Home Sweet Home

We are home!! We got home Friday evening which was exactly three weeks post op. I have been wanting to update the blog, but it has been a little crazy around here. This is the first time I have been able to sit and have a minute to myself so I thought I would give everyone a little update on Isabella. She has been doing really well for the most part. We have had issues with her throwing up her bottles. I was putting her medicine  (she is on 11 different medications) in her bottles and then she would throw them all up and I had no way of knowing what she got. I had to change the formula from 30 cal honey consistency to 24 cal nectar consistency which has seemed to help. She has only thrown up one time the past 6 bottles! I have also been giving her the meds by my mouth with a syringe, and she seems to be tolerating that well. Thankfully she did not get her days and nights mixed up while in the hospital so she has been sleeping pretty well. I do have to get up to feed her every 2-3 hours during the night. She was going about 6 hours without a bottle before surgery, so hopefully we can work our way back up to that!

She had a check up with the pediatrician today. She is 11 lbs 2oz! Still in the 10th percentile (on the regular growth charts). The doctor is happy with her growth and said that she may just be petite no matter how many calories we try to give her. He was however concerned about her eyes. After surgery Isabella's eyes have been darting back and forth for the majority of the time she is awake. He said it may be something as simple as her needing more time to re focus her eyes after being sedated so long, or it could be something as serious as her having a little stroke in the nerve during surgery. Of course he told me not to worry, he doesn't think it was a stroke, but we have to get it checked out. She has an appointment with the eye doctor on Friday.

I am so happy to be home and happy that our family is back together! I can not thank you all enough for your prayers and encouragement through out these past few weeks. I am so thankful that we were able to take little Isabella Faith home and that she did not need another surgery! God is our Healer.

I wanted to type more, but sister is screaming, and I have to pick up the house some because her Occupational Therapist is coming over for a session! I hope everyone is having a great week!

All of her medications

At her check up today - she looks so good!

Sweet Girl 

Xander was happy to get all of sissy's toys back out! :) 

Day 18

We are still in the hospital! Before surgery I had several doctors tell me we would be here for 7-14 days and I would laugh every time. I was confident that we would be out of here in less than 7 days. Well, here I am 18 days after surgery and I am wishing the doctor's estimates would have been right!! We are still in the step down unit, which in all honesty is awful. I have probably slept about 10 hours total over the past three nights. It is SO hard to share a (tiny) room with a stranger and her three week old baby, and have nurses and techs coming in and out of the room all night. As hard as it is, I am thankful that Isabella is doing well enough to be over here. I know we are just one step closer to getting home.

Originally the plan was for us to go home TOMORROW!! Unfortunately we had a couple of set backs today so I don't think that will happen any more. They are still weaning her off the oxygen, which is the only thing keeping us here now. Yesterday she was down to room air (21%) and 1 liter (air blowing in her nose). They were going to turn if off today but ended up having to turn it UP. Her pulse ox started to drop into the 80s, (they want it 93 or above), and they didn't know why. They did a chest x-ray which showed a little haziness in her lungs but nothing too worrisome. They turned her oxygen up from 21% to 25%. Which did help bring her stats up. Later on this evening I was waking her up for a bottle and I noticed she was breathing extremely fast, her nostrils were flaring, and her stomach was retracting. I counted 100 breaths per minute - she was literally panting. She was also swollen and her eyes were puffy. I had them call the dr. who ordered another chest x-ray which showed a little more haziness than before. They upped her oxygen again to 2 liters & 30%, and gave her an extra dose of lasix - which should help get rid of some of that fluid. I have been so discouraged all day. I am so ready to get home. 

There is good news though... Isabella no longer has a feeding tube! She has been doing so well taking her bottles, and I am so thankful we do not have to worry about that anymore! She is still on Methadone and Ativan - which she will go home on. They are going to give me a schedule so I can continue to wean her off, and it should take about 10 days. I am a little nervous about this! I am scared of narcotics, and I really hope I don't mess anything up. I would hate to see her go through withdrawals. 

