Hannah is doing great! She saw her pediatrician on Thursday, and he said that she looked great! The only thing they advised is that we try to feed her more. She is still very light for her age, but that’s ok. Dilated Cardiomyopathy patients gain weight more slowly than other kids. She seems to be taking in a little more formula per day now. It’s so good to see her woof down everything we give her! I can remember back in December when things were so bad, when she wasn’t eating hardly anything at all. Wow, we have come a long way, and it’s all due to the grace of God. He has blessed us so much more than we could ever imagine. He has walked with us through this entire experience, giving us peace and strengthening our faith. Our child is a daily reminder that there IS a God in Heaven who looks after His children!
Lori and Hannah took a little road trip this weekend to Beaumont to visit her mimi and pawpaw. She hasn’t been to visit since November, before all this heart stuff happened. Dad is a little lonely without the giggles and smiles from his girls, but I’m getting to catch up on a bunch of stuff I needed to do (namely work). Needless to say, I’d much rather have my girls! We made sure with Hannah’s cardiologist that it was ok for her to go, and he said “sure”. He even emailed me yesterday afternoon to make sure they got there ok! It is such a blessing to be able to know your child’s doctors as well as we do. We know that God specifically placed him in our lives to take care of Hannah. I can’t say enough good things about him and his staff. You should see all the nurses’ eyes light up as soon as Hannah walks through their office door!
Hannah has started crawling!!! She only takes a few little “crawly” steps at a time, but she can definitely crawl! I guess it’s time to finish baby-proofing the house, although I know that Lori doesn’t let Hannah leave her sight for one second out of the day.
We are so blessed. I just keep thinking about our journey over these past 4 months and wonder how people get through something like this without having the assurance that God is in control. Yeah it’s hard to give Hannah her medicines. She HATES them and cries the entire time. But we just thank God every time, because we know how much worse it could be right now. Through the storms we go through every day, God strengthens us. His grace is sufficient — that’s all we need. As long as God is in control, everything is going to be fine.
I also want to thank you all again for all the prayers you’ve prayed in the last 4 months for Hannah, and ask for your continued prayers for her heart function to continue to increase. We have our next cardiology appointment on Tuesday. I don’t think they’re going to do an ECHO and measure her function, but I do know that they’re going to tweak the dosages of a few of her medicines. Please continue to pray that her heart function would continue to improve! Now that her entire heart is contracting the way it should, we are expecting the improvements in her heart function to improve even more. We pray for that day when we go to the cardiologist and they do an ECHO which shows her heart function has completely returned. We WILL see that day, because Jesus has already won the victory, and He is in control!
God has heard our prayers for Hannah once again! She had a wonderful checkup with her cardiologist on Tuesday. First of all, when they took her vitals (the first thing they always do), we were SO relieved to see that her heart rate was 118. It’s usually around 170 because she gets irritated when they do these things. Her sats (oxygen saturation % of her blood) was perfect at 100%, and her blood pressure was perfectly normal. First sigh of relief. So the doctor comes in, listens to her heart, and says she sounds great! Second sigh of relief. When they did her ECHO, her numbers were still the same as they were on Thursday (no big surprise), but at one point he said, “Wow, she’s never done THAT before…” Of course we were on the edge of our seats, in a mild panic, when he finished his sentence. “…This is good!” Third sigh of relief. Basically, this is the first time he has ever looked at her heart and seen the entire heart contract together! Back in December when all this started, it wasn’t really even beating — it looked more like a wobble or a rocking motion. When we got back from Ochsner, it looked better, but as a whole, the heart was still out of sync with itself. We believe that Tuesday was an important milestone for Hannah. Now that the heart is beating the way it should be, her ventricular function should continue to improve greatly. At the end of her echo, the doctor’s exact words were “She looks absolutely marvelous.” PRAISE GOD!!!! WOW, He is SO FAITHFUL. After several weeks of taking a few steps backwards, we were so relieved to be moving forward again. We were also relieved that we don’t have to do another holter monitor at home! Her cardiologist also suggested that we see her pediatrician sometime soon and get her caught up on her immunizations. This is another big step for Hannah and we are SO thankful that she is doing well enough to get them. It will be nice to take her out in public again! Thank you so much for your continued prayers for Hannah and our family. This is quite a roller coaster, but we know that God remains in control at all times and He is taking care of Hannah. We continue to rely fully on Him!
