JoJo's Journey with CDH: September 2014

This is the story of Joseph's beginning:

We found out we were pregnant with our 4^th child in February of 2010. We had not planned on having another child, so it came as quite a surprise. In March I had heavy bleeding and cramping. Turned out to be a blood clot above my cervix, and was put on partial bed rest. On May 20 we did a second sono to see if the clot had resolved itself. I tried for 3 days to get the doc on the phone to see what the results were. Finally the nurse told me just to come in, so he was forced to look at my sono. May 25 I went in to see my dr to get the results from the latest sono, our baby was going to be born with Congenital Diaphragmatic Hernia (CDH). He said to stay positive until we had seen a specialist. Before we had the diagnoses or even knew it was going to be a boy. I believe God wanted me to know that Jo was going to be born with challenges. He sent me a dream, that our baby was a boy and we were in a hospital room and he wasn’t breathing. So when the dr said to stay positive, I already felt the truth in my heart.

May 26, 2010 we met with a high risk ob specialist in Lubbock Tx, Dr Hales. He performed a 3D sono and it confirmed that our baby boy would be born with CDH. We sat in the consultation room for what seemed like years going over what exactly CDH was. We left still not completely understanding. On our way home that day just as we were getting close to Seminole Tx, the tire on our Yukon just about blew, if not for that kind man seeing it and stopping us. He helped us get to the nearest tire place and stayed to make sure we got help. It was the icing on the cake. All I wanted to do was go home and shed the tears I had been fighting all day.

June 15 we met with Dr Jane Goldthron, surgeon that would perform Jo’s surgery. She seemed very optimistic about the whole thing. The survival rates they had at their hospital were 40-60%, depending on the severity. She asked if we had a named picked out. She was very pleased with the name we had picked. These babies need strong names is what she told us. The summer pasted with lots of Dr visits for all, Getting our oldest ready for his first day of school ever and just hanging out. Before we knew it September had arrived.

September 14, we had a visit with the Dr Hales and were checked in to the hospital. They placed a medicine in my cervix to start the process of thinning it out. On September 15, at 7:00 am they started the induction process. I was confined to my bed so they could monitor Jo’s heart rate very closely. When he started talking of breaking my water, I refused to let him until they gave me an epidural. I know from experience what happens when they break your water at not even 3 centimeters dilated, had that done with my first. It was not a fast moving labor like they all really wanted it to be. But it progressed a little each hour. We met not one, but 2 teams of NICU personnel while we waited for Jo to make his grand entrance. The day shift and the night shift. Dr Carroll was his neonatologist, who was there every step of the way until discharge.

8:55 pm Joseph, all 7lbs 7oz of him, made his grand entrance into this world. For a brief moment they held him up so I could see and he let out the sweetest cry. They had told us to expect him not to but he showed them! They got him intubated and I got to see him for one more second before they whisked him away. His daddy went with them while I finished up in the delivery room. At 3 am Drs Carroll and Goldthron came to our room and said he’s not doing well at all. The only option left for him was ECMO. They said he’s to sick (blood gases were at a 230) for it, but we want to give him a chance anyway because he’s a fighter. He had to move to PICU for ECMO. When I went to see him for the first time, he looked like a beautiful healthy baby that just needed to be scooped up and held. September 22, they started trialing off ECMO, he only lasted 5 minutes at a time. They said he could no longer be on it due to having bleeding in his head. They wanted to do surgery to fix his PDA in hopes that it was the cause of him needing ECMO. We waited around all day for it but emergencies with other patient’s kept happening.

September 23, is a day forever burned in my mind. The casual and unhurriedness of yesterday seemed gone and I had not gotten the memo. I arrived thinking Jo will go into surgery get his PDA fixed and be one step closer to repair surgery. Boy was there a big shock waiting for me!! His surgery, that was not top priority yesterday, had become an emergency. My husband was not there and for some reason the severity of the situation was not registering with me. So I told him he didn’t need to be there all should be fine. He went back for surgery and the kindest, tell you like it is, nurse came to the waiting room and tore my world apart. She asked if my husband was on his way, confused I replied no should he be. She took me by the shoulders and said “Susie Joseph might not make it out of surgery or be able to survive without ECMO” For the first time in 7 days the reality of how sever the situation was hit me and I broke down. The nurse called my husband and he got to the hospital as fast as he could. I remember my mom taking me in her arms and telling me maybe it would be best if God called him home. Those where not the words I wanted to hear but the very ones I needed. All throughout my pregnancy when the bad days came, I would ask God if your will is not for Joseph to live please take him now, before he has to suffer. So in that waiting room, with my momma holding me tears rolling down both our faces, I told God he is your child and if it’s your will to take him home, I will find a way to accept it. When surgery was over my husband, my mom, my sister and I all went to his room to sit with him. The PICU Dr on call that night said “we will do everything we can for him but ECMO is off the table.” All I could do was sit at the head of his bed, rub the top of his beautiful head, whisper sweet loving and encouraging words to him and wait. 1, 2, 3, 4, 5………… the minutes turned to hours and though he was not out of the woods, he was stable. His surgeon came by and told us they would be doing his repair surgery the next morning.

