Stinker Dylan

So I usually update with all the data things that happen to us, but today I thought I would share a little about how our day went:

Dylan has been a stinker all day! It's good, I guess, because that means he is healthy enough to be a stinker!

I gave Dylan a bath last night around 6:30 & then Derrick & I left around 10:30. This morning when I got back to the hospital at 10 I picked up Dylan & he had peed out his diaper, all over his clothes & through 3 blankets! That's a lot of pee, especially since the nurse had changed him at 7! So I changed his clothes & the nurse changed his bedding. He was pretty good the rest of the day while I was there. I fed him at 4 & then went home for a little bit. When Derrick & I came back at 7:10 pm, Dylan was screaming his head off! We couldn't figure out why – he was unswaddled (he hates being swaddled), the respiratory guy had tried to give him his paci & his food was going in through his feeding tube...so we thought. The nurse came in & realized that something was wrong with his feeding. Turns out that he had pulled his feeding tube out of his nose & the formula was all over him, his outfit & his bedding. So he had another outfit change, new bedding & he needed more food. Derrick fed him a bottle & he actually did really well. He took about 40 cc's from the bottle (he gets 58), but we have no idea how much he actually got through the feeding tube. I figure it will all even out at some point. He really is being a stinker today though!

As for the data stuff, Dylan is 6 lbs. 10 oz. & is 19 inches long. A friend of mine on my pregnancy board just had her baby this morning & she had the same measurements that Dylan does today! It's funny to me that he is the same size as a regular newborn finally! He is now allowed 4 bottles per day & seems to be doing well with that so far. Dylan is still on 25% oxygen – I am not sure when they will start making changes to that again. I really hope they make some changes soon. It would be awesome for him to get off the oxygen completely.

That's about it for us today. We are still just waiting on Dylan to learn to eat better. I told Derrick the other day that since Dylan is not supposed to be here yet & if he was born on his due day (January 6th) he would still spend a couple days in the hospital, I am allowing him until January 10th to get out of here! Otherwise Dylan will be in trouble :)

So that's today's update. Besides that Dylan has been ornery today, it has been a pretty good day! I hope you have had a good one, too!

Dylan says, "But I can't be naughty - I'm too cute!"

Christmas Update

Wow, it has been a long time since I updated last time!

It is now after Christmas & I just keep thinking about how Dylan isn't even supposed to be here yet. He is such a fighter & he is truly our “Best Present Ever,” just like the shirt my best friend Amy got for him says. We are thrilled that he was with us this Christmas & even though we spent this Christmas in the hospital, we are so happy that he is here. 

Since my last update, Dylan has been transferred to Davenport. Besides the bottle feeding issue & being on oxygen, there was no reason he had to be in Iowa City. I came & toured the NICU at Genesis & realized that the people here could give him the care he needed. I toured the NICU on Monday the 15th & we moved on Wednesday the 17th. It has been nice to get home. I can take care of things around the house & we are finally starting to get things ready to bring Dylan home. Hopefully we will finish his room soon! The weather has not been so cooperative regarding the move. In IC I was driven back & forth to the hospital by the staff or volunteers at Ronald McDonald house or Derrick was around to drive me places. Here I am driving myself & I am not really much of a fan of winter driving. It seems like all it has done since we moved back is snow or sleet! 

Dylan is still not tolerating the bottle very well. He has recently been cut back to only 2 or 3 bottles a day because the dr. thinks Dylan is developing an “oral aversion.” I get really frustrated about the drs. though because as far as I know, none of them has ever actually seen Dylan eat. I can usually get him to eat pretty well for me. It is just hard to have people who don't know you or your baby telling what to do all the time. Derrick & I have decided that we will play their game & feed Dylan when they tell us & in the position they tell us & hopefully we'll be out of here soon & we can do things more our way. 

Dylan is now on only 25% oxygen (21% is room air) & if he continues to do well, he should be off the oxygen sometime soon! So far he is doing very well. We were sure he was going to come home on oxygen, so we are excited that he might not have to. The only bad thing is that we won't be getting the apnea monitor. The apnea monitor would be nice because it would alert us if he stopped breathing, cutting down the chance of him dying from SIDS. 