God is faithful- the last holter monitor results were good! We got a call from the resident who works with Hannah’s cardiologist. We were immediately excited because they always told us that if the doctor himself calls, the news is not good. But if someone else calls, that’s a good sign. So we were VERY relieved to hear a female voice on the other end of the phone.
We should probably explain first that we were dreading the results. The entire night that Hannah was wearing the monitor was very difficult. She was fussy like never before. We tried everything we knew to console her, but she cried and cried for several hours. This was so unusual that we finally took off the monitor thinking it must have been bothering her that much. She finally went to sleep, but we were worried that her heart rate had been too high for too long while she was fussy.
The resident said that her holter monitor results were great! Ha!! Hallelujah!!! Surprisingly, her heart rate NEVER even reached 200, which is a miracle in and of itself. This was especially amazing since Hannah had been SO upset. She said that the fast heart rates might have been episodes of SVT, but after the cardiologist reviewed it, he said that her rhythm looked sinus (normal) even though it was really fast. Praise God that the new medicine appears to be working! And praise Him for showing us that even at her worst, Hannah’s heart is still okay. We KNOW God wanted to reveal this to us and we are thankful that He addressed our worries. It’s as if God was saying, “Look, I want you to know that I am still in control here, okay?” Forgive us, Lord, when we get nervous, worry, and start to doubt. We know that fear is not of God. The joy of the Lord will always be our strength. He is forever faithful.
Hannah sees her regular cardiologist Tuesday at 2:30. Please pray for another successful check-up with positive feedback. And please, please pray that Hannah will take her medicine better at home. It is getting increasingly difficult to hold her still and get her to swallow everything down. She can definitely “sense” when it is medicine time and cries, pushes us away, and tries to spit everything out. We have exhausted our bag of tricks in trying to distract her, but we are totally relying on the grace of God to help her get what she needs. We are still believing for the day when she is totally off her meds and completely healed. Our miracle is still in progress.
Check out Hannah’s new photos that we recently posted!
Hannah had her appointment with her cardiologist’s partner today at 11. (Her regular cardiologist has been on vacation all week. He really deserved a break because we have kept him quite busy lately!) The checkup went very well. Her weight was up from a week ago to 14 pounds, 10 1/2 ounces. Maybe we will finally make it up to 15 pounds! She is in the third percentile for her weight, so it looks like she will be itty bitty. He ultrasound showed that her function is 13, which is a tad lower than where it was (at 15), but the cardiologist is certain that is because of the SVT episodes. They are hoping that once this new med really kicks in, her SVT will be under control which will allow her function to continue to improve. Initially, before she got SVT, they had told us it could take up to two years for her function to return. Now they are saying it could be 4-5 years. BUT, the cardiologist said today that he is NOT certain that she has the rare type of SVT (AET) that is difficult to treat. After looking at her EKGs in the hospital and in his office, he said that the shape of her P waves was consistent, which is a sign that she may have a more common arrythmia. This is GREAT news, because when she is a bit older, there is a procedure that can be done in the cath lab to fix it. Of course, this is only one cardiologist’s opinion, but we were very encouraged and are praying that he is right. We praise God for opening his eyes and proposing new possibilities.
Today our prayer focus is that her holter monitor results will show more control over her high heart rate and arrythmia. She has only been on the new med for one week, but we are praying, praying, praying that the results of this test will be MUCH better than they have been. We should know something by Tuesday when we see her regular cardiologist. That gives us ALL weekend to pray, so please join with us in believing that God is going to give us miraculous results and amaze all of us. He has been SO faithful and we give Him all the glory for what He has done and will do.
