TYSON MATTHEW KOTTELENBERG


"The Lord is faithful to all His promises, and loving toward all He has made." Psalm 145: 13b

This blog is about our eight year old son Tyson. Tyson was born with serious complex congenital heart defects, (Hypoplastic Right Ventricle, Tricuspid Atresia, Coarctation of Aorta, Transposed Great Arteries, with VSD and ASD.)
In short, the right side of his heart is completely under-developed (he has half a heart,) his main arteries are mixed up, and his aorta is narrow. He has undergone 3 open-heart surgeries and 5 heart cath procedures to try to 'repair' his heart. Sadly, Tyson has also been diagnosed with pulmonary vein stenosis, a fatal disease in the veins of his left lung. Typically, having the 3 palliative surgeries buys children with single ventricle hearts many years before eventually needing a transplant. But because of the narrow pulmonary veins, this increase in pressure is causing his blood to shunt the opposite way across his Fontan fenestration and surgeons are not able to close the fenestration. As a result, he remains on coumadin and is heading down the transplant road faster than we'd originally anticipated. He's still doing AMAZINGLY well all things considered. We entrust our dear son into the hands of God, knowing that in all things God works for the good of those who love Him!

Nursing Again - Saturday, January 10, 2009

"Trust in the Lord with all your heart,
and lean not on your own understanding;
in all your ways acknowledge Him
and He will make your paths straight."
Proverbs 3: 5,6

This past week was a very busy week, trying to adjust to being a Mom of four children, and trying to establish new routines. It certainly is busy! As a result, I guess I haven't been getting enough rest and the anxiety that I feel sometimes has affected my milk supply. For the past 6 weeks I haven't had any problems with pumping, but this week things started going downhill fast. I phoned the Nurse Practitioner at Sick Kids yesterday and begged her to give me permission to start nursing Tyson sooner than the original date of January 13. She gave me the go-ahead and I got to nurse him for the first time last night. Tyson was a pro, latching on immediately and drinking as if he never stopped in the first place! What a blessing to have this experience go so smoothly!
I did have to supplement a few times last night with some of my stored breast-milk but after his 4 am feeding, I have been able to give him what he needs. It's amazing how quickly the milk picks up again once it's a baby doing the work. This morning before I nursed him he weighed 4.36 kilos and after he weighed 4.48 kilos. That is a 120 ml intake! If this keeps up, he will be chubby in no time!
Because Tyson started on breastmilk sooner than originally expected, they would like to see him again this week instead of waiting for his Jan. 20 appointment. Tyson will also have a chest x-ray to make sure that lymphatic fluid is not building up again, and then have another clinic appointment with the nurse practitioner to check his vitals and assess his weight gain.
Please pray that the fluid does not start to build up in Tyson's chest again and that I can continue breastfeeding him. That is the one uncertainty right now. If the fluid comes back, it would mean another 6-8 week course of portagen, at which time I would most likely have to give up on breastfeeding. We shall wait and see how the x-ray turns out. We are praying that God gives us patience while we wait the results and peace with His plan.

Brian and Mel
and family

3 comments:

willowsprite said...

Oh, that's so great. Sometimes you just have to follow your instincts. When you mentioned the anxiety I got choked up, remembering what it was like, and how it truly does affect bodily functions. Praying Tyson continues to heal,
Sher

Joanneke said...

Hello Brian and Melissa and kids,
It is a big adjustment every time a new little one joins the family, but with all the added stress that comes with Tyson's condition, it makes it that much more difficult.
It must have been so special to finally be able to breastfeed him again! What a precious thing it is to be able to nourish him in this way! I hope it continues to go well and that he'll gain weight (and fat!) soon.
Thinking of you all,
Joanneke

Anonymous said...

Glad to hear that you are nursing and that he's having no problems. As far as the weight gain goes - just listen to your baby... if he wants to eat - feed him...he may have to be the boss for awhile :) at least until he's fat enuf to ignore.lol he will figure it out and chubb up!!
All the best as your family adjusts to another little person in the "mix"

God Bless,

Margaret