Little Razorback

Look everyone! I'm a Razorback fan.

Saturday Afternoon

Hello everyone! I'm starting to get a hang of this blogging thing, I think Chad is getting jealous because I'm hogging our blogsite!:) Thought you might enjoy some pictures from last Saturday at Pinnacle Mountain. We just spent some time walking around the park and pushing Carsten in his stroller. Carsten enjoyed the fresh air and sunshine, both of which he hasn't had much of. We had a Gastrointestinal appointment today and they changed his formula to what we call the "cavier of baby food" because it is SO expensive. Hopefully this will help his reflux issues. This coming weekend there is a meeting for the Down syndrome association in Little Rock. We can't wait to go and get involved with starting a new moms group and connecting with other families in the area.
Also, Chad and I are going to attempt the marathon in march! Well, me the half and him the whole. We'll see how training goes with an infant:)
Love to all,
Momma Bridges

Can't get enough:)

Last night we dressed Carsten up as a little Vampire/Bat and took him down the street to our friends house Aileen and Howard. They were excited to see the little bug and we made caramel popcorn while Carsten fell asleep on Howard's shoulder. Of course Chad and I forgot to take a pic of him in his costume so I'll have to dress him up again and get a quick flash today. Here are a couple of others in the meantime:)

Eating

Another note,
Please continue to pray for Carsten's eating which isn't so great! He's still getting about 80-90% tube fed. Please also pray for moms sanity and patience when trying to feed Carsten and Carsten's constant reflux, gagging, and frequent vomiting. I know that he will grow out of most of this but it is very hard to sit there and watch him cough, choke, and spit up. Thanks everyone!

The Bridges Bunch

More Pics

Okay so the last pics didn't do Carsten justice. Here are some more of our favorites:)
(I can't believe I've blogged twice in one week!)
Love to all,
Momma Bridges

OUR LITTLE PUMPKIN

Here's some cute pics of our little pumpkin! People have been asking for more pictures so here are some recent ones. Carsten is grinning constantly now, his beautiful smile just makes your day. He is very happy and such a content little boy. Last weekend we went to the Buddy Walk Fundraiser for Down Syndrome in Northwest Arkansas. Lots family and friends came and it was a great time. Its so nice to see the community that they have in that area. We are planning on attending a meeting here in Little Rock next week to generate some ideas for activities here. I'm hoping to put together a new moms group for encouragement and support. I talked with a mother at the Buddy Walk that said if she had not gotten connected with other moms in the area that she would have aborted. Its sad that almost 80% of people abort when they find out a diagnosis of Down Syndrome. Even during hard days, Carsten is still the best thing that has happened to Chad and I!

WE ARE HOME!!!

Yes, we are finally home!! We have been home for almost two weeks now and it has been wonderful! No more sleeping on pull out couches, cold pizza from the cafeteria, vitals being taken every 3 hours, alarms, tubes, wires, and more.... We are so thankful and excited to have our precious boy home. And precious he is, he started grinning and smiling last night as Chad was able to capture him with our camera. We look back at our hospital adventure and can't believe it was only 2 1/2 months, it seems like the journey was much longer than that. God has worked everything for the good with our experience there and we can see how faithful he has been. Having a child at Children's Hospital has completely changed my views of the families there and what they endure. I hope and pray that it will make me a better therapist in the future.

We will never forget the special people that we met during our stay. I can remember an 18 year old girl by herself waiting for her son to be discharged from the NICU, a mother that lost her girl after 6 months in the hospital, another family that lost their child in the NICU, and many young parents anxiously waiting day after day for their children to get well. I will also remember numerous other wonderful families with children with Down Syndrome and the same heart defect as Carsten. I hope that these relationships will continue. There were wonderful Chaplains that came often to visit, doctors and nurses that provided excellent care and compassion, and all of my supportive co-workers throughout our stay. We couldn't have gone through it without all of them and their constant presence and encouragement.

As for Carsten, he came home with a G-tube or button which required an additional surgery. It is a small device that allows for feeding directly into his stomach. Carsten did pass his swallow test, one of the happiest days of my life!! However, he is still not eating completely on his own so we are able to put the rest of the formula through the tube. As a therapist, I used to believe that G-tubes were the enemy! I have come to realize that they are actually a life saver and provide a safe and easy way for him to get all of his nutrition. Thanks to the G-tube and Carsten's progressive eating, he has gained weight and is now over 10 pounds! He finally can fit in all of his 0-3 month outfits.

We are hoping to start therapy soon and from what we can see, everything from here on appears to be very positive!!

