Tubie No More...or At Least For Now

So, after 2 weeks with the NG tube (and little to no sleep), I pushed to get the okay to pull the tube. I have learned how to be a bit of a pushy mom sometimes. Because he was taking in the appropriate volume of formula orally, I felt as though the tube was doing more harm than good, so at least for the time being, B's little face is tape-free! Woo-Hoo!

The tube went up his nose, down his throat, and into his tummy. His nostril was very irritated and it even looked as if some mold was forming in the tube. This type of tube is supposed to be changed weekly and every 2 weeks at the latest. We pulled the tube and opted not to put a new one down for now. His oral intake had increased substantially, so the continuous feed was really no longer needed. His GI agreed that we could stop using the pump and just feed B orally. However, she did want us to leave the tube in until he showed significant weekly gains. I decided that there was no sense in leaving the tube in if we weren't using it and it just irritated him. We can easily get a new one placed if needed, but I wanted to give my little guy a break, and I feel confident in his ability to take the appropriate amount by mouth. We will see how it goes. I am very thankful that we are all sleeping a lot better around here now! B is no longer waking upset every hour, and I think the increased continuous sleep could really help him grow as well! Let's not underestimate the power of sleep!!! (This coming from someone who LOVES sleep...)

At B's last weight check, he had only gained 5 ounces in 9 days with the feeding tube and continuous feeds. This is not the catch up that his doctors were hoping for. They were hoping for at least an ounce per day. He was taking in huge amounts of high calorie formula for his size to allow for catch up, so I am really not sure why he didn't gain more. Maybe it was because he wasn't sleeping...? You burn more calories when you are awake afterall. I am hoping that this week he will pass the 12 lb mark. I think he will!

His 4 month stats:
weight 11.75 lbs
height 24 inches
head 16 inches?? I think..does that sound right? I will double check on that next time I am there...

OK, and now for a funny Brant story. Tonight, we are just playing in the living room, and he asks, "Am I still going to be Brant when I grow up?" and "Is Beckett still going to be Beckett when he grows up?" I tell him yes and yes. You will always be Brant, etc... And he proceeds to tell me that when they are bigger, he and Beckett will always be best best friends. How sweet is that? Tonight, he was also wondering why we have fingers...Oh, the mind of a 3 year old! It's pretty amazing, really.

Have a Happy Monday! Thanks for reading!

Funny Thought

All December long we listened to Brant's "Away in the Manger" CD....over and over and over again. So we get in the car last week, and Brant once again requests to listen to "Away in the Manger." I reply that Christmas time is over. And would you like to know what my 3 year old son said:

"But GOD is ALL YEAR LONG!"

How do you argue with that??? So yes, we are still listening to Christmas music on our car rides...

Pictures from TCH (Oct. 26- November 2)

While we were at TCH, Halloween came and went. Some of the babies were dressed up in Halloween costumes, but since we didn't think we would be there, we didn't pack Becketts. I still need to take his picture in his costume. Anyways, Brant stayed with Aunt Kristin and Uncle Davis. Kyle, Kristin, and Davis took Brant and Annalise to a Fall Festival at their church. Brant was very proud of his train conductor costume this year. He had to pose for a pic!

This is Beckett after he got his feeding tube on Saturday. He wasn't sure what to think of it. They put it in and then after an x-ray, they realized it needed to be moved. I think it was a little traumatizing to him to have that done not once, but twice in a day!

Beckett got lots of X-rays while we were there. He was kind of dancing on the table in this pic!

Notice the tape on Brant's upper lip. He decided he needed a moustache like Beckett! What a sweet big brother. I am so proud of Brant.

Finally sleeping. Sweet baby didn't get much sleep because of all the testing and just not feeling good. We were always thankful (still are) when Beckett sleeps.

Please continue to pray for this little guy. In many ways, putting the NG tube in kind of feels like we are back at square 1. We were hoping that everything would kind of take off when we left the hospital with the change in formula and meds. Instead, I have ended up on the phone with his GI nearly once a week with new and different challenges and questions. He does seem to feel good more often. He smiles and laughs. He is very ticklish-especially aorund his neck. He tolerates "tumy time" a little better and his neck is getting stronger and stronger. He can lift his head really well now. But you can tell that something is definitely still bothering him. Hopefully, after the catch up from this tube placement, he really will take off!

