Not long ago I posted a blog about a painting I made that contained the phrase “Believe in Miracles.”
Alida was originally scheduled for the Glenn on 6/2/14. It got postponed due to her being quite ill; ill enough that she was hospitalized for a week on two separate occasions. God works in mysterious and amazing ways. Because of her illness and postponed surgery, we may avoid another open heart surgery all together.
The plan is for us to go home today! Since she is doing so well, they want to give her more time to grow and recover from her recent virus that may still be hindering her lungs. Then we will come back for another cath. They will close her ASD and shunt during the cath. The timeframe is very much up in the air. As always, we really have to listen to Alida. If she is doing well and growing, it may not be for another year or it could be in 8 weeks. We really don’t know. When it does happen, it’s great that they are able to do those things with a cath procedure versus open heart. Then they will monitor her closely over the next 12-24 hours and see if she can tolerate the closures and see what her O2 sats do. If she doesn’t tolerate it, then she will still need the Glenn. The other encouraging news from today is that given how well she is doing and the growth of her right ventricle, it’s very likely that if she needs the Glenn, she won’t need the Fontan a few years later.
It’s really been a very encouraging and miraculous couple of days. We cannot express how much we appreciate everyone’s thoughts and prayers! This also means we will not be in the hospital for the girls’ one year birthday on Thursday. It’s been one heck of a year but this is such a positive note to end on.
Though she be but little, she is fierce!
Alida is all settled in the CICU. They were keeping her pretty sedated as her cath site in her right groin was spasming and they didn’t want her moving. They put her on heparin to prevent clotting at the site.
Dr. Forrester showed me the pictures from the cath. It was quite interesting, although I couldn’t see all of the things she was pointing out with her skilled eye. Cath pictures look a lot like moving X-rays.
Brief summary of the things she said/observed (diagram below maybe helpful to refer to):
-The size of her right ventricle actually looks pretty good. It has shown growth.
-The limiting factor is her tricuspid valve between her right atrium and right ventricle. Even though her right ventricle is big enough and strong enough, the tricuspid valve isn’t allowing the blood to flow into the right ventricle. It functions properly, but isn’t big enough to allow adequate blood flow.
-Her body isn’t using the shunt very much. It’s not vital to her pulmonary blood flow at this time.
-As blood flows into her right atrium and tries to go through the tricuspid valve into her right ventricle, there is a build up of pressure which causes the blood to go through the ASD into the left atrium. It then gets pumped back out to the body unoxygenated. That is why her sats drop when she vomits, cries, etc.
-We aren’t sure what the plan is yet. Dr. Forrester isn’t sure if the Glenn will be the decided route. They may try to go back in via cath and close off both the shunt and the ASD. They will then watch the pressures of her tricuspid valve as well as her sats. If her sats are okay, then we likely avoid an open heart surgery. If they close the ASD and shunt and her sats drop, then she needs the Glenn. We aren’t sure if they would do this now or send us home and have us come back.
-Her pulmonary arteries look great but they do suspect her lungs are still a factor in her complex puzzle. They don’t know to what extent and if it’s from her premature lung disease or her recent cold.
This is our understanding at this time. We will know more after all of the doctors discuss, including the surgeon, Dr. Mitchell, and our cardiologist, Dr. Okorie. We may not know more until tomorrow.
But we did get into RMH! We are all settled in after a chaotic few hours of Alida getting settled into the CICU, packing up the hotel, unpacking into RMH, and trying to get Lucie to nap in the middle of everything. Hah.
The cath RN was wrong during the first update. They got the artery cath in her right groin successfully. The vein cath was unsuccessful in her right groin and her left groin so they entered through the right side of her neck. She will probably be pretty sore from all of the attempts. Heart babies’ veins and arteries are challenging for any kind of poke (blood draws, IV, cath) as we have seen time and time again. It never gets easier to hear and think about.
Now that they are in, they are checking out the pressures in her pulmonary arteries, right ventricle, veins, and shunt. The last update was that her pulmonary artery pressures look great. This means that if she has the Glenn, (they disconnect the superior vena cava from the heart and attach it directly to the pulmonary artery so the blood bypasses the heart and goes directly to the lungs) her pulmonary arteries are in a good state to accept the increased blood flow. They are also going to put a balloon in her ASD (a hole between the atriums) to test the pressures in her heart when she cannot use the ASD to shunt blood across her atriums (fully confused yet?). We aren’t sure if they are considering repairing the ASD during Wednesday’s surgery. The RN told me overall her pressures are looking very good and there is a possibility of a two ventricle repair versus a one ventricle repair (Glenn/Fontan). We aren’t sure what a two ventricle repair entails but it sounds like it is a preferable path. She should be done with her cath by about 12:30pm and then it will take them some time to get her set up in the CICU before we can see her.
