Sweetheart

I just had to post a picture of the cute little hearts that the night nurse made for Hope. Don't you love it? Now if they just came in pink... And by the way, Hope is now a big 8 pounder. She technically weighs in at 8 lbs 1.8 oz. This makes 3 days in a row that she's gained. We've been told that we will probably get the boot tomorrow. We'll let you know.

2 Days in a Row!

Hope gained another 2 oz today. Woo Hoo! Now maybe we can go for gaining 3 days in a row. She is now 3.62 kg, or 7.98 lbs. Eight lbs, here we come!

Eating again!

Hope's GI doc decided that she was growing and should have her tube pulled up into her tummy today. Then she got to start eating out of a bottle. To start, she got 30 ml every 3 hours. Now that she's shown she can handle that, she gets to go up to 45 ml every 3 hours. Every time her bottle feeds go up, the amount they give her through the tube goes down. I'm not sure exactly when she'll get off the tube, but it shouldn't be too far out. Next week I should be able to start nursing her. We should also be coming home sometime next week. However, it has been decided that Hope will need to get lipids 3 times per week while at home. This means we'll hook her up to her broviak at night and it will run while we're sleeping. Not terribly thrilled about having to mess with this, but we are going to be happy to be out of the hospital. We'll keep you posted on when that will be exactly.

yo-yo

Hhhhhmmm....what can we say about today? We had some real low spots, but it ended well.

I had planned on coming up to stay with Hope for a few days. As I was loading up the car I got a call back from Hope's GI doc.

"Are you at the hospital?"

"No, but I'm on my way."

"How long until you get here?"

"A couple of hours."

"I'll come over and talk to you then."

Great.... he won't even talk to me about it over the phone?! This can't be good. Let's just say it was a very long ride up to Spokane. (Keep in mind that the GI doc had been waiting to hear from the kidney doc about why Hope's potassium periodically drops.) I envisioned all kinds of horrible scenarios. I called Mike and he headed up after getting off of work.

The GI doc showed up and told us that they still don't know what's going on with Hope. Most babies will grow on 110 calories/kg, but Hope is at 135 and still not growing. She had been 3.50 kg (7 lbs 11 oz) for several days. He was not sure if it was an electrolyte problem or something else. He mentioned a very slight chance that it could be a hormone problem. He also told us about another patient he had that had some bizarre genetic disorder. So I was pretty discouraged at this point. Top it off with the fact that the kidney doc can't run any of his tests until her potassium gets low again and they'd just given her potassium. So..... long story short, the GI doc decided to go ahead and progress her on feeds. He's going to go up until she starts to gain or until she starts having diarrhea, which is a sign that she's hit her max. I was feeling like we were going to become permanent residents of the hospital.

Then a wonderful thing happened. The nurse came and weighed her and she was 3.56 kg (7 lbs 13 oz). Yippee! Oh please Lord, let this be the beginning of an upward trend!!

Still growing

LOOK HOW FAR WE'VE COME

Well Hope is still moving forward, she showed a little bit of not being able to get all the carbs out of her food but we are going to get some enzymes to help with that. She is still 7 11 but looks great, please pray that she starts to back it on ...Love Mike

Happy Girl

She is doing great , she has hit 7 lb 11oz and had a great day..Mom and the kids got to come up a see us....

Well were out of the ICU and back to our room , and she is looking good. She is still moving up on her feeds and will be at full feeds with in 48 hrs at this pace..

well she is finally starting to sleep , she stayed up all night with the nurse because of her withdrawals but she is getting better . Her belly is staying between 38 and 39cm but still pooping and passing gas. Maybe tomorrow we will move out of the ICU and back to our room. She is starting to go up on her feeds she is getting 6mils every hour and will go up by 3 every 12 hours. Now we wait to see if she can fly or not...More later Mike

OK here is whats new, Hope is now off the vent and her pain meds, and her gut is starting to wake up . She is pooping and passing gas on her own , and her girth is now 38cm and falling . She has gotten her folly catheter out and the catheter in her neck is also out. The only things left are her cannula and the small tube that is in her nose that goes to the begining of her small intestine that delivers her breast milk. So please pray that she continues to progress in the right direction. She is also being given some Valium because she is having some withdraws from her pain meds...Thanks again Mike

The Belly

well Hope is doing good except for her belly, it has gone back up to 45cm this afternoon. We sent out a pray request that the gas buildup in he intestines would go down . About 6:30pm I met with the doctor and he decided to give her a suppository and to take her NG tube and just let it vent with out it being hooked up the suction machine. They also said they might try a tube in her rectum to help her vent. Just a side note I am sure that when Hope is older and reads this she will love that we told this stuff to the world. OK so when we unplugged the suction we could hear the air coming out of the tube and when I left she was 42.5cm. So please pray that was the solution to the problem and she will start to improve , her belly is the only thing holding her back from getting off the vent...Thanks Mike

Still going strong

Hope is doing great not much else to say. Maybe this weekend they will start to get her off the vent, she is already coming down on the settings...more later Mike

Hopes Condition

Well Hope is impressing the nurses in the ICU now , she's just like her mom. The nurse said the surgeon came by and was very pleased with her progress and took her bandage off. She is looking so much better today. That's it not much else to report thank God...Mike

