Another Then & Now

I decided to do another size comparison. On Apirl 1st, when Benjamin was just over 2 weeks old, we took the picture below of both of our wedding rings on Benjamin's wrist. This is a great illustration of how tiny his hands and wrists were.Here is a picture from today with my wedding ring, when he is 4 1/2 months and weighing closer to what a typical newborn would weigh. He could only get 2 fingers in it. What great growth God has blessed him with! This will be a great one to pull out on his wedding day...

Then & Now

I thought it would be fun to recreate a picture that was taken in the early days of the NICU using the same objects. The first picture was taken April 23, when Benjamin was about 6 weeks old/9 weeks before his due date, days before going off the ventilator. He is with his little bunny pal that stayed by his side nearly the entire time in the NICU. The bankets are the same as well.
Here is Benjamin today at 4 1/2 months. Check out those chubby arms! In case you are wondering, the darkness in his skin color on the first picture is not an exposure issue, rather it was due to high biliruben levels. He has changed a bit!I liked this one too.








It wouldn't be a photo shoot without some outtakes!
Bunny attack!









Eating Bunny









My favorite of the series...big yawn. Aren't you impressed on how he covers his mouth? He is such a well-mannered boy.

BIG News and a Mystery

Monday we visited the Pediatrician for Benjamin's 4 month appointment. He had his weight, length, and head measurements charted according to his due date and we were quite pleased. When he left the NICU he was pretty much at zero % in all areas. Drum roll please....weight 12%, head 14%, length 33% (!!!). We were so excited that our little micro baby is now just a small baby! By the way, that comes to 7lbs 2.6oz and 20.25". Way to go Big Ben!

As for the mystery, the most asked question of the last 4 and a half months is "what happened or why did he come early?". I finally got all my paperwork transferred and met with my doctor today. The lab results show that there was an infection, but it did not make sense to my doctor, as the type of infection it showed should only occur if my water had broke and I should have had a fever. This was not the case. I was disappointed since I received the lab report last week and saw there was an infection and had previously been told that if there was an infection, my chances of a future premature baby were the same as any other woman. This is not so, according to my doctor. It looks like Benjamin still has a 30% chance of having a premature sibling. Though this was pretty disappointing to me, I find myself still wondering what exactly happened with Benjamin and why. As a Christian, I don't believe in luck or total randomness. I will probably wonder about my sweet boy's entrance into the world and the challenges he has gone through my whole life, but for one thing I am sure: He is a miracle, he is a fighter, and God has plans for him.

More news - last time I wrote about Benjamin and his love for cannula removal. Yes, he still grabs it an pulls and we are forever trying to get the prongs to stay in his nose. Yesterday I gave in and decided to keep them pulled back from his face and turned off his oxygen. He made it 25 minutes without needing any oxygen assistance. The most he previously could do was about 10 minutes or so. Please join with us in praying that God will strengthen his lungs and help him to breathe on his own. It would be so nice not to drag an oxygen cord through the house or have to switch him to a backpack tank every time we need to leave the house. Sometimes it feels like a ball and chain to us, though we have come very far in the last month (we are near-professionals at our 3-legged race now.)

Yesterday, the Early Intervention ladies came to evaluate Benjamin. Not only did they ooh & ahh over him, they paid him some great compliments in multiple areas. While they were at our house, Brian fed him. One of the ladies paid a Brian a huge compliment on what a great dad he is. They are trained to notice the tiniest details and she commented on the way Brian interacted with Benjamin and how well he responded - gentle touches, the way he talked to him, eye interaction, etc. Brian is an incredible dad. I can tell they already have a special bond and before I know it Benjamin is going to be following his daddy wherever he goes.

Please join us in praising God for growth & recovery from his last surgery. Please pray for vigor to return in his eating (he has been fighting us the past few days on eating and we are trying to figure out why - there are a lot of variables), strength of lungs, and good sleeping for all of us!

Thank you for your continued prayers for our family.

Jamie

Back to Home

Time flies when you are taking care of Benjamin! I have hardly had time to do simple things like dishes, laundry, etc. My life is filled with demands of a newborn (or at least an adjusted newborn) and the many, many doctor/specialist appointments that come with a micro preemie.

