My name is Alison Walsh and I’d like to tell you a little bit about our wonderful experience at the NICU at Hoag Hospital in Newport Beach. My pregnancy with my daughter Reagan was unique from the very beginning as Reagan was conceived via IVF. Words cannot express the joy that we felt when we heard that my HCG levels indicated that I was pregnant! A few days after the first test we repeated the blood test and it was confirmed that my HCG was doubling. I felt like I was on top of the world, my dream of becoming a mother was finally coming through. After a few months and A LOT of hormones I was incredibly lucky to receive a positive test after only one IVF cycle.
Unfortunately, the celebration was short lived and we encountered complications just a few weeks later. Around 8 weeks (gestational age) I began bleeding as if I were having my period. Our doctor did an ultrasound and was unable to determine where the bleeding was coming from. He recommended strict bed rest for two weeks and advised that we try to be cautiously optimistic. This is the last thing we wanted to hear. We knew going in to fertility treatments, and pregnancy in general, that nothing is every guaranteed. But, after a positive test it is so hard not to get excited and to become attached to that microscopic cluster of cells. Over the next few weeks the bleeding subsided. We went to our next ultrasound feeling like we had conquered the world. Unfortunately it was at this ultrasound that our doctor discovered that my yolk sac was much larger than it should have been, about 3.5x larger than the normal size. We were advised that this could indicate potential issues, several tests were ordered, and we were told yet again to be cautiously optimistic. Weeks later we received the test results and everything looked good. After a very scary first we told ourselves that we were going to try and do everything we could to enjoy the rest of the pregnancy. We had a few good weeks and were very optimistic as we went to our twenty week anatomy scan. The scan went well, everything was measuring as it should! However, due to the baby’s position, it was tough to see all four chambers of the heart. The ultrasound tech recommended a follow up and doctor told me at that appointment that because we had gone through IVF we should also have a fetal echocardiogram, as that was standard protocol at their office.
A few weeks went by and I ended up going to the fetal echocardiogram alone as my husband had a few meetings that day. I didn’t even think twice, we had gotten through a turbulent first trimester – nothing bad could happen at that point! I could not have been more wrong. My world shattered that day. The technician was absolutely silent while she studied the fetal heart, she took image after image turning her head at the screen. After what felt like an eternity she told me that something was wrong and she needed to get the doctor right away. I immediately began to tear up and time seemed to stop. I called my husband and told him that he needed to stay on the phone and listen to the rest of the appointment. After a lot of tears, confusion, hours of doctors’ appointments, and hundreds of conversations – we had a diagnosis and a plan.
Reagan was diagnosed with a muscular ventricular septal defect (a very large VSD), ventricular hypertrophy, and discontinuity between her mitral and aortic valve. We were told that although this sounds very scary, congenital heart defects happen to 1 in 100 babies. We were told that Reagan would need heart surgery before her first birthday, but the mortality rate was very high.
At around 30 weeks I began going to fetal monitoring at HOAG 2x per week. Despite how scary everything was I grew to love this time. This became my time to connect with her. As the weeks went on we began to plan for delivery. Because of Reagans special heart we needed to have NICU doctors in the room while I delivered and my OBGYN wanted everyone on the floor to be briefed on her case. Technology is very advanced, but ultrasounds and echocardiograms can only show you so much – there was always a chance that something could happen during delivery and she would need emergency surgery. We scheduled an induction for July 21st – she would be 39 weeks and ready to go!
By the time July 21st rolled around I was a basket case. Over the course of 5 months we probably had about 15 conversations with different doctors about the fact that Reagan was going to be immediately taken to the NICU for monitoring. I told myself over and over that this was going to happen and I was going to be okay with it. It turns out that no matter what you do to prepare, nothing in the world can make it feel okay when the cart rolls out of your room and your baby is taken away from you. I told myself that I was lucky that I knew this was going to happen. Other Moms have no idea, I was given time to prepare. At the end of the day, no matter how much I tried to coach myself through the experience - nothing could change the fact that it was really hard.
I delivered Reagan naturally which meant I was only approved by my insurance to stay in the hospital 2 nights. We knew that she was going to be in the hospital at least 4 days which meant that I was going to have to leave the hospital without her. About 12 hours later after my epidural had worn off and I had checked a few items of the list I was allowed to go down to visit Reagan. My nurse helped me to walk to the elevator and told me where to go. I was so eager and so very scared. I had a mix of emotions that I had never felt before. As I walked up to Reagans bed I was overwhelmed with feelings. I was beyond happy to look at the monitor and see that her heart was indeed beating, but I was devasted to realize that she had tubes and wires all over her. At this point I was not even able to hold her, I just stood there staring at her.
Over the next 30 hours I visited Reagan as often as I could. I had to be back in my room to be checked at certain times, but every possible moment I sat by her side. When I was discharged from the hospital my husband and I decided that I would come home for a shower and a nap. Leaving the hospital without her was the hardest thing I have ever done, I cried the whole way home. I was home for about 30 minutes before I begged my husband to drive me back. I just wanted to sit by her side and wait.
The nurses in the NICU at HOAG were so incredibly loving. Each nurse treats the patients as if it is her own child, showing them love and compassion every minute they are together. The nurses did everything that they could to help me to connect with Reagan. The nurses taught me how to take care of her with all of her monitors on, how to change her diaper, how to swaddle her, and how to bathe her. The nurses experienced many of her firsts with me and supported me every step of the way. Reagan was only in the NICU for 5 days after her birth, but it felt like an eternity.