Love and blessings,
The Bridges Family

Carsten's breathing on his own!!

Today was a significant day post surgery as Carsten is now breathing on his own again, praise God!  Since surgery on Wednesday, Carsten has had a ventilator or breathing machine to assist with his breathing.  They have been pumping him with Morphine and Atavan to basically knock him out so that he would not get agitated and move around with the ventilator in his nose.  Despite his breathing machine, Carsten has been going to town on his pacifier.  He has been sucking non-stop since Thursday morning.  Chad and I are hoping that this is a good sign for his future eating skills:) 

This evening, the team came in the room to remove the ventilator with nervous mommy and daddy at the bedside.  The nurse told me she would give me the mommy version of what might happen; a) Carsten would start breathing just fine and never look back; b) Carsten would breathe okay for a while but need to be put on the ventilator again if he goes into distress; or c) he would require to be put back on the ventilator immediately.  Chad and I waited anxiously in the back of the room while they removed the tube.  Carsten was a little stubborn at first and initially refused to breathe.  After what seemed like 5 minutes (but really probably 60 seconds) he started to turn blue.  The doctor then gave him a dose of something through his IV that would reverse the effects of Morphine.  Carsten perked up very quickly with his caffeine shot and finally took a breath!:)  Let me tell you he wasn't very happy at first because he had gotten lazy since the machine was breathing for him.  Now he is breathing comfortably with a little bit of oxygen assistance through a nasal cannula.  Chad and I celebrated by going to Juanita's (mexican)! 

It is amazing to see the difference in Carsten's appearance since his surgery.  His little hands and feet are now warm instead of ice cold, he is breathing comfortably at 35-55 times a minute instead of 115, and he looks nice and pink instead of pale and clammy.   Today was a big day for Carsten on his way to recovery and we are overjoyed!   

Blessings,

Mamma Bridges

The Day we have known about since March 15th - Part II

We have learned to accept, though not enjoy, all of the different things that Carsten has experienced during his seven weeks of life, most of which has been in the hospital. He has been poked, drawn, pulled, prodded, pushed, taped, attached, detached, injected, covered, uncovered, heated, cooled, elevated, measured, and checked. And then there is the rectal thermometer. Who discovered that part of the body was the place to get the most accurate temperature results and who was the poor soul who was on the end of that discovery?

Prepared with the visual experiences of the past seven weeks and the information about how the heart surgery was to be performed, we were expecting Carsten to look rough after the surgery. So we when we saw him post operation, he did look like he got hit by a truck. His eyes were swollen, he had a 12-inch incision down his chest, tape, tubes, injection marks, and various ink marks on his chest. There was a patch placed on his forehead and secured on the back of his head. He had heart leads, a pulsox monitor on his finger, and a blood pressure apparatus on his right leg. He had one nostril filled with a ventilator and the other nostril filled with a tube to empty his stomach. He had one IV in his neck, sown with three stitches so it wouldn't come out. Another IV was inserted into his left leg near his groin. Additionally, he had a drainage tube coming out his stomach to drain out the excess fluid around the heart. Worst of all, he had a foley catheter.

But his heart is fixed! Of course, he was sedated prior to and throughout the operation. What is truly remarkable is that despite having to endure all of the above treatment for his benefit, he rarely cries and I do mean rarely. He rarely fusses. He has been a Trooper throughout all of this experience. What a good temperament this boy has?!

So he is now in CVICU West. He will get extubated (get off of the ventilator) probably tomorrow morning. He is recovering well, wiggling around of late and recently opening his eyes. And he is sucking on his pacifier like he was trying to get it down his stomach. We expect another seven to nine days in the hospital to work on feeding with a repaired heart. We are anxious to see how well he does. While we knew the heart surgery wasn't a magic bullet for everything that ales him, we think his feeding will improve when he doesn't have to choose between breathing or swallowing. I think I would choose breathing.

The Day we have known about since March 15th - Part I

 

Back in the spring, on Kari's second ultrasound (20 weeks) we found out that Carsten had what was described as hole in his heart.  Further doctors appointments, ultrasounds, and ecco cardiograms revealed that surgery would be required to fix a complete A/V canal heart defect.  So yesterday, Carsten had surgery to fully separate the four chambers of his heart.  Amazingly, the cardio thoracic surgeon (I love saying that title.  What do you do, sir?  I am a cardio thoracic surgeon.  Wow!) placed this piece of cloth into the center of his heart and sowed the heart around it.  The actual surgery took two hours but with pre and post operation time, the total time was six hours.

