All things Teddy

This post is a compilation of Sheryll's Facebook posts from Teddy's birth until Dec 22.

Sept 21, 2011- Theodore Zachry Paulson (Teddy) was born at 6:08pm on 9/21/2011 weighing 10lbs and 9 oz. He is in the NICU because he has a condition called Posterior Urethral Valve Syndrome. Basically, there is an obstruction which prevents him from peeing enough. He did pee (on the nurse :-) after he was born, but his kidneys and bladder were still enlarged/distended so they put a catheter in We are praying for his healing so that he can come home with Sheryll.  The doctor is not optimistic.  If it does not resolve on its own, we will be traveling for treatment, as there is no pediatric urologist in Minot.  Other than this condition, he is healthy, and we are thankful.  Sheryll was groggy but resting when I left the hospital.  More to follow after I’ve had some sleep!  Bob for Sheryll...

Sept 22 - Hello friends! I wanted to update you on Teddy this morning. The doc said that he went home last night and studied up some more on Teddy's condition and they may be able to just do a procedure now that will just fix it, but since our urologist here is not a pediatric urologist, we have to see if he feels comfortable doing it. If so, we could be done here in a couple of days! If not, it means a trip to either Bismarck or Fargo, more than likely. Teddy looks very good this morning and the nurses are pleased with how he is doing.  Bob for Sheryll

Sept 22 - Teddy had a test today where they put dye into his bladder to see how his urine is flowing. Unfortunately, there was evidence of reflux (urine going from the bladder back to the kidneys) even with the catheter in. The good news is that the urologist on staff here in Minot is comfortable performing the procedure to fix the PUV. He will stop by on rounds tomorrow and we will learn more. Sheryll got to hold Teddy in the NICU tonight for the first time since his birth! She is feeling pretty good, and has not had much for pain meds today. Hopefully she will be able to rest tonight.   Bob for Sheryll

Sept 23 - Teddy is doing pretty well today. He had a little formula this afternoon since my milk hasn't come in yet. They also put him under the UV light for jaundice. We are still waiting to see the urologist who is going to do his procedure. I am anxious to ask him some questions, so I wish he would hurry up and come around. The pediatrician said that we are more than likely looking at another week of Teddy being in NICU, but I will be released tomorrow. We will just be coming up here lots to visit! Many thanks to everyone for all of your concern and prayers! It means so much to us!

Sept 24 - I came home today, and had to leave Teddy at the hospital--one of the hardest things I've ever done. Now I was going to go back up tonight to see him, but I'm just not up to it physically. At least Bob went, but I still hate that I'm not going. I will go in the morning, hopefully after some good rest tonight.    

Sept 26 - The pediatric urologist from UCSD who is here for this week just called us (does this not seem like a God-thing in and of itself? That this guy would be here in Minot, ND THIS VERY week?). He says that Teddy's situation is more serious than we had realized and that saving his kidney function is our first priority. This is not a one-time surgery and Teddy will be all better. He will most likely require treatment for many years, if not the rest of his life.  He feels that a different surgery where they make a hole in the bladder just under his belly button is the best option.  This may mean that he never pees normally; they are not sure.  We are hopefully going to meet the doc in the morning to talk more about it and look at exactly when we will do the surgery.  Because Minot is not set up for pediatrics much at all, he is not sure that the anesthesiologist will even be willing to work with a baby as small as Teddy.  So that will be the first thing to get answered, I think.  I will post more tomorrow when we have spoken with the doc. 

Sept 27 - We met with the doc from San Diego this morning. He definitely thinks that a vesicostomy (an opening in the bladder made below the belly button) is the best way to go for Teddy. He will have this for at least a year; maybe two. We don't have a lot of answers beyond that. It sounds like maybe they don't really yet either. We do know that it will involve trips to either Minneapolis or Denver for follow up.  The surgery will probably be either Thursday or Friday.  We so appreciate everyone’s prayer!  God is good and He IS in control.  We trust Him completely.  Honestly, the hardest part for me right now is just not having Teddy home with me!  I HATE leaving him there!  I feel like I’m abandoning him.  And I worry that it affects him.  Thank you again for all your sweet words of encouragement and your prayers!  We love you!

Sept 27 - Sorry if it feels like we are out of control on how much we are posting, but this is our best way to keep our family members and closest friends who want to know the latest updated. So, with that said, Teddy's surgery will be Thursday morning at 11:00 CST. I suppose with that said, I can probably give our news a rest for a couple of days as there shouldn't be much else to report until afterwards now. Like I've said before, we are SO thankful for all of your prayers and concern. We love you!

