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.