Weekend Update

Emma is having a hard time adjusting to life on the trach. The doctors are trying to keep her very still because when she moves, she has more spells. Saturday was a very rough day as she consistently started having low blood oxygen levels. Her heart rate was dropping as well. The pulmonary specialist ordered her a custom trach just in case. In addition, Emma has been agitated because she has pneumonia. Alissa and I were feeling very discouraged because we though that she was going to be getting better at CHOC, not worse. The doctors assured us that it is not unusual to see this when a baby first gets a trach. We just pray that this part of Emma’s treatment passes soon. It has been the roughest part yet. Emma has also been having a hard time digesting her food and they have cut back on her feeds. Since Emma is not recovering quickly from the trach operation, there is no reason to transfer her back to CHOC Mission since she will be having her heart surgery in 2 to 4 weeks. That means another month or more living out of our suitcases. We went and visited our nurses and doctors at Mission yesterday afternoon for some love and support. It was very nice to see our extended family. Who would have ever thought that we would actually miss the hospital? Please continue to pray for Emma’s healing and for our stress levels.

Surgery Successful

On Monday afternoon we were informed that there was an opening in the operating room on Tuesday so they wanted to schedule Emma for her tracheostomy. We arrived at the hospital at 9:00 am and they were ready for her already. We were taken through a tunnel under the street from CHOC to St. Joseph’s. At that point we sat in a waiting room while Emma had her surgery. It when very well and now she has a trach in her neck. For the most part, she has been adjusting to it all very well. She had a couple of minor spells yesterday and last night, but hopefully that is just a part of it. After the surgery we spoke with one of our cardiologists and he told us that if Emma can breathe well on her own with the trach that we will wait a few months to have the heart surgery. That means a lot longer in the hospital, but it also makes for an easier surgery. The plan for right now is for Emma to remain in Orange for a week until the first trach change is done by the surgeon. If all goes well until then, she can be transferred back to Mission as early as next Tuesday. We are becoming more comfortable at Orange, but miss our nurses at Mission.

Extremely Long Weekend

Last weekend was an extremely long weekend. When Alissa and I arrived home on Friday after work, we had a message from Dr. Hanten at CHOC Mission that Emma was going to be transferred up to CHOC in Orange to have a bronchoscopy. Emma has been doing so well on the ventilator’s minimal settings that they wanted to take her off of it. But, before taking her off of it, they needed to check further down into her respiratory system to see if there was a reason why she crashed the last time she was taken off of the ventilator. If everything looked good, they would monitor her for 48 hours and then transfer her back to Mission until she could have her heart surgery. On Saturday we were told to arrive at the hospital at 10:00 in order to sign the transfer forms and get ready for the ambulance. They finally arrived just before 3:00. Emma wasn’t happy about being moved, but she finally settled down with the help of some sedation. When she arrived at CHOC in Orange, she had some of her typical fits and they had their hands full with her. They were supposed to do the bronch Saturday evening, but decided after reading her history to wait until the morning when everyone would be fresh and they would have more people on hand. She was scheduled for the procedure at 9:00 and just before she started to have an episode. She was gasping for breathe, but fortunately they were able to stabilize her quickly. At that point we went into a waiting room until they did the procedure. About a half hour later the pulmonologist came in and told was happened. They put a scope with a camera down her nose and looked around her airways to see if there were any blockages. Unfortunately, there was. She has a floppy airway that clamps down if she doesn’t have something keeping it open. That is why she has been OK on the vent with minimal settings, but crashes when she is off. The floppy airway is in her trach, and even with the vent, it was not always staying open if she wiggled too much. As a result, Emma is going to have surgery this week. She is going to have a tracheostomy. For the next 6 to 18 months, she will have a trach tube in her neck to keep her airway open. Over time, as she grows, she will no longer need it. Obviously, this was not the news we wanted to hear. I was however relieved to finally know why she crashed 4 weeks ago. I have been so stressed thinking it might happen again. After doing the bronch, the doctor put a new breathing tube down her nose instead of in her mouth. This will keep it more stable and he was able to place it in exactly the right place because of the scope. Today the ENT surgeon will be contacted and the surgery will be scheduled for later this week, probably Wednesday or Thursday. Once she has the surgery, she will remain in Orange at least a week until they change her tube the first time. Then, she could go back to Mission for a little while until she gains enough weight for her heart surgery. Alissa and I were overwhelmed when we first walked into CHOC in Orange. It was a huge change from our “home” at Mission. It is so much more chaotic and huge. Our room is a lot smaller too. It will be a hard adjustment. We felt a little more comfortable after 24 hours since they all knew Emma’s history by then. Thankfully, we have a place to stay 10 minutes from the hospital. That has made it a little bit easier. It looks like Emma will not be coming home this year and when she finally does; she will have monitors and a ventilator just in case. Please continue to pray for us as we have to deal with more setbacks. We were starting to see the light at the end of the tunnel, but now we are basically starting over.

New Pictures

Back to Back Champs

Last night the Angels clinched their second consecutive AL West title with 5 games remaining in the season. It will be great for them to be able to rest Bartolo Colon and the bullpen to keep them fresh for the playoffs. They still have a chance for home field advantage, so they don't want to give away any games if they don't have to. It is such a nice change of pace to have my favorite team consistently going to the playoffs. Hopefully with the extra rest we will have better results this year in the playoffs.

