Saturday, April 30, 2011

Three week update

Here we are, the end of April. The update is we are now getting to the point we were expecting. At the mid week update we were talking about how Blake's numbers were coming down but the very next morning we got the first sign that those numbers may have reached their plateau point.

Now that we are into the weekend we can now see that the numbers (like his creatinine and BUN) have leveled out or numbers like his sodium or potassium are now uncontrollable without intervention. All of those things are sure tell signs that dialysis is near. The other concern is that he isn't gaining as much weight as they would like to see but is something that will be easier to control if we aren't playing with his fluid levels all the time. Indications would say that dialysis will start sometime this coming week.

The good news is that, with the help of a speech pathologist and a great set of nurses, Blake is starting to eat more out of his bottle. There is now a way to hold him while eating and he has really latched on to the premie nipple, that a night nurse tried, and that seems to be helping.

After all of us had visited Friday night and Saturday morning, mommy and Jenna spent Saturday afternoon with Blake. Jenna always does a good job when visiting and got to help with Blake's bath today. Today also included a visit from one of Jamie's college friends, Kate Dreyer. Both Jenna and Brody are a hit with the nurses as they always strike up conversations and the nurses enjoy Jenna's coloring pages that she has put up on the walls.

An update on Bowen... He gained 8 oz's in the last week. At his two week appointment he wasn't back to birth weight so he had to go back at three weeks to get re-weighed and is now up to 7 lbs 8 oz. He continues to be a great traveler and just be an overall great baby!

Jenna and Brody are settling in to what is going on. It may start to get a little confusing for all of us as baseball starts this week for Aaron but we know we will figure it out. Jamie has done a great job with her time in Iowa City and handling both twins.

One update that we should be sure to add is that as the twins start to fill out they are looking more and more alike! Other than their complexion they really are starting to have the same mannerisms, but do look alike.

Wednesday, April 27, 2011

Mid Week Update

Jamie and Bowen have made their way down to spend most of the week with Blake. Our plan is to get everyone down there again over the weekend and Aaron, Jenna, and Brody are very excited to see Blake in his crib and catheter free!

Blake has continued to make positive strides over the past few days. His creatinine level continues to come down (2.2 on Wednesday morning) and his BUN number has come down to 30 which prompted a "that is great" out of our kidney doctor and a "wouldn't it be nice if we can hold off on dialysis" out of the dialysis nurse. Yes it is GREAT and yes it WOULD BE NICE! We know that we are a long way from where we need to get for those things to happen but Blake has fought hard to get to this point, no reason to believe he can't keep going.

The medical field continues to amaze us as now Blake is 19 days old and got to add a speech pathologist and a physical therapist to the list of people that have come to visit him. The speech pathologist is suppose to be helping Blake learn to feed out of the bottle. He did change Blake's feeding orders to just eat out of the bottle every other feeding because he gets too tired, too fast and that will help him learn faster. He also changed the nipple shape and Blake seems to be helping him get more down during a feeding. The physical therapist came because the speech pathologist worried about Blake's muscle mass... ummmmm he isn't 3 wks old, is he supposed to be benching 200 lbs or what? The physical therapist said he was fine but would come back just to check to see how he is growing over the next few weeks.

We all continue to be amazed by little "Blakers" and where he has been and hopefully going. We know that we are a long ways from being done with this and we realize that it won't ever be perfect but we continue to pray for whatever the best is. Thanks for keeping up with us and thinking/praying for Blake.

Tuesday, April 26, 2011

Another Great Monday

Monday, April 25 was a crazy day but one that should be remembered. Aaron went back to school because he realized there are only 22 days left and he needed to get some things done before the end of the year. Jamie and Bowen were supposed to go back to Iowa City but Jamie fell ill early Monday morning and never made it. But all that being said it was another GREAT MONDAY for Blake...

Jamie called down to Iowa City mid-morning to let them know that she wouldn't make it down and wanted to know how rounds went. They were full of information: Blake had his IV taken out and is now taking all of his nutrients through his bottle or feeding tube, yeah for one less thing he is connected to but...

