Aoife's Story

[Julip]

Most of this is taken from my journal. It was written as I was going through all of it. it is not the most well-written piece of work that I have done, but it is too emotional of a story for me to worry about that now lol. I am publishing it here to share what we went through with my family and friends.

Aoife’s Story

The Pregnancy:

It was September, 2008. I was 8 months pregnant with my 3rd child. Everyone was so excited about the upcoming birth of the baby. I was on my way to Savannah for genetic counseling. When my ob/gyn informed me that all women over 35 had to undergo genetic counseling, I was disgruntled. Why should I have to do this? What a waste of time. I had given birth to two healthy babies in the past…surely this one would be no different. I didn’t want to go; I didn’t want to make the 40 minute drive with my neighbor. I was mad because Nathan had to work that day and I did not want to do this alone.

I arrive at the office and am taken to a room for an in depth ultrasound. I was certain it would be routine…after all over the past 8 months I had undergone quite a few of these. The technician covers my belly in warm nasty goo and begins to move the magic wand that sees through skin all over my belly. There’s the baby’s little head, covered in hair. Oh look! She yawned…hadn’t seen that one before. Tears well up in my eyes as they do every time I get an ultrasound, it always amazes me when I see my baby inside my stomach. Then the tech stops what she is doing. “I am concerned with the baby’s heart; I need to get the doctor.” I’m thinking “what? This can’t be right.” Surely it was a mistake, or something really minor. I begin to cry a bit harder, but I am still not convinced that there is a serious problem. Bad things like that happen to other people, not me…right?

Dr. Bivens comes in and takes a look at what the tech sees. He tells me the baby’s heart looks too small, and that I need to go upstairs to pediatric cardiology for a consultation. As I almost run out the door and to the elevators, I begin to break down. I am wishing Nathan was there with me. Tears are streaming down my face and I cannot find the words to explain to my neighbor what the problem is.
Upstairs I meet Dr. Long the pediatric cardiologist. We are sitting in a tiny consultation room. He shows me some diagrams of what a normal heart should like, and then shows me my baby’s heart. Oh the difference! Her left ventricle is elongated and smaller than it should be. He said the best diagnosis he can give from only seeing her heart in my belly is hypoplastic left heart syndrome. He says if this is the case I will have two options. A series of three surgeries, that may or may not work, or something he called compassionate care. I call it murder. Compassionate care is where you do nothing and just enjoy your time with baby until her heart gives up and she passes on. Obviously, for me there was only one option. He said I will have to give birth in either Savannah or Atlanta, and I would have to go up to Atlanta for further tests before she is born.

I cried and couldn’t speak the entire ride home. Once there I had to explain to Nathan, Nadia, and Caoilfhionn what I had learned. They were stunned. Luckily Caoilfhionn was too young to understand it all. Nadia held it together pretty well overall, but the news affected her pretty badly. Nathan and I discussed how to handle the news, or I should say we tried to. There is really no way to prepare for that kind of news.

A week later we went up to Atlanta. The doctors there made us feel a bit better. They said if it is hypoplastic left heart syndrome it is a mild case. She may not need surgery after all. They told me I could give birth in Savannah, but warned me that if the cardiologists there deemed it necessary, they would airlift her to Atlanta the day of her birth for surgery. She would be alone until I got released and could drive up to be with her.

All of us spent a lot of time stressing and dealing with the news in our own ways. Me, well I cried a lot. I didn’t know if my baby would live or die. I started a journal for the baby, both to help me deal with my emotions and to hopefully show the baby someday when she was older.

Birth Day

October 21st 2008. The doctors had decided to induce my labor. They wanted to make sure that I got to the hospital in time (since I have about 2 hour labors) and they wanted to schedule it for a time when her surgeons and cardiologists would be working, just in case she needed them. I was very quiet the whole ride up to Savannah. I was terrified. I had been so excited about this day but now I almost couldn’t handle it. It was hard, because although I wanted my baby to come into this world, I knew as long as she was still inside me she would be alive. I couldn’t say for sure if that would be the case once she came out. I was so scared for her. She was inside me, safe and happy, and soon she would be born to a cold strange world. She would be afraid and uncomfortable under normal circumstances, but she may have to experience surgery as well.

