Catch Up

So, my poor computer still has a virus. Everytime I turn it on, it comes back! Its crazy! And my sweet husband continues to fix it, but the virus still returns. Hopefully, the whole computer hasn't crashed...Anyways, I have found a computer to use so that I can get caught up!

Moving day is Friday. We will be leaving here Friday morning headed for our big adventure. It will be quite a transition for us, but we are ready for the challenge. We did manage to sell our house here pretty quickly, and we have found a new house there, so I guess we are ready! The movers have been working at our house the last 2 days, so we are living out of suitcases for now. Brant has had some pretty funny questions about the move and what will/won't be coming with us. It is interesting to see the move from a 3 year old's perspective. I think we are all just ready for it to happen.

Sweet baby is doing well. Really just kind of more of the same. He is still slowly, steadily putting on weight. He is not a big fan of night time sleep, but is a pretty happy little guy during the day as long as things go his way. He learned to roll over 2 weeks ago! That was big for us, and I was so thankful to see him learning new things. He has the biggest smile that can light up the room.

He is still off of the NG tube. We decided that the tube wasnt really a success for us. It did not help him "catch up" and gain the weight. So we are now testing for a couple more GI issues. In a little over a week, he will be tested for Hirschsprung's Disease. It is disease where the colon doesn't move food through the system the way that it should. It causes severe constipation (which can lead to food coming up the other way and refusing to eat). He will also get an endoscopy at some point in April probably to see if his reflux is controlled and to check for allergens. I am assuming this will test for an allergic condition called Eosinophilic Esophagitis. We have also added a new medicine to help with motility of food through his system.

Our sweet little one is quite tough. He has put up with a lot of pokes and tests. He still seems uncomfortable. He now arches and throws his head back A LOT. We are still looking for answers to learn how we can help him feel better, sleep better, and grow.

So that was a real quick catch up! Thanks for checking in!

My computer has a virus...so I will catch up next week!

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!