More Good News

Emma was moved into an open crib today. As she has grown, she has been getting too warm in her old isolette. She was also becoming bored. In the open crib, she can be stimulated with a mobile and some quiet music. Since moving into the open air this morning, her ventilator settings have come down. Although she is still on the ventilator, she is breathing 21% oxygen. This is considered room air, which is the same amount of oxygen that you and I breathe. As of yesterday, she was on 33% oxygen. Her weight today is 2 pounds 13 ounces (Yes, I double checked it this time) and is 14 inches long. She was 13 inches long at birth. Her head has grown 3 cm as well. We are in the process of trying to switch cardiologists, but the one we want is not in our group. We have several people working on trying to get the insurance company to allow Dr. Berdjis to become our cardiologist. Since there are so few qualified preemie specialists, it may work out for us. Please pray that the insurance company will allow this. Also continue to pray for positive growth. Thank you all so much for your continued support and prayers.

New Photo Album Finally

I have finally posted a new photo album online. Click here to see it.

Re: Surgery Update

Good Morning. Yesterday afternoon we had another cardiologist come in and give us a second opinion. After looking at her charts and progress over the past two weeks, it was his assessment that surgery would not be beneficial at this time. The risks of her doing the surgery at such a small size outweigh the risks of waiting. The risks are minimal for waiting. She could get an irritated vocal cord from the ventilator and there is a possibility of infection. Those are minor compared to the risk of not surviving the surgery. At this point, they will reassess her weekly and decide if she is declining. The plan right now is to get her to 2500 grams which is approximately 5 and a half pounds. She is currently 1202 grams or 2 pound 10 1/2 ounces. While she awaits surgery she can remain at Mission. She will remain on the ventilator while she is awaiting surgery because it allows her to not have to work so hard. Please continue to pray for healing and that she will continue to improve.

Surgery Update

Yesterday we were informed that the plan is to transfer Emma to CHOC in Orange next week. In all likelihood this means she will be having the surgery soon. We are meeting with a different cardiologist today at 3:00 to get a second opinion. We just want to make sure that this needs to be done now. After we meet with the cardiologist today, we will have a better idea of what their game plan is. Please pray for wisdom and healing.

Gaining Some Weight

Since I last updated you, Emma has finally started to gain some weight. It took her almost a month to get back to her birth weight, but now she is gaining a little bit each day. I the past week she has gained about 5 ounces and is now a whole 2 pounds 6 ounces! Right now Emma is strictly on breast milk with fortification. She is no longer receiving the TPN fluids. Every 8 hours she gets an increase of .2 ccs. She is up to 6.8 ccs per hour as of today. Also’ since being back on the ventilator, her heart size has decreased because it hasn’t had to work so hard. With her gaining weight and her heart decreasing in size, the doctors are cautiously optimistic that she will be able to hold off on the surgery until she is a little bigger. We are praying that the hole completely closes up on its own.

One Month Old

Tomorrow Emma will be one month old. She has had her ups and downs, but is doing well overall. A lot has happened since I last posted. We met with the cardiologist on Thursday and he told us we might have to do the surgery sooner than later on her heart. The hole in her heart is causing her to have to work harder and as a result, she burns most of the calories off that she receives. After a month, she is still not back at her birth weight. She is just about 2 pounds now. If she doesn’t show some good weight gains over the next two weeks, they will recommend the surgery now. She would be one of the smallest babies to ever get the surgery. Another factor is that the best heart surgeon for preemies is leaving CHOC in the middle of next month. If we want the best, the surgery will need to be done before he leaves. The doctor who is replacing him has not performed the surgery on babies as small as Emma.

Yesterday when we arrived at the hospital, they were putting her back on the ventilator. We came to find out later that she was gasping for air and her vitals were dropping so they wanted to be safe rather than sorry. She has a plug of mucus blocking her airway that they couldn’t suction out. After the vent was back in, they were able to suck out the mucus. They don’t expect for her to have to stay on too long this time because she was doing so well without it.

Since meeting with the cardiologist on Thursday, the nurses and doctors have increased her calories to the maximum. As a result, she has had some minor weight gains. Hopefully, this will continue. They also did another head ultrasound and her brain bleed continues to improve. It has gone from a grade 2 to a grade 1 and should fully heal. I think that brings you all up to speed.

