Status Quo

Written Mar 31, 2012 9:48pm
          

After yesterday's progress, we were hoping to arrive at the hospital today with news that Brady was taking the full amounts by bottle. He wasn't. Today was very much like yesterday. He had some normal feedings during the evening and slept quite a bit at night. He took 60 ml, 70 ml and 70 ml today when we were there.

They are all good amounts, and he actually took over 50% of his feedings by bottle over the past 12 hours. He didn't appear to be straining as much when he was eating today. We hope that the reflux medicine is making it easier and more comfortable for him to eat.

At the same time, it doesn't appear like he's going to make that next leap this weekend. We think they have us on the schedule for surgery on Monday morning. We will need to confirm everything and give permission either tomorrow or Monday morning.

We do appreciate hearing from family and friends with experience using G-tubes. There always is a little bit of fear with the unknown. We obviously would prefer for Brady not to need surgery. At the same time, we know that this procedure is the best step for Brady's recovery.

The nurses there call the G-tube (or G-J tube) the gateway to home. We've learned that it's a very common procedure at the NICU. While parents are often reluctant at first, we've also learned that parents really grow to appreciate the device.

Thanks again for your messages and prayers as we move to this next phase in Brady's recovery.

With love,

Tyler, Ali, Ava, Casey and Brady

One Month

It's hard to believe that it's been a month since Brady's birth. We're so proud of the progress he's made and so thankful to the doctors and nurses who continue to care for him.

We think the superhero costume Brady wore yesterday might have rubbed off on him.

When Ali and I arrived at the hospital today, the OT met us in the hall. She said Brady had his best day of therapy with her today. The neurologist was also checking on Brady at the time, and they both were impressed with Brady's progress through all of the exercises. The OT also said that Brady had his best feeding with her at 10 a.m. Brady took 78 ml, and she believed he would've taken the entire 110 ml if it wasn't for his reflux problems.

In fact, Brady had his best day ever eating. He took 42 ml at 9:30 p.m., 15 ml at 1:00 a.m., 20 ml at 4:00 a.m., slept through his 7:00 feeding, took 78 ml at 10:00 a.m. (with OT), took 48 ml at 1:00 p.m. (with Ali), and took 60 ml at 4:00 p.m. (with Ali and me tag teaming him).

The OT believes he might now be strong enough to complete entire feedings, and that sentiment was echoed by our nurses and the neonatologist. They moved Brady to a different reflux medicine today called Protonix. We'll know in the next 24 hours if the new medicine will allow him to complete a full feeding.

If he doesn't make those final strides this weekend, we'll probably make our final G-J tube decision by Monday.

It's a big weekend for Brady. We know that Brady continues to be healed through your words of encouragement and prayers. Please say an extra prayer or two over the next couple of days.

With love,

Tyler, Ali, Ava, Casey and Brady

Superhero Day

Brady's feedings were very similar today. He took 12 ml by bottle at 10 p.m. last night and 15 ml at 1 a.m. He slept completely through his 4 a.m. and 7 a.m. feedings. There was a time when Brady was mostly awake during the night, but now it has seemed to switch to the morning. Brady took 64 ml at 10 a.m. and 45 ml at 1 p.m. Ali fed him 70 ml at 4 p.m. His feeding seems to be stagnant at a rate around 40% of his intake by bottle. We'll see if that stays the same through the weekend.
Ali and I have talked a lot about how it feels like we are living a "double life" at the hospital and at home. We have a family of three at the hospital for several hours each day. We get up to the hospital between 10-11 a.m., hold and feed him all day, say a prayer for him, and kiss him goodnight around 5 p.m.

We also have a family of four at home. Ali gets Ava and Casey ready in the morning, drops them off with one set of grandparents, and then we see them again around 6 p.m. We eat a meal together, play with them, read some books, say a prayer, and kiss them goodnight around 8:30 p.m.
I feel bad that I don't think about Ava and Casey as much as I should when I'm with Brady and vice versa. Ali and I keep talking about how weird it is to have a disjointed family like ours. Nothing feels normal.

At the same time, we feel so blessed that our kids are taking everything in stride. Brady keeps fighting and growing. Ava and Casey are enjoying spending more time with their grandparents and cousins. We've created new routines, and our kids seem to be adjusting very well.
Last night we went for a stroll outside with the kids around the block. Ava rode her bike and Casey rode his Hot Wheels. Casey would make Fred Flintstone proud. He doesn't use the pedals at all, he just moves his feet as quickly as he can on the ground below him. It's amazing that he can keep up with Ava on her bike most of the time.
I was walking next to Ava and talking to her about our day (mine at the hospital and hers with grandma). I told her we were proud of how well she was handling being away from her mom and dad so much. She looked at me and said, "That's okay, Dad. I'm just getting some practice for when I go to college and won't be living with you and mom". That's our Ava. She's six going on sixteen.
Today was Superhero Day at Amplatz. They had a number of activities in the lobby for children in the hospital and their families. Patients and hospital staff members were dressed up as Spiderman, Superman and Wonder Woman. Kids were able to make their own masks and capes. Chad Greenway from the Vikings and several Gopher football players were there to sign autographs and play with the kids. Later in the day they had a meal from Chili's Restaurant and cookie decorating. It was amazing to see so many critically ill children with smiles on their faces.

Ava and Casey were at Grandma Rita's house and Brady is unable to leave him room, so Ali and I spent some time getting superhero goodies for our three kids. Brady didn't seem very excited to get his new gear...he just kept sleeping. We put a Spiderman tattoo on his arm, a cape on his back, a mask on his face, and a balloon and certificate in his crib.

I heard about the event a couple of days ago on the radio. They were talking about how these kids in the hospital are able to dress up as their favorite superhero. Many choose the traditional characters, but some patients want to dress up as their biggest hero, their mom or dad. I know if Ali or I had the chance to dress up as our superhero, we'd throw a tube in our nose (fake, of course) and wear a onesie for adults. We'd become our superhero, Brady.

Good night, SuperBrady. We hope you'll use your new cape to fly home soon.

With love,

Tyler, Ali, Ava, Casey and Brady

Care Conference

Brady's feeding really hasn't improved over the past few days. He continues to eat about 40 percent of his required volume through a bottle. He has large feedings and then seems to sleep through next one. It's hard to tell if his feeding issues are due to brain injury, throat trauma, or lack of physical strength. His aspiration and reflux problems make it even more difficult to determine a cause or a solution for his feeding issues.

They had initially set this Sunday as the point to reevaluate his progress with eating. If he isn't showing improvement by then, there's a good chance that he has reached a plateau and could stay at that level for several more weeks.

Our nurses had mentioned having a meeting with the neonatologist, OT, pediatric surgeon, and nurses about the next steps with Brady's treatment later this week. Instead of scheduling that meeting, they all stopped by Brady's bedside throughout the day today.

We actually had three surgeons who visited us at different points. The first was a resident student, then the actual surgeon who would complete the procedure and then another resident. Since the U of M is a teaching clinic, we've met residents almost every day at the hospital.

The doctors all explained that there are three treatments for babies like Brady. The first is called Nissen fundoplication. It involves wrapping the upper portion of the stomach around the lower portion of the esophagus to cure the reflux issue. We've learned this is usually a last resort surgery, and they would prefer not to do this with Brady right now.

The second option is the G-tube which we explained a few days ago. They would insert a button valve outside his stomach that would allow us to feed him directly into his stomach instead of through the tube in his nose.

The third option is a gastrostomy-jejunostomy (G-J) tube. This is very similar to the G-tube except there is a second internal tube that goes into the small intestine. The button on the exterior of the stomach would allow us to feed him directly into the stomach (large amounts) or into the small intestine (smaller amounts) in any combinations. The advantage of the G-J tube is that feeding directly into the small intestine eliminates the reflux issues that occur in the stomach.

The doctors all told us that the G-J tube is the best option for Brady. Our nurse brought us to look at another baby in the NICU who currently has a G-J tube. She explained how it works, and it was nice to see exactly what it would look like.

We also met with the neonatologist today. He said that it's difficult to predict how long it will take Brady to eat on his own. If he has reached a plateau, it could be weeks or months.
His recommendation was the G-J tube if Brady isn't showing more progress by Sunday. Our OT and nurse today also said the G-J tube makes the most sense.

We scheduled the G-J tube surgery for early next week. We'll wait to see Brady's progress through Sunday before we confirm the surgery.

The biggest advantage of a G-J tube is that we would be able to bring Brady home. The neonatologist told us that babies will recover more quickly at home. Babies can't go home with the feeding tube in their nose because they are too difficult to manage. The G-J tube would allow us to feed Brady by bottle and then supplement the rest of the feedings through the tube. We could send large amounts into his stomach or trickle smaller amounts overnight into his small intestine. It also would allow us to feed him any medication directly into his stomach (Brady will be on a seizure medication when he comes home).

We have some concerns about bringing Brady home with this tube in his stomach and doing everything on our own. Brady will stay in the hospital for about a week after the G-J tube surgery. Ali and I will be able to work with nurses and learn how to use the tube and care for Brady during that time. We also might stay overnight at the hospital before bringing him home to make sure we feel comfortable with everything.

We continue to trust the doctors and nurses and the suggestions they make for Brady's care. Please continue to keep Brady in your thoughts and prayers as we move through this final hurdle to bring Brady home.

With love,

Tyler, Ali, Ava, Casey and Brady

Four Weeks

Ali drove for the first time since having the baby today. She dropped the kids off at her parents' house and met me at Burnsville after my track practice. When I went to get her out of the truck, there was a loud hissing noise coming from her driver's side front wheel. I looked at the tire and found a small hole. The tire was flat in a matter of seconds.

