Jacob's Story - Part 5 - Surgery & ICU

On Monday, August 7, Jacob was scheduled to be the second surgical case. We spent all morning with him, and stayed until they came to get him, around 1:00 p.m. We walked with them as they wheeled him to the elevator that would take him to the surgical floor. It was a very emotional and tear-filled moment when they took him away. Our last picture taken before surgery:

We got our first update at 4:30 p.m., three and a half long hours later. They had completed the Arterial Switch and were in the process of taking him off the heart/lung machine. About 15 minutes later, they called back and said his heart and lungs were working perfectly. Fortunately, they were able to close his chest too. Around 5:15 p.m., the surgeon, Dr. Jaggers came and told us everything went well. A few minutes later, they wheeled Jacob by. They had told us it would take about 45 minutes to clean him up. We waited almost an hour and a half until 7 p.m. to go back to see him. He had tubes & wires everywhere. It was so hard to see him like that, but he also looked the pinkest we had ever seen him!

About 24 hours after surgery, they took him off the ventilator. I remember one of the younger doctors saying on rounds, that he was a "rock star," and ready to come off the vent. But, we still couldn’t hold him because of lines that were delivering medicine to his heart. That evening, they put a CPAP mask on to assist him with breathing, but after a few hours of that, he didn't like it and he took it out himself! They put him on nasal cannula oxygen, and he did fine. We continued visiting Jacob as much as we could the remainder of the week. On Wednesday, the doctor gave the order to have the last line removed that was running to his heart, but it was late in the day, so they wouldn't remove it until Thursday. We had left for a little while and came back, and Jacob was wearing clothes for the first time! This is a preemie-sized outfit!! (The head I.V. is just lovely, don't you think?) Also, look at how pink he is compared to just before surgery!!

By Thursday, the lines were removed and we were finally able to hold him again. We started feeding him from little two ounce bottles. We brought his own clothes to the hospital and started dressing him up! This was taken on Thursday - the doctors who rounded on him just loved it....

Jacob was delayed in getting out of the PICU by fluid build-up from surgery that caused chest congestion and a partially collapsed lung. We were taught by the nurses how to do chest PT. After nearly a week in PICU, on the Saturday after surgery, August 12, we were finally transferred to the pediatric floor around 6 p.m. We were very happy because we could now "room in" with Jacob. It was quite a change for Jeff and I because we pretty much started caring for him around the clock. But, here's two more picture, one from Aug 11, and then from Aug 12, from the last day in ICU...

Jacob's Story - Part 4 - Catheterization

The Lifeflight team took Jacob to Duke, where Jeff was already waiting to fill out the paperwork. Of course, I wasn't there, so I'm not fully aware of the details. After arrival, Jacob was initially admitted to NICU, and since he had a heart defect, he actually was eventually admitted to PICU, the pediatric intensive care unit. All babies are in NICU at Duke, except heart babies, they go to PICU.

After Jacob was admitted to Duke, an emergency echocardiogram was performed. (Later, towards the end of Jacob's stay at Duke, the echo technician told us she remembered his admission and that they called her in an hour before her shift normally began to perform his echo.) The echo confirmed the Transposition diagnosis.

The "temporary fix" is to perform a balloon septostomy via a catheterization - they go up through a vein the groin and into the heart, where they place a hole between the atria of the heart to allow the non-oxygenated blood to mix with the oxygenated blood. As soon as the Transposition diagnosis was confirmed, Jacob was rushed to the cath lab. I believe it was around 7 a.m. by the time the ballon septostomy was completed. Here is Jacob after that procedure...

The balloon septostomy was successful. Jacob's oxygen saturation levels went from 55% to 98% almost instantly. Jeff called me after the procedure, and told me Jacob was doing a lot better and that they had taken pictures. I told him to hurry back with the camera so I could see them. My friend, Heather, took the camera and had all the pictures we had taken of Jacob so far printed and she put them into an album and brought it to me at Rex. There was a very noticeable improvement from seeing him in the special care nursery to after the catheterization.

In the meantime, the nurses at Rex were telling me I would be discharged that morning (of August 1) so that I could go be with Jacob. By the time my doctor rounded at 11:00 a.m., he basically suggested I stay put, having given birth less than 12 hours earlier. There was nothing I could do for Jacob except rest. Well, that, and I had starting pumping. Rex kept me overnight, and I was discharged on Wednesday, August 2.

Jeff and I drove straight to Duke to see Jacob. I remember being so excited to see him, and yet so scared about everything that was happening. He was sedated, and on a ventilator, but he was still with us!