I will let you know what they decide tomorrow! I am pretty sure they are going to have to start weaning the oxygen again, so hopefully we can come home Wednesday! Thank you for your continued thoughts and prayers. God is so Good. Even though I am discouraged that we will be here a little longer than I would like I am praising the Lord for continuing to heal our baby girl and I am still trusting in Him and His timing. My friend Meredith posted this verse on FB this morning and it has stuck with me all day:

He has made everything beautiful in its time. He has also set eternity in the human heart; yet no one can fathom what God has done from beginning to end. Ecclesiastes 3:11 - 

No more feeding tubes! 

She went from this... 

To this...she is up to her old tricks! :)

Respiratory therapy to help clear up her lungs...look how good her incision looks! 

Day 14 Update!

I am so sorry that I have not updated for a few days!! They moved Isabella to 3 different rooms in 2 days and during all of that craziness my laptop charger was misplaced. They finally found it today, so I wanted give everyone a quick update on our little princess! She is doing GREAT!! We just got settled into the step down room! The rooms are not nearly as nice as the ones we have been staying in (we are back in the old unit) but we are one step closer to going home! Praise the Lord! While she is in the step down room I am in charge of all of her care, and I have to sleep in a chair bed next to her crib. We are also sharing a room with another family, so this should be fun! ;) 

Isabella was finally able to try and eat today! Thankfully she did not forget how to take a bottle! I knew she wouldn't have a problem, but they kept telling me she would. They gave her two bottles today that she sucked down quickly, BUT the speech therapist thinks she is showing signs of silent aspiration. She said this was common for babies after being on the ventilator for an extended period of time. They will try and give her another bottle tomorrow to see if she is still having the same issues.

In order for us to go home she will have to be taking her bottle for all feeds and completely weaned off all narcotics. She is still on methadone and ativan (which replaced the morphine and versed) and they are slowly weaning both of those. They tried to wean her a little too fast yesterday and she was suffering from serious withdrawals. It was so sad! They had to give her an extra dose to get her to calm down. It's crazy how fast their little bodies become addicted to pain meds! They did skip one dose of ativan around 2pm, and she did not show any signs of withdrawal!

She also had another echo today and everything looks the same as the last echo. This is GREAT news because her valve leakage has not gotten any worse (at the moment) and she is able to tolerate the amount of leakage for now. The report said they left valve was moderate and the right was mild. We had one doctor tell us that her left was severe and the right was moderate, but for some reason that was not accurate. Two other doctors have confirmed that it is moderate and mild. I am just praising the Lord that she is able to tolerate this amount of leakage! They still feel like she may need another surgery in the future (especially if it gets worse) BUT I will be praying daily that will not happen!! God is so good. 

Update on baby Samuel...The surgeons did not feel good about trying to do another repair, so they went ahead and replaced his valve with a mechanical valve today. The surgery was a success! Samuel is in recovery and doing well. While this is good news, there are still some other things they need to worry about. Since Samuel now has a mechanical valve he will need to be on blood thinners. There can be complications with children taking blood thinners, and his Momma has been worried about this! Please continue to pray for Samuel and his recovery. Pray that the doctors are able to find the right dosage for the blood thinners so his blood will not clot! 

God is our Healer!!!

This was the first bottle she has had in two weeks! 

New Crib

Trying to escape... she is ready to get out of here too! 

Sweet Princess

Thank you for all of your continued prayers! Hopefully we will be out of here SOON! 

Day 10 & A Prayer Request!

I wanted to give everyone a quick update on Isabella! She has been doing really well the past few days. Praise the Lord!! They extuabted her this morning around 11am, it is now 6pm and everything still looks good! Her stats look great and her blood pressure has stayed normal! I am giving all the Glory to God!! I have been so anxious about this day and I am so thankful that she is doing so well. She is still on her heart medication which helps the heart function overall, and they will not take her off of that until they do another echo. I know we are not totally out of the woods yet, but still moving in the right direction. I will continue to keep you updated on her progress. I have not gotten to hold her yet, but hopefully sometime later tonight!! Here are a few pics from her extubation today!

