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!!!

Ways to Know You Are a Preemie Parent

This was given to me by one of the social workers here at the U of I NICU when I was really down one day. The first 10 were written by Jane Simone & the rest I am not sure. But I enjoyed it & thought some of you might, too (especially if you have ever had a little one in the NICU). I hope you enjoy it! 

1. Going to a hospital makes you homesick 
2. You have to fight the steering wheel to keep the vehicle from driving itself to the hospital 
3. Every time you run the blender on “pulse” your milk lets down 
4. You don’t know how to care for an umbilical cord 
5. You hold your Yorkie puppy & it reminds you of kangarooing your child (except the puppy is bigger!) 
6. None of the “What to Expect…” books REALLY told you what to expect 
7. Your friends think you have an obsessive compulsive disorder because you are constantly washing your hands 
8. You become excited when you can carry your baby from room to room (with no attachments) 
9. You have the NICU’s phone number in memory speed dial or 3 months after your child comes home, you go to call a friend & call the NICU by accident 
10. They have to call in heavy equipment to transport your child’s medical chart 

Additional suggestions for knowing you have a baby in the Children’s Newborn ICU 

11. A pregnant NICU nurse has her baby, is home on maternity leave, & returns to work during your baby’s hospitalization 
12. You look for a “prox card” to open a door at home or wave it in front of a car door 
13. Term babies look absolutely HUGE to you when others are commenting on how little they are 
14. Kangaroo, wallaby, & giraffe are no longer just animal names 
15. Your sense of time’s passage starts to focus on the 3 week doctor rotations rather than which month it is 
16. When watching the “financial reports” station on TV, the graphs look like vital signs on a bedside monitor 
17. The woman in the grocery store line asks if you are a physician after she hears you giving your husband a baby update on your cell phone 
18. You find it easier to describe your child’s weight with a 2 lb. bag of M&M’s 
19. You challenge yourself to find a piece of Disney trivia not known by Dr. Jirka 
20. The cafeteria has no more surprises for you 
21. You question whether you should feel guilty or grateful that you are sleeping through the night (if not pumping, of course) 
22. You hope your baby isn’t teething by the time you get to breastfeed 
23. As frightening as the monitor looked when you first saw it, you have some uncertainty about giving it up at discharge 
24. You & your baby need caffeine in the morning 
25. The seasons (& your wardrobe) have changed 2 to 3 times while your baby has been in the hospital 
26. When you look at the weights of food items in the grocery store, you compare whether it is more or less that what your baby weighs 
27. You can see your toes at your “due date” 
28. You walk away from the sink at home expecting the water to turn off by itself. (We won’t talk about the self-flushing toilets!) 
29. You can critique the accuracy of medical language on TV shows 
30. Your dog at home looks at you as if you are a stranger 
31. Carnival roller coasters no longer have any appeal to you after being on the NICU emotional roller coaster that doesn’t seem to stop! 

One Month Old!

Thanks for all the comments on Dylan’s costume – we’re glad you all found it as cute as we did! 

Here is an update for this week: 

