My husband and I found out that I was pregnant with our second child on July 17, 2006. I was having some problems and didn’t know that I was expecting until a blood test confirmed it. Our little baby was a rascal from the start! Over the next couple of weeks we had several doctor appointments and ultrasounds to confirm that the baby was ok. In the end of August I had a lot of bleeding and we thought that we were losing our baby, but again, an ultrasound confirmed that the baby was ok. In my first pregnancy I had gestational diabetes, because of this I was tested early in my second pregnancy and was diagnosed with it again. I was easily able to control my blood sugar with diet. My pregnancy continued and was rather uneventful for the next couple of months.

During the pregnancy I declined any tests to check for birth defects. My husband and I knew that we would not terminate for any reason and it was my doctor’s opinion that since I had so much bleeding during my pregnancy, it was likely that we would get incorrect results on these tests. I had an ultrasound at 21 weeks that was completely normal and we found out that we were having a baby boy. We chose the name Owen James for our son.

DIAGNOSIS

Our story took an “exciting” turn in the end of January. I went in for a 32-week ultrasound to measure the baby to make sure that he wasn’t growing too big due to my gestational diabetes. His measurements were fairly normal in the ultrasound; I on the other hand was measuring big. At 32 weeks my belly (fundal height) was measuring at 40 weeks or full-term. This was due to polyhydramnios, or excess amniotic fluid. My OB checked with a high-risk OB in the area and he suggested that I come back in 10 days for another ultrasound. By the grace of God we had this additional ultrasound. It was in this ultrasound that Owen was diagnosed with a Congenital Diaphragmatic Hernia (CDH). Our local hospital is not equipped to care for this type of birth defect. If the CDH had not been detected prior to birth and I had delivered at our local hospital, Owen would have been in respiratory distress and been either life-flighted or taken by ambulance to the nearest facility which is two hours away, while I remained in our local hospital.

I remember knowing that something wasn’t right during the ultrasound. The ultrasound tech was usually very chatty with us. I asked her some questions and she wouldn’t answer. My OB sent us right away to a specialist and they confirmed the diagnosis and said they wanted us to go to Portland (which is about 2 hours from our home) to deliver at Legacy Emanuel because they are equipped with ECMO which is sometimes needed with CDH babies. This may sound weird but I was more upset about having to deliver away from home and away from my doctor. I don’t think I took the diagnosis that seriously and I didn’t know fully what the possibilities were.

CONSULTATION IN PORTLAND

I did a bit of research but not much and we had consultations with doctors in Portland. Our consultation in Portland was a bit of a twilight zone experience for both Danny and me. I had great conversations with the nurses on the phone prior to our visit and one of the doctors even made a point to see us during our visit so that we wouldn’t have to make a return trip to see him a different day. I was quite shocked when we ended up with an ultrasound tech who implied that the hernia had been missed by our “hometown” doctors at the 21 week ultrasound. We also had a doctor who found that Owen had an undescended testicle. According to this doctor, that meant he had “multiple abnormalities” which pointed to a chromosomal defect and did an immediate amniocentesis to determine how “seriously” they would treat our baby. My husband and I were in absolute shock at this point. We had not planned on having an amniocentesis during our pregnancy, no results would have ever made us terminate our pregnancy. We were in such shock and felt railroaded into the procedure. I still have mixed feelings about having done the amnio, on one hand I wish that I had better defended my baby and myself, but on the other hand I was very thankful to have the reassurance of the results and be better prepared for his birth. Luckily, because we were diagnosed at 33 weeks, it was never even suggested that we terminate our pregnancy, however, many women who are diagnosed at a much earlier time in their pregnancy do feel some pressure to consider termination.

Later in the day when we went to see the pediatric surgeon, he said that undescended testicles are very common, period, plus with a baby with CDH, you tend to see multiple organs that just get “sucked-up” and he was sure it wouldn’t be a problem. We headed back to home not quite sure whether to be relieved or scared. In the couple of weeks before we were to leave for Portland we got phone calls from the genetic counselor letting us know that all of the results for the amniocentesis were normal and that they had found no chromosomal defects in Owen. We were able to prepare for his birth without the extra worry of whether he may have a chromosomal defect that would be incompatible with life.

