April 29, 2009

Thank you for praying for Benjamin. Your prayers were heard! His surgeon was successful at putting the prolapsed part back without having to go to surgery (I am not exactly how that worked, but they did it!). He warned me that it can easily prolapse again and not to be alarmed unless it shows signs of not getting enough oxygen. There is no defined plan to do the surgery other than sometime before he goes home for good. They would still like him to get to at least the 2000 gram weight before surgery if at all possible.

It was an exhausting day for Benjamin though. Not only did he have a lot of work done on his intestines (that must feel weird!) and got his stomach poked a lot, but he had his first eye exam, which can be a little stressful for such a little guy. He handled it all like a trooper and other than requiring some extra oxygen for several hours, he came through it all like a star and is still doing very well breathing on CPAP.

Mom and I got see something super sweet today. We saw Benjamin smile for the first time. He may have smiled before, but the ventilator was blocking his lips. Some people say babies can't smile, but I beg to differ! He had his grandma in tears and melted his mama's heart! It is another moment I will tuck away in my box of memories forever.

Thanks again for standing with us!

April 29, 2009

Good morning! I have an urgent request for prayer for Benjamin. Last night Benjamin's ostomy prolapsed (the amount of visible intenstine has more than doubled, maybe even tripled from what the nurse discribed). They believe this may have happened due to the increased amount of pressure from being on CPAP combined with a couple sutures that had come undone. I spoke with a doctor this morning and he said that he needed to discuss the situation with the surgeon, but they were basically watching the site and he believed that they would probably need to intervene within the next couple days, either by putting the recently prolapsed part back in and stiching it up or by putting the whole ostomy back in. Each has advantages and disadvantages. The good news is that they have to wait a minimum of 6 weeks after the surgery before they can even consider putting the intestine back in and closing the site all together, and it has been 6 weeks and 3 days. The unfortunate part is that they like babies in this situation to be over 2000 grams (over 4lbs 6 oz) and Benjamin is only 1360 (3 lbs). They have done it before and will do it if necessary, but it is just not the best scenario going into surgery. Plus, Benjamin will have to go back on the ventilator for the surgery.

Please pray for wisdom for the surgeons, doctors, & nurses watching over Benjamin, that they would have a supernatural ability to see the situation and make the best choices for Benjamin and that Benjamin would remain comfortable and strong. His nurse from last night said that he was handling it all pretty well so far.

Thank you!

April 27, 2009

Today was a good day for Benjamin. Not only did he reach the 3 lb mark (1360 grams), but he was moved off the ventilator again and has been doing great so far!!! He is on CPAP again and so far looks like he might make it this time. We are praying that he will have good breathing endurance and will rememeber to breathe. This is really hard work for his very preemie lungs. So far he hasn't had any of the episodes that scared us so much last time, praise God!

He received his first bath last Thursday and I got to help give it to him. His nurse held him in one of those small hospital tubs and I washed him. I included a few pictures. He is also starting to maintain his temperature better so he can spend more time with his incubator lid raised. I love this since I get a better view of him and he will start getting to wear clothes more out of necessity. He looks so cute when he gets to wear his little preemie clothes.

Early Sunday morning we received a call from Benjamin's nurse that he might have a bacteria infection. The night before they found a little spot on his back that concerned them. So, Benjamin is back on antibiotics. Poor little guy has been on antibiotics most of his short life. They are doing blood cultures and cultures of the spot to see if they test positive for harmful bacteria. As of today they were negative, but they need to wait 48 hours to before they will know for certain. When we received this news, all I could think was, what next? Such is the life of a baby born 15 weeks early. Please pray that the test will remain negative.

Here are some more pictures:

1) Benjamin enjoying his first bath. I am not sure, but it looks like he is giggling in this picture, maybe since I just got done with his armpit!
2) Another bath picture. He was holding on to Leanna's finger for dear life.
3) First hair washing with soap...(trivia - what soap do they use to bath the babies in the NICU? Answer: Plain old Neutragena)
4) Our little man gets to wear his first onesie.
5) A proud mama shows off how big her boy is getting
6) Benjamin on CPAP today, sporting his doggy shirt and brown footed jammies.

April 23, 2009

Tonight Benjamin weighed 1330 grams - that is about 2lbs 15oz. We don't totally believe the weight since he gained 60 grams from the night before and that is a bit high. Regardless, he is gaining slowly but surely. Yesterday he was 31 gestational weeks and tomorrow he is 6 weeks old!