We were discharged from the hospital on Thursday afternoon. Scarcely can I remember a time when I was more relieved to see our house! We had 3 sleepless nights at the hospital (especially the last one) and I had more than one meltdown, but by the grace of God we made it and Benjamin is doing well. He now has 3 more scars to add to his collection, now totaling 6. He still has spits up more than we would like and has some painful digestive stuff, but all in all we think he is doing pretty good. He lost an ounce from the time he was admitted to his followup appointment on Monday, but we hope he will recover that ground soon. Some good news is that prior to the surgery he grew enough that he is now reduced to 24 calorie milk, which is much nicer than the rich 30 cal milk he was on when he left the NICU, and he was able to drop one of his prescriptions.

Since the surgery we have tried to keep things pretty mellow, but we have enjoyed time with family. Tuesday night we had dinner with Brian's family as we said farewell to Brian's brother David after enjoying a 4 week visit. Wednesday Benjamin and I went for our first visit to Grandma & Grandpa's farm. We enjoyed a long walk through the filbert orchard and found a few cherries on a wild cherry tree. It was so peaceful and restful. Benjamin got his first lesson in patty-cake, Grandpa style. Oddly enough, patty-cake is part of his physical therapy!

Benjamin is a strong boy. We had a visit with the Physical Therapist from Early Intervention yesterday. We learned that even though Benjamin is medically looked at as being 3 weeks, some aspects such as muscle tone are more advanced since he has been dealing with gravity for 4 months. He can lift and move his head (and has been for 6-8 weeks) and can roll over when he is on his belly. His grip is super strong and so are his legs. She explained that micro preemies tend to have very strong muscles that push their limbs away from the body, where as full term babies have stronger muscles that pull their limbs close to the body. If given the choice, Benjamin would lay with his legs fully stretched and arms wide open, where as a full term baby would probably curl up a bit more. I was doing some of his arm stretches the other day and while stretching his arms over his head, he did a horizontal pull up! That's our strong little man!

Remember Benjamin's history with tube removal? Well he isn't so fond of his nasal cannula and has decided he had enough with it on more than one occasion. On Sunday Aunt Jenny and cousin Amy came to play for a couple hours so that mommy and daddy could go to church and Benjamin showed off his removal trick.

Here are a few more pictures of our active boy taken this morning.

Back to the Hospital for Surgery #5

Benjamin decided to remind us that the ride is not over yet, and may not be for a while. He had been a little more fussy over the weekend, but yesterday morning when after I fed him he never quite settled down. He was very uncomfortable and no matter how much I held him I could not sooth him. I thought it had to do with his digestive system since he had been spitting up so much so I thought maybe we could wait it out. After 3 or so hours of crying I found the source of his discomfort and it appeared to be a hernia from the signs the surgeons had previously told us to watch for. It took several phone calls to multiple doctors offices to figure out who we should go to. The surgeons recommended bringing him in...next week. I insisted on speaking with the nurse practitioner who was part of the team that worked with his ostomy. She also recommended that we keep our appointment for the following week and that it should be fine. I then asked who he could see to manage his pain. As Benjamin screamed in background, she agreed to see him later that afternoon.

A couple hours later we were being told that we would be admitted and Benjamin would need surgery that night or early the next morning. It is strange what can happen in a day. I woke up that morning with plans of dishes, diapers, laundry, feeding, hopefully a nap, and maybe some cleaning if time allowed. Never would I have imagined that we would be back in the hospital. The surgical staff was surprised. They also were concerned as Benjamin had developed a rare situation where the intestines where blocked and blood flow was compromised. Inguinal hernias are not uncommon in preemie boys, but apparently the blockage is, or at least to this degree. Once again, our Benjamin has defeated the odds and come up with the "unusual" senario...if we were into gambling, we would most certainly send him to Vegas with the odds he has!

After a sleepless night on the Pediatrics floor with lots of doctors and nurses coming in and out, we moved down to surgery at 7:30. He ended up with a double hernia and both were repaired. Benjamin seems to have handled it well and is now exhausted, but eating and breathing ok. He is requiring more oxygen than before the surgery and has dipped down some, so they decided to keep him overnight.

Even though this was very unexpected and difficult, there were some pretty incredible things...Brian's evening class was cancelled so he could be with me and Benjamin, the very busy surgeon's office was able to fit us in rather than just being admitted through the ER and the staff knew was familiar with Benjamin's case, and we caught it before it came to a potentially serious and possibly life-threatening point. Also another piece of good news is that he weighs 6lbs 10oz! It is good to see him grow.