Sept 29 - Today's the big day! Teddy's surgery will be at 11:00am CST. We so appreciate all of your prayers and support. We are comforted by and have all faith in God who we know works all things together for His good...HE knit Teddy together in the womb and I know He does all things well. He didn't mess up here. I am just asking God now for safety through the surgery and especially with the anesthesia. I will post tonight when we get home on how everything went. Thank you all again! Much love, Sheryll

Sept 29 - Teddy made it through surgery beautifully and is doing very well. Now we just need him to take the bottle and eat well so he can come home. I think there is a chance that could be as early as Saturday if he will get the hang of it. Thank you all SO much for your prayers and words of encouragement this week! We have really been able to rest in the Lord and be at peace concerning this situation.  As far as his future, he has a hole below his belly button that his urine will drain out of for the first year of his life.  Follow-up is requireed every three months with pediatric specialists, so we will be making trips to Minneapolis for this.  We won’t really know beyond the first year until we get there and see how his body is functioning at that time.  Thanks again.  We are so blessed by all of you.  We love you.

Sept 30 - We saw Teddy at 11:00 this morning and he is doing well. Still not wanting to eat, so he has the tube in his nose to his stomach again. Tonight I will get his post-op pic posted. I took the camera this morning and it needed new batteries, which, of course, I didn't have along. They can't say when we will get to bring him home; just when he starts eating all of his bottle. So that is our prayer request now. I can't say thank you enough for all of the prayers!

Sept 30 - Hopefully they will remove the IV tomorrow. Obviously, he will not be coming home tomorrow as I had hoped. That was the incredibly optimistic plan. He is so sleepy, which I'm sure is good. This seems to be how our bodies heal best, right? He did drink 11ml from the bottle tonight before we had to gavage him. (Put the rest in thru his feeding tube in his nose). I am hoping he will be a lot more awake tomorrow.

Oct 1 - The nurse did remove the IV line this morning. One less thing! Yippee! She also said that she wanted to move him to a crib instead of the warmer. Each step toward normal makes me so happy!

Oct 1 - Well, how life has its ups and downs. When we went to feed Teddy at 8:00 tonight, he had another IV line in his hand. He has an infection that the Amoxicillin wasn't taking care of. He did eat better for us with a special bottle they have for cases such as ours. The nurse said that this antibiotic is typically a 7-10 day course and that it has to be given through the IV. We're not sure what that means for his homecoming. Although until he gets the eating figured out, nothing else is an issue anyway. Thanks in advance for continued prayers. Good night.

Oct 3 - Today has been an exciting day for Teddy. His infection is gone so no more IV. He had his catheter removed and at 9:30 this morning, he drank his whole feeding (70ml) from the bottle. When I went up at 1:30 he only drank 40 from the bottle and they said he only took 15 from the next. We went up for the 9:30pm feeding and got him to take 45. So that is still needing work, but we are down to that being the only thing! The doc said that once he takes his entire bottle for 24 hours then he can come home. We trust that will be in the next couple of days! Thanks so much for continued prayers!

Oct 5 - We are at a frustrating point with Teddy today. He is doing fabulously other than the eating factor. I went up there 3 times today to feed him. Twice he was wide awake and once he never opened his eyes. He actually ate more for me when he was fast asleep than either of the other times. Tonight I talked to two of the nurses who are beginning to share my frustration about trying some different things.  There is only so much they can help me try, but they are going to have the doc call mi in the morning when he’s there so I can talk to him about some of the things I would like to try differently.  Please continue praying that we will figure out what works for Teddy and get him eating in a way that is satisfactory to the doc so he will let him come home!  Thanks so much.

Oct 7 - I talked to the doc yesterday morn and he let me come up and "room in" with Teddy and try things more my way. It was great to spend so much time with him, but he still didn't eat. They didn't gavage him this whole time just to see if he would get hungry...not! His temp started rising while I was there though and by 0100 it was 101.4, so the nurse called the doc on call. She said that Teddy needed to be back on an IV so the nurse took him back to the nursery for the rest of the night At about 0630 when I got in there, she said he had eaten a little during the night, but not much and that his temp was 101.8.  We are guessing that at least one reason he is still in there is so that they can catch these infections he keeps getting.  I’m sure we wouldn’t catch them if he were home.  Maybe when we do get him home we will have to check his temp regularly or something.  I plan to email the surgeon from San Diego and ask him if recurring infections are common in these babies and what we might do to keep him from getting them.  Thanks so much for continued prayers and your sweet words of encouragement!  Much love!

Oct 10 - Things are looking up for Teddy. He finished his whole feeding twice last night (although he only finished half both at 8 and 11 this morning). But his blood-work is showing that the infection is gone and his weight is going back up. His lightest weight was 9lbs. 7oz. He is now back up to 9lbs. 15oz.!!!! We are so thankful for any and all improements! We are getting closer to him coming home!!!!!!!!