The past few days have been much more restful and normal for Benjamin. I have been able to hold him again the past two days. His oxygen requirements have also dropped. He stayed at 23-25% oxygen most of the day. Considering room air is 21% oxygen, we were very pleased! A concern that we do have is that he still has a lot of secretions in his lungs, and they have to remove them by suctioning more frequently now. They believe this is mostly caused by the ventilator, but could be from other causes too. We are hoping that he will be ready for another try off the vent by Wednesday of next week. Please keep this in your prayers.

I have had many requests for more pictures, so here they are.

1) Benjamin and his bunny (thanks mom)
2) Benjamin and his snazzy micro-preemie attire (which he has grown out of! We hope he will grow into his preemie clothes soon even though he just needs a diaper now!)
3) Another sweet picture of our boy
As always, we cherish your prayers for Benjamin.

April 20, 2009

Just wanted to give you an update on Benjamin. He gave it a really good try, but yesterday afternoon he needed to go back on the ventilator again. We were told in advance that this could happen, and though we were disappointed that he has to be on a ventilator again, we are relieved that he is resting again for the most part. He had a couple more episodes of apnea again today where his heart rate and oxygen saturation both dropped and he needed help to get back up, but overall he was much more restful. They started him on steroids (a similar type that they use to treat children with asthma) to help his lungs. This is all because of his extreme prematurity. Sometimes we have to remind ourselves that even though he has been around for 5 1/2 weeks, he was still not due for more than 9 weeks! We are praying for strengthening of his little lungs, comfort and rest for his little body, and wisdom & insight for his doctors & nurses.

Also, an update on Benjamin's second cousin Katie. She is actually off the ventilator and doing much better, with only minimal oxygen support. Like Benjamin, it appears that her PDA is open (vessel near heart that typically closes on its own at birth) and she may need surgery down the road. Please pray for her continued improvement and that the PDA will close as it should.

We continue to cherish your prayers!

April 18, 2009

Yesterday was a big day for Benjamin as he had his ventilator removed and went on CPAP. Now, a day and a half later, he is still off of the ventilator and overall doing pretty good. He has had multiple "episodes" where he forgets to breathe and his heart rate drops as well as his oxygen saturation. This can be pretty scary to watch as monitors start ringing and he starts turning blue. I am getting better about seeing this happen and not panicking, but when this happens, like Benjamin, I tend to hold my breath. Fortunately, God has blessed us with some pretty talented individuals who know just how far they can let him go and when to intervene. Overall, we are very excited about his progress and that he is breathing on his own with some help from CPAP. This is hard work on a little body that has been letting a ventilator breathe for him for the past 5 weeks. Despite the hard work, Benjamin has proved to be a little warrior and fought this battle hard. We are praying that he can continue to be strong and that God will continue to strengthen his little body and lungs.

April 16, 2009

Benjamin had a good day today. He continued to tolerate his weaning off the ventilator and unless something goes wrong overnight, tomorrow (Friday) is a very big day for him as they plan to extubate him off the ventilator. They told us to not be surprised if he becomes tired and needs to go back on, but we are just excited about the opportunity and praying that his lungs will stay strong and that he will be able to cruse into CPAP (Continuous Positive Airway Pressure). This would be a huge milestone for Ben.

I have a new prayer request for a preemie, but this time it is not for Benjamin. Last Saturday, the world welcomed in Katie, first born daughter of my cousin Kari and her husband Brandon. Katie is 5 weeks premature and is also having trouble breathing and is on a ventilator. Kari and Brandon are displaced from their hometown and in staying close to the hospital where Katie is. Katie is also a miracle child as she had complications at birth with a short and thin umbilical cord that became detached from the placenta. Praise God she was delivered very quickly! Please pray for Katie's lungs to be strengthened and for complete healing and protection over her whole body. Also, please pray for comfort and peace for Kari and Brandon as they experience the ups and downs of the NICU. This is very close to my heart and I still feel the pain of the first weeks very clearly with the uncertainty, confusion, and worry.

Thank you dear friends and family for standing with us!

April 15, 2009

Hi! Benjamin is now 30 weeks gestational age. He is still doing very well and we are enjoying an "upswing" in his health for the time being. He has lost weight the past couple days, so I am not sure if they will adjust his feedings again or just wait to see if he gains any more tomorrow night.

