I'm Back! An Update...

It has been quite a while since my last post and I have received a few emails from people wondering how Isabella is doing. I thought I would give ya'll a quick update on our family, and hopefully get back into blogging again.

The other day James and I were talking about the time we decided to start trying for another baby when Xander was about 15 months old. Looking back I NEVER would have dreamed that just 10 months after we made that decision we would be thrown into a whole new world full of therapies, surgeries, appointments with different specialists, and never ending hospital bills. Life is 10 times crazier than I ever would have imagined it to be with two kids. I sometimes feel like I am in WAY over my head, that I am in no way qualified to be a mother to Xander and even less qualified to be a mother to Isabella. I have these two precious children who look to me for everything. It's truly amazing. On the days that I feel overwhelmed I just have to pray. I look into those sweet adoring faces and just thank the Lord that they are mine. That he blessed me with two beautiful kids and pray I will be mother they need - the mother He knows I can be. In all honesty I would not change a thing about our crazy life. I love that my two and half year old LOVES to learn, loves to sing and dance, and is learning to READ!! Letters and numbers seem to come easy for him, and I am so proud of the little man he is becoming. On the other hand I watch my 6 month old fight and struggle to reach milestones that come so very easy for other babies and I am SO proud of her. She works so hard day in and day out to the point where she literally falls asleep during therapy. She is a fighter for sure and she is an inspiration to me!

Xander has been going to a Mother's Day Out/Preschool Program three days a week from 9-1 at a church near our house. I struggled with putting him in for three days, but I know it's the best thing for him. He is able to have a set schedule and I do not have to drag him to all of Isabella's appointments. I was able to schedule her therapies on the days that he is in school so it works out for everyone. Isabella currently has OT on Monday mornings. Speech on Tuesday mornings (at our house). PT, OT, and Speech on Wednesday mornings. and then PT on Friday afternoons during Xander's naptime at our house. I know 5 hours a week of therapy does not sound like a lot, but factor in driving time/getting ready time and it consumes most of our days. I am SO thankful that she gets 5 hours a week. Arkansas is one of the best states for early intervention ~ another reason I am thankful God called us to move here!!

Isabella just had her 6 month check up last week. She is right on track with growth. Still in the 25% for height and weight and 5% for head circumference. She weighs 14.6 lbs and is 24 inches long! She is so tiny compared to Xander who was like 19 lbs at 6 months old!! She had to get 5 shots and her foot pricked for blood. 3 shots were the regular immunizations and one was a flu shot and the last was a shot called Synagis which is for RSV that she will have to get once a month from Nov-April. She is considered high risk for RSV because of her heart defect.

Isabella at her check up...

And just to be fair... One of my handsome little guy!!

I hope everyone is having a great weekend! I am praying my kiddos don't wake up too terribly early with this time change in the morning!

4 Month Check Up

Isabella turned four months on August 23. I have been doing her monthly pictures with the stickers since one month, but since we were still in the hospital I was not able to do that last month. The thought crossed my mind before we left for her surgery on August 2nd that I should bring the four month sticker just in case. I told myself there was no way we will be down there 20 days! Little did I know... :) Here is the picture of her on her 4 month birthday in the hospital - don't judge... I did the best I could! ;)

She is asleep in the picture...She started sleeping with her eyes open in the hospital -  the nurses told me a lot of babies do this! She is not doing it anymore now that we are home. Wonder if it had to do with the medications?

She finally had her four month well visit yesterday and she looks great! She gained 1lb in 15 days!!! She is now 12lbs 2oz and 231/2 inches which is 25% for both on the typical growth chart! I am so happy that she is growing so well. I also stopped adding extra calories to her formula! I think this is a good sign that she is gaining weight without the extra calories.. it means her heart is not working as hard and burning as many calories as it was before surgery. She had to get two shots yesterday and cried for about 5 seconds. I think it hurt me more than it hurt her! The Dr. was very pleased with Isabella's progress and we do not have to go back until her 6 month check up. It is so nice to have a break from all of these Dr. appointments!

After her check up we rushed to the therapy clinic for Isabella's OT session. She did really well considering she just had shots and we woke her up from a nap in the car seat. I was so happy to be back at the clinic! I know sometimes I wish the therapists would come to the house so I wouldn't have to be up there all the time, but I did miss it. I love seeing all of the kids, meeting other parents, and chatting with the therapists. I also love watching Isabella grow and learn new things! We were there so much before her surgery I guess it just feels like we are finally getting back into our normal routine - and therapy was part of our normal routine before surgery.

I hope everyone is having a good week! Tomorrow is Friday - Woohoo! 