Words can not express how grateful I am for everyone who has been checking up on us and praying for our sweet girl! Thank you all!! I have another prayer request for all of the prayer warriors out there!! You may remember me mentioning that I made a new friend here in the hospital who has a 5 1/2 month old son who had the same surgery as Isabella. Jeannette is from NWA also and has been at ACH with Samuel for about a month now. He had his first surgery back in July and was not able to be extubated because of severe valve leakage. They ended up doing a second surgery to try and repair the valves about a week before Isabella's surgery. Well, Samuel is still having some difficulties and is still not able to be taken off the ventilator. They plan on doing an echo in the morning and then having a group meeting with all of the surgeons and cardiologists to discuss the next steps. They are saying he still looks like he is experiencing heart failure and may have to do ANOTHER surgery. They are trying to avoid doing a valve replacement, but they will if they have to. PLEASE pray for Samuel! We are praying he does not have to have another surgery, that he will not have to have a valve replacement, and that the doctors are able to figure out how to treat him so he can go home! Pray for Jeannette who has a husband and three kiddos back in NWA. Pray that the Lord give her strength and peace to make it through these next few weeks. Pray for comfort and for healing!! We know "for nothing is impossible with God" Luke 1:37. Thank you & God Bless!

Day 8

We are praising God for another good day! Isabella has been doing very well and seems to be moving in the right direction. If everything continues to go well they will extubate her on Sunday. I am both anxious and excited about this! I will finally get to hold my sweet baby girl again! I am just praying that she will be able to tolerate the leakage from her valves without the breathing tube. Isabella got to go on a little field trip today. She had to go down two floors to the radiology clinic to get a PICC line put in. They do this in a sterile environment using an ultrasound and x-ray to guide the line through a vein in her arm all the way to her heart. Sounds scary, I know! Apparently they were not able to get her to go to sleep so they had to give her several doses of narcotics while she down there. She has been completely knocked out for 4 hours now. 

She enjoyed looking at her toys while she was awake this morning. We can now cover her up with a blanket & turn out the lights in her room since she is more stable! 

We do not travel lightly...

Sweet baby slept the whole way downstairs

They had to move her from her bed to the table on the left... talk about stressful!! 

Sister kept trying to roll over so they had to tape her down!! 

She was NOT happy about this! Poor Girl! 

I know there are a lot of people following Isabella's heart journey and I am so grateful for all of you!! Thank you all for your continued support, love, and prayers!! God is Good! Praising & Praying! 

The Big Move!

I have been wanting to share these pictures of the new CVICU with you all. The new unit opened a few days after we got here and they moved all the kiddos to the new building on Monday. It took ALL day. I am so thankful that we were able to be apart of the new unit!

Isabella's old room, it was huge, not really family friendly though.  

The Atrium is part of the new building. It's so pretty! 

Awesome new playground near the atrium! Xander would LOVE this! 

This is the "Family House" for the CVICU. Parents can sleep in here, do laundry, eat, shower, and just hang out. 

Thank you Bobby Petrino for the awesome CVICU family house!! Yes, I know... ;)

This is in Isabella's new room. I can sleep and hang out in here now! We also have our own bathroom and shower. They really thought of everything! 

The view from the sofa/couch. I can't wait to sit in this rocking chair and rock Isabella!!!

The new rooms are a lot smaller and all the nurses are having a hard time getting used to it... BUT they are much more family friendly! It's so awesome to see everyone and every company that donated to make this new unit happen! Isabella's room was brought to us by Kimberaly Clark & Huggies Diapers. I asked the nurses if the babies in this room had to wear huggies diapers now! lol.. nope, they are all still in pampers! 

I'll be back later with an update on Isabella! We have had an uneventful day so far! :)

Day 6

Praise the Lord we had a much better day today! Isabella was able to keep her blood pressure up enough to continue to wean off the blood pressure medication! They just turned it off completely, so this is a step in the right direction! They will continue to wean her off of the ventilator. She has not had a fever since yesterday, and she was awake for about an hour and tolerated it well! God is so good!!