I arrived at the hospital and it all moved so fast. The put me in the room, and began the induction. I tried to tell them that given my past history, I probably wouldn’t need the 2nd part of the induction, and I wouldn’t have time to get an epidural once labor started. They never believe me… 3:30 am my labor starts. 5:08 Oct 22nd Aoife is born. They place her in my arms and I actually get to hold her. I had imagined giving birth and having her whisked away from me for surgery before I even got to meet her. She was beautiful and tiny. The doctors then shock us…they say she looks fine and we can take her home in a few days. I couldn’t believe it; it was too good to be true. Well yeah…it was. Once the cardiologist examined her it was a different story. I could go to the CICU and visit her real quick, but then she would be sent to Atlanta. Surgery was scheduled for Oct 24th. My mom had flown in from Arizona to help with the kids and be there for us, so she, Nadia, and Caoilfhionn came to the CICU with Nathan and I to see the new baby before she left us.

It was killing me to think Aoife would be in Atlanta all alone for a few days. Not to mention my anxiety over the upcoming surgery. I would be released from the hospital the next day, where I would have just enough time to run home and pack, kiss the kids and head up to Atlanta.

Surgery

After my release and short visit with my other children I pack a quick bag and get back in the car for the 5 hour drive to Atlanta. Hard to believe only yesterday I had given birth. Not to mention it felt strange and wrong to drive home from the hospital without the baby. We arrive in Atlanta at about 2 am. We spent the night in a special room for families inside the hospital. 3 hours later we are awakened and brought to see our little baby before they whisk her off for surgery. I saw little Aoife lying in the hospital crib. I was overwhelmed with emotion. I cried and kissed her and told her to stay tough and that I loved her. I didn’t know if she would survive or if this would be the last time I ever saw her. The nurse gave me a little teddy bear to hug while I waited. (I still have the bear)

The nurses tell us that the surgery should take 4 hours and they will call every hour with an update. We go sit in a room with other families, all of us terrified and sad. Various people come to talk to us, other families, social workers (who were great, they made the whole ordeal less frightening and hooked us up with resources like the Ronald McDonald House), Doctors and nurses. The phone calls came, 1, 2 , 3 ,4 …Four hours…why was she still in there? My biggest fear was that I would see the surgeon come out and lead us to the little room in the corner where bad news was delivered. Luckily, the phone calls kept coming… 5, 6 and finally 7. Seven hours of open heart surgery on a heart the size of a walnut. She made it through!

Dr. Kirshbaum was Aoife’s surgeon. It took all I had to not grab him and hug him for saving my baby’s life. He told us the good news: she did well and was in recovery, and he had repaired 2 of 4 problems he found. The bad news was she had Shone’s Complex, a series of 4 problems that would follower her throughout her life.

We made our way to the CICU to look at our little baby. Nothing could have prepared us for what we saw there. Our tiny infant, all 6 pounds of her, lying with at least 20 different IVs attached to her. She had a feeding tube in her nose. She was still drugged. A giant white bandage covered her chest. She looked so fragile. It was heartbreaking, but she had survived! I found it amazing how tough and strong infants really are.

Ronald McDonald House

We let her rest and went to check into the Ronald McDonald House. Let me preface this section by saying the Ronald McDonald House is amazing, and so are all the wonderful people who have to stay there.

We arrived in the early evening. Luckily the social workers at the hospital arranged everything for us so they were sort of expecting us. The place was a mile from the Children's hospital. It looked like a mansion. It was sealed up tight to ensure the privacy of all occupants. We rang the bell and waited. We were met with a matronly older lady who was very pleasant. She let us in and showed us to an office where she went over the rules. They were pretty simple: keep your key card with you at all times, clean up after yourself and don't eat or drink in the rooms. It would be 20$ per night if we could afford it, but it was ok if we could not as well. (this was good because Nathan was on leave with out pay from his school...much to our chagrin... and we were in Atlanta with a total of 100$).