The big news was that they took out his bladder catheter to see if he could pee on his own. From all we had heard over the last two weeks we weren't expecting to hear that and as much as we wanted to believe his bladder could work we had been told that there wasn't a high probability of that happening. They told us to call back in the afternoon to find out the results. At 4 o'clock Jamie was a nervous wreck and made the call.... HE PEED! ON HIS OWN! He had filled up two diapers (we think they only check it every two hours) and at least for now his bladder is working on its own! Yeah for two less things he is connected to.

Also, because he now isn't hooked up to anything but the monitors he got to be put in a crib for the very first time rather than laying on the warming table. His creatinine level has continued to come down and yesterday his BUN number even dropped. All of these things are good signs and Blake continues to be a fighter. Obviously we know that this is going to continue down a long road all of these small victories just put a smile on our faces and send out praises that things are going as well as we could hope! We will continue our prayers for little "Blakers" (as we are sure all of you will) that he will continue to make strides going forward and continue being him! This just adds to that personality that we will all come to know and love about our "Blakers."

Monday, April 25, 2011

Easter 2011

Well, we haven't posted anything in the last few days because there really hasn't been much going on. Blake had his PD catheter put in on Friday and did just fine with that. They hope to let that set up the next two weeks before starting to use it. The have upped his feeding so that he is supposed to be taking 2 oz by bottle every three hours but he can handle about 1/2 an oz (sometimes) but mostly doesn't get the whole latching on thing yet. So the rest of his bottle goes down his feeding tube when we or the nurses give up. Since Jamie will be down in Iowa City over the next few days she is going to be there for most of the feedings and really work hard on getting him to drink from a bottle. If he can get that down they can take out his fluids IV which would be nice.

Our Easter didn't really bring any big excitement either. We took Jenna and Brody to their first Iowa Hawkeye baseball game. They had an Easter Egg hunt (which all the big kids ran and took all the eggs so J and B didn't get many) and they got their picture taken with the Easter Bunny. When we got home we had another egg hunt (set up by Grandma Linda) so they could have more fun. Brody was really funny at the game as he was yelling at the pitcher to throw strikes (sound familiar?). Once he did it when the crowd had went silent and embarrassed his mother, that was funny!

As for this week, they will continue to monitor Blake's fluids and try to get him to the point were he can take everything orally. Jamie and Bowen are headed to Iowa City for the first half of the week and Aaron is going back to school. Jenna and Brody are in good hands as they are hanging out with Grandma Linda.

Friday, April 22, 2011

Update after second surgery

Friday, April 22 saw Blake go and have his PD catheter put in so he can eventually start dialysis. The surgery was scheduled for 12:30 but didn't get started until about an hour later. That meant poor Blake didn't get anything to eat from the midnight feeding until after surgery sometime. When we all went and visited him this morning you could tell that he was so hungry and wanted a bottle but he was a trooper all morning and didn't really fuss about it.

The surgery went as planned and he was back in his room sleeping it off soon after. We will now wait about 2 weeks before we start the dialysis process. We think that once that starts it will be another 3-4 weeks before he gets to a point where he can go home and we are trained to do dialysis at home. As we all know, most of the time that process will take longer than we would like but the good thing for us is that we have accepted the process and will wait as long as it takes.

Blake and Bowen have both gotten some big fans in the nurses. Bowen gets a lot of attention because it isn't often that these nurses get to take a baby out of the room so they want to hold him and look him over while he is visiting. Blake gets his attention because he is such an easy baby to take care of. He really is developing a laid back attitude and doesn't fuss too much about a blood draw or an x-ray. He seems very content in what is going on but also has a good attitude about it as he smiles for us and enjoys our company. The nurses have started creating scrapbook pages up on the walls of Blake's room and have picked up that we are Hawkeye fans. They created Hawk pages for both boys and have hoarded every Hawk blanket they can find and are storing them in Blake's room so if they need to change his bedding they have it ready to go, how nice!

Today's visitors included Erica Felkey and Uncle Adam and Aunt Jill. Again, we love when we have visitors because it helps break up the day. Now, if the weather would just cooperate so that when we bring Jenna and Brody down they could play outside rather than being stuck in Blake's room, that would be great!

The story behind "Bowen"

I've had a lot of people ask us about the name "Bowen," so I figured I better write it on the blog so I have it down. It goes like this:
For most of the pregnancy we were thinking we were going to keep the boys names starting with a "B". We tried thinking of other names, but we kept coming back to Blake and Beau.

