Counting Calories

Today has been a good day so far and Granton is happy and playful. Right now he is bouncing in his exersaucer and watching baby enstein. We already ate breakfast, took a nap, ate lunch, played in the crib while listening to music, and read two books. Now, we are waiting to go to radiology to have an nj tube placed in his intestine--slightly further than the ng that goes to his stomach. We passed this up two days ago to try to meet all his needs by mouth. As you know, Granton does things in his own time at his own pace. So, we are making the best decision to put in the nj tube based on the past two days. With the iv fluids and oral feeds combined, we managed to consistantly give him about 2/3 the amount of calories he needs in one day. Ideally, he needs approximately 800-1000 and we put in about 7oo each day. On average, only 400 calories were from food that he would eat orally. We were very close, but most of the calories he consumed did not come from the formula with the added vitamins and nutrients he needs. If he tolerates the nj tube then we can put in a g-tube--the second belly button--which we have ordered for next week. Granton is being maintained by iv fluids and whatever we give him orally until he receives the nj tube. By noon today he ate 85 calories and drank very few of them which is an issue. He will still receive the iv fluids through the weekend as we push his feeds very slow. His weight did not decrease today which is positive, but it did not show any increase either. He weighed 7.51 yesterday afternoon and 7.515 this morning. We've sure learned a lot this week about different foods and the calories they have. I am thankful for everyone helping us through this nutrition adventure.

Jenni

Yes, that's cookie on my face that my mom's been feeding me. She says my milk will taste better if I have a little oreo to go with it. Today has been a good day. I practiced pointing at my cheese and picking it up with my pincher grip. Then, this afternoon Mom swaddled me like she used to when I was a newborn. I gazed at her through my blanket and she bounced and held me for quite awhile. It felt like old times again. The nurse says I'm spoiled, but I know my mom likes to stare at me so I let her. I have been so happy today and can't wait to see my dad tomorrow. Have a nice night.

Love,
Granton

We are gaining weight slowly but surely. Granton has had the opportunity to eat by mouth again today since he couldn't hold anything down the ng tube. We think it was rubbing his throat and gagging him when we would try to give him meds through it. So, he ended up sleeping through the night without an ng tube and without any throwing up. Today, he's been eating slices of cheese, yogurt, cereal, peaches, progestamil (formula), medicine and enfalyte. He has taken these all by mouth in small amounts and has kept them down which is a praise. I am still concerned that he is not getting enough nutrition because he only intakes about half the amount of calories that he needs per day. The doctor has given Granton some extra help through his iv to give him the nutrition he needs until we can get a g-tube put in. I actually made the suggestion to put in a g-tube with the idea that Granton would not gag, choke or throw up because of a tube going down his throat. He also eats better when he doesn't have a tube down his throat. Also, that gives us some time to keep working with him on eating orally. Wouldn't it be marvelous if another miracle was in store for the weekend and Granton would suddenly start to eat more by mouth? Practically speaking, I believe the g-tube is needed to get him back within his weight range and like I mentioned yesterday, I don't see any bacteria infection risk as we had thought before. Spiritually speaking, we will need many prayers and God's intervention to get Granton to eat up to speed in three days and avoid getting a g-tube. I am encouraging Granton for all his progress and/or any interest he shows in taking a sippy cup or eating. However, I am not convinced that Granton can pack on the pounds this way for right now because this is a very slow process and we don't want to force feed him. So, all that said we continue to pray for what's best for Granton. I have often been corrected in the past and I certainly hope that's the case this time, but my nature is to be as honest as I can and tell you what I see. Also, we are praising the Lord that the infectious disease doctors approved that Granton could get rid of the bactrum antibiotic that has probably been giving him very loose stools. Time will tell on that. To wrap things up, we will be here in the hospital for as long as it takes to get Granton to gain a tolerable weight and the g-tube will only be temporary to get to that point. I am not in my anxious hurry to leave as I was before. I know that the set back will take some patience to work through. Here is a very encouraging verse that spoke to me this morning: We must believe that God exists and that he rewards those who earnestly seek him. Hebrews. I have no doubt that the Lord will work everything out according to His ways and His time and I accept those ways even when they don't match mine.

