Wednesday, April 22, 2015

Porter's birth story

Braylon was 7 months old when we found out that we were pregnant with baby #2. After everything that we had been through with Braylon, we were trying to be optimistic; we had no reason for concern, there was only 2% chance of having another child with Gastroschisis, some odds of having one child with it. The first 20 weeks of pregnancy were very similar to my pregnancy with Braylon, other then constant morning sickness: morning, day and night sickness really. I could not think about, look at or eat chicken, I would become violently ill and I craved yellow peppers like they were mini donuts!
We went to our "20" week ultrasound at a little over 18 weeks, we were anxious about the gender, both fairly certain it was another boy. We had our girl name picked out just in case, Brynley, we still were unsure of a boy name, both secretly hoping it was a girl. Our OB doctor got called to an emergency C-section, leaving us in the hands of a Nurse Practitioner; she did our appointment and then said we could do the ultrasound, but that she was not going to be able to tell us gender. She thought it would be good to just take a look at the baby anyway, we were not going to complain. We went through the ultrasound with great findings, there did not appear to be any abdomen defects or abnormalities. We were on cloud nine, so happy and relieved to find out that we would get to experience a normal pregnancy.
We scheduled our gender reveal ultrasound for 2 weeks later, we were just shy of 21 weeks by that time, and the suspense was killing me. Boy or girl, Brynley or having to find another boy name... Would we do another B name for a boy? I loved the name Brynley, it fit perfectly, Braylon and Brynley... Ben's Grandma had passed away that year and we would use her name as the babies middle name if it was a girl... Brynley Darlene.
We walked into the ultrasound room with our OB doctor and he apologized a million times for having to make us come back. We were fine with it, we got to see the baby again, no parent would complain about that. He did all his normal measurements, the head looked good a little big, but nothing alarming. Next was the arms, all well there. Then the abdomen... What was that? Okay maybe we will do the legs first, legs look good. Gender... It was a boy! Ben and I were both excited, happy Braylon would have a brother to play with, a built in best friend. My mind questioned the rush past the abdomen, did I see what I really thought I saw or was my mind playing tricks on me? Dr. Larson slowly went back up to the abdomen and as he did my eyes darted to Ben's and we both knew, that the only a reason a "tree" is growing out of your child's abdomen is because your child has Gastroschisis. Dr. Larson looked at us and gave us his most sincere apologize, we talked about our options for treatment (I was working at a hospital in Mankato, MN, Mayo Health System, so we were doctoring there. Dr. Larson wanted to send us to Rochester to see their specialist. We agreed to do so, but let him know that we were most likely going to go back to Abbott and Children's, we knew their system). The second the elevator doors closed I lost all control that I had, Ben reassured me that everything would be fine, reminding me of how good Braylon did and that it would be just like that. I told him I was worried it would be worse this time! We called our families and told them the news, everyone was sad for us; Ben's grandfather told Ben that we should pick a different position because obviously the one we were using wasn't working :) Sometimes in a crappy situation humor is the best medicine.
We headed to Rochester the next week, we met with their specialist and after asking questions and getting to know the system, we chose to go back to the cities. Rochester had a wonderful program, I however felt more comfortable at Children's, I knew their system, the staff, families, it was where I was most comfortable.
So just like we did with Braylon we did weekly non-stress tests and level two ultrasounds. I had a lot of preterm labor and was put on bedrest at 29 weeks. I was given medication to stop contractions and was told I shouldn't lift anything over 10 pounds, Braylon weighed 20 pounds.
At 32 weeks, I had a Friday appointment with my OB doctor in Mankato, we did an ultrasound, normal routine, Dr. Larson was concerned about the intestines, it appeared on the ultrasound that there may be some matting on part of the intestine (one of the reasons they do so many ultrasounds, with the intestines free floating in amniotic fluid, the intestines can become swollen, matted and die). I had an appointment at Abbott that following Tuesday (it was Labor Day weekend), so Dr. Larson said he was going to send the ultrasound report to the doctor I would be seeing at Abbott, so they could take a closer look at it. He was also concerned that it appeared that my cervix was funneling (sign of labor to come). He had me reposition and said it must have been the way I was laying and he sent me on my way, back on bedrest.
Normally over Labor Day weekend we would have headed to the lake and spent time relaxing in the sun and playing in the water; with me being on bedrest I couldn't go, I told Ben he and Braylon should go and have fun; he told me he wasn't going to go without me. So we snuggled in for the weekend. I woke up Saturday morning at 1am with contractions right on top of one another, 1 minute apart lasting 55 seconds; I was in pain! I didn't even have our hospital bag packed. Ben told me to stay laying while he packed stuff and put in his "eyes". He called my mom to come and stay with Braylon. When my mom arrived I was already in the car and we were off to the hospital, Ben called his mom on the way to the hospital, she was up at the lake cabin, an hour away. We got to the ER and the rushed me upstairs while Ben gave them the information we needed. (I think this is where I should add that I was doctoring 30 miles away from New Ulm, due to where I worked. In this instance we went to the New Ulm hospital instead of driving the 30 miles).