In a wonderful twist of fate, his nurse the first two days was Mary Jo, who is a friend of friends, and I had met her before. We caught the doctors on rounds that Wednesday afternoon. They were hoping to do surgery on Jacob the following week. They explained he would need open heart surgery to fix the defect. Fortunately, there is only one surgery needed to "fix" most cases of Transposition - the Arterial Switch Operation. It restores the heart to as near as anatomically correct as possible, with just the risk of stenosis and scar tissue, which would be standard with any open heart procedure. The amazing thing is that the ASO has probably only been done for about 25 years. Prior to that, another surgery was performed - the Mustard or Senning procedure, and children could have serious heart problems as adolescents.

Jeff and I didn't want to go home without our baby. We live forty five minutes away, but that was too far for us. My dad made arrangements for us to stay at a nearby hotel for the first week. We were so grateful that we didn't have to worry about driving that far every day.

They left Jacob on the ventilator on August 2 and 3 because he had a brain MRI scheduled for August 3 and it was safer for him to remain on the ventilator during the MRI. While he was on the ventilator, we could not pick him up and hold him. When we arrived on the morning of Friday, August 4, Jacob was on nasal cannula and had the ventilator tube out of his mouth. Since he was finally off the ventilator, we could finally hold him!! Yes, this is the first time I had held him since he was born!!


On Friday, August 4, we also got the results of the brain MRI, and it was completely perfect!

On Saturday morning, we arrived at the hospital, checked in and went to the room he had been in the past few days, and there was no baby there! They had moved Jacob to a room with all babies - it is a NICU nursery with probably 8 NICU beds and 4 PICU beds. We had a lot of visitors on Saturday. I had many friends come by and Jeff's entire family, his mom's 6 brothers & sisters, some of their spouses & kids all came by and met Jacob. On Sunday, I spent lots of time holding and cuddling him! Sometimes, I even left Jeff, or one of our moms hold him!

Jacob's Story Part 3 - LifeFlight

Quite frankly, from that point forward - the next 12-24 hours, everything is truly a blur. The entire experience was surreal. I could not believe this was happening to our baby. Dr. Barrett finished up with me and went to check on Jacob. She came back and told me Jacob was very sick, but she did not know any details.

My delivery nurse told me that Jacob would need to be transferred to another hospital and Jeff would have to go with him so he could admit him. I would need someone to stay with me. They wanted us to call our parents, but we couldn't call them at 3:00 a.m. with this news and risk them driving in the middle of the night all upset and worried. We decided to call our friends, Katie & Daniel, who lived pretty close by, and are familiar with Rex. I'll never forget calling them in the middle of the night. Daniel answered the phone, and I told him Jacob had been born, but he wasn't doing well. Daniel told me they would be there as soon as they could and passed the phone to Katie. I briefly explained things to her, and she said they were on their way.

At one point, Dr. Barrett took Jeff & I (me in a wheelchair) to the nursery to see Jacob. As they wheeled me past the other babies, I remember thinking that even though those babies were in special care, they looked like they were doing so much better than Jacob. We reached the end of the long nursery, and Jacob in a hospital bassinet surrounded by nurses and doctors. A nurse was using a bag to breathe for him. He was blue. We touched his little hands and face. Tears streamed down both our faces. It was almost unbearable. I remember hearing later that his APGAR was 9 at one minute, and 2 at 5 minutes - one point for respiration, and one for heartbeat, and that was it. He was completely unresponsive.

There was a neonatologist on staff who examined Jacob. They did a chest x-ray. He pulled us aside and showed us the x-ray and told us his heart was not enlarged, which was good, but he felt like Jacob had a heart defect. They suspected it was one of three defects, but could not diagnose him without an echocardiogram, and they did not have those facilities. He told us they had begun administering prostaglandins to keep the patent ductus arteriosus (PDA) open, which would help if it were one of the three defects. Essentially, this saved Jacob's life. Soon after he was born, his PDA began to close, and that's why he was blue - we later learned he had Transposition of the Great Arteries. The aorta and pulmonary artery were switched, so the heart was pumping the "blue blood" from the body, back out to the body, and the "red blood" from the lungs was going back to the lungs. The very little bit of red blood getting to the body and brain was from the PDA being open, and then from the PDA being kept open by prostaglandins. Prior to the prostaglandins, Jacob's blood oxygen levels plummeted to 30-40%. After giving him the medicine, it stabilized around 55%. At some point, they took me to my new recovery room. Katie & Daniel had arrived, and we explained what we knew so far.

After settling in, Dr. Barrett came back and took us for a second visit to the Special Care Nursery. One of the nurses told us that Jacob would need to be transferred to either Duke or UNC, and that the transport team would bring him to my room so I could see him before he left. Then, another nurse shook her head, indicating no, that he was too critical for the side-trip to my room. Ironically, a few moments later, the Duke Life Flight team arrived, and they ushered us out of the special care nursery so they could prepare him for transfer. They took me back to my room, and Jeff left with Daniel to go on over to Duke.