I wish I could go back in time and explain to the nurses and doctors the impact that they made on us. We were able to go home and sleep at night knowing that our baby was in good hands. I do admit that I would fall asleep watching Reagans bedside camera, and would even sometimes wake up and check the webcam in the middle of the night. It’s definitely not lost on us that many families spend much more time in the NICU and that we were incredibly lucky to be able to take her home after only 5 days.
Since we left the hospital in July Reagan has had one heart surgery and we expect one more in the next 4-8 months. Our time in the NICU at HOAG prepared us for her first surgery in ways that we can’t even explain. At HOAG we felt cared for and loved. We are a part of the HOAG family and we always will be. We were so lucky to be able to focus on Reagan and only Reagan. We cannot even imagine the extreme pain and heartache that parents feel when they are worrying about finances on top everything else during these difficult times.
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My name is Ted Francisco. I'd like to share a brief story about my experience in the Neonatal Intensive Care Unit with my son Peyton at Hoag Hospital.Peyton is our miracle baby. In 2001, my wife Kristin and I discovered we were having twins. like many couples, we needed the support of a fertility specialists to get pregnant. Kristin was underweight with a poor health history. Her pregnancy was fraught with challenges. At 22 weeks, she started to experience Braxton Hicks contractions. We were very worried about extreme premature birth. During our weekly fetal monitoring we discovered that the kids’ renal systems were not developing normally. So, we spent the next weeks scouring the Internet for information to try and calm our nerves. Unfortunately, we were not successful, and we were basket cases.
At 33 three weeks, we had begun daily fetal monitoring. One of the nurses was concerned that the heart beats of the Twins were elevated and had difficulty seeing any amniotic fluid. She called in a specialist. The specialist never arrived. Instead, our OB-GYN who had been on vacation called me to tell me that they would be taking the kids that day. WHAT DID THAT MEAN? We were unprepared. We contacted family and waited. What we did not know at the time was that Kristin had already been in labor. At 5:45 that evening, doctor Gross, our OB-GYN walked by me with a happy wave to me said, “ Hi Ted see you in there.” And the next thing I knew I was sitting beside Kristin who was having an emergency C-section. With two preemie Twins the operating room was filled with doctors and nurses.The first baby to come was Emerson, our daughter. She came out screaming like a cat who is ready for a fight. Two minutes later, our son Peyton came. There were no sounds. One nurse held Emerson up to us, it seemed like any other newborn. The silence from Payton was deafening. We could hear the doctors and nurses speaking with urgency. A doctor waved him by us we didn't have time to look at him. A nurse told me they're taking the kids to the NICU. I told my wife I would check on the kids. And so, I was taken to the waiting room outside the NICU. Where I waited for what seemed to be a lifetime. When I was allowed in the doctor on staff said, “Emerson is what we call a grower. She's doing just fine she'll just need to learn to suck on her own and grow.” Peyton, on the other hand was on a ventilator. I touched his foot and the nurse asked not to touch him. They did not want him to be agitated. Can you imagine what it is like waiting 30 years to have a child, and not be able to touch them?
Over the course of the next week Emerson patiently took to feeding and grew. Peyton got worse and worse with each day. The doctors told us his lungs had not fully developed and that they couldn't tell if he would have permanent damage. He was in very serious condition. We were not able to touch him or hold him. Each day, Kristen and I would go in to feed Emerson and look at Peyton on his respirator.
A woman named nurse Barb was our salvation. She always had an upbeat attitude. She was very compassionate. And we knew that no matter what the day would bring, we would get a hug before we left. I think most people find when they go into a situation like this, there is one person who becomes their anchor. That was Nurse Barb.
We became amateur doctors. Again, we scoured the Internet for answers. And every time we did our heart sank more and more. Each day, when we came into the NICU, an X Ray would be posted above Peyton’s incubator. A daily shot of his lungs. The doctor showed us the dark spots represented fluid which made it difficult for him to breathe and dropped his pulse ox. As the days progressed the dark spots grew.
After six days of his declining condition, the doctor took us aside, and said “I'm not sure how much more we will be able to help him. I want you to prepare yourself.” We left that evening thinking that we would only have one child. We stayed up all night and cried . The next morning, we went to Hoag hospital expecting to say goodbye to our newborn son. I looked at the X-ray above him and the lungs were clear. I asked nurse Barb, “whose are those?”
“They are my little Peyton’s!”
There is no way to put in words the feeling that we had when we heard those simple words. “They are my little Peyton’s.” Unless someone has gone through the experience I don't think they can truly appreciate how important a team in the NICU can be. I think God blessed us that day. 18 years later my son who was a day away from leaving this world, is now an engineering major with a bright bright future.
Our Twins were in the NICU for three weeks. We had an overwhelming joy when one day we came in and the doctors and nurse Barb decided to put the Twins together in one bassinet. She said they feel so much more comfortable being together. After 18 years, nurse Barb continues to send us a Christmas card with a note that says how happy she was to be a part of their lives. I don't know she will ever realize how truly important she was.
Cooper Giddy was born at 35 weeks to Lauren and Jason Giddy. After her pregnancy got off to a good start, Lauren experienced early contractions at only 26 weeks. Because of the early contractions, Lauren had to have a procedure called Shirodkar Cerclage. In an effort to avoid an extremely premature birth, Lauren remained in the hospital for 7 weeks. At 35 weeks pregnant, her contractions were too severe to sustain her pregnancy. The Doctors rushed into the room, and Lauren was taken to a c-section within 20 minutes. Cooper was born weighing 5 pounds and is currently in the NICU in South Africa. In South Africa, the Doctors refer to the NICU as a 'womb with a view' - where the babies continue to grow in a safe environment, just outside the womb. Cooper has been responding well and is slowly growing and developing every day. Lauren and Jason look forward to bringing their baby boy home as soon as possible!