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

In DueTime...Home at Last

As I type this I am sitting in my living room watching my baby boy sleep...that is right, BENJAMIN IS HOME!!!!!!!!!!! After spending 103 days in the NICU (but who's counting?) we are home at last, and 1 day before his original due date!

The past few days have been a blur of activity as we prepared for Benjamin's departure. We had to meet with numerous doctors and specialists for final instructions, trainings, etc. We have been saying goodbye to the staff, which has made leaving bittersweet. These are the people who saw him come in as a 1lb 9.6oz baby with multiple complications. They used their talents to keep him alive, but they were more than just hospital staff. I cried on the shoulders of more than one nurse there. They made me laugh when I needed it most, they celebrated milestones, both large and small, and gave encouragement when things didn't look so well. His primary nurses became almost like family and even went together and bought him a going away present. It was definitely strange to walk out those doors with Benjamin, knowing we would not be back. I savored the moment. I so vividly remember walking in the NICU for the first time and seeing his first nurse Linda. Oddly enough, it was Linda that discharged him and escorted us to our car.

So, now we are trying to figure out how to be full time parents of a preemie with some special needs. It is pretty challenging to get around with oxygen and a monitor, but we will figure it out. Hopefully I will not panic every time the monitor goes off for very long!

A few things to pray for...that Benjamin will grow and gain weight well so we can start reducing the fortification of his food. It is really thick and makes him spit up more. That we will adjust to having him around and doing a lot of the things the nurses used to do with grace and joy. For continued protection over Benjamin in regards to health and breathing.

I can tell it will take time to adjust to this...it has taken me about 6 hours to complete this entry!

Sunrise, Sunset

It has been one extremely tough week. We have experienced great joy in Benjamin's progress and expected discharge, but are saddened by the passing of Brian's mom yesterday morning. Sometimes it just doesn't seem fair. Helen wanted so badly to get to hold Benjamin and was just a matter of days from beting able to. Right now we are working through a flurry of emotions with both this loss and preparing for Benjamin's long awaited homecoming. There is so much to process that it can be overwhelming at times. It is like it is the sunrise of Benjamin's time here on Earth and the sunset of Helen's. Please keep praying for us and Brian's family, especially his dad. We know that she is in a far better place, but we miss her.

As for Benjamin, he is eating ok (much better today than the past several days), his oxygen requirements are down, and he is on the fast track to going home, hopefully Tuesday. He has lost weight over the past week, so they increased the fortification to the maximum level in hopes that he will start gaining again. We have been enjoying out own private room in the NICU. I asked how we were so lucky, and they told me that he is the old man of the unit and he earned it. Today was Benjamin's 100th day in the NICU. It has been nice to have a little more space and privacy.

Today Benjamin had his second hearing screen. He failed the first one for both ears. Today he passed on his left ear, but his right ear failed again, so he will be seeing an audiologist. Another doctor...Here is who Benjamin will be seeing after leaving the NICU: Pediatrician (of course), Pulmonologist for his oxygen needs, Dietician for his nutrician, Surgeon that did his ostomy surgery, Opthamologist for his eyes, Physical Theoropist for neorological development, and now Audiologist. That is too many "ists" for me! Whatever it takes to keep him healthy I suppose.

Please pray for Benjamin's health during the transistion. We have been reminded several times this week that he needs to be protected and essentially kept in isolation of sorts as much as possible when he goes home because of his fragile immune system. Please also pray for Brian and I as all that is happening at once is very stressful.

Thank you dear friends for your prayers.

Tonight I write with both joy and sadness. Joy because Benjamin is expected to come home next week. This week has been a flurry of training, meeting with doctors and specialists, and other things in preparation for our transition to home. Benjamin has been moved to the standard nasal cannula, similar to what he will go home on and has done great. He hasn't been eating quite as well, but still in the acceptable range. He has lost a few ounces, but the doctor feels that is ok for now. We have been enjoying a more private room at the NICU that has been wonderful. Now all we need to is tie the loose ends and we will be on our way home!

Amidst the joy is some sadness. Helen, Brian's mom, is really struggling to breathe. The cancer has really affected her lungs. She is being cared for by hospice and we are praying for peace, healing, comfort, and rest. Please pray for her and Brian's dad, Erle too. She has been wanting to hold Benjamin for a long time and has not been able to see him since he was about a week old. We want Benjamin to know the arms of his grandma.

Lastly, Brian's birthday is today.

I will try to upload more pictures soon. I have some really cute ones of Benjamin and his daddy. He has to be one of the sweetest babies I have ever laid eyes on!

3 Months and Counting

Happy 3 month birthday (yesterday) Benjamin!

Benjamin is really starting to eat well. Friday night at about 8pm he decided he had enough of the feeding tube and took it out himself! Since then he has taken every feeding by mouth without needing the tube!!! This is fabulous and we are praying that he will be able to continue this trend as it will enable him to come home. I believe that he must eat on his own at least 3 days straight and gain weight before he can come home. The next challenge will be to breathe better on his own. Right now he is still on a nasal cannula, which they expect him to go home with. He was down to a pretty low flow, but this evening they had to increase it a bit, possibly due to lots of energy in eating and an eye exam. Please pray that his lungs are strengthened.