More Backtracking--Our Week at TCH

So, now for some more backtracking...How did we get here?

Well, we loaded Beckett and ourselves (and that is pretty much all) up in our car for a quick last minute day trip to Houston where we were going to see a GI specialist at Texas Children's for Beckett's major reflux and weight loss. When we arrived, Beckett weighed 8 lbs 5 ounces--I think. We spoke with the doctor briefly, gave her Beckett's health history, and she did the typical things such as listening to his belly and pushing on it. Then, the shock of our year, she told us she was going to admit him for monitoring and testing, and we could expect to be there for at least 3 days. He was 27 days old when he received the label, "failure to thrive." I think we both felt overwhelmed and unprepared. We had not packed bags for that kind of stay, we had not made any plans for Brant. We actually hadn't even told Brant "bye" in any special way because we didn't even know we were going to Houston until after he was at school. Calmly, we made phone calls and plans fell into place. Kyle even made a quick trip to Target to buy clothes and toiletries for us.

We were escorted up to the 12th floor (the yellow GI floor) and taken to the parents lounge area. They showed us the refridgerator we could use for food, cups, ice, drinks, etc...I was still in disbelief and couldn't imagine that we would be there long enough to use the fridge (we were.)! Anyways, we were eventually taken to his room with a huge silver metal crib for my tiny baby. I will probably always remember that crib...It was definitely not very cozy looking.

Texas Children's Hospital is different then any hospital I have ever been to because it is a teaching hospital. We met interns and fellows and attendings. And I quickly learned that I could get more information on Beckett by standing at the door eavesdropping during their meeting (they meet outside the patient's room and discuss everything before walking in) then I could when they came in to talk to Kyle and I. Also, one does not sleep much when at the hospital with a newborn between waking the baby to eat every 3 hours and people coming in to test his vitals every 4 hours...no one sleeps. Finally, I learned that shows like Grey's Anatomy and House are grossly underestimating the mess of the family sleeping in the room with a patient. Those shows do not show you where anyone sleeps or where all the junk and snacks and clothes are. One more thing that makes them unrealistic.

That night, at midnight, (yes, nurses have the best timing) the testing began. They drew several viles of blood and put an IV in his foot. It looked like a cast because of the way they have to secure it. It was as big as he was! The week carried on with multiple testings, and they quickly ruled out Cystic Fibrosis and any kind of anatomical problems with his GI track. They beefed up his formula to be higher in calories. Still, no substantial gain and definitely no improbement in the vomit. After bloodwork that indicated a high(? ) number of eosinophils (white blood cells that can indicate allergies), Beckett was switched to an elemental formula. The over-the-counter hypoallergenic formulas like the one Brant was on, still contain traces of milk protein. The protein is just very broken down. Beckett's system is so sensitive that it recongnized and reacted to those broken down pieces, so his formula is based on amino acids instead. There are no actual proteins. And we just thought that Brant had bad allergies...Ha! His rash started to fade and this was a good sign. On Saturday, after still no substantial weight gain, an NG tube was placed. We were instructed to feed him from the bottle for 15 minutes. After 15 minutes, babies begin to burn more calories then they are taking in. Then, whatever was left in his bottle, we poured into a syringe that was attached to his tube, and gravity fed it to him via tube. This is called a bolus feeding. We were not on a pump at that time. I honestly prefer bolus feeding to continuous pump feeding. I think seeing the feeding tube came as quite a shock to me. For some reason, I just never thought of this as something my baby would need--even during our stay at the hospital. I never thought of him as a candidate for a feeding tube. Well, the sweet boy started gaining and reached his birthweight! Yay! We were thankful for his progress...I just wished he didn't need the tube to make the progress.

