Hannah is a beautiful 4 yr. old girl from the Philippines who is suffering from Tetralogy of Fallot (TOF), a cardiac anomaly that refers to a combination of four related heart defects that commonly occur together. The four defects include Pulmonary stenosis, Ventricular septal defect / VSD, Overriding aorta, and Right ventricular hypertrophy. TOF affects about 5 out of every 10,000 births. It is very treatable and about 95% of babies are repaired within the first year of life instead of the 4th year of life.
Hannah has suffered through years of not being able to run and play like a normal child because of low oxygen. This is the same defect that Carly, our oldest, was born with. She was repaired 20 years ago on February 11 and is doing very well but could eventually need a valve replacement. 10 years previous to Carly’s repair, TOF kids did die from that defect, but in this day and age, it’s unacceptable that Hannah would die from this defect. Thanks to everyone’s help she will not! I know it is just one child we are helping but it’s one child’s life we are saving!!!
On Sunday, July 20, Hannah and her mother Pacifica arrived at CVG and were greeted by Aubrey’s brother, Spencer and Aubrey’s grandparents, George and Nancy Frondorf. Also channel 5 NBC reporter Sandra Ali was there to let the world see our little Hannah.
Her first night at the Ronald McDonald House was a little scary because of the huge and noisy storm that night. Hannah and her mom have been taking walks and keeping busy but this is a long week for them with nothing medical to do.
On Wednesday, 7/30 Hannah will get an echogram and whatever other tests she will need for her surgery, scheduled for August 5th. Please join us in our prayers for Hannah.
Saturday, July 26 Hannah joined us at the Ronald McDonald Dinner – “It’s Time to Monkey Around” and had a great time. She finally smiled when Aubrey’s grandmother Nancy Frondorf picked her up at the RMH dinner. That’s the first time we’ve seen her smile! She’s probably scared and definitely cold…she’s just not used to air conditioning.
Wednesday, July 30 Hannah met with her surgeon and he did a wonderful job of thoroughly explaining her heart defect and how he was going to repair her. Then she got a very extensive echocardiogram and met with her cardiologist Dr. James Cnota after that. That was an exhausting day for Hannah and her mom but the Heart Center staff made them feel as comfortable as possible.
Monday, August 4 All of Hannah’s pre-op testing was completed and Hannah and Pacita were given the details of her surgery. They met with her anesthesiologist and went over the plan of action for her surgery. Everything is looking great for tomorrow!
Tuesday and Wednesday, August 5,6 Hannah left for the operating room about 7:30am yesterday(Tuesday) morning and got to take her sleepy time meds before going on her journey…and she did great! Mom got to kiss her good luck outside of the operating room. Jerry took Pacita to get some breakfast while Carly and I were off to Carly’s cardiologist appointment. Jerry was asking Pacita about the hospital in the Philippines where she works and she was telling him that part of her nursing job is to get rid of the snakes that slither in through the windows or come up through the pipes and even walk in through the front doors! Jerry was joking with her and calling her the Steve Irwin of the Philippines! She was laughing and it was great to get her mind off of Hannah in the OR!
The operation took 5 hours and periodically Sue, the nurse practitioner, would come out and update us on Hannah’s condition letting us know that she was on the heart lung machine, that everything was going well and when her operation was finished.
After the operation we went into a conference room and her surgeon Dr. Eghtesady explained to us what had been done to Hannah. He said that she did well getting onto the bypass machine. He also explained how her pulmonary valve was probably the worst case he had ever seen. It only had a pinpoint opening and it was difficult to open up but he was successful in doing so. This was a huge accomplishment! Hannah was a very lucky little girl to have lived this long with this condition and she very definitely needed this surgery! No wonder she didn’t smile!!!
It was going to take about an hour to get her hooked up to all of her lines in her room after surgery so we went down to get a bite to eat. Pacita was breathing a little easier knowing that Hannah was repaired!
When we got to go in and see her, oh my goodness – she had PINK lips!!! They weren’t blue anymore!!! Before surgery, Hannah’s pulsox readings were horrible and after surgery, she was satting 98 with 100 being perfect – what a blessing this is!
We stayed with Hannah for a while but then Pacita wanted to leave to buy a phone card so that she could call home and let her family know that Hannah survived the surgery. We also had to get a prescription filled for Pacita because she is a diabetic and did not bring her medicine with her which meant she had not taken her prescription for over two weeks. I asked her if she could feel the results of not taking her medicine and she said that yes she could – she can’t see and the interpreter explained that everything is hazy to her. I wish she had spoken up immediately to say she needed her medication but I’m hoping better late then never.
