ALEXANDRIA KAHEALANI CUMMINGS

Update posted by Jgiampaolo On Nov 28, 2013

Hi everyone,

Sorry it's been awhile since the last update, we have just basically been waiting at home for the surgery, which finally happened yesterday.  Alexandria went in at 8am yesterday, 11/27, and surgery last 13 hours.  By far the longest wait in our lives.  She is currently in the CVICU (Cardiovascular Intensive Care Unit) and is pretty stable for the most part.  She is hooked up to many IVs as well.  She has a Central Line, which goes into her jugular and straight to her heart, an arterial line, as well as many peripheral IVs.  She has 3 chest tubes for drainage, a Foley catheter, and also has what are called pacing wires.  The pacing wires are directly inserted into the heart and can change the hearts rhythm if necessary.  Alexandria is currently still completely sedated, and fully dependent on the ventilator to breathe.  She is currently receiving 11 different medications to help support her heart and lungs, as well as pain medications.  

Twice this morning they have slowly tried to ween her off sedation without any luck.  She becomes agitated and her blood pressures and heart rate increase to a dangerous level.  We are hoping to be weened off and off the ventilator by Sunday, but its hard to say.  She is at a great risk for pulmonary hypertension as well as other things, so drs are taking their time, which is great.  When we know more we will update.  For now, please keep praying.  Thank you so much for your support.

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Update posted by Jgiampaolo On Jul 04, 2013
Happy 4th of July everyone! Sorry it took so long to update, but we have had an extremely busy week. We welcomed our beautiful girl into our world on Saturday, July 29th at 2:49AM. She weighed in at 6lbs 4oz, and was 18.75 inches long. I ended up being induced early at 37 weeks due to an additional complication called Cholestasis (a pregnancy induced liver disorder). She came out screaming and full of life, but was immediately rushed to the NICU (neonatal intensive care unit). She was hooked up to every machine under the sun, but was doing surprisingly well, so 6 hours after birth, she was taken off the oxygen. It is now her 5th day of life, and everyone is impressed with how well she is doing, considering her diagnosis. She has undergone an angiogram, and cardiac catheterization, which all have confirmed the diagnosis of Tetrology of Fallot with Pulmonary Atresia and MAPCAS. Since she's doing so well right now, they have decided to postpone surgery until September, giving her time to grow to ensure a speedier recovery. She looks like a healthy baby, but you can tell she has cardiac issues because sometimes when she's upset, she has what is called a tet spell and turns blue. It's quite scary. Right now, she is undergoing phototherapy for jaundice (common in all newborns), and started a medication that she will continue called Lasix. It's a diuretic that will help make sure she has no fluid build up. She is truly a blessing, and we are so grateful for her. Even considering the long road we still have ahead of us, I wouldn't change a single thing. Thank you all so much for your thoughts and prayers, they are greatly appreciated.
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Update posted by Jgiampaolo On May 10, 2013
Hi everyone, Yesterday was quite the eventful day for Liko and I. We went down to Luciele Packard Children's Hospital at Stanford University for four different appointments! First, we met with Dr. Frank Hanley in the morning. I have heard other doctors describe him literally as "God" and that this man walks on water in the surgical world. That is definitely true, although he was extremely warm and down to earth, you would never know what extrodinary things he does. Dr. Hanley is a world-renowned pediatric cardiothoracic surgeon who pioneered the surgery we happen to need for our daughter. Meeting with him was such a relief. I know she will be in the most capable hands. He has performed this surgery over 800 times--with children from all over the world coming to him. Although the meeting went great, we still won't know the exact surgical plan until she is born and he can take a better look. Second, we met with Dr. Davis, the Director of Neonatal and Developmental Medicine. She basically went over everything we could expect after Alexandria is born, during her stay in the Neonatal Intensive Care Unit (NICU). We also took a tour of the Labor & Delivery Unit, and the NICU as well. It was amazing how many babies are actually there. On an average day, the NICU at Stanford hosts over 40 babies. Meeting with Dr. Davis was extremely informative, and really made this more of a reality for us. Next, we had a general anatomy ultrasound. This was just to make sure she is growing properly and along with schedule. They also took a look to see if they could notice any physical signs of any other abnormality. Thankfully, we found out she is growing just as she should be, weighing 3.2lbs already! Also, there was no physical signs of any additional abnormality, although we really won't know that for sure until she is born. Lastly, we met with my new high-risk OB, Dr. Myelin. She was wonderful, we talked for awhile as she got to know my family history, and decided how we would proceed. We decided I would continue to see both Dr. Jimenez here in Santa Rosa, and she in Stanford every other week. Which means a ton of trips back and forth until I have to move down to Palo Alto, around 4 weeks before my due date. She also referred me to an adult cardiologist at Stanford, just as precaution. We left feeling slightly overwhelmed, but extremely confident in the care that our daughter, as well as myself, will receive. Thank you so much for following our story, and especially for your thoughts and prayers. It means more than we can begin to describe. Love, Mallorie & Liko
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Update posted by Jgiampaolo On Apr 27, 2013
Hi everyone! Today we had a fetal echocardiogram (ultrasound of Alexandria's heart) with our Pediatric Cardiologist, Dr. Sarina Behera, from San Francisco. This appointment was basically a follow-up from our first echo with Dr. Behera, to check and see if we could get a better look at Allie's heart since she has grown. The heart develops around 8 weeks during pregnancy, so we weren't really expecting anything new in terms of development, but in visibility. Dr. Behera did notice a tiny, tiny amount of blood flow coming out of the pulmonary valve, but nothing significant. This doesn't really change our original diagnosis because she would have to have a conduit put in place regardless. (Due to basically having no blood flowing from it). We won't really know much more until she is born and has a cardiac catheterization performed. The cardiac catheterization will provide clear pictures for the surgical team to put together an exact plan, instead of relying on an ultrasound. Dr. Behera did notice a significant hole in between the upper chambers of the heart, in addition to the one already present in between the ventricles (lower part of heart). On another note, we are having a really hard time with my insurance, who does not want to send us to Stanford. Although, we do have two amazing doctors (Dr. Jimenez and Dr. Behera) working in our corner to still try and make this happen, as Stanford has the best surgeon in the world to correct Alexandria's condition. Please say an extra prayer for us, I know we will end up in the hands were supposed to. Thank you so much for taking time to stay updated with our family :) With love, Mallorie & Liko
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Update posted by Jgiampaolo On Apr 16, 2013
Hi everyone, Thank you so much for taking the time to read our page. We can't express how much the support means to our family. Today, I had a routine appointment with my regular Doctor, Dr. Jimenez. I haven't been feeling too great lately, so he decided to run a bunch of tests (just as precaution), to make sure everything is fine. We are lucky to have an amazing doctor, he is extremely thorough and really takes the extra time we need. He listened to Alexandria's heartbeat, and it sounded great! Normal, actually. It's funny how these kinds of serious problems with babies who are still in utero are often seen, and not heard. So all in all, everything went great! We see Dr. Behera from San Francisco again next week for another echocardiogram (ultrasound of the baby's heart). We will update you again then! Thank you again for all your love and continued support! Love, Mallorie and Liko
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We a praying and sending positive thoughts for your journey with your beautiful little angel

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Sending positive thoughts and prayers!

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All the best with the little one!

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Ward, Heart and prayer with your family. I wish there were a word I could reach for. I thought of you just recently when a Chicago song was playing. We don't know each other very well at all except a school campus and mutual friends a long time ago. But I will think of you and your family daily - in prayer and in love for your dear child. John Pratt Booker

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