Dylan is doing great. Last Friday the drs. decided that he was well enough to be taken off the vent & put on the CPAP machine. They told me that they would know within 48 hrs. if he would need to go back on the vent or not. I was preparing myself for him to go back on it because of the problems he had been having with tolerating changes in his vent. Dylan surprised me – he did better on the CPAP than he had been doing on the vent! 
Friday was a big day for Dylan. Not only did they put him on the CPAP, they were able to move him over to Bay 3. I talked to one of his bay 1 drs. the other day & she called bay 3 “the big boy side.” It was too funny. But age wise, he is starting to be one of the big boys. He had been in Bay 1 for 3 weeks & 5 days! 
Sunday the drs. were able to remove Dylan’s picc line – no more IV’s!!! He is tolerating his feeds very well (well, as well as any 4 week old does – there is some spitting up that is going on). He is still on the feeding tube, but they are now giving him 24 cc’s every 3 hrs. I am excited to see how he handles that. 
They also put Dylan in an isolet (sp?) on Sunday. It seems like a step backwards after he has been in the warmer bed that is all open, but the nurses explained that since he is more stable, they are able to put him in the isolet b/c they aren’t worried about having to get to him too quickly. I almost cried when they put him in it b/c it seems so different, but he is doing well in it. 
So back to the CPAP – I told you that he had been doing well on it. He had been doing so well that they were able to wean him from 30 “breaths” per minute to 10 between Friday & Wednesday. The nurses told us last night that the drs. were hoping to put Dylan on the high flow oxygen “within the next few days.” That is a big step from being the kid who didn’t want to breathe on his own just a couple weeks ago! 
Today is Dylan’s 1 month birthday – I feel like we should throw a party because we didn’t really know if he would make it or not. I walked into the hospital room today to a great surprise – the drs. had decided that Dylan was ready to put on the high flow oxygen today! As of 9:15 this morning, he is no longer using the CPAP. When I left the hospital at 1:30 he was still doing great! 
We also were able to reach the milestone that I had set for Dylan’s 1 month birthday – I wanted him to be 3 lbs. by a month old. When we helped the nurse weigh Dylan last night he was 1373 grams. That comes out to 3 lbs., 0.43 oz.! He got there (but just barely). 
It has been a very good week. Will they all be this way? I doubt it. I would love it if they were, but I know that there will most likely be some setbacks. Right now though, I am praising God that he has taken a baby who was not supposed to be here for another 12 weeks from when he arrived & has been helping him grow & develop. We are so blessed to have him here with us. 
I was looking at him the other day & started to think about all the babies his size who don’t make it. Some just because they are too sick & others because of the choices their parents make. It occurred to me that babies at Dylan’s gestational age are aborted every day. Many people try to convince everyone that that baby is not a “baby” until it is born. As far as I am concerned, my little Dylan was a baby at 6:04 pm on October 6 while he was still inside me as much as he was at 6:05 pm when the drs. pulled him out. 
So, as I end today, I ask that you continue to pray for Dylan – he still has a long way to go. I also ask for prayer for the other children in the NICU & their parents. It is a draining thing being around the hospital all the time & I know those parents would appreciate your prayers. Also, please pray for those who are in a situation involving an unplanned pregnancy – pray that they see that abortion is not the best option for anyone involved. 
Thank you all for your love & support! I truly believe that your prayers are helping Dylan. I will continue to update you as time goes on! Love you all!!! 

~Renee, Derrick & Dylan 

Ups & Downs - Update

It has been a while since I updated – sorry about that. Things have been kind of up & down recently. 

Last Wednesday after I posted my last note, I went to the hospital to find 2 nurses trying to get an IV started on Dylan. Apparently his breathing had taken a turn overnight & the drs. were afraid he had an infection. They did what they call a “workup” of tests. He had blood tests, chest x-rays, & a spinal tap. He was also on preventative antibiotics for a few days. The drs. found out that there was nothing wrong, but they have to do all those tests just to be on the safe side. They changed some things on his ventilator & he has been doing great since then. He has been able to be weaned down to 10 breaths a minute & is doing the rest on his own. His oxygen is up & down, but most babies in the NICU are on oxygen of some sort, so that is okay with me. 

On Monday my mom was here & went with me to talk to the NICU social worker about some things I needed to take care of for Dylan. I told her that I have just been feeling really down about the whole situation & she suggested that I go home for a couple of days. So my mom took me home & Derrick brought me back yesterday. It was kind of nice to get away for a little bit, but I was ready to come back. I felt bad about being gone because it means that I missed an entire day of his little life. So I don’t know that I will be going home for an overnight stay again. It was too frustrating for me. 

I came back Wednesday to the great surprise that the drs. had weaned Dylan’s ventilator to 10 breaths a minute. He is doing great & the drs. are hoping to get him completely off the ventilator sometime this weekend. He will then be put on a CPAP that will push air down his nose to remind him to breathe, but it will not breathe for him. That is a huge step – he may have to go back to the vent if he is not doing well on the CPAP, but we are praying that that will not happen. 

The drs. also said that since he is doing so well on his feedings (he is getting 20 cc’s every 4 hrs. – 30 cc’s = 1 oz.), they will be discontinuing his fat (lipids, I think) drip & his nutrition drip. If he tolerates the 20 cc feedings today, the “picc” line will come out tomorrow night or Saturday morning! That means that he will have no more IV’s in him! 