Pacita speaks and understands English but we had an interpreter come anyway and I’m glad we did. Rachelle, her interpreter, has been wonderful and has gone above and beyond her call to duty. She volunteered to take Pacita to get her phone card for her and then take her back to Ronald McDonald House so that she could get something to eat and especially to take a nap. Pacita looked so tired!
Their night before surgery had been interrupted at 3:30am when the fire alarm in their room at Ronald McDonald started going off and the fireman actually had to come into their room to check it.
About a half hour after I got home Rachelle called me to say that the hospital called Pacita and that Hannah’s blood pressure was dropping and they were probably going to take her to the cath lab. I said I’m sure Pacita is very scared and that I would go back to the hospital and sit with her while this was being done.
When I got there Pacita was crying because she was scared. I tried to calm her fears and explain what the doctors had told us. They think that Hannah could have some extra collaterals that helped her get oxygen before the surgery but since she is repaired now, she doesn’t need these anymore. They gave her a big amount of blood to help with her pressures but they couldn’t quite get them stabilized and so they took her to the cath lab to check on this. Hannah has never had a cath before so this wasn’t a bad thing at all but Pacita was still scared.
I took Pacita down to the cafeteria and got her some dinner and had to coax her to take her prescription that we just had filled and then went back to Hannah’s room. They were ready to take her to the cath lab shortly after that, around 8pm.
It took 5 members of the Heart Center to move Hannah in her bed to the cath lab with her trees of meds. This would be unnerving for any parent to experience but very necessary for them to be a part of. I kept on explaining to Pacita that this is a good thing – that they are being proactive, but in her small hospital back home, she is not used to all of the machines and the number of specialists working on Hannah. I told her that Hannah was in the best place possible for getting her heart fixed.
Dr. Beekman came out after the cath was over and explained to us that Hannah’s repair looks wonderful and that he did not find any collaterals which is a good thing but also a bad thing too. Had he found them, he could have coiled them off which would fix the pressure problem but the bad thing is that they still don’t know why her pressure was not being stabilized.
Pacita was really looking tired by this point and Dr. Beekman and I strongly suggested that she go back to Ronald McDonald to get some sleep but Pacita had her mind made up that she didn’t want to leave Hannah. We kept on reinforcing that it is so important for Pacita to stay healthy and to take care of herself which meant taking her meds regularly, eating and sleeping enough and if she’s not healthy, then she won’t have the strength to take care of Hannah. After much convincing, and Pacita seeing that Hannah looked good after the cath, she decided to go back to Ronald McDonald House.
When Pacita arrived in Cincinnati, she contacted a friend with whom she went to high school and hadn’t seen in 25 years. Her friend is a man from the Philippines and married to a Philippine women who actually speaks Pacita’s dialect and so they have been visiting with Hannah and Pacita which has got to be so comforting for Pacita and Hannah to converse in their native language. They are a beautiful couple who are such wonderful people. They stopped at the hospital while Hannah was in the cath lab which was great because it kept Pacita occupied and it was also great for me because I got to meet them and hear how his travels working for Procter and Gamble have taken them to Japan, China and back to the United States. After our visit, we all left and I took Pacita back to RMH and told her I hope she gets some sleep.
I checked this morning (Wednesday) and Hannah is going to be pretty much just resting today. They are keeping her sedated and she will not be extubated (getting off the ventilator) today. It’s a day of rest. Her nurse said that Pacita arrived early this morning and after Hannah was given more sedation, Pacita decided to take a nap so hopefully she is sleeping now. Maybe both Hannah and Pacita will have a restful day!
I will keep you updated on Hannah’s progress and I greatly appreciate your prayers and support for Hannah and our Healing the World’s Hearts Program.
Thursday and Friday, August 7 and 8
On Thursday morning when I checked with Hannah’s nurse. He said the game plan for the day was to let her rest again. I asked if he thought she would be extubated (have the breathing tube removed) and he said no. When I called later in the afternoon, she did get extubated so she must have progressed better than expected. When I arrived at the hospital after work, Hannah’s lungs started filling up with fluid rather quickly so they had to re-intubate her which was a whole new set-up but it was needed! Again, she looked peaceful laying on that big bed.
Pacita kept herself busy all day with a loaned laptop from the Child Life Department and she got the biggest smile on her face when she told me that she and Antonio could talk back and forth through the computer. I asked if they could see each other but they couldn’t since the laptop at the hospital had no webcam attached to it but they could still hear each other. While Hannah was off the vent and somewhat awake, she held the computer up for her to hear her Papa as well and she knew Hannah liked that!