September 24, they did his hernia repair. They had to use a gortex patch to patch his hole. His surgeon said everything looked good inside of him and he had more lung then they thought. He did relatively well those hours after the surgery. The next day as we were heading home, they called and said he was having seizures. They immediately put him on meds, and ran tests to see what was causing them. He continued to have them off and on for the next couple of days. One seizure he had was so severe that his heart stopped and they had to do chest compressions. They were finally able to get them under control. He hasn’t had any problems with it since then. They said it was most like just a side effect of ECMO and they never showed up on the EEG machine’s readings.

October 4, Was the first day I got to hold him. It was one of the best days of my life. I held him for 4 hours and I was even able to change his diaper for the first time. On the 9 he required his 3^rd surgery for a bowel obstruction. On the 13 he was finally stable enough to be moved back to the NICU, he was almost 1 month old. On the 14 they tried for the 2^nd time to feed him, the first attempt he got a bowel obstruction, this time it only lasted a little while. On the 22^nd I gave him his first bath. On the 27, they put him on c-pap, he hated it with a passion, only lasted for 24 hours. Dr Carroll said he had never seen a baby fail so miserable in his life. He went on the conventional vent. He gradually got worse as the days progressed. They tried one transfusion and it seemed to help. On the 31^st he seemed to be declining by the hour. They started another transfusion but he just kept getting worse. This was one of the many days that we saw what an excellent team we had behind us. It was as hard on the Dr to see him struggling, as it was on us. Dr Carroll did everything he could think of to get him better. They called in to the other hospital for a drug that was an attempt to get his pulmonary hypertension better controlled. Then he was placed back on the oscillator vent, his lungs had went back to the way they had been when he was born. All that and a night of rest seemed to be just what he needed.

November, third time was finally the charm on feeds. He finally was able to stay on feeds for more than a few days at a time. Most of the month was spent getting bigger and weaning his vent, meds and increasing feeds. On the 26 Dr Carroll started talk of extubating him. The following day as the nurse was putting him in a new position he pulled out his tube. Since that was the plan for the day anyway, they left it out and put him on high flow nasal canulas. With the tube gone we got to try bottle feeding, he did not appreciate it the first time.

December 3^rd we tried again and he took 15 cc from the bottle. He continued to do well with feeding. On the 9^th he got his first big boy bath. The NICU is not exactly equipped for big babies like him. They had to search for awhile before they were able to find one big enough for him. He graduated to the floor this month and that marked the end of bottle feeding. On the 29^th they did an MRI and placed in a g-tube for feeding. The following months were spent lowering meds, lowering oxygen and flow, getting feeds up and trying to get him over his very severe oral aversion. On Feb. 22^nd he was placed on low flow nasal canula’s. I was finally able to find a pacifier that worked great for him. It was thinner then regular ones and I think that made a big difference for him. His primary nurse finally figured out a way to get him to be interested in bottle feeding. We would leave him in his bed to keep stimulation as low as possible. Prop him up high and he would at least latch on, which was more than he had done in months.

March 2^nd he got really sick, I was not with him on that day. The next day when I arrived, he was to the point where he had needed an I.V. because he was not even able to keep clear liquids down. Dr Carroll called for an upper GI study. We went down to the lab and got the dye and first sets of X-rays done. We got to his room and settled in. They came for another X-ray, at this point Jo was miserable nothing we did eased his pain. Kelly helped me get situated in the rocking chair with him. She then went to see the results of the latest X-ray. I sat there rocking Jo and wondering what was taking her so long to return. When you’ve been in the NICU as long as I had at this point, you know they get caught up helping others or sharing stories. But this time it was not one of the above mentioned things that was keeping her. No this time she was working on composing herself. You see when you’re in the NICU you become family and when one hurts, they all hurt. As I sat there rocking Jo and hoping he would feel better soon. I watched as first Kelly appeared through the door, then Dr Carroll and finally by Shelly the charge nurse of the day. My heart began to sink as they approached us and pulled the curtain. Dr Carroll knelt down beside us and placed his hand on Jo’s back. While rubbing his back he said “Jo has re-herniated and he will have surgery first thing in the morning.” All I could see in my mind was that precious baby from 5 months ago, laying so helpless and all the struggle’s he had faced. We were in the home stretch and now we would be here for months, maybe even years. I was devastated to say the least. He had surgery bright and early the next day. His patch had come undone from where she had sewed it the first time. She was very surprised with how healthy he looked on the inside.

Those feelings and thoughts I had when they said he would require another surgery, proved to be incorrect. 16 days after that surgery and 187 days since his birth, Joseph finally came HOME on March 20, 2011. His journey after coming home has not been smooth sailing, we have faced many ups and downs, and probably will face many more. But today, as we have just finished celebrating his 4^th birthday, I can say that for a child living with CDH he is doing AMAZINGLY AWESOMEJ

JoJo's Journey with CDH

Monday, September 22, 2014

Birthday!!!

Tuesday, September 16, 2014