Luca's Heart Journey - 8 weeks Post Op

 Today marks 8 weeks since Luca had open heart surgery and 4 weeks since we left the hospital! 

Words can't express how grateful we are to be here, experiencing his first Christmas season at home and not in a hospital room. 

I haven't updated much as we have been busy adjusting to giving medications several times a day and keeping him on his feeding schedule along with getting back to homeschooling and our normal routine with all seven of us. 

We are praising the Lord for progress shown on his most recent echocardiogram on 11/29. His left ventricle once severely depressed at diagnosis and moderately depressed at release from the hospital showed as now mildly depressed! He will continue on his regimen of heart failure medications and will receive another EKG and echocardiogram on January 20th. 

In regards to feeding, he has also made progress!  As of two and a half weeks ago, he has been tube free! He is doing so well taking all of his medications my mouth. Feeding has been a learning curve as we figure out the right amount of thickness for his formula. It has been a bit of a struggle to find the right consistency, thick enough not to choke him but thin enough to come out of the bottle properly. 

In regards to typical baby milestones, Luca turned six months old last Wednesday! We are so incredibly thankful to have been given a half a year with our sweet smiley boy. He is just over 16 pounds and has officially found his feet which is one of my favorite baby accomplishments ever! So precious! He isn't able to sit without support yet, but that is to be expected since was laying in a hospital bed for so long. He is getting stronger each day and loves rolling around and playing with his toys. Since he is not able to nurse, he is my first baby to be sleeping in his crib at night. He usually wakes for two bottles and usually goes back to sleep quickly.  I still miss our nursing snuggles, but am so grateful that he is able to rest well. 

This week, he has struggled a bit with a cold, but so far we have been able to manage it at home. 

We have continually been blown away by the kindness of so many even since we've been home. From meals to monetary gifts, we feel so undeserving, but are so very grateful. Experiencing the Church (and not just ours) be the hands and feet of Jesus over the last two months is something I pray we never get over. May we serve as we have been served once this season is behind us.

Thank you all again for your prayers and support. Please continue to pray for our Luca Paul.

Luca's Heart Journey - The Night Before Follow Up

 Somehow ten days have passed since we left the hospital. Time truly does pass differently at home as opposed to the hospital!

Luca continues to amaze us as he seems to be rolling right back to where he was with his physical milestones, both literally and figuratively! Although he remains on sternal precautions meaning he cannot be lifted by his arms or chest/waist, he is showing us that he must be in very little pain since he is loving to roll and play just like he was before his surgery! We are so grateful that he seems to have lost very little ground in this regard! 

Feeding wise, we are adjusting to the learning curve that is thickened feeds by bottle and also using the feeding tube. He started out consistently taking two-three ounces of thickened milk by bottle. He normally seemed content after his bottles, but was being given four ounces through his feeding tube at the hospital so we were giving him is final ounce via the tube and planned to  keep him on that regime until his follow up appointment, but over the last few days he has started taking his entire four ounces by bottle and hasn't needed to use the tube for feeds at all! 

We were also able to switch him back to the European formula that is so much more gentle on his tummy and change out the rice for oatmeal and he is having no more constipation or gas trouble since doing so! The ingredients in the food we eat/feed our children truly make a difference! 

It continues to challenge my heart to not be able to nurse him and to shift so many of the ways I have always cared for my babies, but I am reminding myself that it is a small price to pay for his heart to be functioning as it should. I miss our nursing snuggles and the ease of nursing him in the middle of the night, but I am striving to use the nightime feeds as a time of prayer for others as so many have faithfully prayed for us over the last 5 weeks.

He seems to be doing well heart wise with no concerning symptoms, but we will know for sure on tomorrow after his EKG, echocardiogram and cardiologist appointments. Please pray with us for progress in heart function, specifically the level of depression in his left ventricle.

