Updated: Dec 27, 2019
Such a big week! Brandon and I have really worked ourselves up waiting for this week to come. The big wean off of milrinone. So many answers will be determined this week. After the last failed wean from .75 to .5 of milrinone, I have been not very optimistic about this wean. But Noah is in a much better place now and we are all hoping that it sets him up for success!
Stress.... boy have Brandon and I had a lack of sleep, self-care, and STRESS. We have really stressed about this wean and every little change can set Noah back. Each time we have to leave him it seems like that is when he throws up more, gets fussier, etc. So we have really tried to not leave him at all. But.. then it all caught up with us. Brandon and I both were not feeling well Saturday and the ICU advised us that we shouldn't be around Noah and should probably go get tested for flu, strep, and RSV. So home we went, I tried to sleep although I found myself wanting to call the nurse every 30 minutes but we were both able to catch up on some much-needed rest. Then we landed in the ER Saturday night just to make sure we didn't have anything serious we could pass on to Noah. Luckily all the tests came out negative, but Brandon and I still needed to feel 100 percent. Being away from Noah the entire weekend and knowing he was alone was so difficult, but we didn't want to take a chance with anything. Even a simple cold could be fatal to him right now.
The hospital has been on visitation lockdown since November 1st due to cold and flu season and this will remain the same until the end of the flu season in March. This means that at the beginning of this hospital stay we had to fill a form out with 1 person that is allowed to come whenever they want and stay at the hospital, and no other visitors are allowed besides us and that one person. It's hard to be so isolated, but we understand the rule. Security doesn't give any leniency either. So we had to choose wisely. Someone that could and would come frequently, is willing to stay the night with Noah, and relieve us every once in a while. My mom is a saint and has come every other week or sometimes weekly from Florida to stay at the hospital with Noah and is used to handling him with all the wires. She stays for a couple of days to give me a break but also cooks and fills our freezer up with frozen meals, deep cleans the apartment, laundry, the whole nine... I literally can't imagine what we would do without that help and the help/meals from so many other people, we are blessed.
Sunday: B and I didn't see Noah until later that night just to be sure we were feeling 100 percent. That night my mom and dad drove in from Florida with Sadie, our sweet pup that we haven't seen since mid-July before Noah arrived, to stay with us for the week and have an early Christmas.
Monday: Noah was vomiting a lot, which can be a sign of worsening heart failure. It's so hard to watch him get sick so much. Brandon flew out of town bright and early, which was difficult for him knowing how fast things can change this week.
Despite the frequent throwing up, the doctors wanted to continue with the milrinone wean. So we started right after rounding with the doctors and brought the milrinone down from .75 to .5... then the wait. Watching his numbers constantly, holding our breath as the day goes by, making sure he is not more irritable, breathing faster.. all the things.
Typically you do not start seeing the effects until about 6- 24 hours later!
My family came in and had a Christmas dinner at our apartment. We were just missing Brandon but it was nice to have some family time.
Tuesday: The first wean thus far has been a success. His NIRS are stable, his heart rate is great, and his vomiting hasn't increased, this is GOOD! This is better than the last attempt to wean.. as he has to be places back to .75 because he deteriorated very fast in the middle of the night.
His BNP (a number that indicated how hard the heart is working and can measure heart failure) was increased but not too much which is good. Currently, it's 340 which is still elevated, but it's certainly better than the 4,000 BNP the day of the Glenn. He will always be in heart failure, so we just have to make sure we can medically manage it at home and he will not rely on milrinone which can only be given in a hospital setting.
So today we will continue to watch and make sure he keeps tolerating the change... and tomorrow we will wean a little bit more. The weans from here on out will be by much smaller dosages because they have a larger impact and the biggest wean this week will be from .1 to OFF!
I know, lots of medical jargon.. but that's all I know these days.
Noah had a pretty good night but was up often and ended up vomiting a couple of times. His numbers are looking pretty stable which is so reassuring.
We started the morning bright and early with an echo. The doctors came in and turned down the milrinone to .375 around 8 am. They did let me know that we will probably go even more than 48 hours because this may affect him more than the last wean, even though it's a smaller decrease. If there is any intolerance, we will start seeing those effects later tonight- but we are hopeful since he has been taking this like a champ thus far.
He had Physical Therapy which he screamed the entire time and eventually threw up, but then he got a surprise visitor.
Santa Claus! It was a sweet moment, as Noah looked up at Santa's big white beard and had an ear to ear smile.
It suddenly hit me. Outside of this hospital, that we have called home for months, the time keeps ticking and the world continues moving on. We are stuck here, in this room, with the beeps and the pokes and the uncertainty; this is our world.
With the holidays less than a week away; that warm, cheery feeling has been absent. Every vision of what I had imagined Noah's first Christmas to be like, is different. But he is here and for that we are thankful.. and although this Christmas is different, we will embrace it and remember what it is all about. A time of God showing His love for us.
So I will sit here, rocking Noah and thank God for this perfect Christmas Gift that I have right here in my arms.
And we will continue to pray for some brighter days, outside of these walls. One day.
And after Santa left, he went on to the next patient.. and then the echo tech walked in and it was back to our reality.
The doctor reading the echo from this morning requested another one with more photos of the arch in the heart. I am not sure what that's all about but hoping we get good news. This momma can not handle any more hiccups. (I should have the results in a couple of hours). I hope yall enjoy these photos as much as I do. Noah almost ripped Santa's beard out!