During that time, we waited in a private family room where a nurse would come hourly to brief us on the progress.  There was a tremendous amount of tension in the room and in our bodies when the nurse would knock on the door and subsequently come in to tell us where the operating team was in the process. 

Frankly, there are few days in all of our lives that we can and will never forget.  We remember those days containing both good and bad events.  Days with events that shape you, change you, mold you.  Yesterday was one of those days for Kari and me.  Fortunately, it was a day with a good ending.

Honestly, it is surreal to look back on it.  We are both extremely overjoyed with the results and yet feel a sense of guilt as we think of people that we know that have experienced similar difficult situations  with not so happy results.

Kari and I believe God is faithful to us regardless of the situation.  And knowing that we haven't experienced what our friends have experienced, we believe that God was faithful to our friends despite the fact that their outcomes were not happy.  2 Timothy 2.13 says that "if we are faithless, he remains faithful for he cannot deny himself." (ESV) Also, Lamentations 3.22-23 state "The steadfast love of the LORD never ceases;* his mercies never come to an end; they are new *every morning; *great is your faithfulness." (ESV)

I think of Horatio G. Spafford who wrote a hymn, "It is Well With My Soul", during an event of extreme loss where he lost his four daughters simultaneously.  The previous link provides further background on the hymn and the story behind it.  It is well worth the read.

I say these things to impart we are extremely pleased and thankful...overwhelmed with joy because of the success of the surgery.  And at the same time, we want to be thankful and joyous, despite the outcome of the surgery.

We are blessed and I don't want to take it for granted nor forget it.  More on Carsten in Part II.

Pooped Out

Flashback from the NICU....We thought this was cute.  He is sleeping right after a feeding.   

Head Banger

Flashback... During the phototherapy that was mentioned in the last post, Carsten starts lifting his head on the same day (four days old). He wasn't quite old enough to know how to make that heavy metal hand sign with his fingers yet. This was a very difficult time for us because of how much he hated to stay under that light and the fact that we had to leave him there.

Feats of Strength

Flashback.... Here is a video of Carsten's feat of strength when he was four days old. Not enjoying the phototheraphy required to reduce his jaundice nor the snow goggles he was wearing, he rolls over on his back. We started filming him in the middle of it when he had turned from his stomach to his side. Momma is there at the end to soothe him and apply her momma spells on him.

Hmmm. Let Me Think About That.

Carsten's feeding has perhaps turned the corner.... But we have seen so many momentary signs of progress only to later see a setback. He definitely is closer to taking every feed by bottle. Since last Tuesday at 3 pm, he has taken every bottle feed that he has been given. Still it is every other feed (4 hours apart initially, now scaled back to 3 hours).

At this point (three weeks now), we remain in the hospital to work on and improve his feeding to an acceptable level to go home. What is acceptable? We don't know. Regardless of how much he improves in bottle feeding and his ability to take all of those feeds, we probably will go home with feeding tube equipment. The question will be how much it will be used or will it be available to us if he would need it. Either way, we are ready to go home. I feel like we are in fourth grade waiting for the last month of school to end. Didn't those last few days and weeks seem like forever?

Look Mom. No Oxygen!

Sorry for the absence. And yet a lot has happened since Monday, 30 JUL. First, no nasal cannula! Carsten has been without the oxygen supplement for over a week now. Great news and one less cord/tube to deal with. He never really liked those prongs in his nose anyways, but who would. His breathing is good and we don't expect to go home with any oxygen supplement, whenever that will be.

Feed Me Seymour, Feed Me

"Feed me, Seymour / Feed me all night long - That's right, boy! - Go to it, Feed me Seymour / Feed me all night long / Cause if you feed me, Seymour / I can grow up big and strong." That's what Audrey II said in the movie, "Little Shop of Horrors."

And that's exactly what we are trying to do to Carsten. Feed him! But he can't grow up big and strong if he doesn't eat. His feeding is our biggest concern and prayer request. It's not that he doesn't like to eat; it's that he doesn't stay awake long enough to finish his bottle. Ten minutes and he's out--asleep. A WET wash cloth, poking, pulling, nothing will wake him up. We believe his heart defect is the primary reason he doesn't have sufficient energy to finish a feed which normally last 20 minutes. He works sooo hard to eat the amount that he does. We can see how much he tries to breathe after feeding. We can see his shoulders rise along with his chest as he leaves his mouth open for air.