Jenni

After a days diet of yobaby and enfalyte Granton did manage to keep the food in his stomach and gain a little weight. We are still going to try again to start the ng feeds since this method is more ideal for gaining weight faster. I pray that Granton will be able to tolerate the continuous feeds and not throw them up. The nurse will help us by going really slow on the volume working up to 35ml with a more dense higher calorie formula. I believe that he will hold them down if we go gradually and slowly as we did over the weekend and not fill him up too fast. If not, we may have to try the nj tube that goes to the intestine instead of the stomach. If that doesn't work we can try a g-tube. The g-tube is less infection risk because it is directly connected to the gut and not the blood stream. So, that is good to know. We will try to avoid giving him nutrients and calories through the iv since it can't be depended upon to work for very long or trusted to keep Granton from getting a bacteria infection. However, the nutritionist are very concerned that they will have to resort to this if Granton keeps losing weight. He is not near to the level he should be because of the big virus set-back. Also, we know that the antibiotic bactrum might be causing the nausea and this afternoon we found out that he only has to receive this med 5x per week instead of 7 which might help some. This is what we are learning and praying for--mainly no puking so that we can move on to gaining weight. Hope you are all doing well. We appreciate everything.

Jenni

It's a drippy day in KC this morning. I am wearing jeans and a jacket and the heat was on when I entered the building. Feels like fall. Well, Granton was awake all night throwing up his feeds. This morning since 9:00 he's had one small puke. He is super sensitive to his ng today. Even 1/2 an ml of med or just testing for placement upset his stomach. We have been pushing his meds very slow. He has one more left to take and we've been taking them over a two hour span. He has taken pedilyte by suringe and of course the meds and hasn't thrown up. We are thankful he is taking something by mouth, too. Vascular access got an iv placed on their first try and I barely heard a fuss from Granton, so I'm thankful he's learning to deal with being stuck. He will be getting iv fluids soon. Also, a little blood showed up in his stool this morning. We are praying that his stomach will regulate itself again. We are praying for the Lord to show us and the nutritionists the best way to help Granton gain weight. I happened to find some yobaby yogurt that is basically organic whole milk and tastes something like sour cream. It has 90 cal which we like, too. He loved it and hasn't thrown it up yet. He did not tolerate the pediasure--it came up faster than we could put it in...I'm beginning to wonder if formula has anything to do with the situation, but we'll keep learning and praying. As long as we can get oz an hour we can continue to feed by mouth. I don't object to the ng as long as he doesn't throw up, so if we start that we'll go real slow.

Prayer Request

We are so fortunate to have gotten all the great news lately that Daniel posted yesterday. Time really got away from me today seeing that I ate lunch at 3:00 and I'm just now posting a blog at 4:30. I hope everyone had a great holiday weekend. I enjoyed my time with Daniel and Granton, just the three of us. Not much has changed since the last post. We went up on Granton's feeds to 45ml/hr and he has tolerated it just fine. Our prayer request is this: in order to be dismissed from the hospital Granton must gain weight and not throw up his feeds. He actually went down in weight this morning, but hopefully, the increase in feeds will boost the weight back up tomorrow. I got to replace his ng tube for the first time today and he handled it great! He usually cries a lot and hates it, but he calmed right down afterwards. It's nice to be practicing the procedures for parent care status.

Getting Closer,
Jenni

Thanks for answered, unanswered and postponed

Granton lost weight yesterday but he increased this morning. His latest IV gave out but the good news is the doctor did not think we needed a new one because he is off IV fluids and he does not have any meds that go directly into his bloodstream. This morning his doctor from the infectious disease department visited us. She told us they have officially dismissed the PCP, which is news to us, and were happy for the negative result on RSV. She also mentioned one or two other things they think Granton has gotten over, but PCP and RSV is what I focused on. I couldn’t even begin to guess how many times I prayed and asked everyone to pray for PCP and RSV to be gone. Ironically, if Granton did not have the positive test result in late May for RSV we would have gone with our original plan for the bone marrow transplant. That means we would have started chemo after he got off a ventilator. He was taken off the vent on July 4th but a few doctors said he may not have ever been taken off it without the immune system from the transplant. Never the less, if we started chemo for bone marrow in the middle of July he would not have attempted a transplant until the middle of August. That means we would be on about post transplant day 15. However, God had a better plan. The RSV made us take a different course of action and we are on post transplant day 83! Thank God for answered, unanswered and postponed answered prayers. Wow, I got way of track. I was talking about the infectious disease doctor. She told us they have officially finished with Granton because they have nothing left to do for him. I think that is pretty big news because they have been working hard for Granton since March. We all smiled and joked about never wanting to see each other again. We were laughing and they are great people, but it is true that I never want to see them again. After they left Jenni and I talked abut the PCP and RSV and we have noticed for the past few weeks that Granton has finally stopped his coughing for all practical purposes. The doctor on rounds did not change much. They are going to start giving Granton a drug called bactrim which they hope will prevent any more bacteria infections. Well that is all for now. Keep praying for the little guy and his mom too. She has lived with Granton in the hospital since March. That is a long time for a person who used to get homesick on vacations. She has done so well and has been very strong but I know she misses her hometown. It will be great for all us to be back home. Wow, I look forward to writing that blog!