Private Room

Emma was removed from the ventilator on Monday morning and she has been off of it since. The last couple times that she came off, she had to go back on within 24 hours, so we are hopeful that she will stay off for good now. Since she is off the vent, Alissa and I have been able to hold her quite a bit this week. This has made us so happy. She has also been moved to a private room. She had become more agitated due to all the noise in the open area, so they decided to see if a quiet room would help. It has been good for her, but we miss the interaction with the other parents and nurses. I’ll send another update next Monday unless something significant comes up.

Good Weekend

Emma had a good weekend after causing the nurses problems on Friday. On Friday, her nurse Robin had to stand at her isolette for 3.5 hours trying to calm her down because she was so agitated. They finally found something to calm her down and she rested peacefully through the weekend. They were unable to determine why she was so irritated, but she is doing better now. On Friday they did another head ultrasound and her brain bleed is improving. It looks like it will all absorb back into the brain. That’s one less thing to worry about. Emma is now 3 weeks old and is starting to gain some facial features. She opened her eyes quite a bit this weekend too. Alissa is starting to know the charts very well as she journals everything for the future. She noticed on her chart that they wrote that Emma will need surgery once she reaches 5 pounds. That is much better than the 3 pounds they told us. Hopefully that means she will be able to stay at this CHOC until then. We have become very attached to the nurses and doctors. We are not looking forward to starting over again at another hospital. Thanks again for all you prayers and support.

Good Day

It seems like I have been sending out more bad news than good recently, so I wanted to send out a positive e-mail this morning. Emma has been doing well the past couple of days. Since being back on the ventilator, she is a lot more calm and resting peacefully. Her settings on the ventilator are at minimum and she is only on it because of the irritation in her throat. She is back on milk with the ventilator so that is good news as well. We spoke with the resident doctor on the floor yesterday and it looks like Emma may be able to stay at the Mission location until she is ready to have the surgery. While we know that CHOC in Orange is one of the best hospitals in the world, we have grown attached to the nurses and doctors at Mission, not to mention that it is 10 minutes from our home. Emma also was seen by an ENT (Ears, Nose, Throat) specialist to see if they can find out why her throat keeps swelling. They found nothing wrong above the larynx, but were unable to look further down into her lungs. The next time they take her off the ventilator, they are going to look deeper. Alissa spent the morning and afternoon at home yesterday to get some much needed rest. After two rough days in a row she really needed it. Thankfully, she was able to get some rest. Thanks again for all of the encouragement and prayers.

Surgery

Yesterday we were hit with some more bad news. Emma has a hole in her heart between the right and left ventricles. This is something we have known about and they had hoped it would heal on its own. The cardiologist came in yesterday and ran some tests. The hole doesn’t look like it is going to close on its own, so they are going to perform surgery. Emma needs to be between 3 and 5 pounds before doing the surgery, so it could be a month or more away. CHOC at Mission does not do this surgery, so at some point she will have to be transferred to CHOC in Orange. That will make it even more difficult because she will be 30 to 45 minutes away from home rather than 10 minutes. While this is a fairly routine surgery, it is still scary. Life is becoming more and more stressful everyday. I know in my heart that everything is going to work out, but it is hard to see right now.

Rollercoaster Ride

This past few days has been a real rollercoaster. The last update I sent out said Emma was back off the ventilator. The very next day she had to go back on the ventilator because her throat is swollen and she wasn’t able to get air through it on her own. Over the next couple of days she was doing well on the ventilator again, so they decided to take her off again on Saturday. Well yesterday, she started having more problems. Several times during the day she stopped breathing and her heart rate dropped. She was also very low on blood because of all the tests. It was the first time I was actually scared during her short life. It was hard to see her stop breathing and gasping for air so often. There was nothing we could do for her as parents. They ordered a blood transfusion to fill her back up and had to put her back on the ventilator one more time. She was also given some steroids and antibiotics to reduce the swelling in her throat. After the treatments she is doing much better. She was peacefully sleeping throughout the night and she hasn’t had any more episodes.

Now for the good parts. Emma is not on the ventilator because of her lungs. They are doing just fine. It is because of her swollen airway that she keeps getting put back on. I asked the nurses why they keep taking her off and then putting her back on. They told me that there are risks to keeping her on it for longer than needed because it can irritate her throat and lungs, which we have seen. In the past they left preemies on the ventilator longer because their lungs weren’t developed enough. With the new medicines and steroids that they can give today, the lungs develop much quicker. I was also concerned about her stopped breathing and dropped heart rate having permanent damage. I wanted to make sure that her brain was getting enough oxygen. We were assured that she hadn’t stopped breathing long enough to have damage.

I want to thank all of you for your prayers and e-mails. Please keep them coming. I am sorry that I cannot respond to them all individually.