Day 73 - Making some progress

Benjamin is still hanging in there. He is still on CPAP and is growing, but he is having some trouble keeping his CO2 levels low enough. His Co2 levels were going up over the past few days, but today it was much better than it had been in a while, so hopefully this trend continues. If it goes back up and stays up, the doctors have told us that he may have to be re-intubated and be put back on the ventilator. Right now, he is right on the edge of having to go back on the ventilator so hopefully his levels continue to decrease.

Benjamin has another eye exam on Tuesday. His last exam this past Tuesday looked similar to his previous exams. He still has mild ROP, but his eyes are still developing so they could heal on their own or he may need surgery to correct the issue.

Benjamin is growing and getting bigger. Benjamin weighed 4 lbs, 5 ounces last night. He has had some nice weight gain over the past few days. Hopefully this continues.

Sorry for the lack of updates recently; the Thanksgiving holiday threw our schedule off.

Please pray that Benjamin's lungs continue to develop and he doesn't have to be put back on the ventilator. Please also pray for Benjamin's eyes that they continue to develop properly.

Day 66 - Still fighting

Benjamin has had a trying few days. He is still on CPAP and is working really hard to stay on it, but he is getting to the point on his settings where his lungs may be tiring out. If this trend continues, he may have to be taken off of CPAP and put back on the ventilator. X-rays show his lungs still look ok, but his heart rate and oxygen requirements have gradually increased over the weekend. Tests show he is not getting an infection, so this indicates his lungs may just be too immature right now.


Saturday night Benjamin was so uncomfortable and was crying a lot. He just could not get comfortable. Today he was much calmer, so hopefully this continues, so we can go back to holding him. We haven't been able to hold him since he was put on CPAP because the doctors want him to rest and stabilize.


Benjamin will have his next eye exam on Tuesday. Last week indicated he has mild ROP, so the next few tests will probably indicate if he is going to develop his eyes properly on his own or if surgery will be needed to do that.


Please pray for Benjamin's lungs and eyes. He is trying so hard right now and is doing everything he can to stay off the vent.

Video Posted

We posted a video of Benjamin. Here is the link...

http://www.flickr.com/photos/toddporter1/collections/72157622510508790/

Day 62 - Big News for Ben

Benjamin decided on early Tuesday afternoon that he has had enough of the ET tube in his mouth and pulled it out again. He was looking good and the doctors decided to try him on CPAP again. Well, he is still on it and seems to be doing pretty good so far. He is still working hard to breathe, but is no where near where he was the last time. We will have to continue watching him because he could tire himself out and may need to be put back on the ventilator, but every hour he is on CPAP is a big deal. Please continue to pray for his lungs.

Benjamin had another eye exam to check for ROP (Retinopathy of Prematurity). His eyes haven't finished developing yet and at this point he does have mild ROP. They will continue to monitor his eyes and see how they develop. Right now, it could go either way; his eyes could develop correctly on their own or he could need surgery to correct the problem. He has another exam on next Tuesday, so please continue to pray that his eyes develop correctly.

Benjamin is now regulating his own temperature. Before, his isolette regulated the temperature based on his body temperature. Now, the isolette is set at a temperature and it is up to him to warm/cool himself. So far he is doing really well and they have continued to lower the temperature inside. Eventually, he will get to the point where he will get out of his enclosed isolette and will get an open one. Because he has to regulate his body temperature, he is now wearing clothes. He looks so cute with his little outfits on.

Benjamin gained weight and was up to 3 lbs, 11 ozs. Tuesday night, but because he was on CPAP and working out, he lost weight and is now 3 lbs, 9 ozs.

Please continue to keep Benjamin in your thoughts and prayers.

Day 59 - A lot going on

Benjamin has had a lot going on with him in the last few days. He decided to pull his tube out again two nights ago. This time, when the tube came out, he was crying and breathing some on his own. His heart rate was also staying at a good level so they decided to try him on CPAP (Continuous Positive Airway Pressure-oxygen is delivered through a nasal cannula). Benjamin was working really hard trying to breathe but was using a lot of energy. After watching him for a while, they took an x-ray and decided his lungs were just not ready for CPAP, so they took him off of it and re-intubated him. Benjamin was on CPAP for about 6 hours. He is not there yet, but he is making progress and this was a step in the right direction.

We didn't know Benjamin extubated himself until the next day, but Sherri happened to read a Bible verse during the time Benjamin was trying CPAP for the first time.

The Lord God formed the man out of the dust from the ground and breathed the breath of life into his nostrils. Genesis 2:7

This is just another reminder God is in control and he is going to get Benjamin to that next step and allow him to breathe life on his own. We need to remember to be patient.

Recently, the doctors have become concerned with his weight gain. He has been gaining weight, but not as fast as they would like. He is still growing at a "normal rate," but he is on the low end. To help him gain some weight, the doctors decided to add some oil (triglycerides) to his milk, which should help him. They want him to get bigger because this will help his lungs get healthier and help his body continue to develop correctly.