We did get some bad/good news this morning. Isabella's cultures came back positive for pneumonia. Initially I was devastated, I knew this would be a setback, and I did not want to have to worry about this on top of everything else. The doctor actually looked at it as a positive, while she did not want Isabellita (as she calls her) to have pneumonia at least this was something they could treat! This is what could have been making her blood pressure drop. She has been on antibiotics for one day (they started it the same day they took the cultures) so she has 6 more days of treatment. She has been awake a lot more today and it breaks my heart to see her so hungry! She keeps trying to eat the tubes near her face, she even tried to get her hand in her mouth!! I am so happy to see her little personality coming out again!  

Once she is extubated (off the ventilator) we will know if she is able to tolerate the regurgitation (leakage) from her valves. IF she is able to tolerate it then they will most likely put her on medication and try to get her to 2-3 years old before they do another open heart surgery to repair/replace the valves. This is what we are praying for! Once she is older it will be much easier to repair the valves. IF she is not able to tolerate extubation and she shows no signs of infection then they will go ahead and do another surgery to see if they can repair the valves. 

I am just so thankful that she is having such a good day! Thank you all for your love, support, and prayers! We appreciate you all! We pray over Isabella every night before we leave and last night we told her she had to keep fighting...And she is! She is a little fighter for sure! I realized yesterday that we have to take this one day at a time. We could drive ourselves crazy with all the what-ifs, I MUST "Rest in the Lord and wait patiently for Him..." Psalm 37:7. Our God is HEALER and we continue to have faith that he is healing our baby girl! 

They passed out these cute heart pillows today so all of her nurses can sign it! So Sweet! 

Isabella loved looking at her balloons while she was awake today! And .. No more chest tubes!  

"But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body." 2 Corinthians 4:7-10. Thank you Marci for sending me this today! It's a great reminder that God sustains us through our suffering and renews us each day!!  Let's keep Praising & Praying!! Thank you all! :) 

Also- Update on the little boy who had the heart transplant... He is doing WELL! So far so good. They said the heart was a perfect match for him and the surgery went along without any complications. 

*****

I just wanted to share this picture my sister sent of my handsome little man... I miss this boy so much! I know he is in good hands with Annie & Aunt Barbara! He is getting SO spoiled!!

Day 5

I am not going to lie, today was tough. I feel like I have been doing pretty well emotionally, until I walked in this morning. Isabella's blood pressure was still fluctuating. She had a cloth over her eyes to block out the light. I moved the cloth so I could say good morning. I wasn't expecting her eyes to be open (they have been closed for the better part of 4 days now) but they were. Her eyes were open, but she was so sedated that she wasn't there. She wasn't moving or blinking, just staring. I got really emotional and had to leave the room. I went in to this surgery thinking we would be going home by day 5, but we really aren't any further along than we were on day 2. Everything just kind of hit me at once and I had to take a step back and realize that I can not compare her to other babies who have gone through this surgery, she will be ready in her own time.

That brings me to the results of Isabella's echo. They were not as good as we had hoped. It looks like BOTH valves are worse than they were right after surgery. The left valve WAS a mild-moderate (leakage) now it's severe and the right valve WAS mild and now its moderate. This is what is causing her blood pressure to fluctuate. The plan is to keep trying to push her to see how far she can go (as far as weaning and extubation) and see how she does. The doctor told me there is a very real chance they will have to do another open heart surgery to try a repair the valves. They will see what kind of progress she has made in 2-3 days and then go from there. If she is able to tolerate the extubation and go home we will have to get an echo EVERY month to monitor the valve, and most likely have another surgery at 2-3years old to replace the valve. Also - they put her on two different antibiotics because she is starting to show signs of an infection. This news was extremely tough to hear, especially after the morning I had, but I realize I have to take it one day at a time.