Luckily we had both vehicles there at the time. I drove the car 20 minutes to bring Ali to the hospital...dropped her off at the front door...drove 20 minutes back to the school...changed the tire...and drove the 20 minutes back up to the hospital again.

I held Brady for about 15 minutes and it was already time to bring Ali to her doctor's appointment.

Ali's wound still hasn't completely healed. There is now an area about one inch in length that is still recovering. The doctor did some silver nitrate cauterization on the wound. There was a small section that was healing and she used a Q-tip to open it up a little. Then, she cut that extra skin off. She then used a Q-tip with silver nitrate on the end.

When the silver nitrate comes in contact with fluid (blood), it causes a chemical reaction that burns the tissue to help it heal. Ali said it didn't hurt at the time, but the area was sore as we left the clinic. She'll go back for another incision inspection next Thursday. The race is still on between Brady and Ali to get healed first. :)

Brady had a setback with his feeding overnight. He took 45 ml at 9 p.m. At 12:15 a.m. he had 30 ml and then stopped sucking completely and cried. They gavaged him the rest of the night. They woke him up at 10:00 a.m. and gave him 30 ml. He was very fussy at that time and showed signs of reflux (arched back, making faces, etc.).

Yesterday the OT tried an orthopedic nipple to see if it would help him eat more quickly. The OT today thought the new nipple might be the cause of the extra discomfort. They thought it was allowing the milk to flow too quickly for him to handle. They moved him back to a traditional nipple and it seemed to help a little for his 12:45 feeding.

It's hard to tell if his difficulty with eating is brain related. We've learned that every baby is different and each progresses at a different rate. The process of being intubated slows the eating process down for some babies. Brady has also dealt with aspiration and reflux. Because his milk is more thick (to prevent aspiration), it takes more energy for him to eat. The one thing we don't want to do is create a negative eating experience for Brady. We want him to gain strength, coordination and confidence over time.

We're hoping to have a care conference later this week with the neonatologist, OT, and nurse to talk about Brady's progress and our next steps. If Brady's condition stays the same over the next few days, we might move toward a G-tube.

Once again, we're willing to wait as long as it takes and try whatever techniques they suggest.

Ali and I left the hospital a little earlier than usual today. We had a babysitter watch the kids, and we went out to dinner and a movie. Today is the 11th anniversary of our first date, and we try to celebrate it every year. We feel torn between our life at the hospital and our life at home. It was nice to have a few hours tonight to get away from everything. We also talked about how fortunate we are to be surrounded by such an amazing group of family and friends.

Thanks for your continued messages and prayers for Ali and Brady.

With love,

Tyler, Ali, Ava, Casey and Brady

Lyrics

Right before Ali and I left this evening, Brady moved to a new room. This is now his third location, and we feel like we're getting to to know every inch of the NICU. We were told that there was another baby who was using a ventilator and needed our place. This once again is good news that Brady continues to improve and now is in a room surrounded by babies who need minimal support.

The bad news is that Ali and I really loved that location. It's one of the only spots in the NICU next to a large bay window. Ali and I were able to hold Brady and watch people walking and driving by the hospital. When you're in the hospital for six hours or more (like Ali has been every day for the past three weeks), it's nice to see that daylight and do some people watching. Brady's new room has windows, but none are located as conveniently as our last location.

Today was much of the same for Brady. Ali and both had the chance to feed him a bottle. Actually, more than half of his feeding was done by bottle over the past 12 hours:

Time Bottle Gavaged
6 p.m. yesterday 40 ml
8 p.m. 65 ml
9 p.m. 37 ml
1 a.m. today 65 ml 60 ml
4 a.m. 100 ml
6 a.m. 48 ml
9 a.m. 70 ml
12 p.m. (Tyler) 40 ml 70 ml
3 p.m. (Ali) 45 ml 55 ml
6 p.m. 57 ml 43 ml

We really have no idea how much he is improving. He is still struggling with some reflux issues when he eats. The nurses keep telling us that he's getting stronger, and they hope he takes the big strides necessary to get him home soon.

The OT came again today and Brady continues to show improvement with all of his body movements. All signs are telling us that once he's able to eat on his own, we'll be ready to leave the hospital.

There are six babies in our room and it is pretty tight quarters with all of the equipment and bodies around. When we arrived this morning, Brady was sleeping on his tummy with his hands tucked under his face. I sat back in the recliner and rested him the same way on my chest.

A few minutes after getting settled, a group of doctors came into our room to do rounds on another baby in our room. When they do rounds on the NICU, the doctors and nurses talk about the baby's progress and any modifications they are going to make to the treatment.

Since they are going over private information about the baby, they ask the other parents in the room to wear headphones. Ali and I put on some headphones, and the nurse asked us what kind of music she should play. We both said we didn't care, and then I told her to play some country music. She played an Internet radio station into our headphones.

I was relaxed back into my chair, my feet were up the in the air, I was looking out the window, and Brady was snuggled up on my chest. It was a completely peaceful moment. This was the song that played: http://www.youtube.com/watch?v=QUuQPSVx684

Tim McGraw - "Comin' Home"

Say goodbye to Old Man Winter
Say hello to sweet springtime
'Cause I'm coming out of hiding
I'm gonna get it right this time

After so long being frozen
It took a while to thaw me out
I spent too long not knowing
What love's supposed to be about

Now I'm finding out

[Chorus:]
It's a lot like coming home
From a long time walking out in the snow
Then I looked at you and knew I never knew nothing
And it broke this heart of stone
It's a lot like coming home

Like a boat out on the harbor
That's been battered by the sea
I've been through some stormy weather
But you shine a light for me
Girl, you set me free

[Chorus]

Coming home
Feels like I'm coming home (repeat)
Oh baby, I'm coming home (repeat)
I'm coming home (repeat)

It's a beautiful song and it's a moment that I'll never forget...holding Brady and hearing those words. Even though it's a love song about a girl, the words really struck a chord with me, especially these lines:

"Say hello to sweet springtime"
"After so long being frozen, it took awhile to thaw me out"
"I've been through some stormy weather, but you shine a light for me"
"Feels like I'm comin' home"

With love,

Tyler, Ali, Ava, Casey and Brady

Cue Based Feeding

Jerry and Rita picked up Ava and Casey today and brought them to the zoo with their cousins (Elsie, Anika and Cole). Ali and I went up to the hospital to have snuggle time before the OT arrived.

The OT did many of the same exercises as yesterday. Brady had similar results with his muscle tone, reflexes and natural movements. The OT was very pleased with his overall progress.

We learned that Brady had 55 ml with a bottle at 5 p.m. yesterday, 55 ml at 8 p.m., and 40 ml at 1:15 a.m. He slept through the next two feedings and was gavaged.

Our nurse arrived at 7 a.m. and decided to move him to cue based feeding. Instead of feeding Brady every three hours, we are now looking for cues from Brady that he is hungry.

Brady's signs that he is hungry could include: increased alertness, moving his arms and legs, moving his mouth and tongue, making noises, and eye movements. Crying is considered a late stage of hunger, so we can often catch those signs before he cries.

The OT started working with Brady at 11:30. She woke him up with her therapy and noticed most of those signs listed above. I started feeding Brady at noon and he took 25 ml.

Ali and I left for lunch and our nurse noticed more signs from him while we were gone. At 12:50 she fed him 20 ml. At 2:00 she started feeding him again. Ali and I arrived back from lunch and Ali continued feeding him. He ended up taking 15 ml during that feeding time.

We had some good snuggle time with him for the next hour or so. Eventually he woke back up and started crying. I started feeding him at 3:15 and he took 25 ml.

When Brady was on scheduled feedings, he was getting 110 ml every three hours (440 ml every 12 hours). On the cue based program they want him to take 380 ml every 12 hours.

Brady took 85 ml over the four hours we were feeding him. It will be interesting to see how he did after we left. They will gavage anything he doesn't take by bottle over the 12 hour feeding periods.

The best part for us today was disconnecting Brady completely from his heart monitor the entire time we were there. Ali and I were able to walk around the room with Brady. We stood with him by the window and watched the activity outside. They hooked him back up when he was in his crib, but it was nice to have that freedom while we were holding him.

Ali and I also left the hospital for lunch today and drove to Sally's on the U of M campus. We've both grown tired of the cafeteria food at the hospital after eating it for three weeks. :)

We can't wait to get Brady outside to breathe this fresh spring air.

With love,

Tyler, Ali, Ava, Casey and Brady  

Family Time

Ali and I headed up to the hospital after track practice this morning. We took turns snuggling with Brady before the OT showed up.

At 11:30 Brady went through therapy with Holly. She was very impressed with his muscle tone. His upper body and lower body are improving. He hasn't shown any ankle clonus for several days. Brady once again displayed tremendous strength during tummy time. Holly also did several exercises to wake him up before feeding time.

At noon it was my turn to try to feed Brady with a bottle for the first time. Holly gave me several tips while Brady was feeding. I sat Brady on my left leg and held his head and jaw upright with my left hand. Because of Brady's reflux, it is best to start feeding him from that position. I held the bottle like a pencil in my right hand. I learned to angle the bottle down to put pressure on his tongue. When he stopped eating, I used my fingers to support his chin and pressed in his cheeks to create better suction. I also pulled the bottle out a little to get him to suck it back in and continue eating.

After a while he started pulling away and arching his back. This was a sign that he was getting some reflux. I then tilted his head down to my knee and held him sideways on my left forearm. Since the stomach is shaped like a "C", this prevents the reflux from moving up.

I tried every trick in the book for that next half hour. I would sit him up, tip him down, squeeze the checks, lift the chin, press the tongue, pull the bottle out, burp him, and repeat. I was pretty proud of myself until I found out all of that work had resulted in 28 ml. I had a new appreciation of what Ali has been doing every day and what our nurses are doing every night.