We are also excited because the nurse last night told us he is #2 on the list of babies to be moved from Bay 1 (most critical care) to Bay 2-3 (step 2 in the NICU system). They will move him if there are any more little ones who come in who are in less stable condition than him. While I am very excited about that, it will be really sad to leave the nurses & drs. that have cared for him since his birth. Also, I know that him being moved means that they are making room for other little ones to come in & that is sad. I don’t want any other family having to go through the things that we are. 

So that is where things stand right now. Dylan is making a lot of progress & we are excited. Please pray that the progress continues & that we are able to head home sometime soon. Derrick & I would like to have Dylan home for Christmas. That is our goal, but it is really up to Dylan & how much progress he makes over the next 2 months. 

Thank you all for all your love & support! You are a blessing in ways you do not even understand! We are thankful for you! 

Love, 
Renee, Derrick & Dylan 

PS – Watch for updated pictures coming soon of Dylan in his first Halloween costume…It will be cute, I promise :)! 

Update - October 22, 2008

I haven't updated in a few days, so I'm going to try to cover everything that has happened recently. 

Last Saturday Derrick & I were finally able to hold Dylan after 12 days. It was nice, but I know Derrick was more excited about it than I was. There is something about holding your baby, but knowing that you have to give him back that just breaks my heart. I didn't really know if I wanted to hold him because of that. It's frustrating because I really bounce back & forth between wanting to hold him & be with him & not wanting to do anything with him because I know that the nurses are going to keep taking him back from me. I want to be more involved, but it is hard when he is so little. We might get to hold him again today, but he has been having some apnea spells where he will forget to breathe, so they may not want us to mess with him. 

The drs. are back to not being sure if the PDA near his heart closed or not. If it didn't, that could explain why he is having apnea now after not really having a problem with it before. When I called last night to check on him, the nurse said that he was doing better & had only had one spell since I left. We'll see how he's doing today, I guess. The drs. would like to see him off the ventilator soon, but Dylan doesn't seem to be thinking that is a good idea. 

Dylan has also gained some weight since he was born! That is really exciting. As of last night he has gained 4.6 oz. He now weighs 2 lbs., 7.6 oz. It doesn't seem like much, but we are excited about it. His face is starting to fill out & his legs are starting to look a little chubby. It's funny for me to call him “chubby” because he is still so tiny. I was thinking about it the other day & I realized that I have spent so much time in the NICU, I don't really remember what a normal newborn looks like! Dylan seems like he is a normal size to me! It's really weird. 

Derrick is doing well. I know he wishes he could be here more, but he is helping out so much by being at work. When Dylan & I were both in the hospital, Derrick used 5 sick days & a week of vacation time staying with us. He really needs to keep the rest of his vacation time in case something else comes up or...for an actual vacation. 

I am doing okay today – I think it is because I know Derrick is coming tonight. I go back & forth between enjoying the peace & quiet of being here by myself & being really lonely & homesick. Most people here at the RMH come & go really quickly. There are some people who are going to be here a long time (like me), but most of us are so busy going back & forth to the hospital that we don't connect with each other. Plus, most of the people are just not people I would normally be friends with. I try to like everyone, but personality-wise, I don't think I could just hang out with some of the people here. I did meet one family from Davenport that seem okay, so that is a nice connection to home. They have a little girl in the NICU, so they will be here a while, too. 

So there is my update for today – some happy, some not so much. Hopefully I'll be able to get on soon & tell you all sorts of good things, but in the NICU there are always ups & downs. I will let you know soon how things are going. Hope you're all having a great day!!!

~Renee

Update - October 16, 2008

Yesterday & today have been much better days than Tuesday was! Praise God!

Dylan is doing great. He had a heart murmur from the PDA for a while, but they were able to fix it with medicine & the drs. are pretty sure it is taken care of. They'll do another eckocardiogram tomorrow to make sure. He also had a head ultrasound done & the results came back as normal! That is a blessing!!! He was also able to have 1 of the 2 belly button IV's removed, so that means we are one step closer to being able to hold him. The nurse thinks that the other IV will come out soon, so we might be able to hold him this weekend. I am trying not to get my hopes up though. Derrick isn't doing such a good job of that though – he is so excited that we will get to hold him soon.

