Update 7/26/11

Sorry it has been so long since I have given you all an update. Stephen is doing very good. We were given the green light to take out his feeding tube this week after letting the doctor know that we were not really using the feeding tube and that he is eating well even though it is not the entire 95ml's. Sometimes he eats that amount, but not always. Today his weight check was good so we go for another weight check next Tuesday. I am so glad the feeding tube is out, I hope that it stays out because it gives him an awful cough and he cries and is so fussy when it is in and when we have to put it in or take it out. We are using half breast milk ad half fortified formula for the extra calories. He is absolutely adorable and so funny. He has started to ooh and ahh. He smiles a little bit too. His personality has really started to develop more this last week. He loves smiling at his Daddy everyday when he gets home from work. It just melts my heart and brings happy tears to my eyes. He has also been doing really well at night. After we got home from the hospital he was not on a schedule and wanted to stay up all night. So I have been putting him to bed about 15 minutes after he eat throughout the night and it has really been working. Hooray! The one thing I do like about the hospital is that his feeding schedule is on the dot every 3 hours or a few minutes sooner. I think he is going through a growth spurt because yesterday he ate so much and every 2 hours. I love this breast feeding workshop we are going to every Friday. It is a great social outing I look forward to and very helpful. He takes to my breast usually at least once a day and when he looses his latch gets really upset and can't focus so that is when I give him his bottle. So we are working on it since he was not able to do it at the hospital. Every therapist that worked with us there said it was too traumatizing and gave up. Go figure because now at 10 weeks Mommy and the breast feeding workshop is making such great progress. I am so proud of my little Bubbie. He also got circumcised last week and he did great. Everyone who has seen it says it looks absolutely  amazing. He also has his post op appointment and she said he is doing really well, he does have a herniated belly button, but should hopefully correct by the age of 5 and if not it may require surgery. She also wants to watch him closely this next year to be cautious since most re-herniation ocurr within the 1st year What a champ, he has been through so much and he is really making progress daily. We are so lucky to have this amazing little miracle in our lives. I am so in love with him. We have come such a long long way.

6/07 The road to recovery

Well Stephen was doing really good. They started him on feeds last Wednesday at 10cc's and were going up 3cc's every feed, they got him up to 40cc's. On Friday he was not interested in the bottle feeds at all. He wasn't too thrilled to begin with, the sucking and swallowing is sure hard to coordinate after beind intubated and other things in your mouth for so long and it is not like 2nd nature they have to learn it. He also was sort of curious with his passy, but when Friday came he wasn't. So they put an NG tube in to give him what he wouldn't finish. After they put the NG tube in he wouldn't take the bottle at all or his passy...So Saturday he was throwing up his feeds and I had a bad feeling about it. Sunday morning when I went in to see him they said he threw up more in the night before and they think he aspirated! So they took away his feeds and put him back on IV nutrients. They also said he was wheezy and the x-ray they took of his lung looked hazy so they did a bunch of cultures to make sure he doesn't have pneumonia. They also had to increase his oxygen rate and they went back up to high flow. So far all his cultures have been negative and the breathing treatments they added back on have been helping. He is being kept pretty sedated. I have been getting really irritated with that because I haven't heard him cry in like 3 or 4 days and babies are suppose to cry. At least a little. I feel like most of the Niccu nurses aren't use to much crying because most of the babies are intubated etc...so when he does cry for like 5 minutes they just want to dose him again and knock him out again, I sure can't wait for our primary nurse to come back from her days off because she holds Stephen and conforts him when I am not there. All these emotions aren't helping much either. I feel so helpless and I just wish I could make it better but I can't. I know he won't be there forever, but I just want my baby boy to feel better so we can go home and be "normal" whatever that is.

5/26 Day after surgery

Today was a good day for Stephen Jr. He stayed comfortable for most of the day. During my morning visit I got really upset although I didn't tell the nurse I was. When we got there his lip was all crusty and his suction tube was stuck to his lip! So I told her about it and told her to clean it off and when she did it wouldn't come all the way off and she said that if she tried to get the rest of it off it would tear his lip and she didn't want to make him bleed...like really! How hard is it to check my baby and moisten his lips every other hour? I know it is not completely her fault I also blame the night nurse because the crust on his lips were so thick it was obviously neglect or over looking from both shifts. So after she wet his lips he started moving his cute little tongue and sucking his suction tube. He loves sucking that thing and it is too adorable. I also had a little emotional breakdown of tears right after that because he was bringing his legs up to his chest and quivering and you could tell he was obviously in some pain and his heart rate went up a bit. I can't stand seeing my little baby in pain. So I told the nurse that he was in pain so she gave him a bolus of his Fentanyl for pain. It kicked in a few minutes later and he closed his eyes and went back to sleep.

