Hello everyone, Jolee had a big day today, a day where she had to be a fighter and win. This morning we were told that the ECMO machine she is on was beginning to go bad and wouldn't last through the weekend. So they wanted to check her heart while off ECMO for 3 hours and decide if she should go back on a 3rd ECMO machine. The Doctor said that if her hypertension was still severe then most likely it would not get better with the 3rd ECMO. But if she showed improvement then the 3rd ECMO machine would be a good idea. After 3 hours off ECMO they decided that she was doing well enough to stay off ECMO for good. Since 3:00 this afternoon she has been off of ECMO and around 10:00 this evening she had the tubes in her heart that were attached to the ECMO removed. Jolee also had a chest tube put in on her god side because of fluid surrounding her lung. She is steady thus far but only time will tell. Her blood pressure dropping is still an issue as well as the hypertension returning. Her battle is just beginning and surgery is really not on the table yet because of the possibility of the hypertension coming back. I am going to spend the night with her tonight doing puzzles then Krista will show up in the morning to relieve me. I am off to grab some coffee! Good Night Joe

Just a few more thank you's to Marsha, Uncle Jon, Aunt Karen, Meridith and Davis. Also, Thank you to Grandma Carlsen. Love, Joe and Krista

Things have been pretty slow on ECMO the past couple days which is what we want. JJ is pretty swollen but they are working on this with diuretics and by adding a filter to the ECMO circuit to remove extra fluid (they think she's up about 1.5 lbs just due to fluid). The doctors want to work on the fluid issue for a couple more days and then repeat the echocardiogram to evaluate the pulmonary hypertension. JJ is now wearing a pretty lavender bow in her hair - JJ said we could add a picture of her with this once she's a little less puffy. Since JJ has been lying on her back and can't swallow, secretions build up in her throat, mouth and nose. The nurses suction her mouth and nostrils every few hours and you would not believe what comes out! When the nurse suctioned her nose, it looked like a jellyfish came out, it was unbelievable but I bet JJ felt much better. A special thanks to Mile Hill Chiropractic (free advertising) for the care package that we received today and will be gone by tonight. Thank you to everyone for your support and prayers. Joe and Krista

Dear everyone, It is normal for the ECMO to develop clots within the system over time. It usually happens in the tubes because it is a foreign body for the blood and blood has the tendency to clot. We knew there were clots forming yesterday, so at some point they would have to switch to a different machine. We arrived this morning and the doctor was making plans to switch the machine and it was a good thing because the current ECMO machine was at its limit. JJ was off of ECMO for 3 hrs. An echocardiogram was done during this time which shows improvement in her heart but she needs to improve more before ECMO can be discontinued. She is on the new ECMO and the doctors anticipate at least 5 more days before weaning her (this can take a couple attempts). Thanks to Aunt Val for putting up new pictures (by the way, the cute green dinosaur is Blake). Thanks to everyone for your support. Keep the prayers coming for JJ's pulmonary hypertension to resolve! Love, Joe and Krista

Hello, JJ opened her eyes for her father yesterday, they were as blue as her brothers. Even though they were open for a couple seconds it was great to finally see them. Her ECMO treatment is going well, she is resting like she should. Because her heart was working so hard it had gotten enlarged, but now that she is on ECMO it is getting back to its normal size. Usually while on ECMO, babies lungs deflate due to them resting, and on X-ray their chest is white. JJ's lungs are not deflating, which is a good thing because she still wants to use them. Since the heart is almost the size it should be and her lungs are still inflated, her heart has shifted a little bit back to the left with the stomach moving down just a tad. Oh, and the best part is that you can see lung on the left!! It is even more than they suspected which is great. Now as long as her heart can function off of ECMO I think she will be in good shape. We won't know for a couple days because they want her on ECMO for at least 6 days. The only issues with ECMO are brain bleeds (rare) because of blood thinners and clots within the machine itself. As long as those are kept in check, JJ can get off ECMO to see if her heart got enough rest. Aunt Lisa and Aunt Marsha are visiting today, hurray and Blake spent the night with us at the Ronald McDonald house. I think he enjoyed taking off mom and dads covers on the bed like he did at home. OK, I promise we will try to get more pictures. It is hard to leave the hospital with the shape she is in to put up pictures but since she is stable I will try. Thank you for your support. Joe PS There is a link on the list at the right to give a better description of ECMO.