One big prayer request for the week. He has done pretty well at being slowly weaned off the ventilator over the course of the past couple days and if he continues to tolerate being weaned, they will attempt to extubate him off the ventilator Friday. After 5 weeks of being on the ventilator, we are really excited about the possibility of graduating from it. Please join us in prayer that his lungs are strengthened that he will succeed. It sure would be nice to see him off the vent.

Thank you again for your prayers!

April 13, 2009

One month ago today (13th) Benjamin made his appearance. Since then he has braved twos surgeries, pneumonia, gained a full pound and over 2" in length. He now weighs 2lbs 9oz and is about 14 3/4" long. It has been a bumpy road, but it has smoothed out for the time being, which is so wonderful.

He had a great day today. They made some adjustments to the depth of his ventilator tube and it made a big difference in his comfort and stats. I held him for two hours this afternoon and we both enjoyed a good nap together. They are very slowly weaning him from the ventilator, but we learned tonight that he will also need to have the secretions in his lungs clear some or have the ability to clear them himself in order to be successful in transitioning to CPAP (no tube down his lungs, just some light pressure and oxygen, but he would do the breathing on his own).

Last weekend they took him off milk and put him on a special formula that has the proteins more broken down in hopes that he will absorb the nutrients a little better, since it doesn't go through all of his intestines. They expect to transition him back to milk after his surgery to put his intestine back in. That surgery probably won't be for a couple months at least. The only "medication" he is receiving right now is sodium, since he has been a little low. His nurse today commented how good and rare that is that he is not on anything else after being through so much.

It is so fun to see him grow. Even though he is still so very small, he is bigger than he used to be and in much better shape. We praise God for this and thank you all so very much for continuing to stand with us in prayer for Benjamin.

April 11, 2009

Benjamin is now over 4 weeks (and/or 29 weeks gestation). He has had a good week. He finished up his antibiotics and moved up to 7mL/hr, so they were able to stop his IV and take out his central line. This is the line that they feed up from his lower leg all the way up to his abdomen. It was very strange to see it being taken out, but I won't go into those details...bottom line it is gone (for now) and diaper changing is much easier. He had a follow up head ultrasound to check up on the bleeding and it has continued to decrease and the clots are starting to dissolve, so they might wait a couple weeks to check him again - praise God and thank you for praying for that specifically!!!

He is still on the ventilator and they took him off caffeine, which tells me they probably will not try to get him off for a while. I am wandering if he misses his daily does of Starbucks :) They did reduce his ventilator settings early yesterday morning, but we do not know if he responded well to that or not at this point. He has a lot of fluid in or lungs partially due to his pneumonia and also from being on the ventilator for so long.

I just thought I would share some of Benjamin's personality with you. He is forever doing the split finger-Vulcan sign with one hand and pointing one finger straight up in the air with the other. He also feels the need to grab on to anything and everything - his ventilator, the nurses fingers when they examine him, his SPO2 and heart monitor leads, feeding tube, the edge of his ostomy bag. Speaking of ostomy bag...I apologize for sharing this in advance, but I have to look for all the humor I can right now. Benjamin, like most little boys, has a fascination with getting his hands into things. One day I came into the NICU and noticed there was green on his ventilator tape and asked the nurse if he had gotten sick, as they were watching for this with his increased feedings. She informed me that he had a tear in his ostomy bag and he decided to check it out and smear its contents all over. That explained the total change in bedding that I had observed. My sister Jodi loving refers to this act as "finger painting" which both of her sons have explored their artistic sides with and it looks like Benjamin is doing as well :) It is incredible how you can see that even though he is tiny, he really does have personality.

Thank you for praying for our family and Happy Easter!

April 6, 2009

Friends & Family,

Whew...what a week last week was! More ups & downs but we made it. I am doing well and my infection is cleared up. Benjamin is also doing good now too. We found out that he did have pneumonia last week and is still getting over it. On Thursday they discovered that there was a leak in his ventilator tube due to the small size (either he grew or his air pipe expanded) and so they tried taking him off the ventilator early Friday morning. He was on CPAP, which helps him breath, but does not breath for him, for about 8 hours and did pretty good, but got tired, so they put him back on the ventilator. He just wasn't ready yet. Since they sedated him to put the ventilator back in, he was really drowsy all that day, and didn't really snap out of it until Sunday, which had his caretakers puzzled. Benjamin has earned a reputation around the NICU for being fiesty and having spunk (that's my boy!) and so it actually concerned the nurses when he was too restful. But he is back to himself now. He has scared us a few times by dropping his oxygen level and heart rate down to low levels, which in turn dropped his mama's heart rate...or maybe made it skyrocket, but he is getting better.

