Unspeakable Joy - 11 months old

Wow! Todd and I have been having the time of our lives. Benjamin is so amazing! We now can see why parents have additional children. At first, it seemed like the worry alone was too much to take, but we have started relying fully on our Faith in God to get us through each challenge we face and the joy is abundant. Benjamin was sick at the beginning of July with a viral infection and was hospitalized again for a week. It seemed so much more traumatic than anything we'd seen before, maybe it was because we have had the opportunity to love Benjamin and spend so much time with him. He struggled so hard while in the hospital and even had to have emergent surgery due to a hernia getting stuck. The surgery went well and Benjamin bounced right back to everyone's surprise. His surgeon even seemed extremely concerned because of the condition of his lungs. He had to be put under anesthesia and intubated for a short time during the surgery but recovered well. Since then, he has been growing and developing by leaps and bounds. We are simply amazed each day as he discovers something new. We have continual help from both Grandma's (Mimi and Grammy), which has made things so much easier for us. Benjamin is so good natured; he smiles and laughs constantly. Lately, he seems more and more amused by his surroundings. We had a follow up appointment with his eye doctor this Monday to check his vision and the doctor said he doesn't see any issue with his vision and he will not need glasses. He is still getting physical therapy, occupational therapy, and nutrition consults. All of the feedback has been good. It sounds like Benjamin is doing well with his development and continues to improve. I can't believe he is already 11 months old. Thank you all for your support and continued prayers! We are so thankful God blessed us with Benjamin.

New pictures have been posted in Flikr.

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

Update coming soon...

Benjamin at home

Benjamin in the hospital

Benjamin's infection

Well, we have had a rough past week or so. Benjamin's cough continued to get worse last week and Todd and I kept calling his doctor's and taking him in for check-ups to monitor his cough. We began to feel like we were over reacting. Last Wednesday we called and got Benjamin's Pulmonologist and Pediatrician to fit him in for a follow up visit. Both seemed perplexed as to his severity of his cough because when he wasn't having his hacking/coughing episodes he seemed fine, even happy. We took him home Wednesday night and he had coughing attacks that lasted for over two hours, coughing every 5 minutes or so. We gave him his albuterol treatments to help with the airway, etc. Benjamin wouldn't eat much for dinner and by the early a.m.- 4:00 am he woke and should have been starving and again wouldn't eat. During his coughs he had some mucus and blood, so we then decided to take him to Texas Children's Hospital Emergency Room early Thursday morning.

At first, the doctor's were concerned that he was aspirating into his lungs during feeds so they scheduled a Swallow function test. Aspirating is very serious and could lead to pneumonia. The swallow function test showed he didn't have any trouble eating, swallowing, etc., but they still decided to put an ND tube in for feeding until we knew what was going on. This goes through the nose and down into the intestines so that when he gets fed through the tube, it will go directly into his intestines. This had to be one of the worst things I have had to watch Benjamin go through. Todd and I had to hold him down while they tried to position the tube just right. It felt like an eternity as he lay there screaming. I wanted to just stop it and take him home that second. We were still not sure he needed to be in the hospital since his only symptoms were coughing spells and reduced appetite. Since it didn't appear he was aspirating, they took some tests to see if they could figure out if Benjamin had an infection.

Throughout the day, Benjamin's oxygen requirement slowly began creeping up. He was on an 1/8 of a liter at home and when he was admitted to the hospital and by Thursday night, he was up to 1 liter. Even on a liter his oxygen saturation was lower than it was when he was admitted. We were so concerned, because he was still coughing so much and was in obvious pain. By Friday morning, he was maintaining and by that afternoon, we were able to begin to wean him back down. Saturday, he was doing so well, the doctors decided to take him off the oxygen! This was exciting, but we still didn't know why he was in the hospital and why he was coughing so bad.

Sunday, Benjamin was still off the oxygen and seemed to be doing much better, but we still didn't have any answers yet. The tests for various infections continued to come back negative, so it was getting frustrating for us and the doctors.