Just to throw a little salt in the wound, Ali fed him 43 ml at 3 p.m. We also learned he had 55 ml at 6 p.m. yesterday, 55 ml at 9 p.m., 50 ml at midnight, 15 ml at 9 a.m. I guess it's back to the drawing board for me. I'm going to do some visualization and some practicing during my free time and I'll be back tomorrow to improve on my total. :)

My mom brought Ava and Casey up to the hospital for about an hour in the afternoon. Ava read Brady a couple of books. She also enjoyed some snuggle time with him. We can't wait for the time when Casey can finally meet his little brother and take our first photo with our family together.

We brought Ava to a sleepover birthday party tonight. Ali, Casey and I went out to eat and saw the movie The Lorax (and Casey ate half a bag of cotton candy). It was great finish to wonderful day with our family. We're hoping that tomorrow is much of the same.

With love,

Tyler, Ali, Ava, Casey and Brady

Spring Break

Ava and I are both officially on spring break. As a teacher, I've always looked forward to spring break as a time to "recharge the batteries" for that final stretch of school. I've been fortunate to travel every year during spring break since I was young. Most of the time we've traveled to Florida or some other warm place.

When we found out Ali was pregnant, we knew our annual spring break vacation was in jeopardy. Our initial due date was March 8. We figured it would be hard to travel with a baby only a couple of weeks old. We could've never imagined at the time that we'd reach spring break without the ability to travel outside of a hospital room with our new baby.

Instead of swimming in a pool or walking the beach, we're looking forward to a spring break spent together as a family at the hospital and at home.

We continue to be blessed by the sacrifices our families have made to help us. My mom had her annual trip to Florida booked for this week but canceled it at the last minute when we realized Brady wasn't going to be home. Ali's mom and dad came home early from their Florida vacation once we knew our baby would be born before the due date. Now Ali's sister and brother-in-law have traveled to Vietnam for a week and Jerry and Rita are watching their three kids in addition to helping with ours.

Our parents have taken turns every day watching Ava and Casey so Ali can spend as much time at the hospital with Brady as possible. We're going to continue that juggling act until Brady comes home. We're so thankful for their generosity, and Ava and Casey have really adjusted well to their extra time with the grandparents.

Today was another day of growth for Brady. He gained 80 grams (2.8 ounces) from yesterday. If he keeps growing at this rate, he'll reach the 12 pound barrier soon.

His feedings continue to improve. His bottle feedings were 70 ml at 6 p.m., 50 ml at 9 p.m., 55 ml at 3 a.m., 40 ml at 6 a.m., and 52 ml at 9 a.m. Ali fed him 47 ml at noon and 62 ml at 3 p.m. Once again, this was a new record for Ali and Brady.

Ali said feeding Brady still isn't easy. The OT has been working with Ali and giving her techniques to help Brady. To help prevent reflux, they are having Brady sit up while eating. Ali needs to hold his head and his chin with one hand and the bottle with the other. Sometimes the feeding takes as long as an hour. When Brady's not hungry his tongue goes to roof of mouth. To get his tongue down, Ali strokes under his chin in a circular motion and the tongue eventually goes down.

The nurses today said they are very pleased with his progress. They think his feeding amount will continue to increase over the next few days.

Ali still had a little bit of blood coming from her incision today and still has some pain and discomfort. She has her next doctor's appointment on Tuesday. Please continue to keep Ali and Brady in your thoughts and prayers.

With love,

Tyler, Ali, Ava, Casey and Brady

Progress

The NICU is teaching us patience. In our first few days there, we were asking for estimates on when Brady would be home. One doctor responded, "Weeks". That really narrowed it down for us. :) Most of the time they told us that they really didn't know. They explained that every child is different and there are so many steps in the process.

Over time we've begun to understand what they were trying to say. Every day is a miracle for Brady. There is no timetable. We know Brady will come home when he's ready, and we're willing to wait as long as necessary. We've come to celebrate the small improvements and brush off the setbacks.

Today was another day to celebrate for Brady.

Brady took 52 ml at 6 p.m. yesterday, 25 ml at 9 p.m., 25 ml at midnight, 60 ml at 6 a.m., and 40 ml at 9 a.m. today.

Ali fed him 15 ml at noon and 53 ml at 3 p.m. That was his best afternoon feeding ever! Ali said it was the most relaxed he's been while he was eating.

He seems to be adjusting well to the thicker milk. They continue to keep his upper body elevated and use the Danny Sling. They also have started giving him a five day trial of Zantac to see if that helps with the reflux.

The last two days I arrived at the hospital around 4 p.m. and stayed for about an hour. Brady was asleep both of those days the entire time. I just placed him face down on my chest and snuggled with him.

Today when I arrived he was wide awake. It's such a blessing to interact with him. He's tracking well and really enjoys it when we talk to him. I still gave him his tummy time on my chest, but he was constantly lifting his head and squirming. He's turning into a strong little boy.

The nurses said he had gained 40 grams from yesterday (1.4 ounces). Once again, this is a good sign that he is getting more healthy and strong.

When the OT worked with him today, she placed him face down on his forearms and shins. Brady was holding his head up for an extended period of time. She commented that this was normal behavior for a three month old. The OT also mentioned that he was less stiff today and his joints had loosened up nicely. The ankle clonus also didn't show up at all today.

The nurses feel like he's making great strides. We can't wait to see him again tomorrow.

We know that Brady continues to be lifted up by your prayers. Please keep them coming. :)

With love,

Tyler, Ali, Ava, Casey and Brady

Day 22 of Life

When the doctors make their rounds in the NICU, they start by saying the baby's name and the number of days the baby has been alive. Today is "Day 22 of Life" for Brady Krebs.

Brady is now 11 pounds and 11 ounces and continues to grow. They have increased his feedings to 110 ml every three hours.

We have different nurses almost every day. Since they usually are dealing with preemies, the need to double or triple check the feeding amounts to make sure they're correct. Brady is still considered the bouncer on the NICU. :)

Brady seemed to rebound nicely from yesterday's setbacks. His bottle feedings during the night were back in the 40 ml range. Ali was able to feed him 37 ml at noon, which is the best he has ever done during the day.

The nurses today believe he was just adjusting to the thicker milk yesterday and that's why his feedings were down. They also think he was dealing with some reflux issues. They noticed him pulling away from his feedings and also thought he was having problems getting comfortable and sleeping.

When I arrived today Brady's bed was inclined at about 45 degrees. He also was in a "Danny Sling" including a strap around his abdomen which held his body in place. His body was wedged with rolled up towels on both sides. All of this was done to to hold him in place and help prevent reflux. Brady seemed to be in a pretty deep sleep, so it must've been working. :)

The OT today worked on having Brady sit up, gave him some tummy time to work on neck muscles and did some wrist stretches.

Our nurse tonight last saw Brady over the weekend. She thinks he's doing much better with his eating and body movements. Brady's coordination with his feedings is getting better. The nurses will also continue to work with his upper body and lower body to create the correct muscle tone.

After Brady's birth doctors and nurses were concerned about his blood pressure, kidneys, liver, blood sugars, brain activity, heartbeat, breathing, blood oxygen, and much more. 22 days later we are focusing mostly on eating and body movements. He's come a long way, and he continues to get better. We hope that tomorrow is another day of improvement. Thanks again for all of your support and prayers.

With love,

Tyler, Ali, Ava, Casey and Brady  

Three Weeks & Setbacks

It's hard to believe that it's been three weeks since Brady's birth. The past 21 days have flown by quickly. At the same time, it's too long to have a family divided.

When we were tucking Ava in to bed tonight she asked when Brady would be home. What do you say to her? It's hard to answer when we don't know and the doctors can't even make predictions. We understand that every baby is different, and we know that Brady is a unique case. We're just taking everything one day at a time.

Even if we did know, Ava doesn't completely understand the concept of time. We keep telling her that Brady is getting better, and he still needs to stay in the hospital until he is a little stronger. She told us she's looking forward to spring break so she can spend more time with him. She already has a special bond with her little brother.

Casey was looking at pictures of Brady today. He knows that Brady is his brother, but it's so strange to think that he's never met him.

Today was a step backward for Brady. His feedings at night have been consistently around 50 ml and were as high as 75 ml. Last night they were around 20 ml. Ali tried bottle feeding him at noon and he took 10 ml.

The OT said they will give him about two more weeks to get his full feedings from a bottle (100 ml every three hours). If he's unable to do that, the next process would be to insert a gastrostomy tube (G-tube) into his abdomen (this would replace the tube in his nose).

This is a surgery that would take less than an hour to complete. The G-tube would stay in his body for several months. We would continue trying to feed him by bottle and the G-tube would supplement what Brady was taking in by mouth.

The OT also said Brady has gotten tighter in his arms and legs. We hope this is just a temporary setback, and we hope he will continue progressing as time moves on.

Ali had her staples removed today. She is still very sore and it hasn't completely healed. She will go back in on Tuesday to have it checked again.

Brady has come so far, and we know these are just small bumps in the road. We continue to be inspired by his toughness and perseverance. Once again, we appreciate all of the messages and prayers for Brady and Ali.

With love,

Tyler, Ali, Ava, Casey and Brady

Swallow Test

I went back to school today and was able to stop up to the hospital for about an hour. Ali spent most of the day there with her sister.

Brady had his swallow test in the morning before they arrived at the hospital. They wheeled him down to an x-ray machine. The OT fed him with a bottle while the OT and radiologist looked at the results. The first 20 swallows were perfect. They turned off the x-ray machine and waited until he coughed. They then turned the machine back on and saw some milk going into his airway.

For some reason, Brady's epiglottis isn't working correctly all the time. This is part of the suck, swallow, breathe problem that is prevalent in the NICU. Milk aspiration can lead to all kinds of problems including pneumonia (which is especially hard on babies like Brady).