JJ started her ECMO run around 1pm yesterday. It was a hard day. Her numbers had been doing so well and then it was so scary to see things keep going the wrong direction. It was also scary because there just happened to be another patient in pediatrics that needed ECMO and they were telling us this patient was sicker and that we would have to wait for them to be put on first. It worked out that this patient needed further testing and JJ started sooner than we expected. She looks so much better now though despite being swollen. They've decreased some of the meds that were paralyzing and sedating her. She was squeezing my finger this morning (melts your heart) and her eyes were moving around under her puffy eyelids. Joe is getting some much needed rest this am. He is hoping to spend more time with Blake today. He loves the air hockey table here at the Ronald McDonald's house and is pretty good at it. Blake was breaking our hearts last night as he left to go home with grandmas. Such an emotional day!! Pray for JJ's pulmonary hypertension to lessen and resolve over this rest period for her heart and lungs. Krista

Hello everyone, There was a change last night and it wasn't a good one. We were told that some CDH babies have a honeymoon period and then go through some hard times. We were hoping that it wouldn't happen to us, unfortunately it did. Last night at 12:00am Jolee was doing fine. She then developed a slight fever and her vitals were not looking as good (lower oxygen levels and blood pressure). Blood cultures and sputum cultures are being done to rule out infection. Jolee had a echocardiogram (ultrasound of the heart) and she still has significant pulmonary hypertension and one of her heart valves is regurgitating blood. They added nitric oxide to help her lungs, antibiotics for possible infection as well as ativan and morphine drip to keep her calm and sedated. After some of these changes, her blood gases are looking better and the white count is looking negative for infection. However, if things were not to continue to improve then she will be considered for ECMO. It will be a long challenging night and next couple days with the possibility of surgery on Thursday if she does better with the changes. She is still daddy's beautiful baby girl. Thank you for staying in touch Joe

Hello, We had some special visitors yesterday, my mom's cousin Bernie, his wife Rosemary and daughter Katie came to visit. They also brought LEMON BARS!!!! It is always nice to see and visit with family. Another surprise visit was my sister-inlaw Marsha and my niece Sidney. I knew that she was trying to find a way to travel the 3+ hours, but I turned around and there they were. Blake was soooo excited to see his baby cousin. It was nice for him to see someone from home. Jolee had an uneventful day, which is a great day because nothing went wrong. She continues to be stable, but of course they increased her Dopamine because that darn Blood Pressure doesn't want to stay put. Last nights nurse said she attempted to rip all of her lines out so they had to give her some adevan(Sp?) to keep that from happening. We will try to get more pictures posted because she looks a lot different then the first posted pictures. Take Care Joe

Hello everybody, This is Joe, I was repremanded(sp?) for being corny the last time I wrote so I promised Krista I would be better:). I went in to see Jolee this morning, because I am taking Blake out for some father/son time. She had a pretty quiet night. Some positives are that she breathed 21% oxygen level all night which is the same level of oxygen that we breath everyday. Before, they would have it set at around 40% so she is making progress. Also, they turned down her vent a little bit over night and for now she is tolerating it. They dropped her morphine level down too. Jolee does not handle touch well. So, the nurse last night taught Krista and I how to just put pressure on her with are hands so it feels like being in the womb again. All her blood gases and such have been good so far. Her blood pressure is slowly stabalizing, they increased her Dopamine just a tad. I forgot what it was like to get up every couple hours, Krista is pumping quite a bit now and last night the alarm was going off every time I shut my eyes. I will get used to it again. Thank you to everyone who is keeping up with us, we love the support. Take care Joe

She's here and we love our new baby girl! We just finished visiting her tonight and I got to help take JJ's temperature and help change her diaper. She's doing well but is still adjusting to life on the outside and doesn't like to be tinkered with very much yet. It's hard to wait for all the things we want to do like holding her but she's setting the pace. The neonatogist said we'll probably just keep doing what we're doing for a few days and surgery is likely later next week. We have had such good care!! I was discharged this morning. I'm feeling sore and tired but hanging in there. I was very anxious for the delivery. I was induced and not sure what to expect with the induction and with JJ after she was born. Things progressed very fast (I didn't realize it at the time though). I had a natural delivery with Blake and was attempting one with JJ. I requested an epidural and got one - but by the time it was placed I had just had the test bolus and then it was time to push. JJ was delivered, gave a little cry and was whisked away. The nurses were great. As soon as they could, they got me in a wheelchair to see my baby. Better start working on the sleep department before getting too far behind. We checked into the Ronald McDonald house which is on the same campus as the hospital. It's wonderful!!! Eventually we'll probably go back and forth from my mom's house, but for now we want to be as close as possible. OK, I'm really going to bed now. We'll keep you posted. Krista