The inside of the house was beautiful. Wood floors and beautiful furnishings, it was set up to make everyone's stay as comfortable as possible. The kitchen was the best, i wish I had such a kitchen at my home. Our room was a nicely appointed room with 2 sleep number beds and a bathroom. We had a key card to enter our room and to access the elevators in and out of the House. The kitchen was well stocked with donations of food. There were numerous fridges that families could use for their personal food. Every night volunteers would come and prepare a home cooked meal for everyone in the house, this too was free. Sodas were 25 cents, and we were encouraged to save the tabs from soda cans because the House made about 20k a year from them. (I add this part to encourage everyone to save their tabs and send them to a House near them, it is a great and easy way to help out families in need).

We check into the room and after a quick meal we collapse for a bit of rest before we head back over to the hospital to check on Aoife. On our way out we stop at the gazebo, which was the only designated smoking area on the premises. (i know smoking sucks, but trying to quit while going through an ordeal like that is near impossible if you are a smoker). While we were there, we met some of the other occupants of the house.

I have to let you all know how amazing I found the people I met there. Some of them had been there for months and months. Some had issues similar to our baby's, and others had issues that were even more tragic. The thing they all had in common was their absolute kindness. No matter what each individual was going through in their life, they all had a shoulder to cry on if you needed it. I remember thinking at the time that they had to be much stronger than I was, because I could barely keep it together enough to handle my own problems, let alone other peoples. It was great to meet them all, and we even managed to share a few laughs.

Recovery

We journeyed back to the hospital to see our beautiful baby. When we entered the CICU we met the nurse in charge of Aoife. it was a nice set up, one nurse for each baby, occasionally one nurse would watch over two. I went up to Aoife lying in her crib, kissed her head (tried not to cry) and told her "i love you, stay tough". This was to become my mantra for coming weeks. To my surprise, she responded to my voice. I was so happy. I wanted to pick her up and hold her, esp. since I had only held her for about 5 minutes right after she was born. The nurse was a bit alarmed, however. It isn't good for the baby to wake up shortly after surgery...they gave her some more morphine and told us it would be better if we went home and rested. She assured us we could call at any time of night to check on her. (which we did quite often).

Watching Aoife in CICU was not very eventful. Usually, even though we felt guilty, we would stay for a bit then go try to rest. We didn't want to disturb her, we just wanted her to recover well. She had been in CICU for about a week, and Nathan had to leave for Hinesville because he was still on leave without pay and we couldn't afford to lose the entire paycheck. I would be totally alone.

The hospital had a deal with the House, the security people would drive over and pick up residents once a day, and bring them to the hospital. then they would drive us back when we were ready. The last shuttle left at 6 or 7 pm, so after that I would have to rely on the phone to check on my baby. The first few nights were very difficult for me. I had never felt so alone, and it is rough being alone when you have an infant in the hospital. I was also missing my other kids terribly bad at this point, as I hadn't seen them in over a week.

On my third night alone, i had just come back from chatting with my new friends from the House, when I got the call...Aoife was going to the step down unit and i could stay with her, help care for her and actually hold her! The hospital arranged for the security shuttle to come pick me up after hours. I packed a bag and went to hold my baby.

Step-Down Unit

For those of you unfamiliar with a cardiac step down unit, I will explain. The baby is moved to a private room and parents are allowed to stay with them. We take care of the baby most of the time. The nurses are there only for support, tests on the baby, and to give you a break if one is needed.

I had to learn how to use the feeding pump, (Aoife still had not been allowed to eat from a bottle or breast at this point.). Even though I had 2 other babies, I felt like the most inexperienced and naive mother alive. It was as though i had never touched a baby before. Although she was no longer attached to the 20 IVs and machines, she still had the feeding tube, and a main IV. I had to be mindful of these things when I held her. I had to try to teach her how to eat from a bottle, and how to breastfeed.

I took classes on how to care for a heart baby, what to do after she goes home, infant cpr, and how to give her medication.

