy, they decided to place the vent back in. Her co2 levels were really high due to ineffective breaths and causing her to be very sleepy and her breathing to be dificult. They are looking at her valve to see if it opening effectively under fluoroscopy as I type. They had to turn her blood thinner off yesterday in order to pull some lines, and they are concerned that a clot could have formed in the valve during that time. If this is the case, they will give some meds to help desolve the clot. This can be the cause of some of her complications today with breathing. Continue to pray for complete and total healing of Kirby's body. My God is able!

Slow and Steady

Kirby has had a good steady weekend. They have been slowly working on weaning meds and weaning her vapotherm. She has been sleeping most of the time but the rest is good for her. They will be continuing to work on meds and getting some lines out over the next few days. Keep praying for healing and strength for her body.

Big Day!

Kirby has had a big day today! They were finally able to take out the ventilator this morning! YAY! She is so relieved and is doing great. The plan was to take it out 2 days ago but her blood gases weren't reflecting that she was not ready and had slowly gone down hill, so she had to wait until today. We prayed hard last night that her gases would improve and God intervened....they began to come up at her 9:00 blood draw. We have also been praying hard for the pacing of her heart/heart rhythm and they turned off the pace maker this morning and she is doing great! I can't begin to express how truly grateful we are for Kirby's life. We learn more each day of how sick she was and how little hope they had for her these last few weeks. She has truly pulled through some tough times only because of the prayers and our trust in Him. We know and continue to stand on God's promised of healing! Thank you Lord that Kirby is healed!

A New Week

Kirby has had a good stable weekend. She has continued to make progress and gets stronger each day. They were able to close her chest on Saturday with no complications and she tolerated it well. They have begun to feed her a small amount of food to help her get stronger and ready for getting the ventilator out. They are doing CPAP trials (turning off of the ventilator) today and hopefully take the ventilator out tomorrow. We had a little hiccup yesterday with the pacing and rhythm of her heart. They had to turn the temporary pacemaker back on bc of some heart rhythm issues, but they don't seem too worried about it right now. They think it will work itself out bc of her response when they turn it off. Continue to pray for miraculous healing and for us to be home for the holidays.

*I have been meaning to say that I do not spell/grammar check bc I am hurrying to type this so I apologize for my mistakes on here. :)

Post-Op Day 3

Kirby continues to amaze Drs. And nurses with how well she is doing. We have been amazed at God's goodness through this journey....the support, prayers, encouragement, visits, etc. have been amazing. Kirby had a good night and a good day so far. Although she has an open chest and many many lines attached to her, she is doing great. They have weaned all blood pressure medicines except one, which is only a small amount. She is still sedated and on lots of pain meds. The ventilator has been weaned a good bit and her swelling is pretty much gone.....amazing considering how swollen she was before surgery. She continues to "pee" in excess getting off all of the extra fluids.  The plan is to close her chest tomorrow and then the next step will be weaning the ventilator. The X-ray of her lungs looks good also. Thank you all again for your continued prayers. She truly is a miracle!

2 Days Post-Op

Kirby had a good night. Took her off one blood pressure medicine and weaned down on another. They turned down the ventilator a bit as well. They decided to turn off the paralytic.....which they had to turn back on after only 5 minutes b/c Kirby decided to start moving all over the place......my little fighter. They also gave some more sedation and pain meds. Her stats, sats and blood gases all look good. Thank you Lord for a great day!

Also, I think I forgot to mention that when she came out of surgery, she was on a temporary pace maker and we were told she would probably need a permanent one. The morning after surgery, they turned it off to test her and her heart was completely in rhythm on its own and has been ever since. Praise the Lord. She also has been "peeing" so much that she soaked through her cathater, through her diaper and all over the bed. Ha....thats what happens when you pray for "pee" more than can be contained. Kirby got her toenails painted last night and is doing great!

God is Good!