Fast forward to Tuesday nite, just two days before I was scheduled to be induced. I saw previews for a new show on Bravo called, "Pregnant in Heels." I turned it on and Aaron started watching it with me. This crazy couple on there was having focus groups to determine the name for their third born. One of the names they liked was "Bowen".

As soon as Aaron heard the name he turned to me and told me he really liked that name. I was like, "are you kidding me? It's two days before I'm going to give birth! Wait...are you messing with me?" He assured me he wasn't and I kept saying the name and the more I said it the more I liked it.

After doing some research we learned it is not a popular name at all (good thing!). We also figured that we could shorten the name to "Bo" if we wanted (which we don't really want to). The next morning, Aaron did his own research and learned that Drew Brees (QB for the Saints) wanted "B" names for his baby boy, who was born in October. People could tweet in their suggestions. The winning name? Yep, Bowen! That was the only "Bowen" instance we could find online.

So, it was kind of an impulse decision, but I'm so glad we went with it. We've had a lot of compliments on the boys' names and I just can't see "Bowen" as a "Beau" now! (On a side note, the crazy couple on the t.v. show did end up naming their son Bowen, too.)

The middle names of the boys are after Aaron. We took his first and middle names and made each of them a middle name for the boys. :)

Thursday, April 21, 2011

Missin' them!

Trying to balance everything in Iowa City and back home is a challenge. So many people have complimented us about how we're doing it, but we don't think we're doing anything that all of you wouldn't do if you were in the same situation. That being said, it's so hard emotionally. When I leave Iowa City, I miss Blake like crazy and when I pull out of our driveway in State Center to see Blake I cry because I don't want to leave Jenna and Brody.

This was the best part of coming home yesterday - their smiles!!!

Wednesday, April 20, 2011

Day 12

Wednesday, April 20 started with us walking in to news that Blake's potassium (K for all you that remember chemistry) had went way up over night. At the level he was at, for an adult it would be a scary place of irregular heart beat or even heart attack but for a child they are a bit more able to withstand this. It didn't seem an emergency by any means but they gave him some medicine to bring the number down. His creatinine level came down again but we aren't sure why and the doctors don't seem to care anymore (???).

The great thing was that we were planning to leave around lunch time and Blake must have sensed that because he was awake all morning! We walked in at 8:45 and when we left around 12:30 he was just closing his eyes. We both got to hold him and he continues to try to eat from a bottle. His stomach must be starting to stretch out a bit more each time because he continues to get more from each feeding via bottle and then not as much through his feeding tube.

Bowen continues to mature as well as he is spending more of his day awake. We came home today and we love to see how Jenna and Brody are just so good with Bowen. They both helped with bath time tonight and are excited to go back to Iowa City to see Blake.

We do know that Blake with get his dialysis catheter put in on Friday and unless needed we will wait around 2 weeks before they start dialysis. Again, there is always changes to the plan it seems so we will just wait and see what happens next.

Hurry up and wait

Tuesday, April 19 was a pretty slow day. Blake didn't get his urinoma drain out (we believe because of a break down in communication between departments). They are giving him less fluids through his IV and is now taking most of his nutrition from his bottle feedings or through his feeding tube. Yesterday he was able to stay awake to get about 20cc of fluid down at the most so hopefully we can continue to work on that today and get him to stay awake longer. Blake is still not scheduled for his dialysis catheter surgery but we are hoping to find out more about that today. His BUN number is still in the 30's and his creatinine number dropped for the second straight day but it still looks like dialysis is in his near future. Today's visitors were Jay and Renee Smith.

I know we haven't talked much about Bowen lately so I will give you a quick update on him. He is doing great with all the travel and hanging out at the hospital. He eats and sleeps when he is supposed to and is awake some of the time. He is doing great on his night sleeping, including 3 or the last 4 nights only getting up once! We have also figured out that he doesn't like to have his picture taken, always closes his eyes or makes mad faces when we try. Yesterday, he also didn't like being put in bed with his brother but we did manage one ok picture of them.

The twins on day 11.

Monday, April 18, 2011

Good start to the week!

Monday, April 18 didn't really change anything medically (in terms of the bladder/kidney issues) but for the parents and Blake today was a great day! "Blakers" got to get completely off of his oxygen support and got his arterial line out. What does that mean? FIRSTS!: He got to be held by his mom for the first time! He got to get a bath! He got to put on clothes! He also is trying to feed from a bottle, although he struggles a bit with it hopefully that will be something he can pick up fast over the next few days. Here are some pics from todays firsts!

