Thursday, January 29, 2009

New pictures

Just a few photos of our little man!

Wednesday, January 28, 2009

More Progress

On Monday, Braden saw his pediatrician and was given the green light to go back to straight breast milk. His chest x-ray showed no signs that the chylus effusion was still an issue and that means his body is tolerating fats again. Hopefully Braden will start gaining weight more rapidly now. His Monday weight was 7 lbs. 10.5 oz. We are celebrating every bit of progress. At this point we are still enriching his feeds with formula for a higher calorie intake but are really optimistic that he will be nursing again soon. The bottle has been great, though, for involving the whole family in caring for baby. The girls have all taken turns giving Braden his bottle and they think that is just the best thing ever! They giggle and coo and just admire him by turn. He of course loves the attention and their perky little voices. And, Darth gets to take his turn at night feedings! Hurray! I still get up of course but get back to bed sooner than I would otherwise and that is wonderful. Sleep is such a fond distant memory. I'm sure I'll catch up some day . . .

Braden is getting a really strong neck and is able to be held up to our shoulder for burping now. The incisions and pacer have made this slow in coming. Soon he will be able to start tummy time. Right now his loves are eating, sucking on his pacifier, his swing, and being entertained. He doesn't prefer baths (hates them would not be too strong a description) and has extreme reactions to being weighed at the doctor's office. But other than that he seems to be a super mellow little guy who has a big tolerance level and enjoys the simple things in life. Braden has really expressive eyes and we enjoy seeing how much he can "say" with just those big baby blues. He often lifts his little eye brows too, all the while just sucking away on his paci. So cute! Pictures are coming we promise.

Today I found myself finishing up dishes and listening to Braden fuss and was surprised to start feeling really grateful for a crying baby! It was so hard when he was in the Cardiac ICU to see him show signs of pain with his eyes and to not be able to cry because of the breathing tube. Then after it came out it took a while for his voice to come back and for him to use it. We continue to be so grateful to Jesus for how far He has brought Braden. He is our little miracle.

-Jenni & Darth

Friday, January 23, 2009

Pacer Check

Yesterday, Darth, Braden, and I went to Seattle Children's for Braden's pacemaker check. The mountain passes were great, so thankful for that.

The check went well. The clinicians that work in the electrocardiology area are so helpful and nice to work with. It was a pretty short and sweet appointment. Braden had 4 different conductor pads attached to his chest, with hook-ups to read the heart activity, and then the actual magnet that "talks" to the pacer was placed on his abdomen. The tech viewed the heart activity on the monitor and said everything looked good, the pacer was doing well and Braden's heart was responding appropriately. Because he is still so little and the pacer is relatively newly placed there will be some adjustments that will take place several months down the road after the heart recovers more from the initial surgery.

Lucky Braden also got to have some lab work. The lab tech at Children's are so good at working with little veins, we would just as soon have blood draws there when it is convenient. We celebrated our healthy little guy by dining at Teriyaki Madness in Kirkland for a late lunch. Their teriyaki chicken and rice is to die for! It took us back to our college days when we were poor and life was amazingly more simple.

Which reminds me: We are so grateful for medical insurance! The EOB's are coming in from all our medical fun and oh my! Yesterday we had nineteen of those in the mail. Our "Braden" file gets its own file box.

As we continue down this road called "life", we are so thankful for Braden and our three daughters. With every turn we stick together and support one another along the way. It's reassuring to know that Jesus holds the steering wheel and promises to never leave us alone on our journey! Life is truly precious!

- Jenni & Darth

Wednesday, January 21, 2009

Tubeless in Wenatchee

This week, Braden has been doing so great with his bottle feeds that we planned to ask our pediatrician to let us progress a bit more on the feeding front. The morning of our appointment Braden decided to remove his own feeding tube (again!) and that kind of cinched the deal. I (Jenni) wasn't dying to replace the tube and since our doctor is so great at working with us and our comfort level with Braden's progress, he agreed to let Braden have had only bottle feedings (no continuous feed tube feedings). Braden has been doing this for two days. It is incredible to see our little man with no "lines" for the first time in over 2 months! He has been doing great with the bottle and has really gotten the hang of it again. We are still wanting to see more weight gain but that seems to be slow in coming. Still, Braden's breathing is looking good (no laboring), his food is staying down, and he is in all visible respects doing extremely well.

We will write again after our pacemaker clinic at Children's later this week. Keep praying for that pacemaker miracle. Thanks!