WAITING

Time went so fast and so slow at the same time. I had those few weeks to mourn the birth experience that I had hoped for. Owen’s diagnosis was a right-sided Congenital Diaphragmatic Hernia (CDH). This type of hernia allows bowel, liver and other tissue from the abdominal cavity to move into the chest cavity and it can prevent proper development of the heart and lungs. To have the hernia on the right side is more rare and in our case it was better to have it on the right-side. Because of the late diagnosis of his hernia (most are diagnosed at 20 weeks) it did not seem as severe as it could have been. He had bowel in his chest cavity and part of his liver, which also acted as a plug in the hole. His heart wasn’t impacted nearly as much as it would have been if the hernia were on the left side. We would not know what his lungs looked like until he was born and his repair surgery was complete.

In the time that we were waiting for Owen to arrive, I compiled a notebook of scriptures and quotes to encourage me to keep my eyes on God and to give Him the burdens and the worry. This helped me so much in easing anxiety. I took it with us and had it with me everyday in the hospital to read while I was pumping milk for Owen. We also gathered a list of email addresses so that we could send updates to family and friends and we were amazed to find that we had nearly 100 people that we were updating on Owen’s condition and who were praying for us and our little guy. Many people forwarded our updates on to their family and friends. We firmly believe that these prayers and the grace of God are what got us through this experience.

We went up to Portland on Monday, March 5 and stayed in the Ronald McDonald House the night before my c-section. There was a chaplain that came and prayed with my husband and me and for Owen and then I went into operating room.

OWEN’S ARRIVAL

I didn’t think I would get to see Owen after he was born but the doctor made sure that I did. He didn’t cry, he just gurgled and he was pretty blue and then they just took him away to the room next-door. My husband was able to go with him and go back and forth between the two of us. The team of doctors and nurses immediately intubated Owen and sucked out any fluid in his stomach and put a line in his umbilical cord. Whenever my husband left the room to be with Owen, the anesthesiologist would stay close to my head and reassure me and encourage me that everything was ok. It was one of the many blessings that I experienced during this journey.

I went to recovery and on the way from recovery to my room they wheeled me (in my bed) into the NICU to see him. I had no memory of it until I saw the pictures later. Despite the tubes he looked so strong and healthy but he still had bits of goo and blood on him because they didn’t want to touch him too much and stimulate him too much by cleaning him. The next couple of days were a blur.

OWEN’S HOSPITAL STAY

Owen’s repair surgery was scheduled on his third day of life. Owen did amazing and they were able to repair his hernia (a 5 centimeter hole) laproscipcally. He only had four small incisions, 3 that were 3 mm and one that was 5 mm. We found that Owen’s left lung had developed normally and that his right lung was 2/3 normal size.

The rest of Owen’s stay consisted of various machines and tubes to help him breathe and eat on his own. I was able to hold him for the first time when he was one week old.

Owen was in the hospital for a total of 3 ½ weeks. The longest part of his stay was working on teaching him to eat. My “theme song” throughout was the song/verse “I Lift My Eyes”. Walking back and forth from the Ronald McDonald House to the hospital and while I was with Owen I would sing it over and over in my head. “I lift my eyes up unto the heavens, where does my help come from? My help comes from YOU maker of heaven.” It gave me such strength.

Owen has had follow-up appointments with his pediatrician here in town and also with his surgeon in Portland. His recovery has been amazing. His lungs are so strong. He has had a slight gross motor skill delay, which is not surprising since he spent almost a month in the hospital.

While the doctors may do tests to try and “predict” how a CDH baby will do when he/she is born, there is just no way to know until they are born and show how much they are able to fight. Every baby responds differently and many that you wouldn’t think could make it do!

Darcy writes about life with Owen at her very own Ittybitty Blog.