Friday, May 29, 2009

1 Week Old and Bennett's Heart...

Wow, time flys when you're having fun! I can't believe one week ago today I was confined to a hospital bed, hooked up to an IV and catheter and in quite a bit of pain. Today I'm back to cleaning, as usual and wanting to do everything on my own! Unfortunately I cannot lift anything really but the baby for 4 weeks (this means no lifting Miss Harper) and no driving for 2 weeks. Harper is not really liking this but she is coping. As with any newborn, the doctors don't want us going places where there are a lot of people or sick people but especially with Bennett due to his heart condition so I think the girls are getting a little stir crazy. We're just trying to make the best of it. My parents left today and thankfully Mike is here for the next 4 weeks to help with lifting Harper and driving if we need to go anywhere.

Bennett is doing quite well with nursing- much better than Ainsley and Harper did, I think, which surprises me due to all this talk of babies with DS having low tone and don't always nurse good. So far he doesn't have any issues and I'm praying it stays that way because pumping and then bottle feeding and then cleaning bottles is so much harder than nursing and it's exhausting! He's been so considerate to have 4-5 hour stretches through the early morning hours, giving mommy some rest and generally goes 2 1/2 to 3 hours during the day. We'll see how long this lasts!

Ainsley has been such a good helper!! She loves getting me the diapers, his paci, his blankets, picking out outfits (of course!), holding him and she is quite interested in how he gets the milk from mommy-all sorts of questions as you can imagine! Harper on the other hand is kind of in her own little world of playing with Dora dolls, watching Dora on tv and just being Harper. Once in a while she will help get a diaper but instead of handing it to me she likes to throw it on Bennett. But she is very gentle with him for the most part. She does not want to hold him though. When we first came home I was changing his diaper and Harper got a hold of the Bacitraycin I use for his circumcision and she said, holding it up "Baby's' toothpaste!" Too funny! Let's hope I don't catch her trying to brush his teeth with the Bacitraycin!

Now, many people have asked about Bennett's heart and if he still needs surgery or what is the next step. So for those of you that are not familiar with an AVSD (Atrioventricular Septal Defect) I will try to explain what the deal is. Basically, he has a large hole in his heart that needs to be patched up at 2-4 months. I'm no doctor or nurse, just a mommy that wants to get her baby's heart fixed and be done with it so I copied this directly from a hospital website that talks about AVSD's (I've added my comments about Bennett in bold, non italic, kind of long but it gives you the gist of what we will be dealing with in the months to come) :

Because there is a large hole in the ventricular septum, the high pressure normally generated by the left ventricle to propel blood throughout the body is also transmitted to the lungs. Under normal circumstances, the lungs have a blood pressure much lower than that in the rest of the body.

The presence of a large left-to-right shunt and the associated increased workload on the left ventricle and high pulmonary artery pressure cause the lungs to become engorged with blood, and causes fluid to leak from the bloodstream into the air spaces of the lungs.

This condition is called pulmonary edema and makes it harder for a baby with this condition to move his or her lungs and breathe comfortably. The combination of increased heart and lung work uses large amounts of calories and results in the constellation of symptoms referred to as congestive heart failure (CHF). (So this is what will happen if his heart is not repaired. So yes, he still needs surgery).

Babies with congestive heart failure breathe fast and hard, often sweat and / or tire out while feeding, and grow slowly or sometimes even lose weight. These symptoms usually develop gradually over the first 1-2 months of life. (So far we have not seen these symptoms and hope to not see them, the doctor said some babies do not have these symptoms and get the surgery and all is fine. See next paragraph).

A small number of infants with a complete atrioventricular septal defect will not develop congestive heart failure. This occurs because in some cases, the muscle cells that line the small arteries to the lungs get bigger and constrict to try to protect the lungs from the extra flow and high pressure caused by the atrioventricular septal defect.

Called increased pulmonary vascular resistance (PVR) or pulmonary vascular disease, this condition is more common in infants with Down syndrome. (So maybe this will be the case with Bennett-only time will tell.)

The increase in pulmonary vascular resistance is very effective in preventing the signs and symptoms of congestive heart failure by minimizing the amount of left-to-right shunt, and may even cause blood with low oxygen to go from the right ventricle to the left ventricle and out to the body without picking up oxygen.