When I got my room, the nurse had me change into a gown and a new doctor came into my room and checked me. I was 5 cm dilated and fully effaced. The got me started on Magnesium Sulfate and called Children's hospital to get a helicopter sent, well it was too foggy that night to fly and I would never make it by ambulance. Dr. K checked me again and I was at 8 cm, Dr. K told the nurse to take me off of the Mag Sulfate, because it wasn't working and it looked like we were going to have to deliver here. He gave me an epidural to help with the pain. I started hyperventilating, knowing the risks of delivering Porter at a hospital that didn't have the necessary equipment and knowledge of babies with Gastroschisis. I began informing the nurses and Dr. of what they would need to ensure his bowel was not damaged and would stay viable. Dr. K called back up to Children's and told them to send down an ambulance with the appropriate staff needed for the baby. The goal was to get me to hold off delivery until they arrived, probably about 2.5-3 hours, so Dr. K had them put me back on Mag Sulfate and upped the dosage to try and get it to by them time. I was on the Mag Sulfate for a very short time when he decided to check progress and I was fully dilated, this baby was not waiting. My water had not yet broke, so Dr. K took me off the Mag Sulfate and broke my water. Upon breaking my water I went from fully dilated down to 5 cm. The entire room stood still; it was like we were in extreme fast forward and then in a blink of an eye every was able to take a deep breath and relax a bit. By this time it was 4 am, my mom and Ben's mom had joined us (my mom brought Braylon to sleep with Papa).
Dr. K told me that I had what was called a bulging membrane, essentially my bag of water had began bulging through the cervix causing me to dilated at a very rapid rate. Now that my water was broke and I was only at a 5, they decided to put me back on Mag Sulfate and hoped to get me to the Abbott before Porter made his grand entrance. A little after 5 they dispatched a helicopter, with the sun coming up it lifted off the fog enough to allow flight. I got in  the helicopter a little after 6am and we arrived a short 25 minutes later on the roof of Abbott Northwestern. Ben and his mom began their drive before I left in the helicopter, they had a 2 hour drive.
When I got settled into my room, it was only about 45 minutes and Ben was by my side again. We were told that they were going to try and keep us for 4-5 more weeks before delivering Porter. I was shocked I didn't think you could go more then 24 hours with your water broke, but I was wrong. They were giving me antibiotics and monitoring him very closely.
Day after day went by, the contractions stopped and we were in holding... With each passing day I felt less and less movement and was getting very worried. I talked to each nurse about it; and they said I wouldn't feel as much because there is no longer a bag of water around him, so his movements don't create a ripple like they did with the water. Ben and I passed our time by talking to Braylon on the phone (did you forget that we had another child... We didn't either), playing card games and watching reruns of whatever was on the tube.
The morning of September 3rd, the evening nurse came in and woke us up at 6am, she said that she was going to call and schedule a biophysical test, because she was not seeing what she needed to on the monitor. We called our moms and updated them, Ben's mom got in the car and drove up. They did the biophysical at a little before noon, Porter scored 2 out of 10 (if you don't know what a biophysical exam is, it is basically an ultrasound that measures 5 different categories, breathing movements, arm/leg movements, muscle tone (flexing/extending extremities), amniotic fluid pockets and heart rate diesels. Each category is worth two points). The agreement was that we were going to give him 3 hours and then check him again with another biophysical exam, sometimes if baby is sleeping they won't thrive. If he didn't do well on the second biophysical they would have to deliver. At that moment I called my mom and told her she needed to come up, we would most likely be delivering him today.
A little after 3 they came back and did another biophysical exam, Porter scored a 4 out of 10 on the second exam. It was determined that he was not thriving any longer and they needed to get him out, he was classified as an urgent C-section (not emergency, but urgent). They prepped an OR and we went into the OR at about 6:15pm on Thursday September 3rd. Porter was delivered at 6:59pm, he weighed 3 pounds, 8.5 oz and was 16 1/4 inches long. They prepped him for transport and Ben left my side and headed over to Children's hospital with Porter. I got a quick glance at him before they took off; he looked just like Braylon had, old and wrinkly. I went to recovery room where my mom joined me and we waited for the okay to head over and see him before surgery (we were not sure why they hadn't taken him yet, but we were told to head over when we had the all clear). The nurse wheeled me over to Children's on my hospital bed, right into the NICU and I got to see Porter before he went to surgery. The Gastroenterologist came over and talked to me about Porter's case; he informed me that Porter had a blockage in his intestines, his entire large intestine was undeveloped and they would have to do what was called an Ostomy (they would cut out the bad part of the intestine and they would make an incision in his abdomen and put the end of the good intestine through the abdomen and he would have his bowel movements into an Ostomy bag, until they felt confident that they could go in and reconnect the small and large intestine). My head was spinning, this was not like Braylon at all, this was new I didn't know what to think. They whisked him off to surgery with my Ben's signature and I headed back to Abbott to wait for the call that he was out of surgery. Porter got out of surgery at a little before midnight.