-Jenni & Darth

Saturday, January 17, 2009

Braden at Home

It has been almost two weeks since Braden was released from the hospital. The time has been spent getting back into a routine of sorts while trying to fit in lots of doctors appointments, phone calls and meetings. Everyone, it seems, still wants a piece of our little man.

I have become Braden's nurse; It really is a full time job. He has a round the clock meds schedule and a unique feeding plan, that just changed this past week. Braden had been on continuous feeds through his NG (feeding tube) but just started having bolus feeds during the day. I really have to work with him to take formula from a bottle. He has had to relearn that skill, sucking and swallowing without gagging. Plus he is on a funky low fatty acid formula that can't possibly taste good! Braden started on Tuesday taking in only about 10-15 ml of liquid by mouth and then taking the rest through the tube to finish off each feeding. He progressed to about half an ounce and then this evening he actually drank the entire bottle. We were ectastic!!! The best part is he is finally getting into a more normal hunger/eating/ sleeping pattern. We rejoice with every bit of progress Braden makes. And I have to say he has the best lopsided baby smiles!

Next week Braden heads to Seattle for a pacemaker clinic. At a cardiology appointment last week the doctor reported (after looking at some test results) that Braden's heart is still enlarged due to swelling. He has had a fair amount of trauma to his little heart in such a short amount of time. We are encouraged by that news and choose to believe that the heart block condition can still change as that swelling goes down. No one is saying that to us medically because unfortunately there is a tendency to be brutally realistic. Yet, the need for a pacemaker can change and that is how we are praying for Braden, a temporary condition. We are praying for safe travels and a good report for the upcoming pacer check.

On a lighter note, our last family member came home today and now we are really all back together. Lucy, our 2 year old beagle, has just returned from my sister and brother-in-law's house, where she has been since right before Braden's birth. It was very exciting to have her back with us. Lucy was not overly impressed with the baby. She gave him the beagle sniff test and I guess he passed. Now we really have a full house with 4 kids, 2 cats , and 1 dog. HELP!! Really though, we love all the activity and controlled chaos. We are blessed.


Thursday, January 8, 2009

Home sweet home

For the first time in a month, we are all under one roof! Thankfully I was able to pick up Jenni and Braden on Tuesday and bring them back to Wenatchee. The weather was terrible, but we were on a mission.

Even though we are home, Braden still has some healing to do. He requires a feeding tube for nutrition and some medications are ongoing, but we hope he can be weaned as soon as possible. Braden is undergoing some physical therapy so that when he's off "the tube" he can eat by mouth again. Each of these steps are a process, and we look forward to his complete healing.

Thanks for checking in on Braden and our family. Once we're settled in a bit more, I will make it a priority to post some new pictures.


Tuesday, January 6, 2009

One step closer to home

After twenty five days and three surgical procedures, we are happy to announce that Braden was officially discharged from Seattle Children's Hospital today! This has been a very long road, but now we are one step closer to home.

On Saturday I was able to bring our daughters back to Wenatchee. We felt it was important for them to be able to start school with their classmates on Monday. So now, if the mountain passes allow, I hope to return to Seattle to pick up Jenni and Braden on Tuesday.

Again, we thank you for your prayers. They have carried us to this point and we are so grateful to everyone!


Sunday, January 4, 2009

Happy New Year!

Well, it is 2009 and yes, we are still at Children's. But good news, it looks like Braden will be discharged tomorrow. I am hopeful and optimistic because he has done so well over the past several days. Today the nurse even took him off the monitors and he is only hooked up to a pump for his formula. He is on a continuous feed still, taking a special formula, until his lymph node issue (chylus effusion) is resolved. That means he will come home with a feeding tube. Which, by the way, I would like to say that today I placed his feeding tube! I am very proud of myself. It was a lesson I didn't want, but had to have for discharge. It is necessary to know how to do this just in case he pulls it out, which Braden has down to an art! That is why he gets to wear socks on his hands all the time now. Anyway I really dreaded having to do it but it wasn't as bad as I had anticipated. Braden didn't appreciate it however.

We are getting so close to all being together again under one roof that I am practically hyperventilating with anticipation. I am actually looking forward to doing wash in my own laundry room and cooking again! We will be sure to let you know when we are actually discharged. Braden still has challenges ahead of him, but we are pleased to continue his care from the comfort of home. He is getting stronger every day and we are confident that the Lord is continuing to heal him.