First holding session for mom, she also got to try and bottle feed during this time. There is just one little problem, Blake has his days and nights mixed up. The nurses say he is up all night, when we are there during the day he sleeps the whole time. Hard to feed when he won't wake up!

First bath: "come on mom, I don't stink that bad. Let me go back to sleep!"

Yes, his first outfit is the same first outfit that Bowen got... because it is one of the only things we have that fits... also because it was the only thing we had in the diaper bag, we didn't know that he was going to have such a good day to get to the dressing point but we are happy that he did.

Tomorrow he will get the drain to his urinoma out which will be one less then attached to him. At some point this week he will get a catheter put in to start dialysis. Although today his creatinine number came down for the first time, we will still need to wait and see what that means. As for the catheter, they will put that in and then (unless emergent) we will wait about two weeks before dialysis actually starts. From there, we will be looking at another 2+ weeks (at the best) before he, and us, are ready for him to come home on dialysis. From that point in time we will be aiming to get to about 20 lbs before talking about kidney replacement. We found out that kidney replacement in infants is just one of maybe two or three transplants in their life. The good thing is that as an infant you go straight to the top of the list for replacement. In most cases, a infant kidney comes from an adult relative so that is something we will have to discuss in the future as well. Today's visitor was Shannon Reisinger who came with some great gifts of chocolate! (for both the parents and the older kids)

As much as we heard today medically, it is a day we remember for the firsts! It was a great day for all of us and hopefully this will lead to so many more!

Sunday, April 17, 2011

Home to regroup

Sunday, April 17 we got pretty much the same message as yesterday about what was going to be happening in the near future. Aunt Mandy and Uncle Justin got to go see Blake one more time before they had to head back to Minnesota. Also visiting today were Brad and Sara Morgan and Danielle Toyne. We continue to enjoy visitors as it helps break up the day.

Aunt Mandy was able to capture some good photos over the weekend. Here are a few we really like.

Blake wide awake and looking at his best! (looking right at his mommy and listening to Uncle Justin singing to him)

Aunt Mandy and Uncle Justin getting their first shot with the twins.

Today we headed home around lunch so that we could regroup and repack. Since we think they will be making some medical decisions over the next few days, Jamie and I are headed back (with Bowen) to Iowa City while the elders stay with Grandpa Frank for the first part of the week. Our goal is to again have the whole gang together for the Easter weekend! Hoping for a good start to the week!

Saturday, April 16, 2011

Not what we wanted to hear

Saturday April 16 started off with Aaron and uncle Justin headed to Kinnick to take a look at The Hawk Shop sale before the Spring Football Game. From there Aaron went to hear rounds by himself. While there he didn't really hear what we wanted...

The numbers just simply aren't moving in the direction that we were hoping. It is looking more and more likely that we are headed for dialysis and eventual kidney replacement. We are also looking at life long bladder issues including possibly a supra-pubic catheter (permanent) to help him drain.

Nothing is final yet but the blood work numbers are just going in the wrong direction. We know we keep saying this but this is going to be a long stay and an educational process for us to be able to care for him at home.

Our away time consisted of Jenna, Brody and Aaron heading to the Spring Game for a short time, it was really cold and windy. Here is a pic:

Friday, April 15, 2011

Another procedure...

Friday, April 15th saw Blake get his second procedure done. After continuing to monitor his blood draws the doctors were still concerned about where his creatinine level was headed. The higher it goes the bleaker the outlook for his kidneys. To eliminate the possible cause that the urinoma (cyst like sac filled with urine built up from in utero) on his left kidney is causing the creatinine number to be skewed they went in and drew off the old urine. They took 1.5 ounces (that is a lot!) and left a drainage tube in just to make sure they got all the old urine out of there. Hopefully this will make his creatinine number start to drop.

Visitors today included Paster Brent and Uncle Justin and Aunt Mandy. Jenna got to spend most of her afternoon with Blake and mom and did a wonderful job of talking with Blake. She talked with him about how she can't wait for him to come home and how Bowen misses him. Jenna also made friends with one of the nurses and colored her some pictures. She also left some coloring pages up on the wall for Blake so he knows what to expect when he gets home.