Porter thrived each day, getting better and better, we needed one thing from his so he could get off TPN and start with breast milk, he had to poo in that little bag. It took him three days to poo and once he started he didn't stop! I learned everything there was to learn about Ostomy care, I was an infant expert on the topic, we were unsure of how long Porter would have to live with an Ostomy bag, it was a waiting game. Porter's doctor approached me and asked if I wanted to try something that had never been tried before; daily dilatations of Porter's large intestine (the undeveloped portion of his intestine). It would consist of inserting a catheter into his rectum and pushing saline solution until I felt resistance and then documenting how much I got each day. Porter's doctor thought that it would help to develop his large intestine with a little prompting. I agreed, what could it hurt?
We had been at Children's for 3 weeks, I was on my way up after spending the night at home with Braylon; I felt horrible no matter where I was feeling like I was missing out on one thing or another, however my guilt was overwhelming when I was at home, Braylon had Daddy and both sets of Grandparents, Porter had nurses and no family (those nurses are amazing, they take care of all those children like they are their own). On my way to the cities I received a call from Porter's doctor, saying she was going to schedule a CT scan for Porter the following morning, she was worried that Porter had Crainosynostosis, my heart began racing as I told her that I was only 45 minutes away, could we please sit down and talk about it when I arrived? So we scheduled a meeting for an hour later. I called Ben and asked him to come up after work, so he could be there for the CT scan in the morning. Ben's mom took Braylon for us, so we could both be there for the results.
Porter had his scan first thing in the morning and sure enough Porter had Crainosynostosis (his sagittal suture had prematurely closed, causing Porter's head to grow long, but would not allow it to grow sideways. Porter had a very long narrow head). Porter would have cranial reconstructive surgery, we would have to talk to the Neurologist to determine the best time to do the surgery. After meeting and speaking with Dr. N it was determined that Porter would be best suited to have the surgery sooner rather then later.
Porter soared through his last week at Children's and got to come home before having to have his cranial reconstructive surgery. Porter was discharged on October 6, after a 33 day hospital stay.
Porter had his cranial reconstructive surgery on November 27 (Black Friday), we sat in the waiting room, anxiously waiting news, we were told the surgery would take about 2 hours; the surgery would involve removing three 1 inch sections of his skull, one on each side of his skull and the other across the back of his skull. We had a nurse come out and tell us that Porter was out of surgery and someone would be out to get us shortly after he was back in his ICU room. We waited over an hour, before we saw someone again, it was a nurse director that was just checking up on families. We asked her if she could please check on Porter Jensen, so she called back to the recovery room and cautiously informed us that Porter was having trouble coming out of anesthesia, that someone would be with us as soon as possible. An hour went by before someone came to get us, the ushered us into the ICU, I heard his moans before I saw him. It broke my heart to hear those small moaning sounds from him. I didn't recognize him at first, it looked like someone had replaced my little boy with a Chinese baby, his entire face was so swollen and his head was actually round, no longer long and narrow. In speaking with the doctors we found out that Porter had a very difficult time coming out of the anesthesia, because he was in so much pain he stopped breathing and they couldn't give him pain medication because the ran the risk of him falling asleep and stop breathing. Porter had Cranial reconstructive surgery on Friday and he was discharged on Monday afternoon. A child resilience is like that of no one else, they just bounce back, and Porter did just that.
After Porter's cranial reconstructive surgery we only had his Ostomy to deal with; we were in a balancing act, we wanted to do it before he started eating more then breast milk, but also wanted to make sure he was big enough and his intestines were given the time to properly develop. We went to various appointments to figure out the correct time; we had come to the agreement on a date, February 1 would be the date of his Ostomy take down surgery; he would have tubes put in his ears at the same time (Porter had fluid built up behind his ear drums, resulting from his Crainosynostosis; we thought after the cranial reconstruction surgery it would self correct, but it didn't).
February 1, we watched as Porter went down to surgery one last time. The surgery would take 2-3 hours, plus recovery time. I made sure to tell every doctor or nurse that would listen about the trouble they had getting him out of anesthesia the last time; they all politely listened to me and made me feel like my concern was valid (the best thing someone could do for a overly worried Mom). Porter was a rock star in his surgery. They did have to remove his appendix because it was in the way and he didn't need it, but other then that, he did awesome! He had surgery on Tuesday and he basically had to learn to digest his food all over again, his large intestine had to work. So once again we were waiting for him to poo... Porter started nursing at free will on Thursday, we had two incidents that involved vomiting up everything he had eaten; big cause for concern when it is not coming out the correct end. After adjusting his fluid intake we were on the go home list! We were discharged on Saturday morning, so Porter and I loaded up in the car and we headed South. We surprised everyone with our early arrival (we were told that it would be Monday or Tuesday of the next week before we would get to go home).
At 5 months old we finally had our baby whole and put together!