I am feeling much better than I was a week ago. I have a BP check on Monday, so please pray that that goes well. I do not want to land back in the hospital. I think I would go crazy! But I am feeling good & am hoping that that means I am not so sick anymore. I know I am still fighting some of the results of the pre-eclampsia (mostly feeling exhausted), but my swelling has gone way down & I am not having the breathing problems I was having before. & I can wear my wedding ring again! I haven't been able to do that since about week 10 of the pregnancy!

Derrick is doing well at home. He is back to work & is having somewhat normal days at home. He is staying busy with church & work, so that helps pass the time between visits.

I have been meeting some new people here at the Ronald McDonald house. It is not home, but it will do for now. There are other families here who have little ones in the NICU, so it is nice to have someone to talk to who really understands. From the people I've talked to, though, it seems like Dylan is the earliest & the smallest of the babies who's parents are here. I don't know that for sure, but that is the feeling I get. I am thrilled he is doing so well though!

I feel like I am starting to figure out what's going on, both here at RMH & at the hospital. I sleep like a rock at night & I think that's God's way of helping me to not panic about Dylan all night. I usually wake up once to call the nurse to check on him, then I'm right back to sleep.

Today has been a good day. Not all days will be & I know that, but I know that no matter what happens, God is in control.

The Wednesday I had my appointment that landed me in the hospital, I was typing up the sermon notes for Sunday's service. One of the verses our pastor used was 1 Thessalonians 5:16-18. I thought it was a pretty neat verse then, but now it means even more to me. It says, "Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus."

While I don't like what is going on right now, I know that there is a purpose behind it. That is why I am sharing my feelings so freely. Besides the fact that I need to get them out somehow, I also feel like someone else may benefit from them at some point.

Thank you all for all your comments, thoughts, love & prayers. I am thrilled & blessed to have such great friends. Love & hugs to all!

~Renee

Dylan & me in the NICU - I'm not sure who took this pic, but it is one of my favorites.

NICU and Ronald McDonald House

Sunday, October 12, 2008

I was released from the hospital last night (finally...) & am now staying at the Ronald McDonald house in Iowa City. While it is a nice place & will be great for a while, I still wish that it didn't have to be this way. No one really plans for having to leave their baby at the hospital.

I probably would have been released sooner, but Wednesday I got really, really sick again. My BP was really crazy high & I had fluid on my lungs again. The drs. re-adjusted my BP meds & put me on a medicine to help me get rid of all the fluid. I am feeling much better & I am glad to have somewhere to actually put things away & be able to focus on my little one.

Dylan is still doing great. The nurses in the NICU told me the other night, “He's just hanging out, being a preemie.” I know that it's true, but it's still hard to leave your tiny baby in the care of someone else. He is such a sweet little guy & I miss him tons. Last night before we left the hospital, we went to visit him. He was really upset & was crying & flailing all over. It was so hard not to reach into that little bed & pick him up & hold him & try to comfort him. I knew that that would not be the safe thing to do because he is so little, but it broke my heart to see him so upset. We finally realized that he was just overstimulated. He had been visited by my mom & step-dad, then the nurse did his diaper change & took all his vitals, then we came to visit. They also had the lights on in his room, which is not normally the case. We ended up turning his lights down & putting our hands over him so he couldn't flail so much. He calmed right down & went to sleep. It was nice to feel like we had done something, but it was still so hard to leave him.

We are planning on heading back over to the hospital this morning to visit with him. We have some other errands to run today, too, in order to get me settled in at the Ronald McDonald house. Derrick will be heading back to work tomorrow, so we have to do some shopping before he leaves. I am also going to try to get some rest today so that I don't end up sick again. The drs. told me that the best thing I can do is to rest & let the pre-eclampsia work its way out. I am planning on taking them seriously because I am pretty sure that over-doing in was what caused the flair up again last week.

I will try to check in more frequently now that I don't have someone hovering over me checking my BP & blood work all the time. Please keep praying for us. While Dylan is doing well, I know that things can change in a second. Also, Derrick is leaving for work tomorrow & I will be here by myself. That is very hard for both of us. So please keep praying – also, if you could remember the other families here at RMH in your prayers, too, I know they would appreciate it. Many of them are also dealing with babies in the NICU.

We love you all & appreciate all your thoughts, prayers, cards & other blessings you give us. I will be checking in again soon.

~Renee

Dylan with his "sunglasses," hanging out under the lights.