On Monday, they decided to do an Upper GI to see if he was refluxing so much, he was aspirating that way. This also showed everything was fine! Thank the Lord.

Finally, Monday afternoon, after being in the hospital 4 days, we got test results back indicating he has Pertussis (Whooping Cough). What was so unusual is that he had been vaccinated for this and has had very little contact with other people and none with other children. He also didn't have the "whooping" noise typically seen with pertussis, so we didn't immediately think about this. We are not sure how he got this, but at least we know what it is. Unfortunately, there is not a lot you can do to shorten the duration of the cough, so we are planning on him having the cough for a while. Fortunately, the cough is much less severe and is happening much less now. The doctors decided that he was doing ok to go home on Tuesday. They decided to send him home on some antibiotics and without any oxygen.

We brought Benjamin home on Tuesday and he is a new boy! We were a little nervous at first because this was the first time he didn't have oxygen at home, but he is doing so well. He has no tubes and nothing holding him back. He is now sitting up in his Bumbo seat, holding his head up, and smiling constantly.

God has truly taken care of Benjamin and carried him through each and every obstacle he has faced since birth. Benjamin's Pediatrician said it was so amazing how well Benjamin handled such a serious infection.

Thank you all for your continued prayers. We are so blessed and are learning more and more about God's amazing grace as we go through these trials in our life.

New Video is posted

Here is a video of Benjamin sharing his thoughts...

http://www.flickr.com/photos/toddporter1/sets/

New pictures have been posted. Here is the link...

http://www.flickr.com/photos/toddporter1/sets/

Prayers for Benjamin

Please keep Benjamin in your prayers. He has developed a very bad cough and has started albuterol treatments at home, but his Pulmonologist said you can't really treat the infection since it is viral, all we can do is treat the symptoms. He said we need to watch him closely over the next 5 days to see if it improves or gets worse as it could be a minor upper respiratory infection or possibly RSV (Respiratory syncytial virus). At this point he is coughing a few times each hour which seems to really exhaust him. Other than that he seems to be fine, still eating and sleeping like usual. We know he will get through this and continue to thrive. Thank you for your prayers.

We are enjoying every minute having Benjamin at home! He is smiling, laughing, and even trying to piece together babbles into words. He recently discovered his tongue so he is trying hard to speak. It is so cute! He has had several visits to be evaluated on his development and they all believe that he was doing good, even better than expected on his language and cognitive skills, which are the indicators for intelligence so we were very pleased to hear this. They also both agreed that he was slightly behind where he should be on his fine and gross motor skills, but they feel he should be able to catch up by two years of age. They showed us some exercises to do with him that should help. Overall he looks amazing. He is still on oxygen, but he did so much better at his OCRG Sleep Study so hopefully he will only require oxygen assistance a few more weeks. Oh, and our sweet little angel is sleeping through the night! It started over a week ago and we were waiting to see if it lasted and it has. I now understand what they were referring to in the NICU before discharge.

Overall, Benjamin is doing really well, but he has a very busy schedule. Last week he had an appointment on Monday with his Pulmonologist, Tuesday at Texas Children's Hospital (TCH) for Physical Therapy evaluation, Wednesday at TCH for Occupational Therapy evaluation, and Thursday Early Childhood Intervention (ECI) is coming to the house to work with him on his development. Friday- he had the day off! : ) He will be busy for the next few weeks.

Benjamin is eating great, no choking- thank the Lord, and has slight reflux but is taking Prevacid for it. He now weighs over 13 pounds. He is getting so big. He will be having surgery on May 13th for his hernia and will require anesthesia so please keep him in your prayers.

Thanks for all of your continued prayer support. Benjamin is doing wonderful and looks like a happy and healthy baby!