After a VERY long day Kirby came out of surgery last night around 10:00. We were surrounded with around 15-20 family members and friends in the waiting room all day to support us and Kirby during this difficult day. Kirby went through the most difficult surgery so far specifically with how sick she was going in. The team actually questioned doing the surgery once they got to the OR bc her stats were so low..... But knew this was the only option at that point. It again took several hours to get through scar tissue, took some difficulty greeting on the heart lung bypass, and then the difficult procedure itself. We got continuous hourly updates from the OR which contained positive messages that she was stable the entire time. Praise God. Once the procedure was finished it took several hours to get the bleeding to stop. We were warned that she was coming out of the OR very sick and unstable. When we got this report we came together and prayed as a group and once we got the final call....things had improved. Dr K came out and was very concerned about her state at that point. They did a mechanical valve replacement, place several chest tubes, scraped scar tissue from around the lungs to drain fluid, the left lung was partially collapsed, she had not "peed" in days but began peeing during the surgery despite renal failure, etc. Lots went on during the day. Kirby had a good stable night and improved. She had a great restful day. The Dr was very pleased today. Kirby has a long way to go so keep praying. God hears our cries.

Update 2

Kirby's valve was replaced with a mechanical valve. She remained stable throughout surgery. She is off the heart lung bypass and they are finished with surgery. They are monitoring bleeding and she will be out of the OR soon. Thank you Lord for surrounding Kirby today.

Surgery Update

Kirby went back to surgery around 7:45 this morning. It took a while to get all of her lines in before the surgeon began. It also took several hours to get through scar tissue. The last update said they were about to go on the heart lung bypass. She is good and stable. Keep the prayers coming.

Surgery

Kirby has continued to accumulate fluid in her body and at this point continues to have difficulty getting the fluid out. It is ultimately due to the heart valve leaking  more than her body can handle. It is working against what her previous second stage surgery was designed to do. Dr. K and the team have determined the best route right now is to do a valve replacement in the morning. At her state right now she can't wait any longer to do something. So, Tuesday morning the surgeon will take Kirby for one of the toughest procedures yet specifically bc of how sick she is right now. Pray for complete healing as we continue to place Kirby in God's hands.

Prayers

Kirby continues to be in ICU. Since the last update Kirby has retained a lot of fluid in and around her lungs. Thursday morning they attempted for 3 hours to place a chest tube on the left side. She had fluid around the lungs in a place that is difficult to get to and where scar tissue is, causing the fluid to form in different pockets around the lungs. Because of this, it is nearly impossible to get to all the pockets. They decided to put the ventilator in so they could sedate her really well to try again with the chest tube. Dr. K tried for 2 hours that evening to place a chest tube. They did leave 2 tubes in and they have drained some, but not a lot. They took the ventilator out Friday afternoon but Kirby struggled with breathing and was very uncomfortable. They were not able to feed her bc of her struggle to breathe, they couldn't give her morphine bc it interferes with her respiratory drive and they couldn't give oxy bc she hadn't eaten and it can upset their stomach. So...they decided the best thing was to put the ventilator back in so they could feed, sedate, and let her rest and get stronger. The X-rays have looked better but Kirby's swelling has not decreased. She is very swollen. She continues to have major fluid build up that can only be explained by her leaking heart valve. They have explained it to us but there is no way I could explain it here in writing. Saturday was a rough day for Kirby. She seemed to be struggling breathing, her blood gases were not good, her oxygen levels were low, and she was not "peeing". So....we did what we knew to do and that was PRAY and intercede. Soon after Kirby's sats improved and she began "peeing". God hears our cries. She had a good night and things improved overnight. Prayer works so keep Kirby lifted up in your prayers continually. She is still fluid overloaded. We will be talking to the drs tomorrow so I will update.