It was Halloween, my first one in my life that I was alone during my favorite holiday. At least I had Aoife. Nathan sent me phone pictures of my other girls dressed up, and of the pumpkins they carved. After the Halloween festivities, Nathan drove out to Atlanta to be with Aoife and I. Two days later, we get the good news...Aoife could go home!

Homecoming

Before Aoife could be released, we had to learn how to change the feeding tube and run the portable feeding machine. It was terrifying and disturbing, but we finally got it figured out. At least she was coming home, even if she still had to be attached to a feeding machine.

After successfully learning about the tube, getting the prescriptions and setting up her upcoming follow up appointments with pediatricians and cardiologists, we were finally on the road home. It was stressful, we had a 5 hour drive ahead of us and would have to staop to give the baby her meds and feed her through the tube, but we made it. Caoilfhionn and Nadia were so happy to see us all and finally see and hold thier baby sister. We had to explain about the tube etc to Caoilfhionn, and make sure everyone knew not to pick Aoife up under her arms for 8 weeks. We also had to instruct everyone in the house how to run the feeding machine and how to give her meds and when. Aofie was on 3 meds after her first surgery, for her heart and acid reflux. We had to make a huge chart on a white board so we wouldn't mess them up.

Within a few days of her homecoming, she was eating from a bottle and breast pretty well. We took her in for the first well baby check up and were told she could come off the feeding tube! We still had to wait to get her immunized (other than the RSV shot) for a while longer. Her first day without the tube went very well. She ate like a champ. Then night time came. Poor Aoife cried non stop all night long. Nothing would console her. I tried everything. I thought she may be constipated, because due to her meds she had hard time with that since birth. I called the pediatrician the next morning and brought her in for a check up.

Hospitalization

After the Dr. took Aoife's temp and noticed that it was 101, she informed me that I had to take her to the emergency room in Savannah. All babies, heart problems or not need to be hospitalized for observation if they run a high temp and they are under 2 months of age. What could this be? I was so worried. I had taken every precaution: super clean hands from everyone that even entered the house, sanitized with hospital grade foam, and if someone had a cold or even a slight sniffle they were forbidden entrance to my house.

We get admitted to the hospital and the mass array of tests began. The poked and prodded my poor little baby again, they gave her an IV in her head, because all other veins had already been poked. Finally the results came the next day. Staff infection from the last time she was in the hospital. MSSA. That was the really bad kind. She was started on mass quantities of antibiotics through her IV. She had an infectious disease warning sign up on her door. You couldnt touch her without wearing gown mask and gloves. I had finally gotten my baby home safe and sound and here she was in the hospital again with an awful disease. She was in the hospital for 9 additional days before she could go home.

When I finally got to bring her home, she was sent with a portable IV bag. A few days earlier she had ripped the one out of her head while I was feeding her, (scariest thing ever until i realized what had happened), and they had to give her a central line through her chest. Home health care nurses would come teach me how to change the IV bag and help me if needed. (the same nurses who would give her the monthly RSV shot). She had the IV for a total of 14 days. After it was removed, I had a "normal" baby for the first time since i had given birth to her. (by normal i mean, no feeding tunes, no wires attached to her, no IVs, just a little bundle of joy)

Life After Heart Surgery and Subsequent Hospitalization

Aoife adjusted well to home life. She was (and still is) the happiest baby I had ever seen. I was still insistent on everyone handling her with care, no picking her up under the arms for 8 weeks, keeping hands super clean and no one with a sniffle allowed, but over all things seemed pretty normal. She still took her meds 4 times a day. She had bi monthly cardio appointments. She was a fussy eater, sometimes only wanting the bottle and sometimes only breastfeeding. But over all things were normal and good. We felt things were going very well, and overall, they were. Then when she was 3 months old, her cardiologist said he noticed a problem.

Surgery Number 2

Apparently the scar tissue from the first surgery had thickened Aoife's aorta again. They would have to go back in and try to fix it. At first they sent us to Atlanta for a cardiac cath, where they can get an in depth look at her heart and try ballooning it. We didnt think she would need surgery again. We decided to take nadia and Caoilfhionn with us this time, because my mom wasn't there to help with them and nadia insisted on being there. So we packed up the family and headed back to Atlanta.