Here is the latest & greatest numbers: he is now 1120 grams - about 2lbs 7oz+ and is 13" long. He is progressing as they expected on weight. He was bumped up to 5 mL of milk per hour - that is 1tsp per hour. They expect to take him off of the IV within a few days and fortify the milk he is currently receiving to ensure he gets all the nutrients he needs. This is really good news as it will make him stronger and not having the IV will be easier on his liver, which has already undergone a lot of trama and hard work.

I was able to hold him today for the first time in 9 days. It was so good to get to hold him again and just enjoy being close.

Specifics to keep praying for: that his follow-up head ultrasound on Thursday will continue to show decreased bleeding, that his lungs and whole body would be strengthened and enable him to get off the ventilator, focus & mental vigor for Brian as he continues to plow through his last year of college - he is taking 19 credits this term, which challenging enough without having a son in the NICU and a tired & emotional wife.

Here are some pictures of our sweet boy.

April 2, 2009

Yesterday Benjamin's hit his 28week mark and tomorrow he will be 3 weeks old. Today was a great day for Benjamin. He is doing so good after getting on antibiotics and they talked more about trying to take him off the ventilator soon, possibly as early as tomorrow (!!!), but I am not holding my breath (no pun intended). Also, he had the follow up ultrasound on his brain and the bleeding has decreased and the doctor was not very concerned about the clots!!!! Thank you God! I am so amazed at his improvements in the past 3 days. Today was another 2 steps forward day. He also increased his feedings to 3 mL per hour, which is also very good and he did not need morphine to my knowledge today. He had his eyes open more than ever before today, which still was not very much, but it sure is fun to see them open some. I am doing much better as well.

Thank you so much for your prayers.

April 1, 2009

As you know, the past several days were pretty difficult for Benjamin and he was uncomfortable and his ventilator settings were getting worse each day. Yesterday, Mom was able to spend the day with me and Benjamin up at the hospital and was able to lay hands on him and prayed a very specific prayer that he would receive health into his lungs. Before that, the doctors knew something was wrong but they didn't know what and ran a series of tests. They found some bacteria in a fluid sample from his lungs and even though there was not much, they decided to put him on antibiotics, especially since I have developed an infection. They think he may have been on his way to having pneumonia, especially since within hours of being on the antibiotics he began to improve and today his oxygen/ventilator settings are much better and he just looks overall better. The doctor even said if he continues at this rate he may be able to get off the ventilator in a few days! Thank you God!

Another good piece of news is that the bleeding in his brain has not increased. I could never explain it as good as his doctor did, but basically though there is no increase in bleeding, there is clotting, which sounds more scary that it is. If any of the clots becomes lodged in the part that drains fluid from the brain then it can cause some swelling, which is also not as scary as it sounds according to his doctor, because his skull is not fused and therefore can handle some expansion. They are monitoring this more closely now and will do another head ultrasound tomorrow. If the open cavity that collects fluids does become full and could cause some swelling, then they will have a neurosurgeon draw out some fluid with a needle. Even though they assured me that this too is not as scary as it sounds, I would prefer that no needles come close to my little boy's head. Please pray specifically for this as well as his continued improvement on the ventilator.

A few quick facts: Benjamin is now on 2.5mL/hr of milk (a teaspoon every two hours) and now weighs over 2lbs and 3 oz. We get excited about every ounce!

In celebration of a good day I thought I would add some pictures.

1) Brian's first time holding his son. You get might get a better sense of Benjamin's size. This holding time is referred to as kangaroo care and we are told it is very important for preemies. We don't mind helping him out in this way! We get to do this once per day as long as Benjamin is doing well.

2) Sweet little toes and mama's hand.

3) Ambulence - here is the vehicle that transported Benjamin from the hospital where he was born to where he now resides. If you ever see this vehicle driving around, be sure to let them by! They helped save my baby's life!

4) Benjamin's "bling" - are those bracelets? Well they also double as mom & dad's wedding rings. Another picture to help imagine the actual of the size of our boy.

5) If you have been through our hometown heading south on 99E in the past few days, you may have seen this sign. Who knew our boy would have his name on a sign when he was only two weeks old! It makes me either cry or smile each time I see it depending on which side of the roller coaster I happen to be on that day. (Thanks Doug and Marilyn!)

Thank you for your continued prayers.