After 8 days at TCH after exposing our newborn to more testing then some people may have in a lifetime, we were released to go home (with the NG tube). We left with the diagnosis of a protein allergy, reflux (that's a shocker ...please note sarcasm) and failure to thrive (FTT). A few other allergic disorders were mentioned, but the elemental formula would treat it regardless. He weighed 9 lbs at 5 weeks. We were thankful to go home, and hopeful that his weight would take off from there.

I will post some pictures later. Thanks for checking in!

On Becoming Tubie-wise

Before the birth of each of our boys, I read the book, "On Becoming Babywise." Now I wouldn't describe myself as a serious Babywise mom, and there are definitely parts that I don't agree with. But it is a great resource for scheduling your child's day and helping them develop a rhythm for day and night, etc. I found the scheduling of things very helpful with Brant as a baby. He quickly and fairly easily, fell right into the rhythm of eating, being awake, and taking a nap. My days were fairly predictable. I somehow thought that this would help me be prepared for adding another baby to the family. I was so wrong. Raising Beckett has been completely different from Brant so far. I am slowly becoming "tubie-wise." This feeding tube thing is harder to learn then you might think. Here is what I have learned so far:

1. Continuous night feeds aren't as convenient as that might sound. Yes, I am sure many of you may think how nice to have a machine feeding your baby so you can sleep. However, it has been anything but that. I am awake more now. And you think of things such as the fact that you can't feed him formula that has been sitting in the bag on the pump stand, unrefrigerated for 8 hours. I mean, you would never feed your baby prepared formula in a bottle that has sat out for 8 hours. So, when Kyle and I realized this would mean waking every 2 hours to add fresh formula to the bag, my engineer husband quickly devised a way to keep the formula cold for 8 hours involving an insulated lunch box and lots of cool packs.

2. A nursing degree would be very helpful in feeding a tube feed child. Any time before I put anything into his tube, I must check the position of the tube with a stethoscope. I put a syringe in the end of his tube, the stethoscope on his belly, and actually blow 3 mL of air into his already gassy belly to listen for air in his tummy. If I hear the air, I know it is in the right place. This would all be much easier if I knew where his tummy was. (I have now learned, but still struggle with it every night). I also have to draw formula back through the tube to assure its placement. I have also learned to vent air from his tummy using the tube. The tube also needs "flushing" to stay fresh. This upkeep and "nursing part" has become the most stressful part of the feeding tube for me.

3. A huge sudden increase in formula in a baby's diet will make him VERY cranky. Imagine if you were used to a 2000 calorie per day diet, and someone suddenly increased it to 1 4000 calorie per day diet. You wouldn't feel so great either.

4. Timing is key. I am still trying to figure out the best time to start the pump. I don't want it to be too close to his last bottle of the day to where he will be over full- cause that makes him mad. But I also don't want to wait so long that he is too hungry to wait for something that only pumps one oz per hour into his belly.

5. It is hard to leave him alone for even a minute without watching him for fear of him pulling out his tube. He enjoys watching his mobile in his crib, but now I just wonder about the tube the whole time...

6. No book on healthy sleep habits, scheduling, baby whispering or even the happiest babies on the block will help me with this.

7. It is exhausting. Counting ounces and calories and timing it all just right. Making sure he doesn't burn too many calories while eating. Making sure he doesn't burn too many calories being awake or upset. I am exhausted, and I don't deal with many of the medical complications that many other moms of tubies deal with. Many of these children require around the clock care. I admire the strength of these parents doing what feels like the hardest job on earth. But still, I am exhausted.

8. It is worth the hard work. This week we are thrilled that BECKETT GAINED NEARLY 7 OZ! Babies at this age are expected to gain one once per day, so about 2 lbs per month. Up until now, Beckett has gained 2 lbs in 4 months. So we are very excited about this gain! Also, I have noticed a decrease in the amount of spit up today. Yay! It is odd that this tube-- that honestly wears me out--could change his quality of life. That is a good thing.

Thanks for checking in on us. Hope you are having a good Wednesday!

Why the tubie?

So, I have Mickey Mouse Clubhouse- also know as, "Hot Dog," around here-- blaring in the living room and Beckett is asleep so I decided I needed to take a minute to explain why we have ended up with an NG tube again.