On a side note, Hannah is finally getting her first tooth!!! She turns nine months old today. 🙂
As we mentioned before, Hannah’s checkup with the cardiologist is this Thursday. Please specifically pray that her ultrasound will show that her function is 15 or better, and that her holter monitor will show MUCH better control over her heart rate and arrythmia. Continue to pray that Hannah will eat well and take her medications. We know that our God is the Great Physician- He is guiding her doctors and nurses and healing her heart. We believe that we will get over this bump in the road and be WELL on our way to total recovery. Her miracle is still in progress and God is faithful. We claim TOTAL healing over Hannah knowing that her sickness was taken care of at the cross. Thank you Jesus for that ultimate sacrifice.
Our list of prayer requests for sick children keeps getting longer and longer. We believe that children have a special way of touching hearts and bringing people closer to God. As you pray this week, please remember these precious angels:
Sam- needs healing of the brain and restoration of motor skills
Jackson- needs total healing from seizures and restoration of vision
Brea- had heart transplant and needs a financial miracle
Austin- needs total healing of the brain
We’re home! Hannah was discharged from ICU this afternoon around 1:30. The ICU doctor and the pediatric cardiology resident stopped by this morning and said she looked great. They had reviewed her heart monitor for the past 24 hours, and her heart rate seems to be more controlled. It is higher when she is active and lower when she is sleeping, just like me or you. Her average heart rate was in the 140s. It never went higher than 202, and that was when we were giving her meds. She still has periods during the day where it will go up to the 170s-180s, but that is much better than 220 or higher. So we’ll take it! Her cardiologist said we will have a better idea of how well the new med is controlling it after 30 days. This Thursday we have a checkup with him and will have to do another 24-hour holter monitor. We are specifically praying that these results WILL show MUCH more improvement. We continue to expect great things as God takes care of our little Hannah. We constantly remind ourselves that the miracle is unfolding in HIS perfect timing, not ours. The joy of the Lord will always be our strength. Spend extra time this Easter thanking Him for the greatest miracle of all- the cross.
Thursday afternoon we took Hannah to her cardiologist for a check-up. After reviewing the results of her third 24-hour holter monitor, it was obvious that she was still going in and out of SVT throughout the day. Even with more medication (Propranolol), the problem was not under control. So…we are back in ICU at OLOL getting her on a new, stronger medication called Amiodarone. This was the second choice med because there are some potential side effects for the future, but there is also a 30-35% chance that she could outgrow the arrythmia within the next year. This is our prayer! The specific type of arrythmia that she has is kind of difficult to control because it is so sporadic. There is a chance they could treat it in the cath lab when she is much older, but she is way too little right now. We are supposed to be discharged Saturday morning, and so far she has handled the new med just fine. An adverse reaction would be a very low heart rate, and she has definitely not had that problem. The highest her heart rate has been for the majority of our stay was 198. We are okay as long as it doesn’t go over 200 and stay that high for about 20 minutes. As usual, none of this phases Hannah. She is smiling and playing and enjoying all the attention. We are so blessed that she is not in pain. We thank God for continuing to watch over her, getting her the care she needs just when she needs it. He has always been faithful and He still is. Although we can’t see the bigger picture, He can, and we trust Him that this is what she needs to get better.
We received the results of Hannah’s second 24-hour holter monitor test on Friday. She still had several episodes of a high heart rate in the 200s and some irregular rhythms. BUT her cardiologist said it was much more controlled than last time and he was pleased to see that. He still went up on her Propranolol another tenth of a milliliter, so she is now taking 0.5 mL three times a day. We have to repeat the holter monitor for the third time this Thursday. We are praying that this will be the last time she’ll have to wear all those stickers and wires. Not much fun for an eight month old- especially at night. She can’t sleep! We are also praying that the results will show even more control so she will not need any more medicine. On that note, however, Hannah has done EXCELLENT taking all her meds lately. It definitely takes the two of us, but she basically just opens her mouth and swallows, as long as our entertainment is satisfactory! Greg does a great job of making her smile and giggle, so the whole experience is much less stressful. As always, thank you for continuing to pray for complete healing of her heart, and that this new condition does NOT compromise her heart’s ability to regain more function.
We wanted to mention that Brea received her brand new heart this week!! She had her transplant surgery on Friday night and is doing very well. Praise God for science! The human body is truly amazing because we have an awesome Creator who designed it that way.
Ezekiel 36:26 “I will give you a new heart and a new spirit.”