I think it was around 5:30 a.m. that the Duke Life Flight people did come by my room with Jacob. I was so grateful. Katie grabbed the camera and snapped pictures. The two pictures she took are below. Truly, I did not know if this was the last time I would see my newborn baby. It was a somber moment. As they took Jacob away, Katie hugged me and I just cried my heart out. Then, we said a prayer for Jacob.

Jacob's Story, Part 2 - The Delivery

I think I was in labor on July 31, but I wasn't sure. Around lunchtime, I didn't feel very well. I continued working the remainder of the day, but I left work around 4:00 p.m. so as to avoid the traffic in case I went into labor. Around 6:30 p.m. I finally called the doctor. I was pleased to learn that my favorite doctor, Dr. Barrett, was on call that night. Since it was my first pregnancy, she told me it would be fine if I wanted to come in to the hospital to be checked.

Jeff and I packed a bag, and called our moms on the way to Rex Hospital. We told them we were pretty sure I'd be sent back home. Since they both live over 2 hours away we told them not to come just yet. We had planned to tell them to come once we knew I was in labor or was admitted to the hospital. When they checked me at the hospital on Monday night, I had not had much progress from the previous Wednesday's OB appointment - I was still around 2 cm and 80% effaced. The doctor said it was close, and I might be 2.5 cm. They let me walk around for an hour or so. I finally saw Dr. Barrett again around 11:30 p.m. At that point, she decided to keep me overnight and if nothing was going on by morning, they would discharge me. It was late, so we decided not to call our parents and get their hopes up. At 12:15 a.m. Dr. Barrett checked me and I was 3 cm and she decided to break my water. I was pretty happy because that meant I would not leave the hospital still pregnant!

Breaking my water certainly got things moving. Every 15 minutes, the nurse would come in and check on me, at 12:30 a.m., 12:45 a.m., etc. and each time, I would tell her I was managing without pain medication. Finally, at 1:30 a.m., I decided to ask for Stadol, but I still did not want an epidural. When the nurse checked me, she told me I was 9 cm! I had progress from 3 cm to 9 cm in one hour and fifteen minutes! Apparently I was in labor! By that time, I couldn't have gotten an epidural if I had wanted one, but they did give me Stadol.

By 1:50 a.m. I wanted to push, but had to wait until a little after 2:00 a.m. to be fully dilated. After 19 minutes of pushing, Jacob was born at 2:27 a.m. I remember they put him on my stomach and I felt such awe looking at him. I noticed a little angel's kiss over his left eye. A few minutes later, they whisked him over to the warming table to check him out. Jeff was snapping pictures left and right. As they were examining Jacob, I heard a nurse say to get the special care nursery team right away. There was something wrong. I had no idea what was going on. Then, I remember them saying, "bag him," and knowing I had heard that on T.V. before, I knew he was having trouble breathing, and things were not good. Then, they rushed him away to the special care nursery since Rex Hospital is a smaller community type hospital, and does not have a NICU. The confusion was just beginning...

Update on Nicole's Dad

Nicole's father made it through last night, which they weren't sure he would. He's had some good things happen, and the doctors have gone from "Not Optimistic" to "Encouraged." He has a long road though, so please continue to pray for them.

7 days & counting.... Jacob's Story

I've written Jacob's story and next week a shortened version should go up on the http://www.kidswithheart.org/ website for his first birthday. I'm going to share the story in parts over the next few days since it is kind of long... Part one follows:

Jacob's Story

Jeff and I had been married for about 2 and a half years when we decided we were ready to start a family. We got pregnant in November. Towards the end of November, and beginning of December, I felt different, and I thought I might be pregnant. On Saturday, December 3, I took a home pregnancy test, and it was positive! I showed Jeff the test and had to explain the results as he woke up Saturday morning and needless to say, he was thrilled. We surprised our parents at Christmas with our big news. In January, we told our friends and family.

On March 8, we had an ultrasound and found out we were having a baby boy. We were very happy and had already picked out a name, Jacob. At the March 8 ultrasound, Jacob was in a funny position and they could not get a clear view of his heart. The ultrasound technician mentioned that they may send me back for another ultrasound to try to view the heart at a later time. I had my next OB appointment a week later, but it was hurried, and I forgot to ask about the ultrasound. At my April appointment, I asked the doctor about the ultrasound. He hurriedly went over it with me. I asked him about the heart not being visualized clearly. He said since there was no family history of heart problems, that a repeat ultrasound would not be necessary. Of course, we had no reason to suspect anything unusual, so we did not press the issue.