The solution is to add a substance to his milk to make it thicker (they say Brady's will be a consistency like a nectar gel). This will cause him to slow down when he's swallowing. We will feed him by bottle only with the thickener for around 6-8 weeks. Then they might do another swallow study to see how he is improving.

We were told that Brady had over 50ml by bottle at 9 p.m. and midnight yesterday. They said he slept through his 3 a.m. and 6 a.m. meals so they had to gavage feed him (through the tube in his nose).

Ali tried feeding him a bottle with the thickener at 3 p.m. Brady took 8 ml. It will be interesting to see how the thickener will impact the amount he eats during the day. The nurses told us that he might become more alert over the next couple days as his eating becomes easier with the thickener.

Ali goes back to the doctor tomorrow to get her staples removed again and check on the healing of her wound. Please keep both Ali and Brady in your thoughts and prayers.

With love,

Tyler, Ali, Ava, Casey and Brady

Priorities

Ever since I was in elementary school I've loved March Madness. I've always enjoyed filling out brackets, watching as many games as possible, and staying up late after the championship to see "One Shining Moment". I never filled out a bracket and I haven't watched one second of the tournament this year.

It was a record breaking weekend for weather in Minneapolis with high temperatures reaching 80 degrees for the first time ever on St. Patrick's Day. Ali and I spent the entire weekend inside a hospital room.

And neither of us would have wanted it any other way.

Brady's time in the hospital has forced us to focus on what's really important in our lives. We're taking turns holding Brady and telling him how much we love him. We're leaning heavily on family and friends. We're praying several times each day. We're talking constantly to nurses and doctors to learn more about Brady's growth. We're cherishing the time we have to play with Ava and Casey, read to them, and tuck them into bed.

We're not watching any television. Our DVR is full of shows we've taped over the past three weeks but haven't seen. We're spending more time as a family talking, laughing, crying, and being there for one another.

It has now been 19 days that our schedules and routines have been completely turned upside down. We're so fortunate to have two sets of grandparents taking turns watching Ava and Casey. For everything that's happened, we feel like we've been able to create a sense of normalcy and new routines for our family and we're very grateful for that.

Ali and I spent most of the morning and afternoon with Brady. Today was very similar to yesterday. We learned that Brady took 75 ml at his 9 p.m. feeding last night (a new record). He also had 40 ml at midnight and 50 ml at 6 a.m. He slept through the 3 a.m. feeding. We hope that becomes routine before he comes home. :) He seems to be getting stronger and is really eating well at night.

He was wide awake for us to nurse at noon, but he only took 2 ml. We have been told that it is common for babies like Brady to take a longer time learning to breastfeed. We'll keep trying every day and hope that he continues to improve. Brady will have a swallow test tomorrow morning to make sure there aren't any other issues preventing him from eating well.

My parents brought Ava and Casey up to the hospital for about an hour this afternoon. Casey played in a family meeting room while Ava spent some quality time with Brady. She was even more comfortable holding him today.

Ali and I took turns giving Brady some tummy time this afternoon. We reclined in a chair and placed him face down on our chests. His neck is getting stronger and he fell asleep for long periods of time.

The two nurses in our room today have both worked for over 30 years. We were listening to them reminisce about how much the NICU has changed over time. They said nurses and doctors used to smoke in the NICU (near oxygen tanks and babies with breathing problems). They also talked about how much ventilators have improved. When they first started they needed to bag babies (using hand-held ventilators) for two days or more taking turns when their hands got tired. They talked about how fortunate Brady is to have all of the new technology today (especially new ventilators and the cooling blanket).

Ava and I go back to school tomorrow and have one full week before spring break. We're holding out hope that we could spend spring break together playing outside as a family of five.

Maybe Brady and I can watch the Final Four together in our family room at home.

With love,

Tyler, Ali, Ava, Casey and Brady    

The Big Sister

Ava was so excited to have a new brother or sister (we didn't know which before the birth). Ali and Ava shopped together for clothes and toys for the baby. Ava asked a lot of questions about what the baby would eat, how they would be able to play together, if the baby would pull her hair, and if the baby would drool on her.

We're not sure exactly what Casey understood. He oftentimes went to the appointments with us and called himself a doctor. He heard the noise of the heartbeat during one appointment and heard a similar noise when they were taking Ali's blood pressure. He later told Ali, "Mommy, I love the baby in your tummy. And I love the baby in your arm too." Casey also went into some of our ultrasounds and often asked about the "orange baby" due to the color of the ultrasound pictures.

Brady has been in the NICU for 18 days and Ava has always been afraid to see him (children under 5 aren't able to visit the NICU right now, so Casey will need to wait until Brady comes home). A few days after Brady's birth, we tried to bring Ava into the NICU unit. She kept her eyes closed and said she was afraid of the bright lights, machines and loud noises.

As the lights, machines and noises have disappeared over time, we've tried many different techniques to get Ava comfortable with the NICU. We've placed her photo in Brady's crib and decorated his room with Ava's drawings. We've also shown her pictures and video of Brady almost daily to prove to her that it's not so scary anymore. We ask Ava every day to visit Brady and she keeps telling us she isn't ready. It breaks our hearts that a girl who was so excited to meet her brother is still afraid to do so.

This morning I sat down on the stairs and showed Ava and Casey some video I shot of Brady with my phone yesterday. I was holding Brady's head at arms-length with my left hand and shooting video with my right hand. Brady made a funny face, a strange noise, and spit up all over my clothes. Ava and Casey laughed hysterically. They made me play the video over and over again. After the fifth showing Ava said, "I want to see Brady today". I don't know if it was the humor or something else that no longer made the NICU seem so scary to her, but we were excited to introduce Ava to her brother today.

Ava was pretty tentative at first. Ali held Brady in a chair and Ava only wanted to sit in a chair next to him. Over time she began to stroke his hair and kiss his check. She read him a book and gave him some toys to hold. Eventually, Ava sat down in the same chair with me and Brady. A few minutes later she was holding Brady on her own with the biggest smile on her face.

Grandpa and Grandma Vollmer and Grandpa and Grandma Krebs also took turns holding Brady today. 18 days is a long time to wait to hold your brother or your grandchild for the first time, so today was a very special day.

It was also a special day for several other reasons.

We mentioned that when we left yesterday Brady was at 15.5 hours without breathing assistance and counting. Well, we're still counting. In fact, they also completely removed the pulse oximeter (testing the oxygen levels in his blood through a laser in his foot). They are very confident that Brady will continue to breathe on his own from now on.

We also learned that Brady had three bottle feedings last night over 50ml (at 9 p.m., 12 a.m., and 3 a.m.). The most he's ever had before was one. He's wide awake and feeding like crazy when while we're home in the middle of the night. He usually sleeps during the day and drinks small amounts (5ml nursing at 3 p.m.) while we're at the hospital with him. We hope we don't have a permanent night owl on our hands. :)

Ali gave Brady a full bath today in a larger tub we brought from home. Before we did this, the nurse removed the feeding tube that ran from his nose into his stomach. We also removed the three heart leads on his chest. This was the first time since minutes after his birth that Brady was completely free of all wires.

After the bath the nurse ran the feeding tube back down his nose and into his stomach. I've told you that we've been waiting for that lusty cry that babies make when they're truly angry. Well, we heard it for the first time (and I don't blame him...I would've made the same noise). It was so refreshing to hear a "normal" baby cry. Once the tube was all the way down, he calmed down immediately and turned back into that sweet baby we've gotten to know so well.

One of the doctors stopped by to talk to us before we left. He said they are very pleased by Brady's muscle tone, the strength of his neck, and how he is progressing. Our nurse at the time said she gets goosebumps whenever she thinks about how far Brady has come.

Brady is a miracle baby. He's defying all odds. He's getting stronger every day, and we're moving closer to the day when he can meet his big brother and come home to his family. We can't thank you enough for all of the words of encouragement and prayers for healing.
And Ava can't wait to hold her baby brother again tomorrow.

With love,

Tyler, Ali, Ava, Casey and Brady

OT Feedback

                I didn't have school today because we had conferences on Wednesday night and all day Thursday. Ali and I arrived at the hospital around 10:30 a.m. and Brady was without his breathing tube. They took it off at 2:00 a.m. Ali and I left the hospital around 5:30 p.m. and the tube was still off, so he was at 15.5 hours and counting. :)

Ali tried to feed him around noon but he was completely zonked. We went to grab some lunch and when we came back he was awake for the next 5 hours or so. Ali was able to feed him about 5 ml. Ali and I took turns holding him and talking to him with his eyes wide open.

Brady will go through swallow testing on Monday. They will x-ray him as he is being fed to make sure the milk is following the proper path to the stomach. Brady has gagged a couple of times and also spit up while eating. There's a possibility that a small amount of milk is getting into his lungs. If that continues to happen there is a chance for complications like pneumonia. We'll know more after the results on Monday.

The OT came around 3:00 and that was the first time I was there when Brady went through therapy. She did a lot of movement of his limbs to work on joints and muscle tone. She checked reflexes in his abdomen. She massaged the jaw, mouth and tongue to help him become a better eater.

I asked her to explain to me what would be considered abnormal or concerning during her treatment of Brady. Stiff and rigid muscles, known as hypertonia, and exaggerated reflexes are signs of spasticity, a symptom of cerebral palsy. It's hard to tell if Brady muscles are too stiff or if has exaggerated reflexes right now. Her therapy is designed to be proactive and preventative.