Tomorrow he will also have a weight check, but according to our baby scale which we have been using to track his weight, he is up from 14 pounds 7 ounces when we left the hospital to 15 pounds 1 ounce as of this morning. That amount of gain is consistent with what is expected for his age and we praise the Lord for his growth! 

We will also see the speech therapist tomorrow and discuss the removal of the feeding tube and the possibility of another swallow study in the near future. 

Please pray that he will be able to nap well and good spirits during such a busy day of back to back appointments. I also need to time his bottles just right so that he isn't hungry during his 45 minute echocardiogram, but ready to eat for his speech appointment following it. 

My heart is anxious about returning to the hospital. I think I am beginning to process the traumatic events of October 18-20 and returning there for what is expected to be a day of outpatient services is a bit overwhelming considering we went to the hospital that night thinking we'd only be there a few hours and that turned into 31 days. 

Being home has been so sweet, but also an adjustment for everyone after such a long time away from our rhythm and routine. We are slowly settling back in and pray that tomorrow passed quickly, we receive a good report and that we will be home tomorrow evening with no complications!

We are so very grateful for our smiley baby boy who is truly such a light in our home. We can't help but smother him in kisses and continue to praise the Lord for his goodness in sparing Luca's life and giving us the opportunity to see him learn and grow. 

Thank you all again for walking this road with us. 

Luca's Heart Journey - Friday Evening Update - Post Op Day 22 - Hospital Day 25

 Friday Evening Update - Post Op Day 22 - Hospital Day 25

The last two days have been busy as it seems we may have picked up the pace a bit on our road toward home!

Yesterday, Dr. Shruvi, once again advocated for a larger wean than the rest of the team wanted. She reasoned that with his low wat scores of zero to one, we should continue to be a bit more agressive in the weaning process as it is essentially the only thing keeping us here. It was decided that we cut the Morphine dosage in half. Today, we made the final cut on his Ativan dosage and also spaced it to every 12 hours instead of every 8. If he continues to do well, you're hopeful that he will be off all of these medications by early next week. 

Yesterday's echocardiogram was unchanged from last week's, but that was expected. We are praising God that there was no regression. Please continue to pray with us that his function improves over the next few months as the doctor's believe it will.

Labs were ordered today to measure his BNP again. When his heart defect was discovered, his BNP was 2600 (anything over 100 is a sign of heart failure). A week ago it was 152 and it is now 95! To us this is nothing short of a miracle.

 Another exciting step on the road toward home was the beginning of our ng tube training. So far I was able to place two tubes which is a prerequisite for discharge. Daddy will place his first tube on Monday. We were also trained in how to operate the feeding pump.

Originally we thought that we would complete our supervised family care this weekend, but it is now scheduled for Monday night into Tuesday morning. During this time, we will be responsible for providing all feedings and drawing up and giving each medicine without the assistance of the nurses. Another prerequisite for discharge.

Luca's repeat swallow study is scheduled for Monday afternoon at 2 PM. Please pray with us that his vocal cords are functioning at a higher level and that he will be able to eat by mouth without aspirating. Although he would most likely go home with the feeding tube regardless of the outcome, passing this test would allow us to start feeding by mouth again in hopes of weaning him off the tube sooner rather than later. He would also be allowed to nurse again which would provide comfort to both him and Mama!

As we inch closer to finishing up this portion of the journey, I would also ask specific prayer for Luca's continued weight gain and overall health.

It is hard not to be anxious about the amount of other sicknesses that seem to be running rampant right now. It would be so sad to have something else set us back when we can almost see the finish line!

Words cannot express how grateful we are for all of you and your prayers and support over this last month. We have felt the prayers and have been so blessed by the tangible gifts you have given. Whenever the social worker comes by to talk to us, she is always amazed by the incredible support system we have. I wish that she could understand that this is what the Body of Christ is supposed to look like. I know that our family will be striving harder to provide the kind of comfort and hope that you all have given to us to others once this is behind us.

