Wednesday, April 27, 2016

Day two of NICU

I'm going to try my very best to keep these updated...I want Shea to know his story and I definitely don't trust my memory.

So here we go!! This am Paul and I spent about 2 hours in NICU with Shea.  Shea is doing super well. (Pulse ox levels are in high 90's!) We have talked to cardiologist today but he has yet to meet with surgeon (Dr. Maxey) and another surgeon that deals only with catheterization(Dr. P) to come up with next steps. We could still have the bt shunt which is open heart surgery. But we possible could have a stent which would be done through a catheterization. The biggest problem right now is that the pulmonary valve is too thin. So they could put a stent in to help open up the pulmonary valve. Dr. P Wil be the one to really make this decision  based on Shea's echo at birth. (Lots of info I know!)  We took lots of pics this morning and will work on getting them up on the Sweet Baby Shea  Facebook page.

Paul and I took his temperature and changed his diaper.  Our day nurse, Lauren, fed him but we were able to assist and next time we will do and she will assist. He will be eating 10 ml every 3 hours.  At 11am he drank 2 ml from bottle and then the rest was fed to him through his ng tube.

I definitely pushed myself really hard this morning and paid for it in the afternoon. At 11:30 there was an admission coming, so we had to leave.  Good time for everyone to eat and for me to get some rest. I didn't nap, but was able to rest in bed, eat some food and recap with my mom, brother and dad. They have been such  a blessing these days. My mom especially has been helpful with helping take care of me and my basic needs: peeing and getting dressed. I feel like I'm 2 again with these needs.

At the 2pm feeding we checked his digestive system by pulling back on the ng tube, only 1.5 ml came back and we refed it to him. The best news here was that he digested 8.5ml from his first feeding!! Paul fed him all 10 ml in his bottle. Y'all I already knew that Paul was an amazing husband and I knew that he was going to be a killer father...but man, he is more than that.  He just loves his son and is wonderful with him. I was so impressed with the feeding! 

I went back upstairs to rest for a little and wait for our pastor to come. Our church has been praying for us for quite some time and Pastor Paul has been so supportive. He just has a great way about him. We prayed over Shea and Paul prayed over us. I have been strong only because of my faith in God, but no doubt it's still hard. I try to remember that He's got this. He knows the master plan and I have to trust it. Having Pastor Paul pray and talk with us just reassured me in all that!

I went back up to rest some and try to pump. I haven't been doing a great job at having a pumping schedule, but Shea needs it!  I was only able to pump a little bit out. But some is better than none!  My friend and photographer Lora was heading in to take pictures for us...so I made my way back down to NICU.  Our mutual friend Rebecca came too so she could help watch Loras adorable little girl! And of course see Shea.

I sent Lora and Paul back to NICU first. I didn't see any pictures, but I know they are amazing!!  I was able to go back and the three of us had some pictures including diaper changing ones and feeding ones.  This time I did the feeding! During that 5pm feeding  only 0.5ml came back in the NH tube...my kiddo is being a Rockstar at feeding!!!  We were able to get him to eat all 10 ml again by bottle. ..so exciting! 

After everyone got to see Shea and pictures were done, Paul went to dinner with his childhood friend who only lives 5 min away from the hospital. My family got me up to the room and settled. I sent them home. We all needed a break from this stressful time. While I can't physically leav, it was nice to eat dinner in peace. I did end up talking to my super dear friend/sister Emily for a long time. I escaped my world for awhile. This road is tough but definitely not lonely!  And sometimes it's nice to remember that the world is turning out there and others have struggles too.

When Paul came back we were going to go down for feeding but there was another admission. So Paul and I talked, caught up with each other. (Get out the tissues) He looked me in the eye and told me "no matter what happens with Shea, tomorrow, next week, in a month,  these last 36 hours have been amazing."  I agree. We are just totally in love with our son. We have had two great days so far but we know it won't always be like this. We know that tomorrow could be worse. That there will be some day that we are really scared and worried coming sooner than later.  We know a surgery of some sort is coming this week or next. But right now we are just enjoying every minute.

9pm we called down and admission was open...so down we went!  When we walked in Shea was all super cuddly in his body pillow as shown in his picture. We loved on him and then Paul helped me pump. Being near him really helped!! I was able to get 8ml!!

Not going to lie, it's totally weird typing that to the world, but if you have been reading the blog for a while you know that I tend to overshare. If you are new, please remember that I started this blog to document our journey to pregnancy so I could process everything. It has been such a healing/coping tool. And I have realized through my readers it has helped so many others through their process. If you know me at all, I am all about helping others. (It's killing me to ask for so much help here and not be the one helping them!)

Okay back to feeding our visit. While was washing out all the pump tools, Shea opened his eyes. This isn't the first time I've seen his eyes, but he was so awake, I stood up and got super close to his face and started talking. Man oh man, that little boy...just pure love. He and I talked for 10 min, eyes wide open!  Then it was feeding time. Tonight he was awake and hungry. But only took 5 ml. Listen first day on the feeding job...he has taken a ton of milk and kept it down...we are super proud!

Continued thanks for all the prayers, love, support, and messages. We are holding it together and so is Shea!!  So while 6am on Thursday approaches, I will go ahead and post this!  Sometime in the next few days I will post our induction/ Shea's birth story..I will need help as there were drugs involved and I need helping remembering it all in the right order. Love to all!

1 comment:

  1. Mackenzie! First off....he looks absolutely AMAZING. Just the fact that you have had this much time with him so far without intervention or a ton of breathing assistance is nothing short of awesome. You guys deserve every delicious second you have had these past few days with your little man. And love what Paul said about not knowing what the future holds but staying as present as possible to enjoy all of this -- kudos to you both for living in the moment. And from one heart mom to another the feeding thing is HUGE. I love that you have detailed every last drop because it matters. Man-o-man does it matter. Feeding is very taxing on our heart babies and Shea like you said is just rocking it! It's no small thing and I am SO excited about how much he has been able to keep down I can hardly sit still!!! I'm also glad you are aware of just how much pushing yourself can really backfire and it is SO HARD to stay aware of that and keep some sort of mindful balance around when you need to reign yourself in -- it's so hard. Your mama bear instincts are visceral and it's really really challenging to treat yourself as a patient too, when your natural instinct is to focus 150% on your baby. But you really do have to let the people around you take care of YOU while the doctors and nurses take care of Shea -- at least until you've recovered from labor and delivery. A healthy mama makes for a healthy and happy baby so take good good good care of yourself during this unbelievably stressful time. It's hard to wait and wonder about next steps but if you guys keep the kind of composure and amazing outlook on things like you are doing now? You can face anything and everything that comes your way. You are an incredible family and the Foley's in Boston are thinking of you and sending positive thoughts and loving support every minute of everyday.

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