Ankle clonus is also a sign of cerebral palsy. She performed tests on him to check for ankle clonus. She took his foot and bent it backwards, toes toward his shin (dorsiflexion). She then released the foot and observed the ankle reaction. If ankle clonus is present the foot will repeat the motion on its own, at a spastic rate. Ankle clonus can be measured by the length of time it occurs, then classified by the duration of activity; none, mild, moderate, or severe. For instance, a mild rating would be less than 3 seconds, moderate between 3 and 10 seconds, and severe more than 10 seconds. A "normal" baby would have no movement at all. Brady's movement was less than 3 seconds. His foot moved about 3 times very quickly. Our OT told us that it was 5 times yesterday, so it seems to be improving. She said that in severe cases a foot will move 25 times or more and will not improve through treatment.

The fact that Brady tucks his thumb into his hand is also concerning. There is something called thumb-in-palm deformity in cerebral palsy. Since the thumb is the most complex finger, it takes a very coordinated effort by the brain to move it. Brady is wearing splints to keep the thumb from being rigid and tucked into his palm when he makes a fist. The splints seem to be working well over time.

The OT told us that she will do a comprehensive evaluation at Brady's four month check up. We'll have a much better idea then about any long-term concerns. We've been told that Minnesota has a fantastic program for preventative care for people like Brady. Even after we are discharged to the hospital, therapists will come to our house to work with Brady and also teach us techniques to use. The fact that they're already doing daily treatments on him is such a blessing for us.

Ali also had a big day today. Her wound seems to be healing well from the inside. We went to a doctor today and she stapled Ali's opening. We're hoping that the third time's the charm. :)

We're keeping our fingers crossed that Brady's tube is still off when we visit tomorrow. We're also hoping that Ali's wound heals quickly and completely. Please continue to keep both of them in your thoughts and prayers.

With love,

Tyler, Ali, Ava, Casey and Brady

The Great Unknown

Today was much of the same for Brady. He still is on minimal breathing assistance. We've come to believe that some nurses are bigger risk takers than others (and this often comes with experience). Brady's core nurse, Kathy, was the first to remove his oxygen tubes for extended periods of time. She was much more comfortable with his rates fluctuating. Even though Brady's levels have been very similar to when Kathy was here, the nurses over the past few days have felt more comfortable leaving the tube in. We're completely fine with whatever they decide...and we're trying hard not to consider it a setback when he needs that extra assistance. We keep hearing that the meconium in his lungs from birth could be preventing him from progressing as quickly as we would hope with his breathing.

Ali nursed him today for his 11:00 a.m. and 2:00 p.m. feedings. The doctor once again told us that his best feeding was by bottle at 2:00 a.m. He is still learning how to coordinate his breathing and eating, and this should become easier once he's breathing completely on his own.

Ali was there when the OT visited today. She performed many of the same exercises from yesterday and also spent time checking reflexes all over his body.

We had a conversation with one of the doctors and the question we always ask is whether or not Brady's progress is "normal". We keep hearing that they're very pleased with his healing, but there is no way to predict any long-term problems. The most frustrating part for us as parents is the waiting and the unknown. And we're hoping that the great unknown won't weigh heavy on our hearts over time.

I had a brief conversation with the social worker for the NICU. She's the one who helps coordinate all assistance for Brady and our family. She said that Brady is a "unique patient". Almost all other babies who have gone through similar trauma during birth needed much more assistance and therapy at this point.

We're holding out hope that our miracle baby will continue being a "unique patient". Once again, thanks for all of your messages and prayers for healing and strength.

With love,

Tyler, Ali, Ava, Casey and Brady

Filling in the Gaps

Ali was able to spend about three hours with Brady today and I was able to get up there for an hour before conferences. Not much had changed from yesterday. Brady had a 40 ml bottle feeding at 2 a.m. It seems like he is consistently the most hungry and awake at that time. We're hoping to change that to 2 p.m. by the time he gets home. :)

Ali was there when the OT visited today. The OT showed Ali several movements that we can do with him on our own with Brady's hips, knees, ankles, shoulders, wrists and mouth. The OT said his muscles were tightest on the left side of his upper body.

Ali nursed him for his 2:00 feeding and spent the rest of the time cuddling with him. While there weren't any significant improvements, we've learned that we need to be patient as Brady continues to learn how to breathe and eat on his own.

**************************************

Because of Ali's diabetes, we had a biophysical ultrasound and follow up appointment every Tuesday and Friday since before Christmas. In fact, Brady failed his first BPP on 12/23 and returned on Christmas Eve for the retest. If he would've failed that retest, we would've needed to return to the hospital on Christmas Day for another retest. Luckily for us he passed the test on Christmas Eve (and every other BPP test until the one on his birthday).

Because of other complications Ali was having during pregnancy, we visited the OB office on several other occasions in addition to the biophysicals. The doctors said Ali had one of the thickest files they have ever seen.

Since we were there so often, we formed a special bond with the doctors and nurses in the office. Casey and I also went to almost every appointment, and Casey always looked forward to getting a sticker from the nurses in the lab.

We saw three doctors for most of our appointments (Dr. Swigert, Dr. O'Halloran and Dr. Meschke). On our 2/28 appointment, Dr. Meschke visited us with results of the BPP. She told us that the baby wasn't doing well and needed to come out within the next few hours. She informed us that she was finished working for the day, but Dr. O'Halloran was the doctor on call that night. We felt relieved that one of our regular doctors would be there for the delivery.

Instead of going home at the end of her shift, Dr. Meschke ended up staying late and worked side-by-side with Dr. O'Halloran to deliver the baby. Since the birth, Dr. Meschke has called Ali almost daily to answer any questions and walk Ali through the healing process. She's gone above and beyond what a doctor is required to do.

This morning Ali visited Dr. Meschke for a follow up appointment at the Ridges. The doctor said that Ali's wound is healing well. She also gave Ali a bracelet that says, "Expect Miracles". Her three children were all in the NICU and she handed out those bracelets to family and friends.

The doctor was also able to answer some of the questions we had about those frantic minutes after Brady's birth. At 30 seconds after his birth, the nurses started cleaning him. They noticed that he wasn't being stimulated (no crying and no movement). They checked for a pulse and couldn't find one. At 45 seconds after birth they called for two Code Blues (one infant and one generic). They wanted as many people as possible there to help.

At one minute and 30 seconds of life they began bagging him (oxygen) and started chest compressions. At two to three minutes of life they intubated him twice. The first time the tube didn't fit. The second time he bit the nurse. This was the first positive sign that we had a little fighter on our hands.

At three minutes they put a pulse proximitor on his toe. At four minutes of age a recorder arrived and started writing down details. We're still trying to get those records to see if there is an exact time of his first breath or heartbeat.

Dr. Meschke is convinced that if Brady's BPP was on Wednesday instead of Tuesday that he wouldn't be with us today. We were that close to losing our child.

The doctor told Ali that she was amazed at how that team of nurses worked together to bring our son back to life. They were organized, calm, and precise.

**************************************

From the moment of his birth until now, our son has received care from doctors and nurses around the clock. The shifts change every 8 or 10 hours but the attention to detail is always the same.

We're now going to bed about 30 miles away from our son. While we're sleeping, a person we barely know will be devoting all of his or her energy checking Brady's vitals, feeding him meals, and caring for him. We feel so very blessed.

With love,

Tyler, Ali, Ava, Casey and Brady

Two Weeks

This week is an extremely busy one for me. Today I woke up at 5:30 to pack Ali's wound, spent a full day teaching, went to track practice, drove up to see Ali and Brady, drove back from Minneapolis in rush hour traffic, ate a 15 minute meal with Ali at Subway, went to football booster club meeting, and drove home in time to tuck in Ava and Casey at 8:30 p.m. Tomorrow it's the same schedule minus the booster meeting but adding conferences from 5 p.m. - 8:30 p.m. Thursday we have conferences from 7:30 a.m. - 7:30 p.m. It's going to be hard to squeeze in a visit to Brady the next two days, but I'm determined to make it happen.

Needless to say, we continue to lean heavily on our family to shuttle around Ali and take care of our kids, and we're so thankful for everything they're doing for us.

A quick progress report for today...He was off the nasal cannula for 8 hours last night (from midnight to 8 a.m.). If he's still not breathing completely on his own by the end of this week, they might do another chest x-ray on Friday to check on the progress of his lungs. He took 20 ml by bottle last night. Ali once again nursed Brady for his 2:00 and 5:00 feedings.

The highlight of today was Ali giving Brady a full bath before we left. Since most of the babies in the NICU are premature, they usually use a small storage tub about 12"x12"x6". Brady displaced the water all over his crib. Because of his size, we needed to use the utility sink to rinse out his hair (like they would in a hair salon). Ali loved combing and styling his fluffy hair after the bath. The recommended that we bring our own tub from home for next time. :)

Because of my schedule, I was only able to be with Brady for about an hour today. It's hard to believe that he's been in the hospital for two weeks. I couldn't help thinking that it's taken Brady all of this time and he still isn't as independent as Ava and Casey were immediately after their births.

At the same time, he continues to amaze us with his resiliency and growth. In his short life he's already experienced resuscitation, an ambulance ride, therapeutic hypothermia (whole body cooling), respirators, extubation, a CPAP, high flow and low flow nasal cannulas, multiple blood transfusions, a catheter, hypertension (high blood pressure), hyperglycemia and hypoglycemia (blood sugar levels), kidney and liver problems, a possible seizure, etc. He's overcome a lifetime's worth of adversity in 14 days. We're so proud of our little boy, and we're so thankful for all of the talented doctors and nurses who are working tirelessly to get Brady home to his family.

We continue to feel uplifted by the words of encouragement and prayers from our family and friends. We feel very blessed to have all of you in our lives.