We get situated back at the Ronald McDonald House, which was quickly becoming our home away from home. Caoilfhionn, not understanding what the hosue was for, loved it there and charmed everyone. Aoife had to fast for 6 hours before the procedure (horrible to make a baby starve let me tell you). We wake up the next day and leaving the other kids at the house, we take Aoife to the hospital. After a few hours of waiting we were given the bad news, the balloon didnt take and she would need surgery again. I was expecting them to set up a date in the future, but our surgeon didn't like to take chances so he scheduled the surgery for the next morning.

All night we stressed, and tried to keep a positive outlook on things for our other children. I couldn't help but wonder...would Aoife need a surgery every 3 months? How much could one ;little baby take? We wake up and go to the hospital at 6 am. Once again i have to say goodbye to my baby and pray for the best. Nadia and Caoilfhionn came to the hospital with us. We once again sat in the waiting room and getting updates every hour. 6 hours pass, and the surgeon comes out to tell us she made it through and was in recovery. Big sighs of relief all around.

Back at the Ronald McDonald House we sat at our usual smoking area, the gazebo. I began to understand how the other families could stand to be so helpful to new people. We sat there talking to the new arrivals, explaining the system, telling them we were there if they needed anything, and offering up our moral support. It's not to say that you get used to being in this type of situation, but you come to accept it as normal to some extent. We had survived it once, and so far were pulling through it again. Someone once commented :i dont know how you do it". Well, what choice did we have? what choice does anyone have? You cant take your baby back and exchange it for a healthy one...(and I wouldnt trade Aoife even if i could), We do it because we HAVE to do it.

The recovery period this time was both easier and more difficult than before. On the one hand, we knew exactly what to expect, but on the other hand we had our other children there to think of as well. The other kids couldnt come visit Aoife because it was RSV season. So they had to wander around the hospital all day while we stayed with the baby. Of course Caoilfhionn charmed the entire hospital, and Nadia was disgruntled because she had to talk to the people Caoilfhionn made friends with. :D

Surprisingly they sent Aoife to step down within a couple days of being out of surgery. i stayed with her one night, then Nathan stayed with her the rest of the week so I could stay at the house with the other kids. He felt they needed me right then more than Aoife did, because they had just been separated from me for 3 weeks a few months earlier for the babys other hospitalizations. So I would spend the say with nathan and Aoife, then go back to the house to be with my other children. Aoife's stay was shorter this time, only about a week. Then, we could all go home.

Things returned to normal pretty quickly after we returned home. Aoife was and still is asymptomatic, so unless you see the scar or we tell you her situation, you would never know she had a problem. She is still on medication, although since she is doing so well they have dropped it from six meds to only 3. (and next week she should be off one more.) She will still the the 2, lasics and lisinipril, for the rest of her life.

One thing we noticed about the whole situation was family and friends are even more important than we thought. We longed to be near people who cared and semi understood our situation. We were sad because we almost missed the House, because we had a fabulous support system there. In hinesville, we had Bobby and Jes (love you guys) who are great, but we really wanted to be near our families so they could get to know Aoife as well. We decided to move back out west, and here we are.

So update: Aoife is a month away from her one year birthday. So far she is doing great. She has cardio appts every month to monitor her, and we have been getting good reports. With an asymptomatic baby however, you can be blindsided with bad news, so even though when you meet her you may think she is 100%, please keep her in your prayers to be on the safe side. She has another cardio appt on the 28th of this month, I am hoping things will still be great.

I would like to think everyone who helped us out during our time of need, both financially and emotionally. Bobby and Jes, the Hinesville community, the savannah reporter who covered our story for the news, the staff at lewis fraiser middle school (but NOT the evil school board!), my family and nathans family, as well as our extended families (Aunt Peggy and Uncle Paul, Uncle Terry, Uncle pat, Aunt Mary) and everyone else. If i didnt mention you it is prolly because i have only had one cup of coffee so far today :(

much love to all <3