He is growing! He is 4lbs 14oz. We are hoping that he will grow in length more this week too. He gets measured tomorrow, so we will see then. Possibly the biggest news of today...he moved out of the Intensive Care Nursery and into the Intermediate Nursery! It is still part of the NICU, but it is the side for graduates that will be going home soon. For 93 days I have watched dozens of babies come into the unit, stay awhile, and move on over to "the other side" and now it is finally our turn!!!

Our most asked question these days is of course, when will he go home? It could be as early as a week if he can be weaned down on his nasal cannula and eat well. We still have a lot to do to get ready for his discharge like taking an infant CPR class and carseat class (yes, we actually have to take a class on carseats! I guess it is not as straight forward for preemies?), cleaning our house that has been under some minor construction (thank you Curt and John!) and totally neglected the past 3 months, and setting up Benjamin's new room. Good things are coming! YEAH!

Getting Closer to the Big "D"

The past week was good, but busy. Benjamin has started doing better with feedings and has taken the entire prescribed volume of milk on several occasions. I usually get to feed him and therefore have been spending more time at the hospital. He hasn't had a brady episode that I know of since the one a little over a week ago that I wrote about last time (thank you God!) He is still not gaining much weight. He actually lost weight a few days and as of yesterday was just getting back to the weight he was a week ago. My thought is that this is because he is burning more calories eating and keeping himself warm (which he is doing ok with again). To hopefully help with weight gain, they decided to fortify his milk, and as of yesterday they are fortifying it even more.

Despite being small, he has still received a good report overall from his doctors. Multiple doctors and nurses have commented on how good he looks and behaves for being born so very early and also having gone through so much. They have said that he doesn't have the typical "25-weeker look" and "toaster head" (skinny long face from laying on his back so long and having his head moved only side to side.)

One thing to keep praying about, but I am already praising God for is that his doctor checked up on the potential hernia situation and she believes that there is no hernia!!! I asked her if it could have resolved itself and she said no, they do not resolve themselves. What a miracle! The 3 doctors that have seen him before her were convinced that he did have the hernia. They will have a surgeon look at him to be sure.

The past few days we have been hearing the big "D" word more than once - discharge! That's right...the end of this NICU marathon is almost in sight. It has been 12 1/2 weeks since we walked through those doors for the first time and it sounds like we might be leaving for good by the end of June, possibly within the next two weeks! Benjamin will likely go home on oxygen and a monitor, but we will be home! All he needs to do now is eat every feeding completely for a few days, pass the car seat challenge (1 hour sitting in a car seat without having any breathing/heart rate issues), and not have any apnea episodes or severe oxygen desaturation episodes for about a week or so. Basically, he has to behave like a full term baby. He is getting close! We are praying that he will be a strong eater and good breather. How what exciting things await us in the coming weeks!

Zero % ???

Yes, it is true. Despite the fact that Benjamin has been consistently gaining and growing, he is hanging out at 0% for both weight and length for babies both born and unborn for his gestational age (36 weeks). What does that mean? He is a very little guy, but a mighty warrior nevertheless! He is now 37 gestational weeks and will be 12 weeks old on Friday.

Since Sunday morning Benjamin has been a little off. He has had a hard time holding his body temperature and has required more oxygen and a higher flow pressure on his nasal cannula. We think this is primarily due to the fact that he received immunizations spaced out from Thursday to Sunday, and hoping that he will bounce back soon. He has not been eating very well either. When I was feeding him on Sunday he gulped some milk and ended up having a pretty severe brady episode where his heart rate dropped for several minutes. It was one of the worse ones I have witnessed.

So he is small and is having some feeding/brady issues and not feeling so great, but the good news is that he is back on 100% milk (vs formula) which they tell me is like liquid gold to preemies and tonight he was a superstar and broke his personal record and took 35mL out of 41mL by mouth!!! Yeah Benjamin!!! I was very impressed since he only took 10mL total earlier that day. He is also healing up nicely from his surgery.

Here is a funny little thing about Benjamin. There is a little Fisher Price aquarium that plays music and makes bubbling sounds and hooks onto the side of his crib that belongs to the NICU. He seemed to enjoy the soothing music on multiple occasions, but I didn't know just how much until yesterday. He was sleeping and the aquarium turned off as it automatically does after a period of time. A few seconds later Benjamin started to squirm and then cry, so I turned it back on and within a few seconds he was peaceful again. I guess I am going to have to find one of those for when we get to take him home!

Speaking of taking him home, we have had multiple people ask when he will be coming home. It is completely dependent on his ability to breathe, eat, and grow on his own. One of his Neonatologists estimated as early as the third week of June to the second week of July. I think the third week of June is probably a little to soon, but I will be super excited if we get to celebrate the 4th of July together at home. It is so incredible to start thinking about coming home. Today was our 82nd day straight in the NICU and it will be strange not going up there every morning.