With love,

Tyler, Ali, Ava, Casey and Brady

Still Healing

Ali and I went to have her incision checked this afternoon. There is still a small area that hasn't completely healed and continues to leak fluid and blood. It's in almost the same location as last time. The doctor removed all of the staples and used Steri-strips to seal the wound. She cleaned the opening and told us that we will need to use the same technique as last time to help it heal. So, I guess I'm back in the business of changing gauze twice daily for Ali until our next appointment on Friday. The good part is that the wound is now only 2 inches long compared to the 12 inches before. A part of me thinks that Ali is doing this on purpose as sympathy for Brady's healing. The race is on to see who gets out of the hospital fully healed first. :)

Ali attempted breast feeding for the first time today. Brady was able to drink 9 ml the first time and 8 ml three hours later. The goal is to get him to 100 ml feedings.

There is a feeding tube that runs through Brady's nose and into his stomach. In order to test how much he ate the first time, they drew the milk from his stomach back into a syringe. After measuring it, they sent it back into his stomach (along with 91 other ml to complete the meal). For the second feeding the weighed him before and after eating.

The nurses told us that he had a 40 ml bottle feeding at 2 a.m. this morning. Once again, this is great progress from yesterday.

The OT continues to work with him every morning. We heard that Brady had some tummy time this morning. We hope to hear more from the neurologist in the next couple of days. Brady was once again removed from the oxygen assistance for several hours this afternoon. We hope that he can make a permanent transition sometime soon.

Probably the most rewarding part of today was seeing Brady's personality come out. He was awake for long periods of time, and we enjoyed talking to him and playing with him. He also got extremely angry at times and had some very normal baby cries.

It's hard to say goodbye to him every evening. Ali and I always say prayers with him and give him a kiss goodnight. We then do the same with Ava and Casey a couple hours later at our house.

We painted and decorated Brady's bedroom in the weeks before his birth. It's been strange to walk past it for the past 13 days and not hear any baby noises. Brady continues to heal and grow, and we know he'll be sleeping in his crib at home sometime soon. As always, thanks for all of your messages and prayers.

With love,

Tyler, Ali, Ava, Casey and Brady

Going Tubeless

Ali and I arrived at the hospital at 11:30 to some pleasant surprises. Brady was free from any breathing assistance. He also was drinking from a bottle with our nurse, Kathy.

He spent four hours with us not wearing his nasal cannula. Kathy decided to eventually put it back on, but she was very impressed with his progress.

They are trying to feed him 100 ml every three hours. They start first with a bottle and the goal is 25 ml for now. The rest of the 100 ml goes through the tube in his nose. He only drank 15 ml from the bottle when we were with him today, but I guess he drank the entire 25 ml during one feeding in the night. Once again, this is good progress from yesterday.

We're hopeful that Ali will try nursing a little bit tomorrow and see how he does.

Brady also had his loudest cries while we were there. After raising two babies, it's hard to imagine being excited about hearing a loud cry. To us it's just another sign that he's acting like a normal baby. Ask us again in a couple of months and we might have a different opinion about his crying getting stronger. :)

He's now keeping his eyes open for about an hour at a time. He seems to be tracking really well and it's fun to interact with him.

Ali goes back to the doctor tomorrow to check her incision. Right now there is still a small amount of blood coming from the wound. We're hopeful that tomorrow is another day of progress for Brady and Ali. Please keep both of them in your thoughts and prayers.

With love,

Tyler, Ali, Ava, Casey and Brady

The Waiting Game

It was fun to wake up in our house and spend the morning with Ali, Ava and Casey. I snuggled in bed with Casey for about an hour, and we all ate breakfast and lunch together. Our normal routines have really been thrown for a loop, and we're so proud of how Ava and Casey have handled all of the changes. We're very fortunate to have our family nearby and that our kids are totally comfortable spending entire days (and sometimes nights) with both sets of grandparents and their cousins.

Jerry and Rita watched the kids today this afternoon while Ali and I visited Brady. When we got there, he was sitting in a bouncy chair and dressed in a new outfit. In talking to the nurses, it sounds like there wasn't much change from our last visit. His oxygen levels are the same as yesterday. He drank 3 ml from a bottle this morning (compared to 7 ml yesterday).

Ali and I were both able to hold him for a while. Once again, he opened his eyes for long periods of time. He had a few briefs cries, but we're still waiting for him to sound like our other two kids did at this age. Brady did a good job of sucking on his pacifier today when we held him. In addition to the milk coming through the tube in his nose, the nurse also fed him a small amount through a syringe in his mouth. She did this while he was sucking on a pacifier to get him used to that sensation. We've learned that the hardest thing for NICU babies to learn is how to coordinate the suck-swallow-breathe process. Brady needs to be able to breathe on his own before we can make major strides in his feeding. And he needs to do both on his own before he can come home.

While it's frustrating that there wasn't any "major progress" with Brady today, we've learned that patience is so important for NICU families. Our primary nurse has worked at the U of M NICU since the early 70's. She told me that some babies have stayed in the unit for as long as 18 months. I can't imagine what type of strain that would put on a family.

To think of how far he's come in 10 days, we're happy to wait as long as it takes. He's in great hands with the doctors and nurses there.

We keep asking Ava to join us up there. We show her pictures and video of Brady on a daily basis to get her comfortable with her new brother and his surroundings at the NICU. She still is scared to visit, and we don't want to push her until she's ready. Ava was so excited to see and hold her baby brother and it breaks our hearts that she still hasn't met him. Casey also is starting to understand that we have a new addition to the family, and we're interested to see how things will change with him now as a middle child.

We'll keep visiting Brady for as long as it takes. We can't wait to get him home and get our family of five together for the first time.

With love,

Tyler, Ali, Ava, Casey and Brady

A Bunch of Fun Changes

My mom watched both kids today and Jerry and Rita brought Ali to the hospital. Brady had a bunch of fun changes today.

They took one final blood draw from the line in his belly button. His liver numbers are still a little elevated, but they're comfortable enough with the results that they won't need any more blood work from that location. They removed that line and now Brady is able to wear clothes.

Ali was excited to dress Brady. Since he's already outgrown all of our newborn clothes, Ali had picked out the perfect 3 month outfit for Brady to wear.

Brady also moved from a high flow nasal cannula to a low flow one. He now is needing less and less assistance to breathe. Our atmosphere contains 21 percent oxygen and Brady right now needs 30 percent in very small amounts (.5 l).

It's been fun to watch all of the machines being rolled away as he's needed less and less assistance. Gone are the monitors for brain waves (seizures) and blood pressure. They now are only monitoring his heart beat and blood oxygen levels.

His body also isn't connected to as many wires and tubes. Gone are the ventilator, CPAP, catheter, blood draw tubes from his hand and belly button, etc. All Brady has on his body now are three heart montiors (two on chest on one on a leg), the breathing cannula in his nose, the feeding tube in his nose, and a pulse oximetry, which measures how much oxygen is in the blood using a small light sensor that's taped on the bottom of his foot. It's much easier to move him and hold him without all of the wires around.

Brady was also moved into a more traditional crib setting to start getting him ready for life outside the NICU. The OT visited early this morning and placed Brady in a bouncy chair and allowed him to look out the window.

Today was also the first day that the OT tried feeding him with a bottle. It took Brady about 25 minutes to drink 7 ml. He is also at capacity (100 ml) for his feedings through the tube in his nose.

Brady is now opening his eyes more. The OT is working with him on tracking. The splints on his hands seem to be working very well.

They are moving Brady from phenobarbital to keppra for his anti-seizure medicine. It has less side effects and is the medicine babies use once they leave the NICU. Brady will probably still use it for a couple of months after he leaves. We noticed that Brady had some tremoring with his jaw today. Again, we hope it is just the medications and not something more serious.

Ali spent most of the day holding him and I had the chance to hold him for about an hour after work. Overall, it was a day filled with good news of Brady's progress. It was just what we needed.

I was visited at school today by the Sherwin family who brought an amazing collection of toys, food, and gift cards from the staff at Eastview. We have now received three fruit baskets at home and even had one delivered from the Burnsville football program to the NICU nurses (which was a fantastic idea). One of my students drove up to the hospital and delivered cookies, bread and other gifts.

Ali and I have been overwhelmed with the offers of meals, watching our kids, etc. It's been fun to read messages, prayers and words of encouragement from friends and family members we wish we could see more often. Times of adversity bring out the best in people and bring us closer together. We hope that we'll be able to repay the favor to all of you someday. Thanks again for everything!

With love,

Tyler, Ali, Ava, Casey and Brady

Tough As Nails

My wife is as tough as nails. I remember being in awe of her strength during Ava and Casey's births. I watch her prick her fingers several times a day and insert needles into her body and she hardly makes a face. People who are around her when she exercises tell me that they are amazed by her determination and work ethic.

This pregnancy was hard on her body. Brady was a large baby and the diabetes also led to large amounts of amniotic fluid in the womb. Ali had a hard time getting comfortable during the last few weeks and had a string of annoying health issues over the entire pregnancy.

We had planned on having the C-section on Friday, March 2. We were looking forward to Ali staying off her feet while the rest of the family took care of her and the baby. I know that she was looking forward to being pampered after a grueling pregnancy and surgery. The circumstances of Brady's birth changed all of that.

When Brady was moved to a different hospital, it was such a surreal experience. It was so strange that first night to be sleeping in the hospital without the sound of a crying baby being wheeled into the room. Ali was pumping milk every three hours and there was no baby to feed. Our family came to visit us at the hospital and we didn't have a baby to show them.

We sat around the hospital room waiting for a phone call from the NICU with any updates on how our baby was doing. Was he going to live? What were they doing to him? Ali had seen Brady for less than a minute in the first 24 hours he was alive. We desperately wanted to be near our baby.

We had a couple of options. Ali could be discharged from the hospital the day after major surgery and we would need to care for her the rest of the way. We didn't feel comfortable with that. Our doctors were also making phone calls to see if we could be transferred to the same hospital as Brady. They found a doctor who would take her into her care and we are forever grateful for that.