We are hopeful that over the next few days we will be able to pull the catheter and get urine flowing on its own. We also are looking forward to the day that his numbers stay the same from one blood draw to the next so they can take out the last IV in his belly and then we can hold him. Continued prayers and support for Blake!

Thursday, April 14, 2011

Slow Thursday, Family Pic

Thursday, April 14 the day started with Jamie and Bowen in Iowa City with Grandma Jo and Aaron home with Brody, Jenna, and Grandma Linda. Aaron took Jenna to kindergarten round-up, packed up J and B and then headed back to Iowa City. Visitors today included The Barry's, Tim Keigan, and Chris and Megan Davis. Yesterday, Brad Morgan stopped by too. It is so nice to have visitors, even for just a short time, and we really appreciate all the thoughts and prayers.

Today, everyone got to be in the same room for the very first time! Jenna and Brody were full of youthful questions about the machines and what is this, that, or whatever. They did very well in the room and wanted to get up close and see "Blakers." As we went through the afternoon, the nurse allowed Jamie to set Bowen in right next to Blake and then we all gathered around to take our first family picture.

We also attempted one of just the kids but of-course no one will cooperate when we need them too, oh did I mention those someones are Jenna and Brody!

As for a medical update there isn't much to report today. No real progress made today and now we aren't sure that we will pull the catheter tomorrow or not. We continue to worry about Blake's creatinine levels as they continue to go up. They are thinking about a few different options on what to do but we won't know what they choose until morning.

Here is Jamie's rendition of a very special moment between the twins today as they laid next to each other:
I was trying to hold Bowen up by Blake to compare their length. The nurse (talking to Blake) asked if he wanted to hold his brother's hand. So, she had Blake's hand and I held Bowen's hand to Blake's. I've heard people talk about the "twin bond," but today I witnessed it. As soon as their hands touched Blake opened his eyes instantly and turned his head to look at Bowen. It was the most precious thing and made my day!!

Wednesday, April 13, 2011

1st Surgery

Wednesday, April 13 Blake had his first surgical procedure. Today he went in to have the posterior urethral valves (that aren't supposed to be there in the first place and are responsible for this whole thing) removed. It was a scope procedure so no external cutting or anything. According to the surgeon everything went as planned and now we wait some more. We will wait two days and then pull the catheter and see if he can control his own urine output. Hopefully that will be the case but we will just have to wait and see. Once we pull the catheter it shouldn't take too long to figure out if he can pee or not. Then it will be on to the next issue... whatever that is! Again, thanks to all of you for your prayers and thoughts.

Tomorrow, Jenna and Brody get to meet Blake and they are super excited!

Tuesday, April 12, 2011

An update and pics

Tuesday, April 12 was a day of adjusting fluids. Blake got out of his oxygen hood and put on some low oxygen help through his nose. For the most part he can breath on his own and keep his blood oxygen levels up but they will just continue to help him a little during this process so he can continue to grow and get stronger.

Throughout the day today the labs started coming back with positive results. They are looking to get his sodium numbers up while also looking at electrolytes and potassium. What we thinking think is happening is that his kidneys are cleaning the blood but not enough nutrients are being reabsorbed so that is why they have to give him so much water and nutrients. Hopefully tomorrow they will have those things all balanced and then we can think about moving forward. I will continue to keep you all updated each night.

Here are a few pics of the past few days. The first is of the twins together for their first group photo. A nurse allowed us to lay Bowen down next to his brother today so Jamie could get the shot on her phone. (Blake on the left, Bowen on the right--Obviously!)

Jenna and Brody with Bowen on the day that he came home.

Monday, April 11, 2011

The twins have met

Monday, April 11th the twins finally got to meet outside of Jamie. Aaron finally got to reunite with Bowen and Jamie got to see Blake for a while. Grandma Jo brought Jamie and Bowen down and will be staying for a few days. Grandma Linda is staying with Brody and Jenna, making sure Jenna gets to school and wearing Brody out, ha ha!

Blake update: Today Blake had a long day of fluid adjustments and getting a VCUG done. The VCUG allows them to see what the lower-urinary tract looks like. I will spare you the details of all that other than we do think that the blockage in the lower section is posterior urethral valves which can be taken care of.