Roller coaster

Well since last Wednesday we have continued the roller coaster ride that we are so ready to get off of. Kirby stayed in ICU overnight.ht last Wednesday after putting in a chest tube to drain the fluid from the right side. She had a good night so they sent us back up to the room Thursday morning. Kirby seemed to be feeling better by Friday evening and began to give us that sweet smile again. She continued to smile and laugh throughout the day on Saturday. Sunday she didn't seem to feel good and seemed more tired. During Friday night, she seemed to be working harder to breath and her o2 sats were on the lower side. They did an X-ray and an echo and it appeared that there was some fluid build up around the left lung which was causing some difficulty breathing. They decided to take her to the ICU again to monitor her and decide whether or not to put in another chest tube, this time in the left side. They were not able to put in a chest tube bc of where the fluid is located and bc it is a smaller amount of fluid o they are working on getting the fluid off using diuretics. Kirby was very content and smiling this morning and looks better. The X-ray during the night showed less fluid so hopefully this means the diuretics are working. They have currently taken her back to re-wire or redo her PICC line bc it will no longer work to draw blood from. So...right now we are waiting on the fluid build up to diminish so we can get her healthy and home. We have had several days of being frustrated and discouraged but have been refreshed by some encouraging words and songs. We stand on God's word that Kirby is healed. Also James 1:1-18 are what we choose to believe each day. He is stretching our faith and preparing us for a great journey. Josh is also reading a book called "The Circle Maker". Such an encouraging book. I have started it but am not as far as he is. Keep lifting Kirby up in your prayers.

Complications

Kirby is now back in ICU after some fluid build up in and around her lungs. They put in a small chest tube in the pleural space around her lungs to drain the fluid and she is resting more comfortably now. She has had a rough morning with pain from thr procedure yesterday and the difficulty breathing due to the fluid around and in the lungs.

Long day

Well it was a long day in ICU but we made it back to Kirby's room at almost 10 last night. Surgery went well. She had a hard time waking up after surgery bc they gave her some extra sedation once she started waking up bc they were afraid she would wake up with a vengeance. Once she finally woke up they took out her ventilator pretty quick and she did just fine. They put in several lines during surgery so they also had to be removed before moving to her room. She had a pretty restless night and this morning has continued to be in pain and difficult to console. She is also very puffy from some fluid build up so they are giving her some extra diuretics. Pray for comfort and peace for her throughout the next few days.

Closer than ever

Well I have been slack with updates over the last few weeks. We have have been busy busy around here. Kirby has been doing really good. She has finally gotten back to herself...smiling and sweet. We have been busy with PT, OT, and Speech. Now that she is feeling better they are working her hard to catch her up. Today we have reached yet another trying day. As we speak, she is in surgery getting a G-tube (a feeding tube in her belly) and a Nissen (a procedure where the stomach is wrapped around the base of the esophagus to help prevent and deal with reflux). This procedure should take around 3-4 hours. We took her down this morning and handed her over around 8:00 and they planned to start the surgery around 8:30. Another obstacle but a step closer to home. Kirby has begun eating some by mouth but it will take a while for her to be able to consume enough by mouth for adequate nutrition, therefore, these procedures were necessary. After the surgery, she will recover for the day and possibly overnight in the PCICU then return to her room. The plan after this surgery is to work on getting off a few meds and tolerate being off the meds, then we are HOME FREE! Keep the prayers coming for a safe procedure today and a speedy recovery.
Here are some recent pictures:

 

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

 

Postponed again

So we are postponed again.....
 The other surgeon has hurt his back so our surgeon had to fill in and perform a surgery that can't wait any longer. This is apparently the trend when you have a child that is seemingly "healthy" enough to wait a little longer. We are tentatively scheduled for next Tuesday. We know God has a plan and He is in control.

Postponed

Kirby's surgery has been postponed because a heart came available for another patient so they are going to do a heart transplant. Not sure what the plan is for sure but they are thinking Kirby's surgery will be Tuesday. Thankful that another life is being saved because of organ donation.

Surgery date

We have a date. Kirby is scheduled to have her second stage surgery and the valve repair next Friday, August 24th. We are excited b/c this is one step closer to home but it also makes me a little nauseous. Kirby is precious and so sweet and I can't stand the thoughts of surgery and the ICU again. Please pray specifically for successful valve repair as this is a difficult surgery for the Dr., success second stage surgery (the Glenn), for speedy recovery, no complications, off the ventilator quick, peace and strength for us. Kirby is continuing to grow. No huge jumps in weight but steadily going up. She was 4.81 kg this morning with her goal being 5.0. They feel like she will be very close to that by next Friday if not completely there. She had her pre-surgery echo done yesterday and she did great. She didn't even cry until the very end which is a huge miracle. Usually she hate it and we have to fight to keep her still. Her oxygen saturations have been really good most of the time which is really good.