I am extremely tired. I think I am just overwhelmed by everything right now. We have been at this for a long time & it is starting to really wear on me. Dylan is 83 days old today, so we have been doing this for almost 3 months. I trust that God is taking care of us, but it is hard to stay continually “up” when things are going the way they are. I have always told myself that I am going to be honest in what I post here because I want others to know that feelings are normal. I am not always happy & encouraged, even though I know God is helping Dylan. I don't know if it's the holiday or the fact that no one really understands what we are going through, but I can feel myself starting to shut down. I so much want things to just be normal & they aren't. All I have ever wanted is to grow up, get married & be a mommy to my kids. I am doing that, but it is just not the way I expected. I want to be able to take my baby places & visit with my friends & do all the things that normal stay at home moms do. Even once Dylan comes home we won't be able to do much because of his respiratory problems. I am just feeling kind of down & lonely this week. I know that sometime we will look back & realize that this has only been a short period in our lives, but right now it just feels like an eternity. 

Hopefully my next update will be more full of happiness & things, but right now I am just relying on God to bring us through this time. 

I hope you all had a very Merry Christmas & that you took time to remember why we celebrate Christmas. It isn't about Santa & presents. It is about the birth of God's Son who gave his life for our sins. 

Have a great day & I will try to update again soon.

~Renee

Christmas Letter 2008

December 20, 2008

Dear Family & Friends,

I pray that you have had a blessed 2008 & are looking forward to 2009. Our family has had many changes over the past year & God has been with us through all of them. 
In January we celebrated my 23rd birthday. As part of my present, we adopted 2 cats named Peanut & Lucy. They are sweet & have been a fun addition to our family. We also started our foster parenting classes. 
April & May were exciting months for us. We were accepted as foster parents & received our first placement, 2 little boys. They were with us from May until August. We also found out in April that we were expecting our first child! We were thrilled! We had been trying for two & a half years & had somewhat come to the conclusion that we were not going to have biological children. I really feel like once I told God that I would do things His way instead of just believing it had to be my way in my time, He chose to bless us with this pregnancy.
We also got to meet our newest nephew in May. Kayden was born in May & he has been a blessing. We now have 4 nephews & one niece. What a blessing it is to be near them & to see them all grow up!
In August Derrick & I went to Indiana for our annual “visiting the Daulton's & going to GenCon” trip. It was good to spend 4 days just having fun with friends. Derrick & I enjoyed the trip & were able to spend some time catching up on the drive there & back. We also started back up the quizzing program at our church. Our church is now running both a children's & teens' quizzing program. It has been a joy to watch the children & teens learning God's word. We were also able to experience 2 of our teen quizzers accepting Christ as their Savior. We are so proud of them & are hopeful that they are able to share Christ with their friends. 
In September we celebrated Derrick's 27th birthday. We also had an ultrasound to find out if our baby was going to be a boy or a girl. We found out that we were going to be blessed with a little boy. My due date was January 6th, 2009, but we soon found out that we would not be waiting that long to meet our little guy.
Dylan Jay Sindt was born by c-section on Monday, October 6th, 2008 at 6:05 pm due to my preeclampsia. He was born at 26 weeks, 6 days. He weighed 2 lbs., 3 oz. & was 14.5 inches long. He has been growing bigger ever since. He is a blessing & a miracle. God has truly been with us & with Dylan. Besides a few small setbacks, Dylan has done great & has been progressing the way he should be. I am feeling better, although we are still fighting with my blood pressure. 
In November we received word that the college I graduated from was closing. It was a shock to me & was very sad. Although Vennard is now closed, God will continue to use those who graduated from the college. There are Vennard alumni all over the world & God is blessing the work that they are doing.
Derrick & I have so much to be thankful for this Christmas. I was sick enough that if I hadn't gotten care when I did, Dylan & I could have not been here this Christmas. God has truly taken care of us & has been with us through all the recovery that has gone on. Dylan is still in the hospital, but we are hoping that he will be coming home soon. 
How faithful God is – last year we asked to be blessed in 2008 & we truly have been. God has given us the child that we prayed for & cried for for the last few years. He has given us wonderful family & friends to support us. He has blessed us financially – while things have sometimes been tight, we have never been in need of anything. How thankful we are! 
As I finish this letter, I want to take time to thank all of you who have thought of us throughout this year. We have been blessed beyond measure & the prayers & support we have received have been worth their weight in gold. Please know that your love does not go unnoticed.
We are looking forward to 2009. We hope that we continue to grow closer to God throughout the next year & that we are able to see God's hand at work. God has blessed us in many ways this year. We can only guess what He has in store for us next year! Merry Christmas to you all!!!