The number one concern right now is completely ridding Blake of his pneumothorax issues (which are clearing up and are almost gone) but also figuring out what fluids he needs to stabilize his lab readings. His sodium level is low and needs to come up. We need to get good numbers on his electrolytes too. We can't move forward on trying to fix blockage, bladder, or kidney issues until these are stabilized.

This is going to be a loooonnnnnggggggg process. Who knows how long, time will give us answers but we have no clue how much time. I will try to keep this updated each night.

Sunday, April 10, 2011

They are here!

Born on Friday, April 8, 2011
Blake Aaron Born at 12:19 pm, 7 lbs 1 oz, 20.5 inches

Bowen Michael Born at 12:29 pm, 7 lbs 3 oz, 20 inches

Just 25 hours after birth, Jamie and Bowen headed for home with Grandma Jo. They are there with Jenna and Brody and doing well.

Blake on the other hand has continued on his roller coaster. After being taken directly to the NICU in Des Moines after birth, he was transported to Iowa City early Saturday morning. Aaron left a few hours later to go and be with Blake at the NICU at U of Iowa Children's Hospital.

This is his story. After birth he had a pneumothorax (more or less a lung collapse because air is escaping outside of lung and doesn't allow it to inflate fully) in his left lung. Since then he has had three more on his right lung. So far, the method to remove that air has been sticking a needle in to remove it. If it doesn't stop they will put a breathing tube in his side to allow for it it to just escape regularly so the lung can continue to fill.

Once we have that stable then we can move on to the bigger issues with the bladder and kidneys. Right now he is producing urine but according to numbers we aren't sure how much blood is actually being cleaned by the kidneys. The bladder is being drained by a catheter but there might be other issues higher up that still isn't allowing the kidneys to drain fully.

Many of the tests can't be done until the lung issue is fixed because they are afraid to transfer him out of his little oxygen dome. All of his vitals are good but the kidney/bladder issues look to be long term care but we just don't know much until we can get some more test results.

Visitors so far have included Grandpa Frank and Sara, Danielle, and Emily Morgan.

Please keep Blake in your prayers and I (Aaron, since I have the computer with me) will try to keep this updated with photos and progress being made.

Thursday, April 7, 2011

The day has arrived!

It's Thursday morning at 5:41 AM as I type this. I've been tossing and turning since 4 AM and figured I should quit fighting a losing battle and just get up. I can't stop thinking about our induction tonite at 8 PM. I keep running different scenarios through my head and trying to give myself pep talks about delivery. I've already done this twice, so I know I can do it.

I remember when my water broke the night before I was supposed to be induced with Brody. I was getting ready to head to the hospital and Aaron and my mom were up. I just remember crying because I was so scared that having Jenna was a fluke and I wouldn't be able to do it again! Yes, I'm a dork like that, but I'm having similar feelings about that (times two) this morning.

I was also thinking that if you would have told me in high school that Aaron and I would get married and have 4 kids, including a set of twins, I would have probably laughed in your face. But, these twins are the best things I never knew that I wanted and I can't wait to meet them!

Next time you see a post on here, it will be of pictures of Baby A and Baby B, OUTSIDE the belly! :)

Saturday, April 2, 2011

Our Last Dr. Appt

We had our last doctor's appointment on Friday. I can't believe the end is actually in sight!

Here's a rundown on what we found out:
1. Boys look good! Growing, growing, growing... They are estimated at 7 lbs. each and all their other measurements were at about 38 weeks.
2. They passed their four part test again. Yay!
3. Baby's B head has dropped ALOT! I told Aaron earlier in the week I thought I had dropped and it was definitely confirmed.
4. I'm dilated zero. No surprise there, since I was never dilated with the other two when I went into labor.
5. The Dr. still says we'll just "wait and see" what happens at birth with Baby A. We are optimistic that everything is going to work out!
6. If nature doesn't send me into labor before next Thursday, we're scheduled for an induction on Thursday, April 7th at 8 PM. The plan is to have the babies on Friday, when Dr. Wang is in labor and delivery.
7. We were warned about the circus that will be in the delivery room. Each baby will have his own team of nurses, as will I, plus my doctor and a neonatal doctor for the twins.

That's about it. I'm hoping (actually we're both hoping) that the babies stay put until they are induced. Every day is important!