I really liked his night nurse tonight, but happy his nurse in the morning who really likes him and requested to be his primary nurse when she is working is there tomorrow. She talks to him and rubs him and really takes good care of him when his Daddy and I are not there, so that is a really nice comfort for the both of us. I overheard a respiratory specialist saying how surprised she was and how great he was doing for a CDH baby because he has 2 lobes of his left lung and how she wanted to extubate  him tomorrow. It is mostly common for CDH babies to only have 1 lobe, so Stephen has been extremely fortunate so far. His night nurse told us though that the respiratory specialist are faster to extubate and the surgeons and doctors are a little slower and they sometimes bump heads on how fast they take away the breathing assistance. But Stephen is doing really good but they need to manage his pain first and they kinda forget that he just had surgery yesterday and still has to deal with the pain so it would be the best to leave him on another day or two because the pain medication cause respiratory distress. I am so anxious to see when those tubes come out so we can see his entire face. Tonight when I left he was really comfortable and sleeping great.

5/25 The big day, SURGERY

Stephen had surgery today, Wednesday 5/25 at 9:30am. He was in surgery for about 2 hours. The longest 2 hours of my life so far...Dr.Kawaguchi his surgeon came out after the procedure to explain what she did, and how severe the defect was. There was actually more organs up in his chest than we initially thought.his stomach, small intestine, spleen and part of his colon was up in his chest. The reason it was not as bad or problematic in the beginning like most CDH babies is because for some reason Stephen had a "protective sac" that did not allow those organs to move completely or more up into the chest cavity. Instead of using the gore tex patch like most cases they were able to use stitches and stitch it up and had to stitch an area around his ribs as well..He also surprisingly to the surgeons has 2 parts to the left lung. Usually with CDH they only have 1 part of the defective lung. The doctors and surgeons are very optimistic for Stephen's recovery as so are we. I always had the feeling that our beautiful baby would be okay, but there is always that unsettling lingering feeling in the back of your thoughts...

When Stephen came out of surgery he was very sedated and looked great. He had a basketball and football gauze patch covering his incision. He was very sedated so he had no pain and seemed to be resting comfortably. His vitals, blood gases, and assessments were all really good and towards the end of the day and in the middle of the night is when they started to hear good sounds coming form his bowels.

5/24 Surgery, the big day we have been waiting for is tomorrow

So finally the big day we have all been waiting for is tomorrow. He will be 9 days old. Usu\ally they prefer to do surgery a little bit sooner, but we had a few hiccups that prevented it from running so smoothly. When Stephen was born and during transport they put him on Dopamine for his low blood pressure. He first began on a 14 and they slowly weened him down to nothing, but it was a slow process as his body had to agree with it. Then at day 4 they noticed secretions that were yellow and it came back that it was a gram negative positive. Meaning that he had an infection in his lung! So they started right away with 3 antibiotics because they weren't sure exactly what kind of bacteria he had. This was so scary on top of everything else. We knew we would have up/down days, but this one was difficult because it was the first "down" day we had experienced. Stephen also had to get photo-therapy for jaundice due to belly-reuben  (sp).

So between days 4 and 8 he has improved so much. He opened his eyes for Mommy & Daddy at day 6. It was the most precious thing. We took our first family picture together and video of Stephen having hiccups and Mommy helping change her first diaper ever. I was so tense and still am when I help with the diaper changes because of all the lines in/out. Stephen has become way more irritable and fussy. They have had to go up on his pain medicine during the day and night to keep him comfortable and from moving around so much. Today he cried and cried and it made me so emotional to see my baby like that. He doesn't make any noise, b if you look at his face you know he is crying. Daddy talked to him and sang him songs while holding his feet, chest and top of his head. Stephen calmed down so much and it was so beautiful to see my husband as a Daddy with comforting his son the best he could. The nurse also put a sock on is hand because he loves trying to pull out his tubes which is so scary! He is completely aware that there are things in his mouth and throat that are irritating him and making him mad. Today he was doing the cutest thing with his feet. He usually puts his left foot on top of his right foot when he is sleeping or hooks his left toes on his right foot and also curls up his toes really hard. It is absolutely the most adorable sight. He was also back on photo therapy today ans looked so much better compared to the lines on his face where the sunglasses cover and we can see how yellow he was.