Thank you again for all of your thoughts and prayers!
We headed down to Milwaukee at 2pm yesterday. We stopped part way and gave Lucie a bottle. Alida was quiet and smiley the whole way down. Lucie, not so much. Being confined in a car seat for 3 hours isn’t really her thing these days.
Lucie was super cranked up at the hotel. We wrestled with her in bed for awhile to expend some energy. Once we put her in the pack n play, she settled down quicker than we expected. We were up and on our way to the hospital by 6am. Alida was very well behaved during the check in process. Brian took Lucie to the cafeteria to eat.
I am now in the waiting room and Brian is at the hotel with Lucie so she can nap. The first update from the cath lab is that they got the IV in on the first try. They got a cath in successfully into a vein in the right groin. The artery was not successful on the right, but they did get in on the left. They anticipate it will take about 3 hours total from the start.
We have also met two other families today that we have connected with through Facebook groups. It’s nice to make connections with other heart families. Lots of prayers and thoughts going out to all of them! Thank you to everyone for your ongoing thoughts and prayers. We are hoping the cath results in good news. We will keep everyone posted as often as possible.
Alida was off oxygen from 6/11-6/26. It was a wonderful two weeks of freedom. Then she got another cold and had to go back on oxygen. Her cold wasn’t horrible and she is better now, but she remains on oxygen. We have tried to wean her off several times and she just isn’t tolerating it. It’s hard to say why. It’s possible that it’s because of her heart now, not her lungs. She will sit at 90-92 with 1/4L of oxygen and then once we take her off she drops down to 77-79.
Alida had her pre op appointment with cardiologist Dr. Okorie yesterday. He did a chest x-ray and some blood work. He thinks her lungs sound fine and he doesn’t anticipate the recent illness will have an effect on the ability to proceed with surgery. Her chest X-ray showed some chronic wetness near her heart but her peripheral lungs looked good. Her liver functions were good which means she isn’t showing signs of an infection (they were elevated in April/May when she was very ill). Her BNP, the main heart failure indicator was elevated. Under 100 is normal, 100-200 is mild heart failure. Hers was 128. Dr. Okorie said her shunt is still open. He doesn’t think we are at risk to have it clot off in the immediate future, but he also doesn’t want to put the Glenn off. They will discuss her again during the surgical round table on Thursday and Dr. Okorie will call me to let me know how it went. Nothing is expected to change. They will make any final surgical decisions after Monday’s heart cath.
We head down to Milwaukee on Sunday. We are on the waiting list for the Ronald McDonald House. As the time draws closer, we are anxious and our hearts are heavy.
But to end on a light note, Alida is planning on opening a baby yoga studio.
Brian and I started this blog a year ago. It’s initial intent was to keep everyone updated as to how the pregnancy was going as well as be an outlet for Brian and I. We both enjoy writing and it was a way to express feelings, challenges and joys. The blog has grown into a beautiful account of the girls lives that we hope to share with them someday.
With the blog being public, it can also be read by complete strangers, some of which are going through similar experiences and can find comfort, hope, and companionship in knowing they aren’t alone. A couple weeks ago, I began communicating with Stacy. Her youngest daughter is having heart surgery this summer. She also has two other daughters. The older girls were making what they call “loveys” for their younger sister’s hospital stay. Loveys are little blankets that also have a pocket for their stuffed animals. Well the girls decided Alida and Lucie needed loveys too. So with Stacy’s help, they made blankets for our girls and sent them to us with homemade cards and a beautifully decorated envelope. Here are pictures of Stacy’s girls with the loveys:
Here is Alida with her lovey (I couldn’t get Lucie to hold still long enough to get a picture of her with her lovey):
The girls’ kind hearts and generosity touched us deeply. Them wanting to make blankets for other girls that they have never met before is a beautiful act of kindness. There is a chance we will cross paths in Milwaukee and get to meet and thank them in person.
We always talk about how blessed we are to have such amazing and supportive family and friends. We have now seen the ability of strangers to touch our lives in ways we will never forget. With more loveys in the world, the future is very bright.
Since shedding the oxygen, Alida has really been able to share her personality with us. Lucie is a total goofball, but now Ali is showing us her sense of humor too. We were able to capture a precious minute and a half.