Kirby had an exciting weekend and got to meet her friends Halie and Blake Cantrell...and of course there parents too. Thank to Nate and Nicki for coming to visit and keeping us company...and for bringing the kids to meet Kirby.

Debut!

Kirby continues to grow each day. She has gained steady weight each day and is getting closer and closer to her goal weight...5.0 kg....(she was 4.76 kg today). Kirby has had a big week. We were chosen to star in the MUSC Children's Hospital 25th anniversary video a few weeks back and the video release and party was this week. Kirby made her appearance and went down the red carpet at the party in a stroller and loved it. She also went for her first trip outside today. She wasn't to sure about the bright sun but seemed to like it after a bit. Shout out to nurse Barbara for getting us out today! You are great....always keep us smiling with those steller dance moves and Whitney Houston voice. Also, thanks to my sweet friends for coming to visit last weekend and for getting me out for a few hours to catch some rays on the beach. You guys are great! I was so glad they were able to see and hold Kirby for the first time. Also, I had to make a trip home this week for a meeting and was able to have some girl time for dinner! Thanks ladies for joining me! It was so nice to be refreshed with some girl time. I feel so guilty for leaving Kirby but know that it only makes me stronger and a better mom to get some fresh air sometimes. I LOVE coming back and holding this sweet baby girl though.

Happy 4 month birthday to Kirby! I can't believe we have been here for 4 months. We are hoping that Kirby's next surgery will be no later than early September. We should know something pretty soon about that. Continue to keep us in your prayers as we approach a surgery date. I can't imagine how difficult it will be to turn her over to the surgeon, but I KNOW, God has a great plan. I can't wait to see it continue to unfold in her life!

Check out the link to the MUSC Children's Hospital video:
http://youtu.be/YRYEf6wYdsU

Kirby's getting BIG!

Since the last post the goal for Kirby has been simple yet complicated....GROW! She has done just that at a pretty good rate but not without lots of small hurdles. There have been many issues with her NG tube which is supposed to now be TP (below the belly). This has been difficult b/c it has worked its way out of that postition, Kirby has pulled it out of that position, and for unknown reasons is difficult to get to that position after each time it comes out. They have had to re-insert the tube multiple multiple multiple times which means tearing the tape off her face and holding her down and she hates it! She has been a trooper but bless her heart she has been through it. Currently we are waiting until in the morning for them to reposition it b/c it is in her belly right now instead of TP. Kirby has gain weight fairly quickly (4.64 kg- 10 lbs 3 oz as of this morning) with her goal being 5.0 kg so she can have her next surgery and recover and come home.

Last Saturday, North Point Church hosted a benefit in Kirby's honor. What an amazing blessing this was! This consisted of a hot dog lunch, silent auction and raffle in which great businesses and individuals contributed, donated, and supported. The turnout was great and they exceeded their goal and expectations. We were fortunately able to surprise everyone and come home to be a part of the benefit....which they totally did not expect. We are truly grateful for all the hard work and support of everyone involved. God truly showed himself strong in this benefit.

We have had lots of firsts lately....Kirby now likes to lay on her belly and sleeps great that way. She fell asleep on Josh's chest as he layed back on the bed which he has longed for all of her life and she fell asleep on my chest and slept there for hours as I rocked her today which I have longed for all of her life. She is holding her head up very well when she sits up too! Continue to pray for weight gain and good health so we can get her well and home!



 

 

Happy Anniversary!

Saturday Josh and I will be celebrating our 6th wedding anniversary. I could not have found a better soul mate, best friend, and father to call my husband. Through this journey with Kirby we have grown stronger in our faith but also in our relationship. Also, I need to send out a huge THANK YOU to all the nurses on 8d who have arranged for Josh and I to have some much needed time together. The nurses have set up a massage, a room at the William Aiken House and dinner to treat us. Also, a huge THANK YOU to our parents who have agreed to stay with Kirby. I know we will be refreshed after spending some time together.