I asked Pacita if she had eaten some lunch and she said no and so I suggested that we go down and get some dinner. She said no at first but I talked her into going because she needs to take care of herself. I do have to say that Pacita looked much more rested and having that computer to use today was huge. I requested that Child Life come back tomorrow and take pictures of Hannah with the digital camera that Aubrey’s Foundation had given to the Heart Center at one of our Holiday Parties. This way, her Papa and family back home can see what Hannah looks like hooked up to all of her equipment in the room. It’s very important for them to see what she is going through because they have a thousand questions in their minds I’m sure and what’s that phrase… a picture tells a thousand words!
After dinner, Pacita wanted to go to Krogers to get some more phone cards so that she could text and call home. She is constantly going through these cards to stay connected to her family and friends. On Friday morning, the game plan with the doctors is for Hannah to rest and for them to try to pull more fluid off of her lungs. She will not be extubated today but hopefully tomorrow.
It is kind of unusual that she keeps accumulating this fluid. The docs really don’t know why but it could be just Hannah’s way of saying she’s really, really mad at what has happened to her heart and it just may take her a little longer to adjust than what was hoped for. (Heck with Aubrey, we can’t tell you the number of times we heard the words – we are cautiously optimistic, we have never seen this before, this shouldn’t work but it does for Aubrey – sometimes with heart kids, their hearts beat to a different drummer – literally! So we’ll be patient with Hannah and take it one day at a time!)
Saturday, August 9
Hannah was supposed to get extubated today but that didn’t happen. She needed another day to rest and to be weaned down on her meds. It was kind of a lazy day for Hannah but not for the unit. When I arrived at the hospital, the waiting room was packed and they even had a surgery in progress. I visited for awhile and then Pacita had a couple of Philippine visitors from a church in Clifton and so I left so they could visit. When I was passing the information desk on the first floor I overheard a gentleman asking what room Hannah Borres was in, so I stopped and talked with him. He was from the same church and he decided to visit Hannah because his church was asking for prayers for Hannah. Pacita told me later that this gentleman spoke her language so that was good that they could converse in her native tongue.
Sunday, August 10
Hannah was doing well enough so they were able to get her off the ventilator. She really couldn’t talk much at first because that tube usually irritates the throat but she didn’t miss a move that anyone made. Her eyes were watching everything including Dora the Explorer on TV. She got a bath and that had to make her feel much better! She got to hear her Papa again through the computer and she really likes that! It was interesting to watch Hannah explore everything around her including her own hands connected to so much equipment. With her druggy eyes, she could see the different lines in her and would just stare at them before her arm got tired from her lifting it. Her little toenails actually look like they have pink polish on them now. Before her operation they always had a blue cast over them. She is always trying to get her covers off because she doesn’t like her feet covered.
Pacita stayed with Hannah throughout the night last night since Hannah was off the ventilator. She got to feed her some biscuits (cookies) and some apple juice. I think that was very good for both of them.
Monday, August 11
The plan for today is to take her central line out and move Hannah to the step-down unit. It’s amazing the difference a couple of days can make!
Monday, August 18
Hannah was released from the hospital to the Ronald McDonald House on Monday, August 18. She and her mom Pacita were supposed to go home on August 24th but Dr. Eghtesady did not feel comfortable with Hannah going so far away from Cincinnati Children’s so soon. They are very blessed that they can stay at the Ronald McDonald House where there are so many activities to keep them busy and they are so close to Children’s for follow-up testing and doctor visits.
After a rather complicated recovery period, Hannah will be able to go home on September 14 and is expected to live a long and healthy life!
Thursday, September 11
Finally, Hannah and her Mother, Pacita, will be going home this Sunday morning! They are so excited about this and I would love to say their family’s reaction to how wonderful Hannah looks. Hannah has gained over 3 pounds since she has been here and has grown an inch!!! That is amazing but such a great sign that she is healing and starting to enjoy life as a “normal” child. It’s amazing what the right blood and oxygen mix can do for your body!!! Even Hannah has realized how much better she feels. In one of her conversations with her father, Hannah told him, “Papa, you don’t have to carry me anymore, I can walk now!” And she is walking and even running now!
We want to thank all of you who have had a part in Hannah’s repair and in helping to make Hannah’s and Pacita’s stay a comfortable one here in Cincinnati. For everyone who sent get well cards, for the many phone cards they received, and the many other gifts of kindness that you have shown, I know that Pacita and Hannah are extremely grateful for your generosity.
It’s because of our working with dedicated surgeons like Dr. Manning and Dr. Eghtesady and all of the skilled staff at Cincinnati Children’s, Debby and Carol at Delta Airlines for their support, all the dedicated staff and volunteers at the Ronald McDonald House and all of YOUR support that our Healing the World’s Hearts Program can bring children from within the United States and from around the world to Cincinnati Children’s for a life saving operation. In Hannah’s case, her operation definitely SAVED HER LIFE!