4 pounds

Emma had another good week. On Friday she reached the 4 pound mark. Earlier in the week she had her other chest tube removed, so her lungs no longer have a leak. We spoke with Dr. Berdjis on Friday and he is happy with her progress. When she reaches 2 kilos, probably in the next week or so, they want to do another echocardiogram to see where her heart is at. At that point, he may recommend having a temporary surgical procedure that will help her grow some more before having the surgery to close the hole in her heart. They would insert a “balloon” into her heart to increase the blood flow to her lungs. If at all possible, Dr. Berdjis would like for Emma to be 3 kilos when she has her main surgery. She is looking very good now. She looks like a normal little baby girl. I took some pictures this weekend, put I don’t have my camera with me. I will send the next update a week from today unless something significant occurs. Thanks again for all of your prayers and support.

Positive Steps Forward

Emma had a good weekend. It was a very long week for Alissa and I, but it looks like we are over the worst of it. Emma was taken off of the oscillator and put back on the normal ventilator on Thursday or Friday. It is much quieter for her now and it is easier for the nurses to reposition her. She also had her left chest tube removed in the middle of last week. Her right lung still has some leakage so they are waiting a little longer to remove that one. She has been on IV nutrients since her episode last Saturday, but it looks like she may be going back to milk today or tomorrow. With the IV fluids, she gained a lot of water weight and was looking very puffy. They countered the puffiness with lasix and she started to look like herself again on Saturday. They estimate that her real weight is around 3.5 pounds even though she is weighing in at 3 pounds 12 ounces. She is no longer on the paralytic, but will continue to receive pain medicine and sedation. Her white blood cell count is elevated, so they are testing to see if she has any infections. As a precaution, they have given her 2 broad spectrum antibiotics. If it turns out that she has no infections, they will take her off of them. We haven’t been able to take many pictures in the last week because her room has been so dark and we didn’t want to disturb her with the flash, but we’ll try to get some this week and include it with our next update. As always, thank you for you continued prayers.

Quick Emma Update

I just wanted to send out a quick update to all of you regarding Emma. Over the past couple days she has stabilized. She is connected to 4 IVs and a central line. She still has 2 chest tubes that are draining air and fluid from her chest cavity near her lungs. She is very puffy and just started getting nutrients last night. It may be a little while longer before she starts getting milk again. Dr. Berdjis, her cardiologist has been seeing her everyday and is happy with her progress. He has ordered peace and quiet for Emma as much as possible. Emma cannot have visitors except for Alissa and I and our parents. And then we can only look at her and not talk in her room. Alissa and I have been just sitting in her room just to be near her. We just listen to audio books on my iPod. We slept at home last night after 2 nights in the NICU with her. It was tough, but we needed to do it. It will take some time for us to be comfortable leaving her at the hospital as we go home again.

Scary Night

Last night Emma almost died. At approximately 6:30 she started to have all sorts of spells. We received a call at 7:30 saying that we needed to come in to the hospital. At that point, we feared the worst. When we arrived there were at least 10 people at her bedside working on her and she looked like she was dead. Her heart rate was at 0 and her blood oxygen level was too. She may have been dead at some point and brought back. They were giving her CPR for at least an hour. The doctor asked us if we wanted to baptize her and I asked if that meant she was gone. She said no, but it was not looking good. We prayed with the hospital chaplain and her nurse from the day and God heard our prayers. Right after that, Emma started to have vitals again. They continued to work on her until she became somewhat stable and then took some ultrasounds and x-rays. We don’t know why it happened. During the process of resuscitating her, her lungs over inflated and air leaked into her chest cavity. She has tubes in her chest to release the air from her chest cavity and lungs. Her lungs should fully heal. Her heart looks OK right now too. She is on an oscillating ventilator right now to vibrate her chest and help her breathe. She is also on a ton of medications, including three separate IVs. They have temporarily paralyzed her to keep her from feeling pain. We don’t know what long term effects there will be, but we still have our little girl. We stayed at the hospital last night just to be near her and in case something happened. We will do the same tonight. Please pray that Emma will fully recover and not have any long term damage from this. Also pray for the doctors and nurses as they continue to care for her. They did an amazing job last night and you could tell everyone was genuinely concerned. Please pray for Alissa and I as well as we cope with all of this.
Thank you, Mark

We have a 3 pounder!

Emma reached the 3 pound mark on Saturday and we are thrilled! As of this morning, she is 3 pounds 1 ounce, a whole pound more than she weighed when she was born. It was quite a nice anniversary gift from our little girl. She has been doing well in her big girl crib. Her ventilator settings have remained at minimal. She did need to go on antibiotics last week for a minor infection, but that is the extent of her problems right now. It is not official yet, but it looks like we will be able to use Dr. Berdjis as our cardiologist. It appears as though he thought we were in a different group than we are really in, so there might not be any paperwork at all. He just told us that he has a great relationship with Mission Hospital and that it would be taken care of. He has been stopping by every three or so days to check on her. The plan has remained the same as Emma has continued to grown consistently. Alissa received a preemie journal from her mom that lets us chart Emma’s progress. Alissa looks at Emma’s chart daily and keeps track of her weight, feedings, medicines, who her nurse is, etc. every day. This weekend I reviewed the charts and figured out that Emma has gained an average of 5 ounces a week over the past couple of weeks. The previous two weeks she was gaining about 4 ounces a week. If she continues at the current rate, she should reach the magic five and a half pounds in about 7 more weeks. If all goes well, Emma might be home in time for Thanksgiving. That would be wonderful, but we are just hopeful that she will be home in time for Christmas. Thank you again for all of your continued prayers and support.