As far as the results from yesterday's tests, things seem unchanged from the previous CT scan and echo.  Thank you Lord! The doctor actually stated "that things seem a little better for some reason". We know that it is b/c of so many prayers going up for this sweet baby girl. It was very tough seeing Kirby after her procedures yesterday. They had to give her general anesthesia which means they had to put in the ventilator and she had to recover in the PCICU. She did not like this at all as she began to wake up and she look so helpless as she looked into my eyes. They were able to remove the ventilator pretty quick and she was able to return to her room last night instead of spending the night in the PCICU. I love the nurses in PCICU but I do not miss being down there day in and day out at all.

The plan it to continue letting her grow and get bigger so they can do the next surgery. The surgeon was able to get good views of the valves so he can plan the repair. Thank you all for your continued support and prayers!

 Beautiful!

And we let these people take care of our child....... Love these ladies!

Kirbtastic

Kirbtastic as nurse Barbara calls her...........
So again I have to apologize for not updating in so long. The days seem to get away from me so quickly. So we have now been on the 8th floor in a room for 3 weeks. We have shared some fussy days, great days, sleepless nights, and good nights. There has been alot going on here. Kirby began getting full breast milk in bolus feeds through her NG tube (1 hour on of feedings and 2 hours off) and was tolerating it well....or so we thought.... We discovered last week that she has a milk protein allergy. With that said, she had been very fussy and just not herself. Prior to finding out about the allergy we were thinking the behaviros were related to reflux. She is taking medicines for that also. So, we discontinued breast milk and she is now on a special formula and continuing with the reflux medicines. So far so good with minimal gagging and spit ups now. The main goal has been to get Kirby to gain weight so we can get her to the next surgery. The surgeon wants her to be 5.0 kg. This is a very difficult process bc of how hard her heart is working. She burns lots of calories and weight gain is difficult. We are making some slow progress with that. She is now 4.03 kg. With the new formula, she should be able to gain a bit easier bc her body will be able to absorb the nutrition better. She has also had some episodes of her oxygen saturations dropping periodically so they are looking into that today. After a few echocardiograms, they have not been able to get the views they would like of her shunt that was placed in her heart during the first surgery. What they have been able to see is some possible narrowing around the shunt which may be contributing to the drops in her O2 saturations. So......... they decided to do a sedated CT scan and echo today which is where she is now. This will allow them to get some good views of her heart. During this process today they had to put her back on the ventilator to sedate her and she will recover in the PCICU this afternoon and return to her regular room later today. We have loved being in a room and getting to bond with Kirby. The nurses have been great and love Kirby too. We also became movie stars this week ;).  MUSC childrens hospital is celebrating 25th anniversary so they are doing a video. We were asked to be in the video as a family. We will appear in a 10 second or so clip on the video. HA! All in all, things are good. I will update with the results from the procedure today when we receive information ourselves.

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.

Thursday update

Praise the Lord Kirby is improving! Kirby has made good progress this week since being put back on the ventilator. Her blood gases have continued to improve and her stats have stabilized. I never thought I would be thankful for an infection but we at least have an answer. Kirby has a ventilator acquired pneumonia (infection in her lungs) that appears to indicate why she had the difficulties coming off the ventilator and with her struggles the next evening and day. They started antibiotics immediately and she is doing well. They have been able to take her back off of her medications that they had re-introduced to stabilize her, as well as turn down her ventilator support each day. Her body was fighting so hard during the day off of the vent and the hours to follow that she used every ounce of energy she had. They want her to again build up her strength and nourishment over the next week or so, along with get rid of the lung infection, and they will begin CPAP trials again and take her off the ventilator. We are so thankful for the support and prayers over this past week which have again pulled Kirby through. We serve a great God and he has surely seen us through and heard the cries of His people.