Luca's Heart Journey - Post Op Day 18 - Hospital Day 21

 Monday Morning Update - Post Op Day 18 - Hospital Day 21 

Last Sunday evening, I left the CICU with tears streaming down my face, defeated from a day of watching Luca battle withdrawal alone. The plans to remove the line that was keeping me from holding him had been delayed and my heart was overwhelmed with helplessness. I went back to our room at the Ronald McDonald House telling the Lord that I didn't think my heart could handle another day of watching my son suffer, begging Him to turn the heart of the surgeon toward removal if it was the best option for Luca.

He so graciously answered and somehow a week has passed already and more mountains have been moved. 

We've pushed through the pain and plodded along the path toward home, hour by hour, moment by moment.

Luca has faced physical pain as his tiny body adjusts to functioning without the medicines it was given for the last twenty days and also as it begins to feel the effects of open heart surgery, each hiccup or cough, bringing discomfort again.

Mama has battled intense emotional pain which feels so heavy at times, I can almost feel it physically. Learning to cradle him in my arms without offering him an opportunity to suckle continues to challenge me each day. We're learning to rock, to pat and to sing instead. The age old hymn "What a Friend we Have in Jesus" seems to be a favorite as I watch his eyes flutter and finally succumb to sleep. 

Yet with the pain, He is granting such peace. There has been so much I didn't think I'd be able to face, but somehow He has made it possible.

Yesterday was another quiet day. During rounds, the only change made was another drop in his morphine dosage. If he continues to do well, I am hopeful most of these medications will be close to being discontinued by weeks end.

I feel like I'm starting to see glimpses of the joyful boy we brought to the ER three weeks ago today. His smile is slowly returning and he has been trying to "talk" more as his body wakes fully from the sedation. I am encouraged by the amount of sound he is making now versus last week and I am believing God is restoring his vocal cord and his ability to eat. 

Please continue to pray for progress and for patience as the distance between us and home still seems lengthy.

I can't believe it's been nearly a month since all seven of us were together. Londyn Grace, Liam, Leva and Laityn have been so amazing as they've dealt with their own emotions regarding this journey and also sickness (twice!) without me there to hold them through it. Our family has been forever changed by our baby boy's heart and I know we will cherish the gift He has given us in each other more now than ever.

I am looking forward to a good week because I serve a good God whose goodness doesn't change based on circumstances. I'm excited to see what He has in store.

Luca's Heart Journey - Wednesday Night Update - Post Op Day 13 - Hospital Day 16

 Wednesday Night Update - Post Op Day 13 - Hospital Day 16 

Two weeks ago today, after struggling to respond to being placed on a ventilator, it was discovered that our baby boy was in heart failure. It's taken me two weeks to even verbalize those words, but that is the reality. His heart was functioning at less than half of it's normal function and at any moment, we could have lost him. 

But earlier tonight, although experiencing some very hard withdrawal symptoms, our Buddy and I said farewell to the Cardiac Intensive Care Unit and stepped down to the regular cardiac floor here on 2B. 

The past two weeks have been the longest, most challenging weeks of my entire life and yet looking back so much of it is a blur. I don't know how we got here, other than by His gracious hand picking us up and carrying us when we didn't feel like we could do the next thing. 

He's crossed so many big things off the list. Making it through surgery. The coarctation being successfully repaired. His delayed chest closure. Lungs healthy enough to be taken off the ventilator. 

Today's echocardiogram brought wonderful news of increased heart function. 

Luca's right ventricle was moderately depressed upon discovery of the coarctation and his left was severely depressed.

Today the right is mildly depressed and the left is now moderate. 

Dr. Frazier, who was the cardiologist to first tell us of Luca's surgery taking place the next day and who has asked to take him as an outpatient upon discharge, reminded me again today that she expects the left ventricle to continue to improve with time. Since it has four months to get tired, it needs more than two weeks to resume normal function. 

It continues to amaze me that the Lord led us to A. I. DuPont where Dr. Pizarro took my son's tiny heart in his hands and repaired it to function again.