This causes cyanosis
, which is a bluish discoloration of the skin, fingernails and mouth and it may also cause the murmur to be softer. (The doctors have us looking for blue gums, blue around the mouth and anywhere else, so far, no blue!)
While infants with a complete atrioventricular septal defect (Bennett does have Complete AVSD) and elevated pulmonary vascular resistance often grow better and appear healthier than those with low pulmonary vascular resistance and congestive heart failure, the occurrence of increased pulmonary vascular resistance is an indication to proceed quickly with surgical correction of the defect. (Not sure if this will be the case for Bennett, again, only time will tell)

Repair of the atrioventricular septal defect lowers the pressure in the pulmonary artery and allows these muscles to relax before they become permanently constricted.

These type of defects will never close on their own and will always require corrective surgery for treatment.

Most patients require 2-4 days in the Intensive Care Unit after repair of a complete atrioventricular septal defect, and a 5-7 day hospital stay. Several reports suggest about a 90 percent survival after this type of surgery, but more recent experience is in the range of 97 percent.

So there you have it. We're hoping and praying that Bennett's heart will be healed because we believe God has the power to do anything but if it is not God's will than we pray that he will stay symptom free and can have is heart surgery some time in August, before cold and flu season starts.

Please continue to keep little Bennett in your prayers and that he can grow strong, eat well and come out of all of this a healthy and happy baby. As always, we appreciate your thoughts and prayers for our family!!


  1. Adrienne - he is absolutely precious. I love the hair!! Happy to hear he is giving you some long periods of rest and sleep. Miss Ellie is doing the same thing. Yeah for nursing going so well. Matty did great with nursing as well which also surprised me given what everyone said about the low muscle tone and his extended stay in the NICU.

    Keep the pictures coming! I can't get enough of your cutie pie.

  2. Bennett is adorable! That is great news that he is eating and growing well.
    Lindsey didn't have complete AVSD but had 2 ASDs and a large VSD. ASD already closed and still waiting on the VSD-fingers crossed.
    Pumping, cleaning, bottles, definatly such a pain. WTG, Bennett keep it up. Looking forward to many more sweet pictures.

  3. He is just so stinkin' cute! It is so good to hear that he is eating well so that he can get big and strong. We will pray for a smooth ride for his heart.

  4. First off I have to say those pictures are adorable! I don't have any personal experience with heart issues but I've read so many great stories of how quickly babies recover and thrive. I'm sure Bennett (love his name btw) will be just fine even if surgery is the route he has to take. I'm so envious you got to take Bennett home so soon (Kenneth was in the NICU for over a month after he was born). It looks like your family is off to a great start. Oh and that's too funny about Harper and the 'baby's toothpaste'.

  5. He is adorable!!!! I can't get enough of his hair. I hope you are doing well. Can't wait to see this little guy grow and develop.

  6. What a sweetheart!

    Hang in there - I know all this talk about the surgery is worrisome but these surgeries are done all the time and he is in good hands! He really is absolutely beautiful! And he has two big sisters to look up to, - wow, what a blessed life he will have!

    So glad to read that you are all doing well.

  7. Adrienne, he is gorgeous! I am thrilled to hear that he is nursing so well and that your first week together has been so great. These are the sweetest times...

  8. I pray God continue to bless your beautiful family. Bennett is adorable. I can't believe how much hair he has wow.

  9. Bennett is such a BEAUTIFUL baby!. Thank you for sharing :)

    Praying for Bennett to continue to grow HEALTHY and STRONG ~

  10. OI!!! Isn't he handsome! All posed for his picture, pondering the meaning of life perhaps. Wondering what he should be when he grows up? Rocket scientist or aeronautical engineer? hmmm ? <3 Much love and kisses to you Sir Bennett! Glad to see you are doing so well so far my dear! Be sure to give mommy lots of sleep and lots of love. Keeping you in our hearts! Love Hunter and Jess

  11. Adrienne, he is just DARLING!!!!!!!!!!!

    Okay, I know everyone's experiences are different, but Benjamin was a MUUUUUCH better breastfeeder than Andrew ever was. In fact, as a 13-month old, he eats better (and sometimes more) than 3-year-old Andrew.

    Also, even though B didn't have an ASVD (but a VSD and an ASD, which are just two separate, unrelated holes), he never went into heart failure before his surgery at 5 1/2 months. We sometimes saw a *little* blue (we notice it now more in old pictures but didn't really notice it that much then), but he never got lethargic or sweaty or had trouble eating b/c of it. He was on Lasix for months before his surgery. He was in the PCICU for three nights and on the floor for four more nights before we went home. His surgery was at the very beginning of October last year.

    Seriously, he looks so adorable in that picture...I love it! So glad you're doing well. :)

  12. Bennett is so cute! my boy who also has ds is 4 now! and i have picture of him in the exact same position than your picture lol


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