Saturday

I have a list of things I could be doing right now, but I would rather sit on the couch, watch junk TV, and post some new pictures on my blog. Both kiddos are sleeping, James it catching up on homework and now would be a perfect time to start the five loads of laundry that have been sorted on our bathroom floor for three days, or write the ten thank you cards I have been meaning to get to for weeks, or clean out the diaper bag that has become a mobile junk drawer. Yes, I could very well get up and be productive, but I can't seem to peel myself away from the Beverly Hills Nannies Reunion. Tonight I will procrastinate. Tomorrow I will regret. Now, how did I find myself here on the couch? Let's go back to this morning when my busy day started with a 6:30am bottle call from a certain little person who happens to sleep late every day we have to be somewhere but chooses Saturday to wake up early - that's how it goes right? After I fed Isabella I went for a quick run. It was actually COLD outside this morning. I loved it! We had two birthday parties to go to today, so after another bottle call it was time to get everyone ready to go! The first birthday party was for Max at Boingo Bounce. Xander was SO excited. He was running around the house all morning yelling, "YAY, I GO TO BOINGY BOUNCE!!!"

Happy Birthday Max! 

I love cupcake pictures! 

After a short nap playtime in the crib, we were off to the next party. This party was for Lilly and Reid at Farmland Adventures. We had so much fun! 

I love my two boys!

Perfect Fall Picture :)

This is her  signature "bottle call" - she starts trying to eat her lips! So funny. She was so good today! 

Pig Races

This is as good as its going to get! 

We didn't get any pictures of the birthday kids... it was just so spread out that we hardly got to see them at all. Unfortunately we had to make an early exit because sister had a major diaper blowout, and me being the awesome Mom I am did not have any extra clothes and only 3 wipes!!! What a mess. 

We had a fun busy day and I am so thankful for all of our sweet friends! After we got home, had dinner, washed up, and put the kids to bed I was done. Once I started the nanny show I was really done. Oh well, that stuff will get done... eventually. I hope everyone is having a great weekend! I am looking forward to going to church tomorrow. I have not been since we were on quarantine before Isabella's surgery!! Happy Saturday!!

Isabella Update!

We have FINALLY settled back in and we are getting back into our normal routine. Isabella is sleeping through the night again (10pm-7am). After a lot of trial and error she is now taking all of her bottles without throwing up! We stopped the methadone about 5 days ago, but she started showing signs of withdrawal and we had to start it back up again for a couple of days, yesterday was the last day. It takes 1-2 days to get completely out of her system, so we will see how she is tomorrow! in my last post I mentioned that Isabella would be going to the eye doctor to check out the shaking of her eyeballs. The doctor confirmed the nystagmus, diagnosed her with strabismus, and discovered a coloboma in her right optic nerve. Her left eye is perfect, so we will be working with her right eye. We still aren't sure how all of this will effect her vision but at least we now know what we are working with. The nystagmus has already improved significantly since I first noticed it. The only thing we can do for now is to patch her left to try and strengthen the right eye. She only has to wear a patch 2 hours a day and it does not seem to bother her. The strabismus (eye turning in) can be fixed if necessary, and there is nothing we can do for the coloboma. All of this news was kind of difficult to hear because I feel like she has gone through enough already and I do not want to have anything else for her to worry about. I am trusting in the Lord and praying for healing so that she will not need surgery in her right eye.

Now, on to some GOOD NEWS! Isabella had her check up with the Cardiologist today and everything looks GREAT! He was very pleased with everything he saw and he cut her medications down from 11 to 6!! We will go back in three months for another check up and an echo. I am PRAISING GOD because this is wonderful news. She can now go out in "public" - Walmart here we come! HA ;) She can now do tummy time so we can really start working with her to build her strength back up. The Dr. told me that any time a child goes through heart surgery it sets them back 6weeks-2months developmentally. I can already see that Isabella has lost a great deal of muscle tone and she is going to have to work so hard to build it back up. Last night she rolled over in her crib and the Angel Care monitor went off (which means there was no movement detected for 15 seconds) so I ran upstairs and her face was smushed in mattress and she was sleeping hard. I rolled her back over and she was fine, but it is so scary because she did not have the strength to clear her airway. Starting next week we will have 2 hours of PT, 2 hours of OT, and 1 hour of speech. I would not be surprised if the PT requested another session because of how much work we have to do. We shall see!

Going in for my first Heart Check up! 

Sleeping during her EKG :) So Sweet! 

I am so thankful that our baby girl is doing so well! Thank you for continuing to check up on her and for praying! I know God hears our prayers - he healed our sweet girl!

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! :)