Sweet Beckett has the oral mechanisms and the ability to eat by mouth, but for some unknown reason, his little body just isn't gaining weight. He does take bottles during the day, and up to this point, he took a bottle at night as well. For the first 10 weeks of his life, I woke up every three hours around the clock to feed him. At times, he doesn't necessarily enjoy the bottle, but he will take it. He seems to eat better when sleepy and relaxed. We have known for over a month now that placing the NG tube was a very likely possibility. We were just very hopeful that maybe he was about to take off and start gaining, so we put it off. We tried adding rice cereal to his bottles to help keep it down and add calories, but that seemed to make it worse. He would scream and vomit and then choke on the vomit to the point of turning red because it was so much thicker. We quickly stopped feeding him rice. We have also tried Simply Thick (a gel thickener), but that did not seem to help either. He is on Prevacid 2 times a day, and he takes an antibiotic (Erythromicen) 3 times a day to help with motility (movement of food through the system). His formula is also concentrated to be 24 calories per ounce (as opposed to the typical 20 calories), but still he has not shown substatial gain. We managed to hold off on the tube though because he was gaining (ever slowly- but still, it was gain). Well last week we had a set back, and Beckett lost 5 ounces. After this loss, the doctor ordered his NG placement as well as the schedule for the continuous feeding at night. Whether the loss was due to a food sensitivity or a slight bug or who knows what, Beckett just can't afford to lose any. 11 lbs might not sound that small, but I guess when you consider he was nearly 9 lbs at birth, it shows very little gain over 15 weeks. So in went the NG tube. The goal is that it will help "catch up."

So here we are, feeding our baby via a tube at night, still looking for answers. Still wondering why he doesn't seem to gain, despite eating. He does spit up a lot, but I am certain that he keeps some in. So at this point, we are still looking for answers. I, for one, just do not feel like "Failure to Thrive" is a diagnosis. Instead, it seems more like a symptom. I want to know the "why?" The "why" to his crying and discomfort and lack of gain.

Despite not knowing why, I do feel peace because I know that God is in charge and He knows everything there is to know about Beckett and our family. God has a perfect plan for our little man. I find myself wondering things like how long is he going to have the tube, or why does he seem to need so many calories to grow, or isn't this just a phase. But then I remember that God knows. And that gives me peace.

Beckett has a funny personality, and he loves to laugh. Especially at his big brother. I just had to post this picture. When he feels good, he is one talkative little guy with an amazing smile. We love him.

Becoming a "Tubie"

So, I have learned that "tubie" is the affectionate term the community of tube feeding uses for their children who are fed via a NG tube, NJ tube, G tube, or GJ tube. I really never knew there were so many types of tubes. This week, Beckett, became a tubie...It is not permanant, as with many tube-fed children. It is a means to make sure he is getting the nutrition he needs to help his development while we continue to look for answers. Getting his tubie placed was quite the ordeal. There were MANY conversations between me and our specialist, PCP, and home health. Beckett was quite the little trooper. He did not cry at all when the nurse put it in. He did not crank up until we had to tape it down. We finally got it all taken care of and Beckett got his NG tube. At night we hook him up to a machine that pumps his Elecare formula into him at a slow rate for 8 hours. Please pray that Beckett will gain weight rapidly and "catch up." Please pray also that he does not become tube-dependent. This can happen sometimes when kiddos realize that they are getting full all night long without putting forth any effort. They slowly become less and less interested in daytime feeding via bottles thus decreasing daytime input. We want Beckett to get his additional nutritional needs met with his tube, but not get to the point where he will not feed orally. Thanks for checking in!

I will do more backtracking on how we got to this point, soon. But I just wanted to post this update for now.

Updates on Beckett

So I really have been meaning to start a blog for quite awhile not (since before Beckett was born) as a way to share with our family, but for right now I am thinking it will mainly be updates on Beckett. I will definitely throw in funny Brant stories and updates on the move, but I think this will be the perfect way for me to update on Beckett. When he was in the hospital at TCH, I kept thinking that updating would be so much easier if I had a blog, but then I thought that my baby doesn't have any real health conditions that would cause for a blog. But here we are 3 months later still dealing with it all.