Love,

Renee, Derrick & Dylan

Update - December 12, 2008

Here's the update: Mostly, I'm just tired. 

Dylan has made lots of great progress over the last 9 weeks. He went from 2 lbs., 3 oz. to today being 5 lbs., 4 oz. He is now on 50% oxygen & is sleeping in a crib. We aren't having residual problems anymore. Dylan is now in Bay 5, the NICU for the least critical babies. I praise God for all the growing Dylan has done over the last months. 

It seems like we have now hit a wall & continually running into it wears you out. Dylan is supposed to be bottle feeding, but it is not going well. We started on bottle feeds on December 1st. The drs. thought that he would be heading home in about a week from today & that we would be home before Christmas. I am starting to not think so. Dylan is just not interested in taking the bottle. He either falls asleep while eating or just stares off into space with the bottle in his mouth, but doesn't suck on it at all. He can do it though – that's the frustrating part. There was one day last week when he took half of his feeds by bottle. Now he won't do it anymore. I feel like we have tried everything & he is just not interested. 

On the positive side, now the Dylan is older, he can have music in his room. I may have to try to buy the same CD that is in his CD player b/c even though it is supposed to be “lullabies,” it has a lot of hymns & choruses that we sing at church on it. It is just the instrumentals, so if you didn't know the songs, you wouldn't know, but I am starting to love this CD. I will probably buy it for Dylan, but play it at home because I like it :) Hopefully I can track it down somewhere.

Anyway, that's our update – I will be getting picture posted later today!

Vennard Graduation & Thanksgiving

It's been a long time since my last update, so I thought I should write one today. 

Last weekend Derrick & I went to Vennard for the final graduation. It was one of those bittersweet moments in life. It was a lot of fun to see all my friends & see some very special people graduate, but knowing that it was the last graduation was hard. I know that God has big plans for this situation, whether it is to reopen the school or if it is to spread the Vennard family to touch lives in other ways. I had a great time down at Vennard, but I was glad to get back to my little guy in Iowa City.

This past week we celebrated our first Thanksgiving as a family instead of just a couple. Dylan is still in the hospital, but Derrick & I spent the morning with him, ate Thanksgiving lunch at the RMH, & then went back to the hospital for the evening. It was a little sad to be away from our extended family, but we knew that we really wanted to celebrate Dylan's first Thanksgiving with him. We have much to be thankful for this year. Dylan could have not been here. I could have not been here. We are thankful to God everyday for taking care of us. How blessed we are!

My mom & step-dad came to visit us on Friday. They brought us Thanksgiving leftovers! Wayne (my step-dad) also brought his Santa suit & dressed up so we could take Dylan's picture with Santa. Even if Dylan is home before Christmas, we aren't supposed to take him out into crowds because it is cold & flu season & he can get RSV if he catches a cold. It could land him right back in the hospital & we don't want that. So, back to Santa. We don't really know if we are going to do Santa because I don't want to lie to my kids about it, even if it is for the magic of the season. I have no problem with other people doing Santa, but I don't know that I want to. But my mom thought it would be nice to have Dylan's picture taken with Santa, so we volunteered Wayne. It was a lot of fun. Wayne had never held Dylan before, so it was really cute! Wayne just kept saying. “I'm not moving, not moving.” Too funny! We got some really good ones & I will be posting them soon. We also took family pictures.

After we took pictures, my mom, Santa Wayne & I went up to my friend Julie's daughter's room in the NICU. Julie has triplets who were born at the same gestational age as Dylan, but a few weeks earlier. They are getting ready to go home, but there is one here at the hospital. The other 2 were already discharged & stay here at the RMH with Julie. They go back every day to visit though. They also have a 6 year old brother. So Santa Wayne told Julie's son that his sled had broken down, so he thought he'd come in & visit for a while. It was so cute. So Julie's son told Santa Wayne what he wanted for Christmas & then we took pictures of Santa Wayne holding the triplets! That was too funny! He did great though.