46 Days Home Grown

To catch you up: A few weeks ago Benjamin's pulmonologist did the OCRG-Sleep Study and it showed he still needed the oxygen assistance. They said they would check him again in one month. His eye exam was much better news. The Ophthalmologist said Benjamin's eyes looked good and since it has been so long since his due date that he was no longer at risk of developing ROP. He said he didn't need to see him again for 6 months at which time he will start having normal eye exams to check his vision!!! Thank the Lord! His doctor's appointment to check on his hernia was fine. The doctor said they will plan to perform the surgery in a couple of months so that Benjamin will be old enough that he shouldn't have to stay the night in the hospital following the anesthesia and surgery. On March 17th Benjamin had his 6 month vaccinations and is now weighing 11 pounds 2 ounces. He also got his second and last dose of Synagis for this season. (Synagis is to help prevent RSV-Respiratory syncytial virus) At his 6 month visit, the Pediatrician said we need to almost double the milk intake Benjamin is getting. This is the best way to grow his lungs and get him off the oxygen. She also said we needed to switch him to a faster flow nipple so it would allow him to eat more, faster. We moved towards this cautiously, because we had been using this nipple before and he was choking quite a bit during his feeds, which increases the risk of aspirations, therefore increasing my blood pressure... Just kidding. It just causes even more fear, concern, etc... Thank goodness we know Benjamin is in God's hands and not only mine!

Our latest concern is that he seems to be having more acid reflux than before. This is causing him to breathe heavier, cough, and spit up lots. Please continue to pray for his body's development and healing.

We are enjoying watching Benjamin grow and mature so much. He is now smiling in response to us and seems so happy.

Settling In

Benjamin has now been home for 21 days. We are so delighted to finally have him here! Todd and I have been super busy trying to get adjusted to his schedule. We finally learned that we might need to be the ones to set the schedule... Todd went back to work this week. It has been tough, but we have been fortunate to have help from both of our Mom's- which has made a huge difference. Benjamin has been doing great. He is now sleeping at night for 5 and 6 hours at a time. We are still trying to work with him on his feedings. He gets so aggressive and sometimes chokes. The fear is that he will aspirate the milk into his lungs so we are trying to be as cautious as possible. During one of his feeds, he did choke really bad and his lips started to turn a little blue. He coughed quite a bit, but finally he recovered. It was a scary moment and a reminder we still need to be extra careful with him. The Pediatrician said his weight gain has been great so we are very pleased with that. Also, his eye exam last Tuesday went very well, it was the best report yet. The doctor said his eyes were definitely improving and he didn't need to see him until two weeks later. We have quite a few appointments next week: Monday with his Pulmonologist- we are hoping and praying that he will be doing great and will no longer require oxygen assistance and the apnea monitor. Tuesday he has a follow up visit to check on his hernia and another eye exam. Benjamin will also be seeing a Developmental Specialist in a few weeks and we will be able to get a thorough evaluation and comparison on how he is doing versus other babies his age. We will continue to update you on his progress. Please continue to pray for his development.

Some more pictures of Benjamin have been posted.

Day 147 - Welcome home Benjamin

Wow! What a journey! After spending 147 long days in the hospital, Benjamin has finally left the hospital. Benjamin got to come home last Wednesday on only oxygen, an apnea monitor and multi-vitamins. Todd and I couldn't be happier and I got to have two Valentine's, just as I had hoped.

To take you back, a little over a week ago the doctors increased Benjamin to full bottle feeds (8 bottles a day) and told us that he would have a sleep study done over the weekend to see what amount of oxygen he would need when he went home. The sleep study is basically letting him sleep over night while changing his oxygen settings every few hours while being hooked up to a machine that records how he does on each setting. His study was a little longer than usual because he was tested on 3 settings - 1/8, 1/4 and 1/2 of a liter of oxygen. We were told that if Benjamin could handle one of these settings, he could go home after his eye exam on Tuesday. After receiving the results late Monday night, the doctors told us he did very well and he would be going home on an 1/8 of a liter - the lowest setting - and an apnea monitor. So on Tuesday night, we decided to room in at the hospital so we could partake in "Care by Parent". While hooking Benjamin up to the apnea monitor, we had a few alarms due to loose leads which was scary and nerve racking. Those familiar with an apnea monitor can relate to the noise, those who are not, imagine a siren blasting in your ear. After settling in our room, we noticed how quiet it was compared to the NICU. Benjamin noticed as well since he started to cry and continued to cry for half the night. Todd and I took turns holding and rocking him and finally about 3am he went to sleep and stayed asleep until 9. The only time he woke up was for his feeding. The first night was tough; I guess Benjamin was breaking us in for parenthood. The following nights Benjamin has been home has been much easier since we had some idea of what to expect, plus we have had our mom's help us during the nights.