We then had a couple of options on how to get Ali to the U of M. Since it wasn't an emergency transfer, we would need to pay our own way. If we wanted to keep Ali lying down, we would need to go by ambulance. This would cost us between $5,000 and $10,000. If Ali could recover enough to sit in a wheelchair, we could take a hospital van for $120. It seemed like a pretty easy decision. Ali immediately went to work on getting out of bed, sitting in a chair, and going to the bathroom enough to transfer by van.

About 24 hours after the C-section, we were in a new hospital. We were able to stay in a room on the same floor as the NICU. We had a wheelchair to keep Ali off her feet, but she was moving way more than she should because she wanted to care for her son. She had waited for an entire day to be a mom.

Being diabetic and being way too active prevented Ali's incision from healing completely. Ali had her C-section on Tuesday, 2/28 and had her incision reopened on Monday, 3/5.

She walked around for the last three days with an open gash the length of her torso. She never once complained about the pain, although I did see her grimace every time she got up from a chair or bed and needed to use the muscles around the wound.

The doctor today examined the wound and found that it was free from infection. She said that it was healing very well from the inside. She pulled out a long needle and began pricking the skin all around the wound. This was the only pain medication she would use before she stapled it shut.

The procedure went extremely well. Ali stopped her once and asked for more shots to dull the pain, but she never made another sound. The doctor is hopeful that the skin will heal entirely this time. We go back in on Monday to have it checked, and then they will schedule another appointment to have the staples removed within 7-10 days.

Ali never looked at the wound over the past three days. I took a before and after picture of the procedure. Ali saw the picture and we had a conversation about whether or not to share it with all of you. We decided to post the pictures and let you decide whether or not to look. I consider the picture a badge of honor for my wife. I can't find the words to describe the toughness she showed these past three days, but they say a picture says a thousand words.

If you do look at the picture, you'll see why we don't want the wound to reopen. Please continue to keep Ali in your thoughts and prayers as she continues to heal.

After the procedure, we wheeled back to the NICU to spend time with our son. Brady had another great day. He's starting to open his eyes more and more. His tests all came back today with good news. They are continuing to add to his food intake (he will reach the maximum tomorrow) and he's now filling those diapers like healthy babies do.

The will remove the line in his belly tomorrow (used to draw blood for testing), and he will now be able to wear clothes. I know that Ali is excited to dress her baby.

My mom and dad visited today and they were amazed at how much he has changed. He looks and acts like a baby now. Ali's sister was there all day with Ali and was excited to have the opportunity to hold him at the end of the day. I also held him today and I feel asleep briefly. Brady has that magical power to make you forget all of the stresses of the world.

They hope to have him off the breathing assistance completely in the next couple of days. Once his breathing is good, the last step is eating. This can take a week (or more or less).

They also moved him into a different wing of the NICU. This is partly because he is so stable and partly to help accommodate a baby with more pressing needs. His new bed is situated next to a large window, and Brady is seeing the outside world with open eyes for the first time.

Today was a great day for Ali and Brady. I'm so proud of their strength, resiliency, and toughness. And we want to thank all of you for your words of support, encouragement and love. Every message and prayer makes us feel more uplifted and empowered. Please keep them coming. :)

With love,

Tyler, Ali, Ava, Casey and Brady               

The Master Plan

Trying to juggle a baby in the NICU, a wife recovering from surgery, and two kids at home is a daunting task. We went to bed last night with a great plan in hopes of having another fantastic day like yesterday.

Here was the master plan...Our house was going to be Grand Central. Rita was going to come over at 8:00 to help get Ava ready for school (bus comes at 9:00) and Casey dressed and fed. She was going to go to Bible study at Hosanna! at 9:30. Amy was coming over at 9:00 after getting her kids off to school and bringing Cole (her 2 year old). Rita was going to take Cole to Bible study with her and drop him off at the child care center there. She was then going to bring Cole back to her house and have Jerry watch him while she went to a hair appointment. My mom was coming over at 9:15 to watch Casey. She was going to bring Casey up to my cousin Emily's house and Emily was going to watch him while she visited Brady in the hospital. Amy was going to drive Ali to the hospital at 9:00 and come back at 3:00 to get her kids off the bus. I was going to teach, stop by the weight room, and be up to the hospital by 3:30. Ali and I would then be together with Brady for a couple of hours and I would drive her home to eat with Ava and Casey. Got all of that? Ready. Break.

Ali woke up at 5:30 a.m. to pump milk. I changed her gauze pad (I'm thankful that I only have two of these left) and went to work.
I went to school and taught first hour. I felt my phone buzz while I was teaching, but I didn't look at it. In between 1st and 2nd hour, I read this text from Ali:

7:26 Dr. Darnell called and I have a bladder infection from Strep B. So she called in an antibiotic to CVS. I have to take it for three days. She said I shouldn't be taking the meds while breast feeding, so I should pump and dump for the next three days. What a mess...

I started teaching second hour and my phone buzzed again. At the end of second hour, I read this text from Ali:

8:19 Ava just threw up

So much for the master plan.

Rita started cleaning the house and taking care of Ava...my mom showed up and took Casey back to her house...Ali and Amy and Cole went to the hospital...Rita took Ava back to her house.

Since 2 year olds aren't allowed in the NICU, Ali and Cole sat in a closet together while Ali pumped one last time before medications forced her to dump her milk. Amy went up to check on Brady. While Ali was still pumping, Amy came back and told her to hurry because the neurologist and occupational therapist were working on Brady.

The OT was doing an evaluation of Brady. We have noticed that Brady likes to tuck his thumbs and form fists. They are putting Brady's hands in splints every three hours to force his thumbs out. We've learned this is common practice for babies in the NICU.

The OT said Brady's upper body is stronger than his lower body. She was working on reflexes and resistance with his limbs. She had him sitting up and also checked his mouth and tongue. An OT will visit Brady every day and we will also learn exercises to help him recover. Once again, these are all common practices for babies in the NICU.

The doctors and nurses were also making rounds during this time and gave an update on Brady's progress. His chest X-ray was clear. They gave him a lasix diuretic to help remove his swelling. They are continuing to increase his feeding amounts. Everything is looking very good.

The biggest change from yesterday was that they moved his feeding tube from his mouth to his nose. They have now started giving him small amounts of milk in his mouth to train him how to eat. It's common for NICU babies to have a hard time eating initially because they spend so much time with ventilation tubes in their mouth and throat. Brady seems to like the milk and is already sucking well on his pacifier.

Ali spent most of the afternoon snuggling with Brady in a chair and pumping and dumping. I finally made it up there around 3:00 and found them both sleeping in the chair. It was very cute. Both of them are completely exhausted from the events of the past week. I'm still not sure which one has endured more. Brady and I then had some Kangaroo time and I couldn't stop staring at him. It's still amazing to see how much he has changed from two days ago.

Around 5:00 we placed Brady back into his bed. As I was talking to him, he opened his eyes about halfway. He kept them open for about five seconds. He closed them. Then he opened them again for five seconds. It was the highlight of my day.

Tomorrow is a big day for Ali. She'll have stitches for her incision at 2:30. Her stitching will take place in a building a short walk from the NICU. Ali plans to spend as much time as possible with Brady before and after the procedure.

We've learned that it is common for diabetic mothers to heal more slowly and sometimes need to be restitched a handful of times. We are hoping and praying that the incision heals completely this time.

Today was filled with a lot of stress and anxiety. We're hopeful that tomorrow is a day of healing and peace. That's the master plan for now. :)

With love,

Tyler, Ali, Ava, Casey and Brady 

The Day of Change

Today was a day of big change. I went back to work at Burnsville High School. It was great to be back in the classroom doing something I love. It was definitely different to be separated from Ali and Brady. Ali and I were talking that the past week really has brought us closer together. Sometimes you get stuck in routines and it's a blessing to have something happen to remove all of the distractions in your life. We've had a lot of quality time together over the past week to talk about our family and our love for each other.

We're trying to make a concentrated effort to keep Ali off her feet and let her heal. I survived my first two gauze changes on Ali's abdomen last night and this morning before work. Grandma Rita came over early in the morning to help get Ava off to school and spent the entire day with Casey (someone should create an award for that accomplishment). Ava also was eager to help her mom in any way possible. She offered to make breakfast in bed, helped Casey get dressed, and stayed quiet while her mom rested (which is a big deal for her).

Ali's sister drove Ali to the hospital and they spent the entire afternoon with Brady. Ali and Amy have a special bond and Ali was thrilled to have someone pamper her during the day.

Ali sent me pictures throughout the day and I was amazed at how different Brady looks today. They removed the CPAP machine this morning and he now has a nasal cannula. The CPAP machine forced his nose up like a pig's snout and bloated and distorted his face. The swelling has really reduced from his face and his features are becoming more defined. There was a brief moment after Brady's resuscitation where they whisked him past Ali and me. Brady's eyes were open and his face was beautiful and peaceful. Today is the first day that he looks like that baby we met exactly one week ago today.

They will continue to reduce the amount of breathing support as he grows stronger. They are also increasing his milk feedings 5 ml every other time. He will have an x-ray of his lungs tomorrow and a recheck of his liver and kidneys on Thursday. They are still monitoring his seizure medication. It's obvious to us that his body is healing and he is getting stronger every day.

Ali spent the entire morning and afternoon with Brady snuggling in a chair. He grabbed on to her arms and shirt and buried himself into her body. He was making cooing and squeaking noises. He would stretch and yawn. He made faces and smiled. His eyelids fluttered and even opened briefly twice. He barely tremored at all. He was comfortable and peaceful and beautiful. Ali was absolutely shocked.

I was planning on joining Ali after school today. I received a call that Ava was in the school's nurse's office with a rash and possible strep throat. Rita picked her up from school and I met them at home. Ava and I made a run to a Minute Clinic...no strep...viral rash...bought some Benadryl...Ava will be back in school tomorrow.