Currently, we are alternating bottle feeding and tube feeding. And whatever he doesn't finish in the bottle feed, which is usually half, is fed by tube. We were told today that they would allow us to go home with a feeding tube. While that doesn't seem like good news, it is good news if feeding is the only reason we would be staying at Arkansas Children's Hospital (ACH). And though it will add difficulty to our lives, we believe the tube will be temporary. We still have sometime yet here at ACH to make some progress.

Feed Me Seymour, Feed me. That is what we want to do more than anything, right now, Carsten. Eat little man, eat!

Bili, Bili, Won't You Lose That Number

Do you remember that Phil Collins song from the 80's? Actually, it was Don't Lose That Number. Since Sunday evening (the last post), we have been on an extended, emotional roller coaster ride. Monday, the medical staff thought that the high bilirubin level was due to breast milk jaundice. So we switched the feeds from breast milk to formula. But on Tuesday after 24 hours of formula, the bili level only dropped from 17.8 to 17.2 Not the large decrease we expected with the feeding change. However, the doctor felt like it had peaked at 17.8 and would continue decreasing. And then Thursday when we expected another number lower than 17, the test came back with 19.9, a number that is not far away from a very dangerous level that causes brain damage, blindness, motor function problems, and other irreversible lifelong side effects!

Needless to say, we were extremely concerned and frustrated that we had been treating the jaundice for five days, under close medical observation, and yet the bilirubin level was higher than when we first started, last Saturday. It was the first time as parents that we felt totally helpless. I have often heard parents' frustration of wanting to DO SOMETHING but not being able to intervene.

The medical staff started more aggressive treatment to include phototherapy and antibotics to treat any possible infection that would prevent reduction in the bili levels. Additionally, he was given a feeding tube to keep him hydrated because he was not taking all of his feeds. This too was a setback but understandable given the amount of formula they were giving and the associated lethary and reduced appetite due to the high bili levels. Furthermore, as a result of his condition, he was moved back into a pod instead of the multipurpose room we previously had. Thus, we slept at home or laid down in our own bed, rather. Leaving him at the hospital was particularly difficult because we felt like we were leaving him when his condition was at its worst.

So for the next 12 hours until the next bili level results, we slept, waited, worried, became expert internet doctors (whatever), and most importantly prayed for a reduction. So on Thursday morning when we returned to the pod, he wasn't on phototherapy and the nurse said the bili had decreased to 13. A tremendous relief and an answer to our prayers. However, she said that there was an infection found and the doctors would tell us more when they rounded in an hour. So there it was... one more thing to worry about. We see progress in one thing and something else pops up. Understandably, the nurse didn't want to give us all the information and we didn't prod her for it. So we waited...again.

An hour later when the doctor showed up, simultaneously we had a visitor that came by, a person drawing our blood for a study at UAMS, other visitors outside we weren't expecting, and the doctor coming by. The UAMS rep waited. We asked the visitor to come back later and we told the other visitors we would be with the doctor for 20 more minutes.

The doctor was pleased to see the significant bili level reduction and attributed the previously high levels to the infection. What kind of infection? Strep B, most likely. Somewhat common in newborns. Once again, we see progress in one area and have another area to be concerned about.

The infection would require ten days of antibotics through an IV. Ironically, that was the first time we had ever been given a specific timeframe for our stay. However, the doctor mentioned that they were checking to see if the bacteria had gone to the spinal cord and might have caused meningitis. She doubted that it did, but they, of course, had to confirm it. If it was there, Carsten would get 14-21 days of antibotics and other treatment. Fortunately, they started the antibotics early which would help to prevent the spread. When she told us, we didn't know exactly what meningitis was but we knew that it was serious. While we waited, it was Wiki-time to see what meningitis was. Very serious, indeed. An hour later, we found out that it was negative and there was no meningitis. We exhaled so much; I can't believe we could hold that much air in our lungs. Then it was 12:00. We were exhausted. It is amazing how much that tension and worry can tire you. I am sure there is a lesson there.

28 or 29 times in the Bible (I can't remember which) God tells us not to worry or be afraid. Almost enough for once a day. And yet, if we were honest, we all worry too much when we desire to influence a certain situation to a particular outcome. All throughout this journey so far that goes back to early pregnancy, we have trusted that God would accomplish His will through Carsten. But Kari and I are experiencing how difficult it is to entrust to God someone we love so much. For us, it is different that money, personal life situations, and everything in our past that we continue to drag around.

So we lean on 1 Peter 5.7 "Cast all your anxieties on Him because He cares for you." Thank God that He does care for us.