So far, Benjamin really seems to be adjusting well to being at home. We took him to his first appointment with his new Pediatrician on Thursday and he now weighs 10 pounds 6 ounces. : ) We are so thankful to God for our precious miracle and thank each of you for your prayers over the past 147 days. Please keep Benjamin in your prayers for steady progress and development as he grows and matures. He will have another eye exam this Tuesday and another Pediatrician visit on Thursday. He is scheduled for an appointment with his Pulmonologist in 1 month and hopefully they will determine he no longer requires oxygen assistance.


We are so excited that this day has finally come. We had no idea what was in store for us when I went into premature labor at only 23 weeks on that September night, but God did. He knew what a blessed day it would be when we finally got to bring him home. Our God is BIG! He has given us the most precious gift in the world with our son Benjamin.

New pictures have been posted...here is the link again.



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

New Pictures

New pictures have been posted.


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

Day 141- Jeremiah 29:11

"For I know the plans I have for you, " declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11


Well, we have been staying extremely busy trying to keep up with Benjamin's progress. We started out trying to be at the hospital to give him all of his bottle feeds, but soon it became too much. The doctors have been increasing him on the # of bottles he's taking quite rapidly. Just two days ago he was taking 6 bottles and yesterday they bumped him up to 8 bottles a day. We found out today that the plan is to send him home next week!!!! He is still on 1/4 Liter of oxygen and will be going home on some amount of oxygen but we aren't sure yet how much. They will conduct a few sleep tests to determine if he needs 1/2, 1/4 or 1/8 Liter. We are so ready to bring him home! Every time we visit and hold him it feels as if he is longing to get out of there. He is doing so wonderful-all thanks to God! He also has a tremendous team of nurses and doctors who have taken great care of him. Benjamin will have quite a few follow up appointments soon after leaving the hospital, but hopefully he will get home and really thrive. He is now weighing 9 lbs. 11.4 ounces. Wow!!! He is blowing through those clothes.


He will have another eye exam this Tuesday to determine if his eyes are developed enough to allow him to go home and just have follow up appointments from there.


Please continue to pray for Benjamin. We are so looking forward to bringing him home soon.

Day 130- Great Expectations

Benjamin is continuing to make great strides. He now weighs 8 pounds 13.4 ounces. Wow!!! The doctors decided to wean his flow on his oxygen today, so he went from 1/2 Liter flow to 1/4 Liter. Next step would be 1/8 liter and then breathing room air like the rest of us. It typically requires a slight increase on his oxygen setting when the flow is reduced but so far he is still on track. He is currently around 30 % oxygen.


Today Benjamin's doctors advanced him from taking 3 bottles by mouth to 4. The plan is that he should be able to go home sometime very soon after he masters 8 bottles by mouth a day. The doctor's continue to seem amazed at Benjamin's progress. I realize it is a sign of God's true intervention throughout this experience. Benjamin has also begun non nutritive breastfeeding and will continue to learn until hopefully he is able to switch to full feeds this way.


Please keep Benjamin's eyes in your prayers. He has another big exam tomorrow. We're praying that they'll find his eyes have finished developing and won't require surgery. God is working miracles in this little guy's life daily and we are so thankful for each day we have with him.


"If you believe, you will receive whatever you ask for in prayer."

Matthew 21:22

Day 124- Graduation Day to Level II

Please keep Benjamin's eyes in your prayers. Today's eye exam showed an area of concern on his eyes and the doctor said he is somewhat concerned and will watch them. He also said there is a possibility they will finish developing and be fine. He is hesitant to operate since Benjamin's eyes are so far along and already so mature. We will wait and pray!!!