On Saturday, some of Derrick's family came to visit. His mom & 2 sisters came up, & brought our niece & nephew. It was nice to see them. We went dinner with them (& finally found the Pizza Hut we have been looking for here in Iowa City.) They are a lot of fun. My little nephew is almost 9 & he made me a card. It was so cute. He said something like – "Thank you for letting me have a new cousin. I hope you get to have him at home with you soon." It was so precious! He is our first nephew & he was born on my birthday, so he has always been special to me. 

Today it snowed. We did not go to church because we didn't want to drive to Cedar Rapids in the snow & because I am fighting a cold & needed some rest. Derrick is at the hospital with Dylan now, but he'll come back & get me this afternoon. We'll probably eat some dinner & then go back to the hospital. I'm feeling better now, but I will still have to wear a mask in the NICU. 

Dylan is doing well. He is 4 lbs. 2 oz. He is getting to be a big guy! His breathing is getting better & he is doing good with his feeds, so hopefully we'll be able to try bottle feeding soon. He is also working on getting into a crib. He has to be over 1800 grams (which he is) & he has to be continually gaining weight. That is where the trouble is. He'll gain one night, then lose the next, then gain, then lose. In the long run he is still gaining, but it is not very consistent. 

It has been interesting with the holiday because we have not had our normal nurses, but we made it through. Hopefully we get one of the regulars tomorrow. We are missing the nurses who know Dylan & don't panic about everything. Plus, a lot of the nurses we have had recently are older ladies & I don't relate to them as well as I do to the younger nurses. We have 3 nurses that we really like & they are all around mine or Derrick's age & they are just really energetic. They are a lot of fun & they don't panic about everything. It makes us feel more comfortable & less like we are intruding on their space. Some of the nurses (whether they mean to or not) make me feel like my being there is an inconvenience to them. They all take wonderful care of Dylan though. In the almost 8 weeks he has been in the hospital, we have had 2 nurses that I didn't care for. That's pretty good! 

Anyway, I just wanted to give you all an update. Things are going well. They are not moving as quickly as I want them to, but God is in control. I'm glad He is because I trust Him more than anyone else. He is taking great care of us. 

I hope you all had a great Thanksgiving! Thank you for all your love & support!!!

Baby Dylan and Vennard Update

So I am sitting here wanting to write an update, but I am struggling with the words to say. I have all around had a rough week. Last Monday I knew that it was going to be a long week. I received word this week that Vennard, the college that I spent 4 of the best years of my life at was closing. I know that I need to deal with the situation, but I just don't feel like I can at the moment. The problem is that I don't have time to wait to deal with it. So I am still trying to work through & process that information. 