Excited for tomorrow.

Clean As a Whistle

Mama gave Carsten his first bath on Sunday. We thought he did very well. He just sat there in the tub and thought why are they doing this to me. Haven't I been through enough? Even more amusing was how much Kari enjoyed giving him the bath. She was giddy. Attached is one of the few photos that were censored and could be posted.

Temporary Setbacks

While we are still very positive and very thankful for everything thus far. This last weekend and Monday seemed like two steps forward, one step back. One step forward, two steps back. We did not make progress like we had hoped. With the previously mentioned high bilirubin levels, a lack of reduction in supplemental oxygen, and several difficult feedings, our stay here very well could be extended. Last Friday, we looked at this Wednesday as a possible date to go home, but that will be slipping to the right. That being said, even before Carsten's birth, we anticipated we would be here for a while (up to 2 weeks). And though we don't know exactly how long we will be here, our overall goal is to be able to take him home with knowledge of any health related issues that would be identified at ACH.

Bili-What?

Bilirubin. Have you heard of it and did you know you have it? It's not the fact that you have it that's the problem. It's the fact that you should not have too much of it. Too much of anything is not usually a good thing. And that is true of Bilirubin. Too much of it causes jaundice, not uncommon for newborns. In addition to a yellowing of the skin, biliruben causes a lack of appetite and increased lethargy (sleepiness). Thus, Carsten has not been feeding consistently well and he sleeps more than what would be expected to be normal (to include feeding time). To make things more complicated, breast milk from the mother actually increases bilirubin.
So we feel like we are in a never ending cycle where he is always sleeping and not feeding well because of his high bilirubin. And yet it may be mama's milk that adds to that increased level. But the hospital favors breast milk over formula. Hmm. We feel particularly pressured (from within ourselves) here at the hospital to ensure that he is feeding appropriately. If his feeding doesn't improve, we can expect him to receive a G tube to feed him intravenously. This situation is something that could prolong his stay here and ours.
We are discouraged and frustrated right now. His level was high upon admittance at ACH. Last Saturday, they put him "under the lights" for two days to reduce it. Two days later it did decrease and so they took him off the lights yesterday. We were thrilled. He hated the light and we did also. However, last night his level of bilirubin increased. He was more lethargic and it became more difficult to feed him. So maybe the light wasn't that bad. He did eat better when he was under the light.
It seems to us that this is the most pressing issue right now for him and we long for a targeted plan of action.

Progressions

Since arriving on Thursday at ACH, Carsten has steadily progressed. He was first in an open "pod" with six different babies. But because of his improving condition and the potential for Kari to spend more time breastfeeding with privacy, he was placed in a multi-purpose room on Friday where we can stay with him! A TREMENDOUS BLESSING! We can't express how thankful and how undeserving we are to have this room. There aren't many of them in the NICU.

Of particular concern is his oxygen intake. That has not seen significant improvement yet. And while the doctors try to determine if it is due to his lungs or heart, they are monitoring his jaundice (more on that later) and so many other things like the weight of his diapers due to the content in them. :) I am really hoping that is not required when we go home.

Something we are most pleased with is his ability to feed. While he is not yet totally breastfeeding, he is able to do that and bottlefeed. Hopefully, we can do away with the bottlefeeding soon.

Still no dates/timeframes on when we would be able to take him home. At the earliest, we guess next Wednesday.

More to follow about his first outfit and tanning.

My First Vehicle Ride

What was the first vehicle you rode in? Probably your parents' car. Today, Carsten cruised in an ambulance over to Arkansas Childrens Hospital (ACH). And his mom was discharged from UAMS today. Walking more but still sore. She walked the long and winding halls of ACH to get back to see him and feed him. As we were leaving UAMS, the nursing staff gave us the attached certificate with Carsten's footprints on it. We loved it.

Overall, it was a big day for the little man. All the commotion of moving out of one nursery warmer to an ambulance to another nursery warmer at another hospital followed by an evaluation at that hospital staff. Consequently, he slept a ton at ACH. Two great developments -- The medical staff reduced the amount of oxygen they are giving him to supplement his breathing and he is feeding on a bottle very well. His individual oxygen intake and feeding are the two major concerns for us and will be the primary factors on when he is able to come home. Big prayer requests there.

Just getting started...

Carsten's Coming Out Party

Carsten is here...finally. There is so much to say. We will have to send out our story as we can. Too much for this one post. For now, we'll post some pictures. He is doing really well so far. Better and better. We are very pleased thus far. And we know we are very Blessed!