The doctors and nurses are very optimistic that he will do great during surgery and after. They said they have not seen many babies do so well before surgery so they are very interested in seeing how severe his defect is and the details of it.

5/19 Got to see our baby boy!

The best feeling was when you lay eyes on your child in person for the very first time. I can't describe the feeling, it is just simply amazing and out of this world. In our case it was a little different. Our baby is sick and hooked up to all these tubes, machines, and equipment. You can't hold your baby like you would a healthy baby. But with all of that said, it is still the best feeling knowing that you created that baby and he is all yours.

The first day I saw Stephen was when he was 3 days old. He looked so strong and so beautiful. He was very sedated and on a good amount of pain medication, so he was very comfortable. His face was very swollen from the medicine too. All of his fingers and toes are absolutely perfect. He hasn't opened his eyes yet at this point and  we can see his bottom little lip but not the top due to the ventilator. Stephen and I sang him his song that I always sung to him while I was pregnant and talked to him and told him what a strong boy he is and how proud we are of him for being such a great fighter.

Day 3, Stephen Jr. is on about a 6-8 level of Dopamine, Fentanyl 1.5, and Versed 1-2, and the ventilator setting of oxygen is at 48%. No Nitric Oxide or ECMO has been needed at all at this point which we are extremely happy about.

Labor & Delivery and Discharge 5/15-5/19

We arrived at the hospital on Sunday 5/15. I was already dilated to 2cm. The doctor started the Pitocin (medication to make labor start) right away. Within a few hours I was at 3-4cm, so after that I received the epidural. Due to previous back problems I was not able to have it placed where they usually place them. They went a little bit higher. So I was numb and pain free for a good 6-9 hours. I then became really uncomfortable. Slowly I started feeling moderate pain and discomfort. The contractions! So now it is Monday, I am extremely tired and exhausted from everything going on and the pain. So throughout the time labor was progressing I had to receive 3 straight pushes of the epidural medication since I was feeling everything from about an inch below my belly button all the way down. It was awful! So finally on Monday around 3pm I was 10cm and ready to push. We began pushing and the doctor said I was doing great but every time I pushed or had a contraction my baby's heart rate went down. He was in distress and was still very high and we had already waited at 10cm for a few hours before pushing. So the doctor asked me if I wanted to wait 30 minutes to see if he would come down or if we wanted to go for the c-section. I knew the best thing for our baby would be the c-section. We had already prepared ourselves for what we knew of, which was his birth defect and we did not want to take any chances of being selfish or careless and for something else happen.

We went straight to the OR and the c-section started. I told them that I still was not numb and I didn't want to be in any pain. The doctor gave me really good medicine that basically put me out of it. I remember going in and getting the medication, getting scrubbed down and prepped , and vividly when my husband came in to sit next to me and the team of doctors standing against the wall waiting for the baby to be delivered. The rest is a a funny little story I will always be able to tell. I was literally in Mario Bros. land running around to techno music with a vision of the video game screen and all. I wonder to myself now, why it was that particular game or why it was even a game at all, but I will never know. All I do know for certain is that I am happy I have to recollection of pain or being terrified.

After the baby was delivered the team of Children's Hospital and Hollywood Presbyterian doctor's had him in the Hollywood Pres. Nicu where he was stabilized enough for transport. The entire process from delivery, being stabilized for transport, then being transferred to Children's Hospital right next door took about 8 hours total until my husband could see him.

I was in the hospital recovering for 3 days. It was the hardest 3 days not being able to see my baby boy. I knew he was receiving the very best care he possibly could and Daddy got to visit Stephen Jr. whenever he wanted to. The pictures that I was able to see really helped me mentally and emotionally until I was able to see him Thursday When I was finally released.