Right before getting taken to OR for Porter's c-section
Moments after Porter was born, getting his full workup done.

Porter one day old, full of tubes and wires

Daddy got to hold him on day 3

Mommy got to hold him too :)

Our little birdie got to go home
(he was just 5 pounds the day he got discharged)
Ben waiting for Porter's Cranial surgery to be done.
(He deals with stress and worry far better then I do)

This is what we saw when we arrived in his ICU room.

This was what he looked like on day 2!

Day 3, swelling is starting to go down.

Please excuse the "in your face" picture,
this is Porter the day before his Ostomy take down surgery
(The read oval on his abdomen is his Ostomy, where he poo'd from, into an ostomy bag)

Porter needed a little entertainment before his surgery.
Can you see the scar on his head from his cranial reconstruction surgery?

back from surgery, no more Ostomy and all the fluid in his ears is gone!

Porter had slight hunger pains after surgery,
Daddy tried comforting, since Mom smelt like milk!

Tube free and getting ready to get discharged!

I can't even begin to describe the different emotions that we went through during this time in our lives. I had a lot of breakdowns, a lot of pity parties, but I also create a bond with Porter that is incredible. Porter has a strong personality, I am fully convinced it is derived from the beginning of his life. He is such a special child and I am the luckiest mom in the entire world, because I get to experience his love! He is the most genuine person, he speaks his mind and he loves unconditionally. I am so excited to get a front row seat at what he has to offer life.

Someone once asked me what was the single greatest thing I have accomplished in my life...
My answer: Getting Porter healthy
How can a baby teach you so much about life? I can't answer that, but I do know that Porter changed my entire outlook on life!

 photo signature2_zps6mwhpu6d.png

No comments:

Post a Comment