Oct 11 - Our little one who seems to be so passive in so many ways, sure has a mind of his own when it comes to his eating! He had a pretty bad night last night. But he ate 42 ml for me this morning. He is awake and crying quite a bit more now. I never thought I would be so happy to hear a baby cry, but I had been saying that he wasn't getting his exercise just laying there sleeping! His weight is also up to 10lbs. 1oz.!!! His bloodwork is good so the IV may come out this evening. Have I mentioned that I REALLY want to bring this boy HOME???????

Oct 11 - Just got a call from the nurse taking care of Teddy today and she said that the Dr. wants to do an MRI of Teddy's head "just to make sure everything's normal up there" since all of his labs are coming back normal now, but he's still not eating. Obviously he is taking longer than they expected too, so please keep praying that he will get it. I SO want to just bring him home and see what that will do for him. I think we are getting closer to just bringing him home AMA if they aren't ready to let us give it a try.

October 12th - I had a conversation with the Dr. yesterday and we decided that we would bring Teddy home in a few days with a feeding tube with a plan to let him eat as he wants during the day and have a pump at night that gives the rest thru the tube. However, this morning at 8 he drank 75ml! A first for him! When I fed him at 11 he took 55ml. This is a much better trend. Wouldn't it be awesome if he just started taking it all and we didn't need at tube at all!? That's what we've been waiting for anyway! But, regardless, he should be home Sat or Sun! I am SO excited, as you can imagine!

Oct 15 - I brought Teddy home today! Still with a feeding tube and whatever he doesn't eat during the day he will get through it at night. We are just so very thankful to finally have him home! We could still use prayer that whatever prevents him from eating all of his feedings will be healed or resolved, but thank you all so so so much for all of the prayers that have been offered up on his behalf! We have been so blessed and strengthened by those prayers!

Oct 19 - Teddy had a follow-up appt with the doc today and his weight is up to 10lbs. 6oz. Even without eating all he said Teddy should be eating! We have been still tube feeding him at night, but I am going to try not doing that at least for tonight and see how much he will wake up and eat on his own. He is doing great other than that and it seems to be getting better also! Thanks again for all the prayers! God certainly hears and answers!

Oct 21 - Teddy update: Wed. I took him to the dr and he weighed 10lbs. 6oz. I was very happy! Then that night Bob had him lying in bed with him while I finished some work in the kitchen and the feeding tube got caught between them and pulled out, so I decided that it was a good time to try going without it for a couple of days. So Wed and Thurs nights I left it out and just fed him with the bottle when he woke up.  His dintake was down considerably from what the dr wants it to be, but still today when the home-health care nurse came, he weighed 10 lbs 11 oz!!!!  Needless to say, unless he really starts to lose weight for some reason, the feeding tube is staying out.  I am so thankful to have him so normal!

Nov 8 - Hey y'all! Just wanted to say thank you one more time for all the prayers for Teddy! He is doing absolutely great now! Eating what the docs want and everything! Having him in the NICU for 24 days was very hard on me especially as I hated leaving him there AND leaving the kids here! I know that your prayers were a huge part of how I got through that time as well as Teddy's recovery and the doc letting us take him home earlier than they normally do! God is faithful!

Dec 1 - We could use more prayer for Teddy. We have been trying all kinds of different things and he is still losing weight. He had been gaining for a while, but then he just took a turn and has been going down. He had been spitting up a ton, so we are changing formulas and probably about to try raw goat's milk (this is what Carrie had to have). We are also trying to pretty much only lay him flat if we're changing his diaper. Otherwise, he is always upright. We are also going to have to go back to tube feeding him at night to get his amount of intake up. I don't like this, but we have to do what we have to do! Appreciate prayers! Thanks!

Dec 1 - So we have a chiro appt. tomorrow morn and I just got home from driving 2 hrs round trip to get some goat milk. Praying these things make a significant difference!

Dec 15 - Teddy had a weight check yesterday at which he was 11 lbs!!!!!! I don't think that I posted that last week he was down to 10 lbs. 6 oz. So this is obviously a GREAT improvement! We are so thankful to God and to all of our friends and family for prayers! Goat milk seems to be the definite answer for Teddy. He still spits up a lot, but the doc said that as long as he keeps gaining like this, we won’t worry about it.  He said the meds we woulc try for acid reflux tned to have worse side effects than they are worth.  So, we will just keep feeding him as much as he will eat and changing our clothes 3 or 4 times a day.  This is better than how things were when he wouldn’t eat enough, at least.  Praise be to God! 

Dec 22 - Took Teddy to the doc yesterday and he is up another 2 oz! Now we can go 2 weeks between weight checks! Yay! Praise God!