Monday May 21, 2012

Kirby was taken off the ventilator on Saturday and remained off for 29 hours before she had to be put back on last night. She appeared to be struggling to maintain and her body finally had enough. Once they re-incubated her she continued to have some difficulty overnight maintaining her blood gases including oxygen levels, etc. they re-introduced her to some of the previous meds for blood pressure, pain, and blood thinner as she was on before. Her blood gases have improved some this morning. The drs are planning to continue to monitor her and wheen some of the ventilator support and meds as she continues to level out. Please continue to pray for her strength and restoration of all her organs.

Big week!

Kirby has had a great week. She has continued to improve this week and to quote the dr.... "we are amazed at how well she has done this week". We are not at all amazed because we serve a mighty God. I get the impression the Drs. really didn't have much hope for our sweet baby girl. God has been so good in letting us see the miracles that have taken place each day. I am not sure that people really understand the miracle that Kirby is. She has fought through many hardships over the last few weeks that without God's healing power....she may not have made it through. So, yesterday Kirby was taken off the ventilator after 5 weeks of being on it. They did CPAP trials for several days and decided she was ready. She had a great day with the exception of a reaction to the steroid that they gave her which caused a rash all over her back. She was very aggitated with this and more than likely aggitated with the discomfort in her throat from the irritation of the ventilator tube for 5 weeks. They were pleased with everything until last night and her evening blood draw that showed that her blood gases were a little off. They did not want to re-intubate but rather to let her try to work through it. She has done okay so far and they are just continuing to keep a close watch on it. She gets a little aggitated when she wakes up at times. I just want to pick her up and hold her......but I can't just yet....hopefully this week though. The Respiratory Therapists have been doing some treatments to help with her lungs and will continue to do so throughout the day. Continue to believe for strength and healing of her lungs. It is so good to see her sweet face without all the white tape. Here are a few pics from the last week or so. Enjoy!

Don't I look comfy!!!

No more white tape on my face. First picture without the ventilator!

Improvements!

Again.....I am sorry for the delay on the posts. The days seem to get away from us so quickly. It seems that we would have lots of time to sit and make calls, respond to texts and facebook messages, update the blog, write thank you notes, etc. but we surprisingly don't stop. We are constantly sitting back with Kirby in the ICU, talking to doctors, meeting and talking with new families, eating, running errands, etc., etc.  The days seem to fly by. Since the last update, Kirby has begun to make progress. After our setbacks last week we have made progress. After talking with the surgeon last weekend, he decided the best route for Kirby was not surgery for the narrowing in the pulmonary artery. He did not feel like it was significant enough to have caused our setbacks. He determined that we would let her rest for a few days and then begin to very slowly make ventilator changes and treat her lungs with some medications for the excess fluids in her lungs along with frequent suctioning and turning. Her lungs were not able to properly oxygenate her blood due to the fluids and collapsing of the lungs. They also drew off lots of fluid from around her lungs giving them more room to expand. During this time we also began NG feeds. After some issues with fluid around her lungs and in the chest cavity, they determined that she has Chylothorax (in my terms it is an issue where the fats from formula or breast milk leak into the chest cavity or around the lungs due to damage during surgery), which is a very common with children who have had heart surgery. So... they began feeding her a special perscription formula that is essentially fat free. This is not necessarily permanent and can heal with a little time. Over this week they have slowly wheened the ventilator and tweeked her meds. Kirby has shown us that big changes are difficult for her so they are taking it very slowly and this seems to be working well. Today has been a big day for her. They took her off her blood pressure meds, took her off blood thinner and substituted Aspirin (which she will take long term...probably for most of her life), took her off Morphine, introduced meds to wheen the Morphine and Versed (sedation medicine), increased her feeds to full feeds (she gets 18 cc's an hour over 4 hours which is equivalent to about 2 ounces in 4 hours), and wheened down ventilator support. With all that said, her blood gases have continued to be great! Thank you Lord! Continue to pray for her to tolerate the ventilator changes, to get stronger with her feeding and overall healing of her body. Oh yeah....I was able to change my first diaper on Mother's Day...make that 2 diapers in 1 hour...and Kirby made sure she did it right....2 big poopy diapers. Oh the things to celebrate!
AND....Kirby turned 1 month old on the 10th!