Thursday 3/15 – Cardiology Update

When you have to go to the doctors office and there  is a woman in there with 3 children who all have rashes, coughs and fevers RUNNING EVERYWHERE in the entire waiting room, you gotta cover your cardiac newborn up to protect them! What a big, fat bummer for that mom having 3 sick kiddos, I totally feel for her, but goodness, there is a well side and a sick side for a reason, please respect the boundaries because while we are doing well and Gideon is ROCKING life right now, a cold can still kill him and we try really hard to avoid germs and being around anyone who has been exposed to any illness.

We got to see our cardiologist today for the first time since Gideons’ birth. We had been seeing a different cardiologist before birth who we thought we were going to stick with until we met him. Sadly, he wasn’t available for our last appointment so we had to see another one of his partners and had to wait until today to see him. He was worth the wait though! What a great appointment we had!

Medically, Gideon is doing fantastic! His blood pressures are so good, we are discontinuing his cardiac medication. That was a shocker! Due to the size of his liver and the big changes we decided to make today, we are keeping him on the Lasix for a while to help keep him and make sure that if he has any negative symptoms, they are from the nutritional  changes not from going into heart failure. Eventually,  he will go into heart failure when his heart can’t support his growth and he outgrows his pulmonary band but we will be having his 2nd heart surgery either just before or right as those symptoms start so hopefully that’s not for a while and we will be ready for surgery to correct it before he really has any symptoms.

We discussed his nutritional needs and how our plan has developed so far. Our goal is to pull the NG tube prior to his next surgery so hopefully he won’t have to have that placed in again after the surgery. He told me to just pull it now. WHAT!?!?!?!?!?! Seriously!?!? He takes 3 full feeds of fortified milk per night from the tube, that will be a big change in calories to drop a night time feeding and change them to breast milk only, that’s too big of a change for me to be comfortable with. Not the cardiologist though. He said if he starts losing weight or goes a week without gaining we need to replace the tube and do more feeds that way but if can maintain at least 5-10 grams of weight gain per day without, I can basically do whatever I want with feeding him on any schedule I want and do breast or bottle or both fortified or not. He knows I’m weighing him constantly and monitoring it very closely as I do with the meds to stay within the guidelines so I can cut back on that now and weigh once per day just to track his progress. Apparently he trusts us a bit to make good decisions for Gideon and is sort of giving me free reign within a set of boundaries. It feels good to be trusted with his care and reassured that we seem to be doing everything very well for him this far.

Sadly, I made the mistake of not eating because we rushed out of the house this morning in a hurry then raced to our first appointment and go out of there so early, we were able to bump up the 2nd appointment an hour so we raced to that one too and didn’t get a chance to eat in between. I seriously need to get some more of the Slique bars to keep in my van, they are delicious and nutritious, I lived off them in the hospital daily and will do it again when we have surgery, I need to keep a box in my van too. So I got a nasty migraine. After 1 quick stop in a parking lot for me, I did make it home before hurling my guts out from the migraine then I devoured a big Jersey Mikes sandwich for lunch. It was delicious and made me feel so much better. I was still dizzy, tired & hurting though so Gideon and i rested for a while. Well, we laid down at least, he was bright eyed and bushy tailed and ready for a party now that he can breath much better with the NG tube and the crusty boogers stuck to it. LOL.

He is 7.89 lbs now which Dr said is about the 5th percentile for his age. I’m surprised it’s that low, he seems like a normal sized baby to me now but he is, for a newborn, not for a 2 month old. :) He was only in the 2nd percentile last month so that’s great growth and they are very pleased.

Look at that sweet sticker free face!! I need to spend some time with the adhesive remover tonight and essential oils to help his skin a bit but what a cutie!! Not having that cord hanging, dangling, and catching on everything from him is so nice! I hope he keeps eating better and better and we can keep it out!

We discussed the surgery plan for his next surgery. “The big one” they call it. Because the pulmonary band the placed in him is so big, he may get a couple extra months out of it. He said we may even make it to 8-9 months before his next surgery if his cardiac output and pulmonary status remain strong. So we could be looking at surgery anytime between now and September or October. Ideally, the want him at least 12 lbs and at least 4/5 months old but the doctor thinks he will hit both of those milestones and still have some life left in the pulmonary band before he outgrows it so we will have a bit more time to wait and plan for it. The risk of the surgery declines greatly every month and every lb he grows from about now until 12 lbs & 6-8 months so there isn’t really any point in waiting beyond that to have the surgery as the risk won’t decline anymore so we will do in late summer or fall depending on the status of his band.

Prayer Requests:

Praise for his medical status so far! So many answered prayers, we are so thankful to God for his provision and to all of you for your help and encouragement along the way. The meals we have received have saved my behind … well… pretty much 3 times per week every week when they arrive. We are so blessed and thankful and praise God for what He has done, especially through all of you!

Prayer for Gideon to continue to improve with his oral feedings. We will do a swallow study soon and hope the results are that he can continue breastfeeding and we will get into a new, good routine having taken out the NG tube and reducing the calories he gets that he still gets plenty of nutrition to grow and eats WELL. He still tends to tire out quickly and get lazy which causes him respiratory distress and we can’t have him aspirate so we have to be very careful about his oral feeds. He needs to gain strength and stamina with his oral feeds. We will also be spacing out his night time feeds to try to help his tummy stretch, they say if he goes longer without eating at night, he should eat better during the day so we will see how that plays out as we adopt that and adjust his schedule.

Prayer for the rest of us, we have all struggled in some ways. Bo & I together in marriage have had our bumps, each of the kids as they have quickly become much more independent out of necessity and haven’t had the same amount of attention they were used to, continued health for all 6 of us. We are a bit needy right now but we are handling it well for the most part and improving each day. I’m keeping up on more and more stuff around the house (weekly now, not daily anymore and it’s with help) as well as starting to eek in a bit of school for the kids here and there, having more fun with them and hopefully I’ll be able to get some more sleep in the near future too which will help a ton.

Baby David who I mentioned is still in the hospital waiting for a heart transplant. He is still in critical condition and needs prayers and a transplant. Please keep him in your prayers.

My family (cousins) are planning the funeral for my uncle, my whole family could use some prayers as they walk that out.

Thank you for walking this out with us, for standing with us in prayer, continuing to check on us and wait with us as we prepare for Gideons next surgery. The cardiologist is hopeful that our next surgery will have a quicker hospital turnaround time with a longer recovery time. Gideon will be much bigger and stronger to withstand the next surgery so it should be much easier for us to manage our hospital time next time with our 3 big boys at home and I have ideas for how we can make it easier on all of us next time. Just knowing that it’s coming and it not being a total shocker will be a big help. We will keep you posted about needs and how you can help if you desire to as the time arrives.

Blessings to you all!
Kari