At the end of the day yesterday, I realized I had talked to his specialist in Houston 2x (5x all week), his doctor's office here 2x, and the Home Health Agency 3x. Sitting there thinking about all the medical professionals I speak to in a week, I realized that yes, my sweet baby is sick.

Okay, just got off the phone with his PCP, and we are headed up to the hospital nursery to get an feeding tube placed...more on that later.

First Days at Home

So the first few days at home with both our little boys were a little crazy, but we were figuring it out a day at a time...really an hour at a time would be a better description. Brant was absolutely in love with his baby (as were Kyle and I) and he handled the transition exceptionally well. He even told everyone that came in to meet and hold Beckett that they could not have HIS baby...very sweet. He has such a kind heart, and I am so proud of him.

Nursing Beckett was going well, and we were supplementing with Newborn formula (which I might add contains both milk and soy) due to his jaundice. We quickly learned we had another reflux baby. I remember looking over at him in his pack n' play and his head would be in a pile of brown--yes, brown--spit up. At this point, I starting thinking, "uh-oh." We had been down this road before. Brant was a refluxy baby, intolerant of both milk and soy. He was on an over-the-counter hypoallergenic formula as a baby. I had a feeling that we were dealing with a dairy allergy. Determined to nurse this baby, I quickly cut all the dairy out of my diet, and switched Beckett's supplemental formula to Alimentum.

But things did not get better, my sweet baby cried and cried, arching his back, then tucking in his legs. It broke my heart to see him hurting and to feel so helpless. Vomit spewed out of his mouth with force, and it just kept coming. I won't describe his diapers here, but something was not right. We tried switching to the other brand of hypoallergenic formula to see ifhe was just brand sensitive. At our 2 week check up, still below birth weight, our doctor started mentioning GI specialists for this little one. All I thought was that surely it wasn't that bad, and he was just like his big brother...a happy little boy who grew big despite reflux.

After two more weeks of supplemental formula tobeef him up, we returned to the doctor's office to discover he had lost more weight rather than gained. I must sayI was completely shocked to see the numbers on the scale...I don't know why I was so surprised when all the child did was vomit, but somehow, I was. Sweet Beckett didn't sleep andhad a hard time eating. His eyes were always wide open, even in the middle of the night. He would go through the whole day with only 2 30minute naps, clearly too uncomfortable to sleep. At this time, we knew we needed to get in to see a GI doctor. The next morning, Tx Children's Hospital called and said they had an opening. We loaded Beckett up for our "day-trip" to Houston.

The pictures actually progress from bottom up...He is the youngest at the bottom, and a month old at the top. I really need to figure this picture posting thing out.

Finally...a blog!

So, I finally decided to join the 21st century and start a blog...I have actually been intending to start one for a long time, ever since the birth of our second little boy, Beckett. But, life has been a little crazier then expected, and it has taken me awhile to get to it. I thought this would be the perfect way to keep our family updated on what is going on here with the boys...especially whithour upcoming move. I was also looking for a way to journal our day to day lives. So there will definitely be some backtracking, just so I can log some of the funny things that have already happened. So anyways, thanks for checking in on us. Now, for some backtracking...

Big brother Brant (3.5 years) helped Kyle and me welcome sweet Beckett into our family at the end of September. Brant was so excited to meet his baby brother. He talked about teaching him to walk and talk and reading books to him. He has such a loving personality and was very excited to have a playmate to share his toys with. Yes, that's right, he volunteered to share his toys with his baby brother. After a healthy pregnancy, Beckett (who Brant lovingly called "Bucket" for the first few days until some speech intervention) was born weighing in at 8 lbs 12.5 oz and measuring 20 inches long. After all, he was 5 days late, so yes, he was a big baby. Two days later, we came home from the hospital ready to take on the challenge of being parents to two little boys. We were--and are--so thankful for these precious little people that God has entrusted to us to raise and care for and teach about God's love.

BTW, I am currently trying to learn exactly how to blog....Hopefully, I will figure out how to put pictures where I want them with the text, soon...Computers aren't really one of my strong points.