I finally made it to the hospital around 4:45 p.m. Brady and I had Kangaroo time for over an hour. I couldn't help thinking that I was holding him exactly one week after his birth (5:41 p.m. last Tuesday).

The best part for me was the sounds he was making. He was squeaking and cooing and making baby noises. We've missed those baby noises for the past week as he's been pumped with fluids, cooled, rewarmed, had tubes down his throat, and began the long process of healing.

The most haunting part of this week has been the silence. When Ava and Casey were born they started crying almost immediately. When they pulled Brady out, someone said, "It's a boy" and another person said, "He's a big one". And then there was a bone-chilling silence. Brady was completely still. They started to give him breaths with a hand-held device. They placed him on a table, checked for a pulse, and couldn't find one. Somebody yelled, "Code blue" and a number of people scurried into the room. The room was too silent for the number of people standing around. I remember hearing someone repeating, "One, two, press" for several minutes as they tried to bring his body back to life. Ali was shielded by the drapes of her C-Section and kept asking me what was happening. I couldn't answer her. The feeling was was so surreal, and I wouldn't wish it on anyone.

Last Tuesday was a nightmare. Today was a miracle for Brady and for us. We can't wait to see him tomorrow.

With love,

Tyler, Ali, Ava, Casey and Brady 

EEG and Incision Wound

Today was another very eventful day for us. Ali and I woke up and went to spend time with Brady after breakfast. His breathing has really improved from yesterday. He was breathing almost 100 times per minute and now is down to 60. We're hoping that he can move off the CPAP machine and move to a nasal cannula in the near future.

Ali did some Kangaroo time last night and also did some this afternoon. The nurse initially told us not to do it because Brady was doing so well with his breathing and was finally settled down.

It's hard for us as parents because we want Brady to move his limbs and act like a baby. The nurses really want him to remain calm and continue healing. We talked to the doctors during rounds and they assured us that we should do Kangaroo time whenever we want. Brady likes to snuggle right into Ali and both of them usually fall asleep. Ali is exhausted from the surgery, pumping milk and the medications. She continues to amaze me with her strength and courage.

We were initially told that they would do an EEG test at noon and we would meet with the neurologist at 2 p.m. We've come to learn not to plan our day around what they tell us.

I left Ali and Brady to go and meet Ali's parents and sister down in the lobby. When I brought Jerry and Rita up to the NICU, Ali was visibly shaken. Brady was pretty jittery and the nurse was concerned it might be a seizure.

Brady has been on heavy doses of Phenobarbital to help prevent seizures. They think he might have had one seizure on the trip from Ridges to Amplatz. This is always a concern for anyone with brain injuries. For the first few days at Amplatz he had probes on his head connected to a Brain monitor. They don't believe he has had any seizures since he's been there. They have now removed those probes and we get pretty freaked out when he shakes. We have been told it can be natural movements, withdrawal from medications, or just his excitement from hearing our voices and feeling our touch.

At the same time, they are slowly reducing all of the drugs to see how he will act. They also wanted to reduced the Phenobarbital before the EEG to get more accurate readings. We talked to the neonatologist and she doesn't think he was having a seizure today, and she promised that they'll continue to monitor his movements.

We left Brady at 12:30 and the EEG was nowhere in sight. Ali hasn't been feeling very well the past couple of days (minor bleeding around her C-section incision, swollen feet, troubles urinating, etc.) so we walked to an adjacent building to see if someone could look at her.

We were initially told that there weren't any openings until 2:30 and we told them that we needed to be back for the neurologist meeting. We were fortunate to run into my cousin Emily who works there. She helped us connect with a doctor and also found us a wheelchair (that came in very handy for the rest of the day).

WARNING...THIS PARAGRAPH WILL BE GRAPHIC...We ended up seeing a doctor and she began by placing a Q-tip into Ali's open wound near the end of her incision (Ali had staples on Tuesday and had them removed on Friday). The doctor said there were air pockets and it wasn't going to heal on its own. She began to open the entire incision. It opened to about the size of a banana. As she opened the incision, she kept asking Ali about her pain. My wife is on pain medications, but she wasn't given any local anesthesia. It was absolutely amazing to me that she was opened back up without any complaints. We're thankful that the area wasn't infected at all. The doctor cleaned the area and began showing me how to treat it over the next three days. Ali will receive stitches on Thursday. Her body will be open until then. Crazy! And I get to be the lucky one who changes her gauze every morning and evening until Thursday. We've learned that wound needs to heal on the inside for three days before stitches. Of course, as I'm going through instructions, the NICU called my cell phone. The neurologist now wanted to meet with us and wouldn't be able to change his schedule. I told them that my wife was opened up on a table and we need a few minutes to gather ourselves (literally and figuratively) before we could get there.

They handed us some medical supplies, we hopped in the wheelchair (thanks Emily) and hustled back to the NICU. It was now 2:30 and we hadn't eaten since 8:30 (not good for my diabetic wife, but we're at the mercy of our doctors' schedules). It had already been a long day and both Ali and I were ready for the worst.

The neurologist said he was pleased with the EEG. Brady had a lot of normal activity in his brain. We have been warned several times that it's really hard to predict how a brain injury will impact him 10 years from now, but it was such great news to hear. The neurologist said the small dark spots on the brain really don't concern him at all. Usually an infant's brain will reroute around them. There is a larger one on the left lower left side that could cause problems. It's an area that controls vision. The neurologist said Brady won't be blind, but he might have some problems with depth or peripheral vision in one eye.

With any brain injuries, there is always the concern for some form of cerebral palsy. The neurologist said the next week will tell us more based on Brady's basic movements (breathing, sucking, moving limbs, posture, etc.). We've also been told that we'll learn more as we reach milestones (crawling, walking, talking etc.). It's very frustrating as parents to not have answers, but we're ready for whatever the future holds for Brady.

Ali and I checked out of the boarding room and headed home to spend the night at our house with Ava and Casey. It was great to read them stories and tuck them into bed. We're so thankful for our family for helping Ava and Casey have some normalcy over the past week. In many ways it's been the longest week of our lives, and in other ways it's flown by so quickly.

It's hard to be so far away from Brady, but we really trust the doctors and nurses there. Ali is planning on visiting every morning and I will meet her there after school and a quick visit to the weight room. We can't wait for the first time we have our family of 5 together and Ava and Casey can finally meet their brother.

Once again, we're so grateful for all of the offers of help and words of encouragement. Please continue to pray for Brady's health and recovery.

"In prosperity, our friends know us; in adversity, we know our friends". - John Churton Collins

With love,

Tyler, Ali, Ava, Casey and Brady

Kangaroo Time

Today was another good day for Brady. We went to see him in the late morning. They had removed some of the tubes on his right arm. They removed his catheter last night so Ali and I are now in the business of changing diapers. The diapers are just wet right now. They will start feeding him breast milk now in small doses (10 ml every 3 hours) through a tube in his mouth to get his stomach used to it.

His mouth is constantly foaming. The CPAP in his nose makes it hard for him to swallow, but it's fun to watch him blowing bubbles and making noises. He took a small step back with his breathing today. The nurses think it might be tied with the amount of fluid he still has in his body.

Most of his fluid is still being held in his face and his eyes are swollen shut. The nurse today said she saw him open his eyes twice when she was changing the wrappings on his head and face. His eyes were open for a few moments in the delivery room before he was sent to the NICU to filled with fluids to keep him alive and his eyes have been closed ever since. Ali and I are still waiting for the time when we can see his eyes again soon.

There are a few things that concern us. He sometimes has tremors with his arms and his feet. The nurses have told us that those sometimes go away with time, but it's not very fun to watch. The nurses are also a little concerned by the way he arches his back and postures his body. It could be something serious or could just be him pushing away from the CPAP tube. He received some more platelets today to help with blood clotting, so he's still working to get everything in his body back to normal.
I had the chance to hold him for the first time around noon with some Kangaroo Care time. He melted into my body and took a good nap. He was also constantly sucking on a pacifier, so it seems like he's getting ready to eat normally.

At the end of his Kangaroo time, he wasn't very happy at all. It was a joy to see him moving both arms, both legs and letting out a few weak cries. He is so strong that the nurses need to pin his arms down at times so he doesn't remove his tubes. Again, this is a great sign for us.

Ali and I are going to leave the hospital tonight for the first time since Tuesday and go out to eat somewhere in the area. We'll return later this evening for some Kangaroo time for Ali.
Tomorrow will be another big day for all of us. Brady will have an EEG test of his brain in the morning. We will meet with the neurologist in the afternoon. We'll hopefully get more information about the size and location of the brain damage and what we can expect for Brady's development in the future.

Ali and I will spend our last night at the hospital tonight and we'll be home at some point tomorrow. We're looking forward to sleeping in our bed (instead of Ali's hospital bed and Tyler's pull out chair). We're also looking forward to regaining some normalcy with Ava returning to school, Tyler returning to work, and Casey returning to being a mama's boy. There will be many trips to the hospital over the next few weeks as Brady continues to get healthy.

We continue to be amazed by this NICU unit. Brady is in a room with 5 other babies and most of them have changed over since Tuesday. Brady is still considered high risk because of his breathing assistance. Once he is breathing and eating, he will be moved to another room (or possibly back to the NICU at Ridges to be closer to us).

There is room for 46 babies and the entire unit is currently full. Our night nurse was telling us about a baby they just sent home last week. It was born at 24 weeks (the won't take any babies before 23 weeks). It was one pound at birth. It had been here since October, but went home very healthy.
We know it's going to be a long road for Brady, but we're hopeful for his healthy return home soon.

With love,

Tyler, Ali, Ava, Casey and Brady