Earlier today I was scrolling through the pictures in my phone (I love seeing pics of Isabella's sweet face w/o the vent & pics of my sweet boy) and I came across a verse that saved a while ago that was perfect for today. "Many plans are in a man's mind, but it is the Lord's purpose for him that will stand. - Proverbs 19:21. I seriously have to be reminded of this constantly. I can plan, worry, and stress, but in the end NONE of that matters! The Lord has a plan for Isabella. He knows exactly what he is doing. All I have to do is put my trust in HIM knowing that his will will prevail no matter what.

Please keep praying for our sweet girl!! Praising & Praying!!! Thank you & God Bless! 

"For nothing will be impossible with God" Luke 1:37

Day 4

We had a crazy day today! I was not able to post like I usually am when things calm down in the evening. They did move all of the kids over to the new unit, which is BEAUTIFUL! I can't wait to share pictures with you. Isabella has had a pretty good day over all. We have had some issues with her blood pressure which they still are trying to get under control. It was actually kind of scary... we went to get something to eat and as soon as we walked back in the room Isabella's monitors started beeping like crazy. Her blood pressure dropped into the 30s her pulse ox dropped into the 70s and she stopped breathing on her own. She is still on the ventilator, but it is only on volume control - which means if she forgets to breathe it will breathe for her after 15 seconds. They were poking her and moving her to try and get her to take a breath, but she was unresponsive. All of her stats went back to normal after a few minutes, but it was scary, and they don't really know why it happened. They are going to try some different meds tonight to see if they can get her blood pressure under control. She has her first full echo tomorrow since the surgery so we will get to see how everything looks! She did get her chest tubes & RA line out! YAY!! But she lost a lot of blood when they did that so they had to give her blood to make up for it. Thank you for your continued prayers!! We truly appreciate them!

Normally I would share a bunch of pictures of our beautiful girl, but I have a heavy heart tonight. Today is our 4th day in the hospital, and every day we meet more and more people who are really going through far more than I could ever imagine. At one point in my life (not too long ago) I thought that having a child with down syndrome was possibly the worst thing that could ever "happen" to me. I look back now and realize how utterly ridiculous that was. Not only because our daughter is a beautiful gift from God and she has brought us more joy than we could have ever imagined, but because I now know that there are far more significant things people are dealing with. More important than an extra chromosome. 

We were leaving the hospital tonight and there was a gentlemen in the elevator with us who was pulling a wagon full of stuff from the CVICU. He shared with us that his 7 year old son was having a heart transplant in 48 hours. They have been in the hospital over 2 months waiting for a heart, and they finally got the call at 9pm. I started crying right there. I cried because I was overcome with joy. Joy that his son was going to live! But wait.. in order for his son to live that meant that someone had to lose their child. I cried thinking about the pain that family must be feeling right now. How can that be? Crying for joy and sadness at the same time? WHY did someone have lose their child?! WHY did this child need a new heart in order to live!? The only thing that I kept thinking was "The Lord gave and the Lord has taken away. Blessed be the name of the Lord." Job 1:21 

It brings tears to my eyes just thinking about it. It truly puts EVERYTHING in perspective. Everyone we have met here at ACH has been so genuinely kind. We all share a common bond - sick kids. We all know the pain of watching our children suffer and we all see how hard the doctors and nurses work to save our children's lives. It's so amazing. We are only 4 days into our "heart journey" but I know I have been changed for a lifetime. 

Will you PLEASE join me in prayer for this little boy who has been given the gift of LIFE! Pray for his surgery and recovery. PLEASE pray for the family who lost their child tonight. I can not imagine the pain they are going through. And please continue to pray for our sweet Isabella. Pray that her blood pressure stays normal and that her echo tomorrow will show a fully repaired heart! Thank you!! 