I will be forever grateful for His goodness.

These last little steps between us and home seem daunting, especially when I cannot give comfort to him as I want so badly to do, but we continue to plod the path with His Presence to guide us. 

Luca is still on a heavy amount of narcotics and the process of weaning him from them is difficult. It will likely take several days. His little body fought the sedation so hard and he had to be given a lot of sedation to get him through surgery and the days beyond it so it will take time to get used to the lower dosage.

So our specific prayer requests are for Mama to be able to get Luca through the hard moments without rescue doses of the medication. His nurses rate his withdrawal symptoms on a scale (low being the best)  and when he is left to lay in his crib alone, he scores a 5 as opposed to when Mama snuggles and holds his paci in and he scores a 2.

Ater discussing it with his team, we are hopeful that he was not successful at his swallow study because of the high dosage of medication he is still on so the prayer is that he will pass once he wake up more and is retested.

Your continued love and care for us is humbling and we appreciate everything so much more than we can express. Thank you for lifting him up over these last few weeks. Please continue to pray.

Luca's Heart Journey - Post Op Day 12 Day

 Tuesday Update - Post Op Day 12 - Hospital Day 15

Yesterday was a big day for our little boy. Shortly after I arrived, the nurse came in with amazing news! After a disappointing day on Sunday, one of the surgeon's agreed to removing the RA line and was ready to remove it right away! 

The removal took less than five minutes and the nurses were so kind to get him right out of bed and into my arms. It was such a relief to be holding him again as I never imagined that laying him down in the ER crib would lead to 13 days of not being able to do so! I am so grateful that God spared my baby and gave me the privilege of holding him once again. 

He gave Mama a few soft smiles and we FaceTimed with his siblings who were so excited to see him! Unfortunately he had gone another 8 hours without food again in preparation for the line removal so he was quite hungry at this point.

Just before his nurses began his feed, the speech therapist arrived wanting to take him down for his swallow study. 

We were told last week that his vocal chord paralysis would impact feeding, but I was hopeful that maybe he would do better than expected.

When he returned from the study, I knew immediately that he hadn't passed as they started a ng tube feed right away. 

The therapist assured me that this is very common and most likely won't be forever, but it will be for the foreseeable future. 

He is not permitted to nurse or bottle feed until he can pass the study with aspiration. Please pray that his vocal chord will begin to function again soon.

If you know me in real life, you know that nursing is my primary form of comforting and soothing my babies so we are struggling with how to do so without having nursing as an option. My milk supply is also suffering despite pumping around the clock.

In regards to his eating, we also are not allowed to use the formula we were supplementing with at home (that he was doing so well on, in regards to his growth and no belly issues) so he was switched to the cleanest formula I could find that is FDA approved. Please pray that he tolerates this change well.

Yesterday also included the removal of his chest tube which is wonderful because they say a lot of older heart patients that can communicate comment on how painful the chest tube is. His wires were also removed since he has not needed any pacemaker assistance since surgery. 

In regards to the next steps in recovery, this week will probably seems slow. They will continue weaning him off the morphine and adavan, alternating each day until he is off of those completely. I long for the day when he is no longer affected by these medications and I can see his true happy eyes and smile again. 

We also started the process of introducing two new heart failure medications that will eventually replace the Milrinone that is currently being given intravenously. 

This morning his heart rate seems to be fluctuating, but the nurse says it could be a side effect of one of the new medications. 

I believe the doctors are a few beds down so hopefully they will round on him soon although I'm not sure today will be a day of big steps, my prayer is that he and I will have time to find a new normal in regards to how I can soothe and comfort him. 

This journey has certainly thrown us a curve ball in more ways than one and we are working to figure it all out. 

I was able to go home for the first time in two weeks last night and spend three precious hours with my other babies while Daddy was here with his Buddy. Please continue to pray for them as they are just wanting to be home together so badly. 

We so appreciate your prayer and concern for Luca and ask that you continue to keep him on your list!