WOW

Ok here is the latest ..yesterday Hope went into surgery and was in there for about 2 1/4 hrs, the doctor told us he was pleased on how it went and that he was able to save the illeocecal valve ( that is the connection between the large and the small intestine it is very important because it keeps the bad bacteria from the large intestine from going back up into the small ). Anyways he said that he had to remove another 10cm of bowel that looked like it was full of ulcers. He also told us that the bowel was kinked and folded over itself and it took him about an hour just to get it straightened out with all the adhesion's. They were also able to do a direct connection no stoma's this time( thank you Lord). So Hope was taken up to the PICU to recover and Amy went back home while I stayed here . About 10pm I got a call from the ICU saying they have been working on Hope for about 2hrs trying to get a line in her to give her blood and they need to have the surgeon insert a catheter in her neck and I should come down. So I went and while I was waiting this nurse comes running out of the ICU and another nurse asked her whats wrong , we have a kid crashing in 12 which was Hopes room my heart stopped this was the end and I had no idea what to do. I was afraid to call Amy how to you tell a mom that, so I called the elders of the church to come I need you and then called Amy . I am sure you can imagine the call , but we decided to get the kids up and some friends would drive them up, we thought the kids had the right to see there sister if she was not going to make it. So in the meantime I called the grandparents to fill them in , and then got on my knees . This is yet another example of how great is our God is. Then about 30 minutes later the nurse came out to tell me Hope is ok and the surgeon will come and talk to me, WOW these are the times when I am reminded of ¹⁰ That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong. 2 Corinthians. 12:10. So after making the calls to Amy and the guys coming up that Hope was stable I was ready to shut down but was also excited to see everyone so we could just praise our God together. So when everyone got there we did. By this time it was about 1am and Amy and the kids got there and they wouldn't let the kids on the floor so we decided to send them back home with everyone else, and Amy would stay here for the night. So Amy and the kids are home and I will be staying here for awhile longer,Hope is doing ok you cant do any better than that in the ICU and will be kept asleep until the weekend due to all the trauma she had. Here are some pics of her they are hard to see but I am thankful she is here with us..Thank you all for your prayers..God does hear and does answer!!!

Surgery

Well Hope had to go to surgery today they removed 10 cm of intestine and she is in icu recovering. Please pray that God will get her through the recovery and this is the end of the surgery's. I will post more on the details of what was done in the operation after I talk to the doctor and can see a picture ( us guys need pictures it helps ) ...Again thank you all for your prayers Mike

More waiting

Well we really don't know much more than we did this morning , she is still pretty big and we are waiting for the barium to pass . The surgeon's will meet tomorrow and talk and hopefully come up with a plan to help her. Some of the elders from our church came up today to pray over Hope and talk, it was a refreshing time of talking about all the God has done since we started this journey. Its easy to forget all the times I could see his hand at work in mine Amy's, Hope's and the kid's lives..anyways please continue to keep Hope and Amy in your prayers Thanks Mike

PLEASE PRAY

Please pray for Hope and Amy, Hopes belly has gone up to 43cm and back to 42 now but she is huge and very uncomfortable. Amy is taking this hard please keep her in your prayer like I already know you do but it helps to ask....pray the doctor will show soon...Mike

not much new

Not much to report tonight. Hope had to have a blood transfusion this afternoon and is looking better, she felt so good she riped the IV out while I was at dinner its good the blood had just finished. Her belly is also getting more swelled up and she is not very comfortable. The nurse said we should skip the pedalite for now until the GI doc looks at her. Please keep praying that they can bring her some relief soon...Thanks Mike

Ok here whats new..We got the results back from the scope and her colon looked good big but good, she dose not have a milk protein allergy so breastfeeding is still a go ( praise God ).The next step is to get a barium enema so they can see the problem from both sides, hopefully they will be able to make a diagnosis from this. It might mean another surgery to repair. She also had her first blood culture come back with strep and staff in it,the other 2 cultures came back clean they are hoping it was a lab contaminate, but they have her an antibiotics to be safe. As for now we wait for her to pass the barium from the last test so we can do the next , they are trying to help her do that by flushing her every 6 hours with a saline enemas.. Thanks you again for your prayers for Hope and Amy both are doing better...Mike

Here is whats new

First thank you all for your prayers. Hope is doing well we got her results from the radiologist late today they said there is a possibility of a stricture but not for sure , the doctor said you got to love radiologist. So we had to get her scoped they took a biopsy from her Colon, the doctor said it looked good not inflamed or red just huge. So we will need to wait to get the results to see if Hope is having an allergic reaction to something. I am so proud of my little girl she did the procedure with out any sedation , she tough just like her Mom. We have started on pedialite and will see how she does on that tonight and go from there. She is also back on the IV nutrition which is good she needs it and her liver is much improved. So again thank you for your prayers. We serve a mighty God who is able to do more than we can imagine ..To God be the glory for great things he has done.....more later love Mike

update

Well we made it up last night with no problems . We got checked in to the oncology ward and have our own room. We went down for the small bowel follow through this morning it looked like it went through ok but seam to get diluted when it got to the large, they said its because there is fluid there still. The results wont be in until this afternoon, so i will let you know what we find out. She is off all foods for a little while longer. Please keep her in your prayers, and also Amy she is taking this very hard and could use all the support you can give her....thanks for your prayers Love Mike

Here we go again

Hope living at home was a failed experiment. She's back to being institutionalized. Mike took her back up to Sacred Heart today because her bowels are distended and not working right. I was unable to go because I'm sick with a cold and don't think I'd be able to get into the peds floor. Once I am well I'll head up and we'll start the whole thing over again.

Friendly faces from the NICU

Just wanted to put on some more pics of the wonderful folks that took care of us in the NICU. We have Dr. B and our 3 primary nurses, Holly, Ginny, and Dawna. On the bottom is our nurse practitioner, Linda. There are tons of other folks that were wonderful to us, but sadly, I didn't get pics of all of them. But we are very grateful to the NICU nurses and doctors of both Deaconess and Sacred Heart. Thank you!