Benjamin had a very slow start on taking his bottle by mouth. The Occupational Therapist (OT) had tried for five days and Benjamin really wasn't taking it. He was averaging about 10 cc's (ml) each time out of 60 cc's. The OT finally decided maybe he didn't like the taste of it based on his reactions. She suggested we bring in fresh milk rather than giving him frozen milk that is thawed. Well...we tried fresh milk and he drank the whole thing! All 60 cc's of it. It brought tears to my eyes watching him finish his first bottle. How amazing! It is so crazy how many things in our life we take for granted. Since then the doctors have increased him to taking two bottles a day. We will try that today. Come on Ben!!! They would like him to be taking 8 bottles a day before he goes home.

Benjamin's doctors also told us on Sunday night that they were graduating him to Level II status. This is wonderful. That means he is much more stable and one step closer to going home. He will be in Level II until he goes home.

We are so thankful for all of your support. Please keep Benjamin in your prayers and especially regarding his eyes.

Day 117 - Doing great

Benjamin has had a great past week. He is still on nasal cannula and yesterday they lowered the amount of flow he recieves from 1 liter per minute to 1/2 liter per minute. So far Benjamin is doing great with the change.

Benjamin now gets to play in a bouncing chair. They put him in it yesterday and soon after it started to vibrate, the batteries died, so he didin't get to play that long. The nurse said that he seemed to enjoy the few minutes it was on though. They will try it again today.

They should be trying him on a bottle in the next few days.

Today is another eye exam. Hopefully they continue to develop correctly.

Benjamin now weighs 7 lbs, 11 ounces.

Please continue to pray for Benjamin's development.

Benjamin getting ready for the big game!

Day 112 - Benjamin's Original Due Date

Today was Benjamin's original due date so he is now exactly 40 weeks old. Today he weighs 7 lbs, 4 ounces and was 19 1/4 inches long this past Sunday.

Overall, Benjamin is doing pretty good. He is still on nasal cannula, and has been on it full time for about a week, but is still adjusting to receiving just oxygen and no pressure. He has some days where he does really well and just cruises, but there have been a few days were his acid reflux seems to really effect him. He is still having some brady's where his heart rate drops. Usually he recovers on his own, but Monday he had a brady where they had to provide him breathing assistance by the resuscitation bag. The doctors just started him on acid reflux medicine so hopefully this helps him out.

He still has mild ROP in his eyes, but they are still developing. He will have another eye exam in a week.

Once he is more comfortable on nasal cannula, the next step is to try feeding him with a bottle.

Please continue to keep him in your prayers. We know God is still working in Benjamin's life.

Happy New Year- Day 109

Happy New Year! Todd and I enjoyed ringing in the New Year at The Woman's Hospital NICU holding Benjamin through the countdown to 2010..

Benjamin is doing well on nasal cannula. He has been on it full time now for the past four days. He is still experiencing some Bradycardia's- where his heart rate drops, but we are told this is normal and his aren't occuring too frequently so the doctors aren't concerned. Lately, they've been happening about once a day. Last week a doctor came to look at Benjamin's Kidney's via a Renal Ultrasound. It turns out there has been some calcification and some stones have formed. They said this is a side effect from taking the Lasix, which he took to help get rid of fluid in the lungs. The doctors say these can heal on there own so we will keep praying that they do.

Benjamin's Neonatologists' recently had an ENT (Ear, nose, and Throat Doc or otolaryngologist) come check out his vocal cords they said his vocal cords actually looked very good, a little inflamed where the feeding tube has been, but that it should clear up once removed. It didn't appear he had any long term damage from being on the ventilator and having the endotracheal tube for so long. : ) So nice to get a good report. This is especially good news because it should make bottle feeding much easier and safer for him once they are ready for him to take a bottle.

The endocrinologist examined Benjamin and reviewed his Thyroid Panel. All but one category on the test looked good so they will take another panel to follow up on January 18th. The doctor was hopeful that all was working well.

Benjamin has had so much going on lately and more to come. Please keep him in your prayers. Another pertinent eye exam again this week on Tuesday.