We value your prayers for Benjamin for quick recovery, protection, strength in breathing, and overall health.

Two Appointments, Two Praises

The week has finished off pretty good for Benjamin. He is still spitting up quite a bit and still has a snorty nose, but we have had a few good doctors reports to give big praises to God for. Wednesday we went to his Ophthalmologist. We were a little late, but thankfully Brian and I have become a more coordinated 3-legged race team with Benjamin, his oxygen, and monitor so we were able to make up a little time in speed. That means it only took us 30 seconds to walk 20 feet instead of 3 minutes :). Good thing the Ophthalmologist was later than we were! After an hour in the waiting room Benjamin had his eye exam and the conclusion...no more retinopathy!!! The lasor suregry was a success as far as we can tell. Benjamin does have nearsightedness (so do both of his parents), but the doctor told us not to be concerned with that now as many newborns do and it usually resolves itself in the first year of life. We just praising God that he doesn't have to have another surgery!!! We don't have to go back for another appointment until November.

Thursday we visited our favorite surgeon, Dr. Bliss. We had some concerns, but Dr. Bliss looked at him and said he looked like a healthy boy. He looked for the inguinal hernia again that was a concern several weeks back and found nothing again! I am still amazed that 3 separate Neonatologists believed their was a hernia and started discussing surgery, then we (and many of you) prayed and just a couple weeks later no one could detect it, including 2 of the doctors that saw it orignally. Our God is an amazing God! Dr. Bliss gave us some counsel on potential problems to watch for for the next 13 years or so in relation to his ostomy surgery, but told us that there was no need to see him anymore unless we wanted to bring Benjamin back just to say hi. Yeah!

Happy Independence Day from our family to yours! Take a minute to thank God for and enjoy the many freedoms he has provided to us through this great country and even greater freedoms available through Him!

At Home With Benjamin

One week ago today, we left the NICU and started the next chapter of our journey as a little family. In some ways it feels like it has been a month instead of a week. We spent the first days just trying to figure out how to be parents to a preemie at home. We still haven't figured it out, but are definitely getting more comfortable with it.

Benjamin is eating like a pro. I think his friend Aiden (see 5/2 blog) must have given him some pointers on eating. We are not sure how this is possible, but Benjamin weighed 4lbs 14oz on last Tuesday, and today he weighed 5lbs 14oz at the Pediatrician's office. That is exactly one pound gained in a week! He had lost several ounces in the NICU do to poor eating and diuretics the week before leaving and had just gained it back when we left. Do you think we should stop giving him ice cream, chocolate, and bacon? I'll have to ask his doctor about that.

Friday we had our first outing, a visit to Benjamin's Pediatrician. We must have looked quite the sight as we fumbled with a baby, a car seat, a monitor, and a tank of oxygen. I remember thinking that we must have looked like an uncoordinated team doing a three-legged race when they called our name to go to the back to the exam room. It's a wonder that we didn't trip over the wires and cords!

Saturday was a bittersweet day as we said our final goodbye to Brian's mom and celebrated her earthly life and passing to be with Jesus. It was good to see family and hear a few stories about her life. It made me realize that there was so much about my mother-in-law that I didn't know and want to learn so that I can pass down stories to Benjamin about the Grandma that anxiously awaited his arrival and dreamed about swinging on the front porch and sharing a cookie with him. I wonder if heaven has a front porch swing and cookies? If so, I hope that Helen is enjoying a good swing and a chocolate chip cookie with Jesus. Here's to you, Helen. We miss you.

With the events of last week over, as family members go back to work or travel back home, it is time to start a new "normal".

New things to pray for: Benjamin is very snorty and plagued with boogers (sorry, but there is no real gracious way to talk about snot.) He gets plugged up and has a hard time breathing. They also plug his cannula sometimes, which of course blocks or limits the oxygen he gets. I have become good friends with the bulb syringe, especially at night. Please continue to pray for health as we slowly start to expose Benjamin to more of the world, and for strength of lungs and the ability to remember to breathe so that we can work toward being cannula, monitor, and tube/wire free!

Thank you for your prayers and praises to God on Benjamin's behalf!

Jamie