Benjamin also got another blood transfusion yesterday. They are just taking it out faster than he can produce it right now.

Last night Sherri and I sang him nursery rhymes and other songs while he fell asleep. Benjamin really seemed to enjoy it and doesn't seem to mind our off-key renditions of the classics. The same can not be said for the nurses that were within ear shot.

Sherri held him today and we both gave him a bath tonight. He seems to really enjoy both and responds well when we are around.

We took his measurements tonight and the oil seems to have helped him already. He is now 3 lbs 9 ounces and 16 1/4 inches long.

Please continue to pray for Benjamin.

Day 54 - Successful Eye Exam

Benjamin had his third eye exam today and everything looked good. He is now going to get an exam every two weeks instead of weekly.

Benjamin also extubated himself again last night. While we don't want him to continue this practice, this time wasn't as bad as he handled it much better than last time. Hopefully, very soon, if he extubates himself again, he will handle it really well and the doctors will decide he is ready to get off the vent. Also, in the process of pulling his tube out, we found out he has acid reflux. We didn't know why his stats would drop when he was feeding, but now we know and it can be treated. Just another piece of the puzzle needed to be solved.

The nurses are really supportive and are allowing us to hold him frequently. We were able to hold him skin to skin for two hours straight today. Research has shown that this method works wonders for his development.

Thank you everyone for your continued thoughts and prayers; this too works wonders in Benjamin's life.

Day 53- Holding Steady

Benjamin is holding steady. The doctors say he is still making progress it is just going to take him a while. His lungs are slowly developing... In the meantime, Todd and I continue to hold him twice a day. Benjamin really likes being held and put to sleep in the rocking chair. : ) I must say, Todd and I really enjoy it as well.


He weighs about 3 lbs 3 ounces and last night they measured him and he is now.... 16 1/4 inches long! Growing fast.

Tomorrow is another eye exam. Hopefully that goes well. Thank you all for your continued prayer support for Benjamin.

Day 51- Two steps forward One step back...

Benjamin has made quite a bit of progress over the past week. The doctors have been able to wean his vent settings from delivering 40 breaths per minute to 20 breaths per minute which means he is now doing more of the work on his own. His oxygen settings are still around 40 to 50 percent. We need to see a decrease here as well as on some of the other settings that determine how much pressure is being given. He has a lot of work to do and still a lot of lung development necessary to get there.

Benjamin is getting more and more fidgety and active. He accidentally extubated himself the other night. He was lifting his head from side to side and his tube that connects him to his ventilator came out. The doctors said the way he responded shows that he is definitely not yet ready to be weaned off of the ventilator. He had difficulty breathing and needed to be revived by using the resuscitation bag.

I know it sounds like so much going on; but he has had a tremendous amount of improvement this past week even with the setbacks. I know we are asking a lot of Benjamin to get him where he needs to be, but I keep reminding myself- Our God is Big. He will get there!

Benjamin will have another eye exam on Tuesday of this week. Please continue to pray for his eyes and his Lungs.

Day 47- Successful Eye Exam

Benjamin's second eye exam went well. Thank you for your prayer support! He will have his next exam in 1 week.

He is looking good. We just need him to stay free of infection and to continue to develop and grow. The doctors were able to wean Benjamin down to even lower settings on the ventilator today. : )

Todd and I were both able to hold Benjamin for quite a while this evening. He seems to sleep peacefully while being held. He is now weighing about 3 pounds and is 15 1/4 inches long.

Thanks so much to all of you for your prayers.

Day 47- Continued Development

Benjamin is still making progress. The doctors continue to wean his settings on the ventilator a little at a time. Hopefully, he will be able to get off the ventilator soon.

He has his second eye exam this morning. Please continue to pray for Benjamin's eyes and his lung development.

Happy Halloween!

Benjamin decided to dress up as an alien.

Day 44 - Happy Halloween

Benjamin continues to do well overall. His ventilator settings were reduced some today and he seems to be ok with the new settings. The doctors say his lungs are responding slow to the treatment; we believe Benjamin's lungs will develop soon enough. He is on the right track; it just takes time and for him to continue to grow.

Benjamin weighed in at 3 pounds 1 ounce Friday night, which is an overnight gain of about 4 ozs. He definitely looks like he is growing, but the doctors believe a lot of that weight gain is just water weight. He was given a diuretic to help him pee it out. He will be measured late Sunday night and we should know his true weight and height Monday morning.

Tonight was bath night for Benjamin and we got to help clean him up again. He did really well with it and looks good; he cleans up really nice. After his bath, he was wide awake, so I held my hand over his back and after a few seconds his eyes started to slowly close and went to sleep.

Sherri continues to hold him every day and from what I hear, he does really well with it and seems to enjoy it. I have been working a lot lately and haven't been able to see him as much as I would like, so I look forward to when I am able to hold him again.

Please continue to pray for our little one and for his lungs to develop.