Day 3

We had another good day today in the CVICU. Isabella is now off the nitric oxide and is only on 30% oxygen (she was on 65% this morning) and they have also increased her feeds through the feeding tube in her nose. The plan for the next few days looks like this:
Monday: Take out the RA line and the chest tubes!! The chest tubes are the three tubes coming out of her stomach that look SO painful! They will also continue to decrease the oxygen. AND they are moving all of the kids in the CVICU over to the new building. The nurse said it should take about 30-60 minutes per child (once they have set everything up to be transported). I am so excited to be able to be a part of the new unit! I heard it is SUPER nice. I will be posting pics tomorrow.. so stay tuned!
Tuesday: they plan to extubate her!! No more ventilator! We will finally get to see her pretty little face again!

Daddy's Girl!! They had to take off her leg warmers and socks and turn off the heating lamp because she started running a fever.

Hi Mommy! 

Isabella is the most stylish little girl on the floor! thats what the nurses keep telling her...;) Unfortunately all of her other leg warmers are too big, I was hoping to have a pair for every day. :) Just because she is in the hospital does not mean she can't look cute! ha. Actually leg warmers are perfect for babies to wear while in the CVICU because the nurses need to be able to see their feet. Her little legs and feet get so cold and these seem to help some. She can not wear clothes until she is moved to the 'step down' room. 

 I had to put 2 pair of socks on her!! Her feet are seriously ICE COLD!!! They keep telling me that her body temp is fine, her hands and feet are just cold from a certain medicine, but I don't care what they say... I can not let me little girl freeze!! 

My poor girl is SO hungry... she was trying to eat the sponge they use to clean her mouth! :(

I think Isabella is looking better and better every day!! I know the Lord hears our prayers! For now we will continue praising God for a smooth recovery so far and praying for everything to keep moving in the right direction, and that her mitral valve will NOT be an issue once she is off the ventilator.

Thank you all for your continued prayers, love, and support. 

Rejoice always; pray without ceasing; in everything give thanks; for this is God's will for you in Christ Jesus. 1Thessalonians 5:16-18

CVICU Day 2

Today is Isabella's second day in the CVICU (cardiovascular ICU). She is doing pretty well so far. They are weaning her off of the nitric oxide. Once they do that they can start weaning her off of the ventilator and the sedatives she is on. They put a feeding tube in and have started to give her formula (5mL) an hour. Once they know she can tolerate the formula and after she is off the vent we can start giving her bottles. Everything kind of depends on how well she does when she is breathing on her own. She has had a few dips in blood pressure and a few desats, but they are tweaking all of her medication so hopefully it will not be an issue. She looks good, but does have some swelling. It has been pretty uneventful today (which is a good thing) and we are moving in the right direction. Monday they will transfer all of the patients in the CVICU over to the new building which should be interesting! I heard it is REALLY nice and I can't wait to see it. We have met some great people while we have been here. There is another baby (5 months) with down syndrome who had the same surgery as Isabella who is recovering a  few rooms down. I have enjoyed talking with his Mama who is also here from NWA!

A few pictures from today...

Sweet girl! Love her little purple bow. 

All of the nurses love her leg warmers! Aren't they just the cutest!!  

Of course we needed to change her bow to match her leg warmers! :) 

I love my sweet girl!! I can not wait to hold her and snuggle with her again! 

Wes and Isabella were born on the same day!! I 'met' his mom through the down syndrome pregnacy birth board and we became FB friends...hopefully we will meet in person one day! I thought this picture was so sweet! I am so thankful that I met his mama. She always had such a positive outlook throughout her pregnancy knowing Wes had down syndrome. It was so encourging to see how she embraced the diagnosis! Wes is so cute you have got to check him out!

A friend sent me this verse this morning.. Now may our Lord Jesus Christ Himself and God our Father, who has loved us and given us eternal comfort and good hope by grace, comfort and strengthen your hearts in every good work and word. 2 Thes.16-17. I thought it was so perfect for what we are going through that I had to share! Thanks Mandy! :) 

Thank you all for checking up in Isabella! Please continue to pray for her recovery! I am so thankful for our wonderful friends and family who have been praying for us! I will be back with an update tomorrow! Hopefully she will be off the ventilator and we can see her precious little face without all of those tubes!