The remainder of my pregnancy was very normal. It was quite a hot summer, but I managed by drinking milkshakes whenever I could! In July, by 36 weeks, Jacob had "dropped" into position, and one of my doctors said that meant I probably would not go past my due date of August 11. At my 37 week appointment on July 26, I was 2 cm dilated, 80% effaced, and Jacob had dropped from negative 1 to 0 station in the pelvis.

To be continued...

Nicole's Dad...

The father of my very good friend, Nicole, had open heart surgery yesterday. A triple bypass was scheduled, but the surgery did not go well as an unexpected aortic dissection was found. The medicine given after surgery made this condition worse, as more stress was placed on the aorta. Her father is not doing well and the family has been told that the doctors are not overly optimistic about his chances. Please keep them in your prayers.

Jacob's One Year Pictures

Oops - thought I posted this last Friday!

Hold your hats! It's a whole two posts in one week! And stay tuned next week, when we start the birthday count-down - I have a surprise for my faithful (and occasional) readers!


I'm posting some of my favorties from Jacob's Portrait Innovations pictures last Saturday. You can see the whole lot of them at http://www.jacobjones.shutterfly.com/, but here's a couple!

Father's Day & July 4th Pictures!

As promised: Link to lots more too.

And July 4th:

And one more of my handsome guy!

Three Weeks & Counting!

I can't believe Jacob's birthday is in three short weeks. The party will be the following Saturday and I'm so happy my brother & his fiancee are coming from Texas! Here is the front of the invitation. I love Shutterfly! They printed, addressed & mailed them! It could not be easier!



I encourage you to stop by http://www.kidswithheart.org/, as well as to return there in a few weeks. There is a good chance that if I can get Jacob's "story" written in time, he will be the feature story for August. Right now the feature story for July is posted about a little boy named Cayman who was born on July 22 and lost his fight with CHD on the day Jacob was born. It's not a happy ending, but it is one that potentially could have been had the defect (Coarctation of the Aorta) been detected. [See Mayo Clinic - treatment for Coarctation of the Aorta] Congenital heart defect awareness is so important. I think Cayman's story shows that even medical professionals still need to be educated!

Eleven Months Old!

Duh! I forgot to post earlier this week that this past Sunday, Jacob was 11 months old! I cannot believe how fast he is growing up! He will be a one year old in just 26 days!

We are so excited about his birthday party! I designed invitations on Shutterfly and they went out earlier this week! I'll have to figure out a way to post the front of the invitation!

Patio furniture, July 4th, Snot, & Eczema

As I posted last week, my mom came up last Thursday and stayed with Jacob on Friday. I know they enjoyed their time together! On Saturday, Jeff and I did a marathon shopping trip - we got a new umbrella for the deck, as well as new chair pads. Then, on Monday, Jeff found a great deal on a set of deck furniture on overstock.com that is black metal. We ordered the six-top table & six chairs. The furniture was scheduled to arrive on Monday, but Jeff just called and said it just arrived today!

We had a great 4th with Chris, Nicole, Devyn & Megan. They came over around 4 p.m. and the kids all swam in Jacob's little pool. We got some great pictures that I'll post soon (with Nicole's permission of course!) They had fun splashing around for about an hour, and then we got them cleaned up and fed Jacob & Megan dinner, while Jeff & Chris grilled hot dogs, brats, burgers & portobella mushrooms. (You would have thought we were cooking for twice as many people, but hey, we like leftovers!) Jacob actually ate his first meal all by his big-boy self - he fed himself goldfish, about a half of a hotdog and about 3/4 of a banana, plus 2-3 animal cookies.

Thursday morning, Jacob sneezed about 7-8 times before we could get him out the door! He seemed to be pretty happy, and the drainage was clear, so we proceeded on with our day and dropped him off at Chrissy's. Jeff wasn't feeling well himself, so he stayed home from work. I told Chrissy if Jake seemed to not feel well to call. I ended up picking Jacob myself around 5:00 p.m. Chrissy said Jacob had just started seeming tired and not feeling good in the last hour or so, and she figured we would be there soon, so she did not call. He slept pretty restlessly last night and seemed pretty tired this morning. Jeff decided to stay home with him today. So, I have a sick husband and child at home today.

The other thing Jacob has had going on lately, is eczema on his legs, arms, back and torso. Through diligent use of Vasoline Creamy ($2.47 Target!) 4-5 times a day, we have the back, torso & arms under control, but his legs are still red, splotchy & dry. We are now trying Baby Eczema Cream ($8.59! ouch!), but I can't say it's worth more than 3 times the price of the Vasoline so far!