Dylan also had a hard week. Mid-week last week he started having some breathing problems & was having a lot of residuals (food left over in his belly before the next feeding). Unfortunately, those are 2 signs of infections in babies. Dylan had a bunch of tests done, had his feedings stopped, & had IV's inserted to give him his nutrition & antibiotics. The docs have not been able to confirm an infection, but Dylan still has to have the antibiotics for 7 days. I believe today is day 5. They have restarted his feeds, but he is not tolerating them well, so it is going a lot slower than we thought it would be. He was up to 24 cc's every 3 hrs., but since they've restarted, he has been getting 10 cc's every 4 hrs. He is still having some residual problems, but they seem to be getting better. 
Dylan also received a blood transfusion this week. The blood really seemed to help him. I am thankful to those people who can donate blood & do so. You never really think that it is going to affect anyone you know, but I know that someone donated the blood that has now helped my son twice. What a blessing that that can be done. He has had no reactions to the blood, so that is good, too. He does have some extra fluid in his body because of the transfusion. When the docs push all that blood in, but don't take any fluid out, sometimes it is hard for the extra fluid to go anywhere. So Dylan received some lasics today. It will make him pee more & get rid of all that extra fluid. The docs also saw some wetness on his lungs on the x-ray this morning, so the lasics should help with that, too. 
Dylan is feeling better today. He is breathing a lot better & his residuals are starting to get better. He weighed 3 lbs., 10 oz. today, but it should be going down because he will be losing some of that extra fluid. We want him to be gaining weight, but not in that way. Once he gets off the high flow oxygen & onto the normal nasal canual oxygen we should be able to start bottle feeding. I am very excited about that. It will be one more thing that we will be able to help out with & I think it will make me feel like Dylan is a little bit more mine & less like he belongs to the hospital. 
We have an eye exam scheduled for this week. If that comes back good, & if Dylan can get off the high flow oxygen, we may be able to get transferred back to Davenport. I am trying to decide how I feel about that. I would be excited to be able to be home, but I am scared to leave the docs we have had since the beginning. Some of them do work in Davenport, too, but it is still scary. And, while I miss being home, I think I will miss being here at the RMH. I was trying to figure out why that was & then it occurred to me – it's kind of like being in the college dorm. A crazy, mixed up, joyful, sometimes depressing college dorm – so it's pretty much exactly like the dorm, minus the homework. But you're still exhausted. It's just an emotional exhaustion. I have made some good friends here & while I do not know that we will keep in touch, I know that I have appreciated them. Many of them have been here longer than me & I have gained lots of knowledge from them. I feel like I know what to expect better because of them – this place is sounding more like the dorm every minute!

One major blessing this week – my mom & stepdad came to visit on Sunday & brought us a Christmas present. That was really strange because it is November & we see them all the time. It's not like this is the only time we will get together! So I opened the box & inside it was another box. I opened that one & found a set of car keys. My mom & Wayne bought a car from my step-uncle for us. They knew that we had been struggling about what to do once I come back. If Dylan is at the hospital, I didn't want to rely on someone to drive me around all the time. Also, once Dylan comes home, we would have either had to take him out in the cold every morning to take Derrick to work or we would be stuck at home all the time. Neither idea sounded great to us. I am thrilled about the car! It will give us a little more freedom without costing us a fortune. It is a '93, so the registration & plates will be pretty cheap. It is not exactly what I was looking for, but it will work for now & our other car will be paid off in June, so we may start looking for something bigger then. Right now I am just thankful to have a 2nd vehicle! 

Here is a special prayer request for today: I met a mom tonight who has a daughter at the hospital. I don't know anything about their story, but the mom told me that her daughter is severely anorexic. I asked how she was doing & her mom said, “Poorly.” She also told me that she's “fighting it.” I don't know if that means that she is fighting the help or fighting the disease. Please pray for her & her family today. 

So that's about it for my update. We appreciate all your love & prayers. We know God hears them & is blessing us though you. Dylan is such a precious miracle. I'll leave you will the lyrics of a song that I sing to Dylan. It is by Stellar Kart titled “Sunshine.” It is about Jesus, but somewhat expresses how I feel. 

Life is filled with
Circumstances situations
That we can't avoid
And I admit some
Days can steal my happiness
But I still got joy

Hey you are my sunshine
On a rainy day it's gonna be ok
Hey you are my sunshine
It's gonna be alright

I believe in
Something bigger than my troubles
They can't keep me down
This sinking feeling
Starts disappearing on the double
Now that you're around

I am not afraid
To walk into the darkness
Cause I've got the light
I've got my problems
But I know that Jesus loves me
And that's alright 

November 14, 2008 Update

Hi all, 

Just wanted to give a short update. Dylan is having a rough week. The doctors think he might have an infection, so they started antibiodics yesterday. He is also getting a blood transfusion to help with his hemogloban (or something) count. That is pretty routine for preemies, but pretty scary for their mamas... 

Derrick & I are supposed to be taking some teens to DM to a Bible quiz tomorrow, & while I know that Dylan is in good hands here, I don't know if I should go if he is still feeling yucky. There are things that Derrick & I do that the nurses don't (like stand & hold his paci for hours). I am a little torn about what to do. 

So pray for us today. Please pray that Dylan is better tonight & I can leave without worries & pray that if he is still not feeling good, I can have wisdom about what to do. 

Thank you all - Love you all lots!!!