Noah‘s Echo showed that there was no change!! No improvements, but not Wiese and that’s amazing news! His function remains moderate to severely depressed and his tricuspid valve is still moderately to severely leaky.
This evening his heart rate has started to trend up and his NIRS have dropped a little. We will continue to watch him very closely and I will update everyone. ❤️❤️
Overall Noah had a really good day on the .375 milrinone. His BNP came back at 200 in the morning! This is the lowest I have seen it this hospital stay. Although it's not a huge change from 340, it's not an increase and that we will take!
But we had a rough night. He kept coughing up mucus and spit up multiple times. Typically he sleeps pretty much through the night, but last night he was up every hour.
He has also lost about 10 ounces in 2 days. A sign of heart failure or your heart working too hard, is not gaining weight. We will watch this over the weekend.
High blood pressures are much higher than they want so they are continuing to go up on his captopril (BP Medication).
No more milrinone weans until he is more stable and gaining weight- so maybe this weekend. This waiting is so hard!
Yesterday he had such a great day and he even tasted his first purée! Occupational therapy said that it was on the earlier side to give him purées but since he is getting an oral aversion to the bottle it wouldn’t hurt to try yummy, different things for him to eat. He loved it!!
Noah’s pressures were still really high last night so we continued to increase his captopril. Today all his numbers look great and he gained nearly 10 ounces back from what he lost. Our attending for the next few days is the head honcho for Single Ventricle, and knows her stuff! After chatting during rounds she asked what I thought and if I wanted to wean the milrinone more today, HECK YES. I think Noah is in a good place and can handle a small wean, and that puts us all one step closer......!!!!!
So tonight we will wean from .375 to .25 and the effects should begin to show tomorrow morning.
Sunday: We didn't make any changes Sunday and everything was status quo which we will never complain about!
Monday: Noah was spitting up quite a bit but otherwise was SO smiley and happy. We discovered he is not a fan of carrots and he is officially a big boy and sits in a highchair!
Our night attending was our Primary Intensivist which we advocated for after being here for 3 months and having way too many cooks in the kitchen. We chose him, and he agreed to be Noah's primary and deal with his two crazy parents that are on top of EVERY move! He always has the final say, and we trust him, with everything. Even though Noah was getting sick a lot everything else was pretty stable, his BNP slightly increased but clinically Noah's looking like a "peach"! So we all decided it was time, and that Noah was ready for the next wean. Around midnight we took the milrinone down from .25 to .175 so that the effects would start to show early morning. If he does well by the end of day tomorrow.. then we will turn it OFFFFFFF and we may just get a Christmas Miracle!!!! Noah has already come so far and we are so proud of him!
Tuesday: It's still early but as of right now things are looking pretty good!!! We have so many feelings, but the thought of possibly going home soon (in 3 weeks-ish) is just so amazing. We are trying not to get ahead of ourselves, but it's just too hard to not be SO EXCITED. We have been looking at baby furniture for Noah's room which right now is still my office!
We have a lot of work to do because right now Noah is not eating anything by the bottle and he's only taking a pea-size amount of purees, and they do not discharge patients with an NG tube. We will need to decide if Noah doesn't pick up the oral eating if he will need a Gtube so that we can go home, however it's not the route we want to take. BUT the fact that going home is even being talked about... is just amazing and we are so thankful.
We turned OFF Milrinone at 11 PM... WOW- It is still surreal.
Wednesday: It's Christmas!!! Noah was very smiley and as we woke up around 8 it was the time that Noah would start to show any signs of heart failure from the milrinone being turned off! We were walking on pins and needles staring at the monitors, his breathing, his lab results. There were some moments that we were feeling anxious as numbers started to change... but they eventually got better! Doctors would like to see him "stable" for about 72 hours off the milrinone.
"Santa" came to drop off a stocking that had some personalized items for Noah. The day felt weird, but we enjoyed it, spending time with our greatest gift yet, watching Christmas movies. It's not where we wanted to be for Noah's first Christmas, but we are thankful for so many things.
Thursday: A BNP (indicates how hard his heart is working) was drawn which was a little elevated than the previous one, but not enough to be worried! He also had an echo that remained stable, still moderately depressed function and moderate tricuspid valve regurgitation. Of course, we want it to get better, but we are just so relieved that it is not worse off milrinone. This is such a huge step in the right direction!
All of his vitals look great and clinically he is looking beautiful.
Friday: Today- December 27th was the day Noah was originally scheduled to have his Glenn surgery. Boy oh boy, did things not go as planned. Looking back, I still can not believe what Noah has been through and even a month later, we are trying to process everything. We have spent a total of 113 days in the hospital since Noah was born. But today I feel thankful and remember just 5 weeks ago, I wasn't sure if we would have more days with Noah. I prayed for better days to come and here we are, Noah is off milrinone and there is a chance we can go home and manage his heart failure there.
Today, Noah will be getting his PICC line removed which he has had since the end of October. THIS IS HUGE. The doctors believe he is stable enough to take it out and will continue to monitor him in the ICU. We are currently waiting for the VAT team to give him an IV just so that there is access in case of an emergency and Noah likely will need a blood transfusion in the next few days too. Once we have a good IV, we are saying adios to the PICC. Monday we will be getting a lot of labs and if things are continuing to be stable we will transition out of the ICU to the "step down" unit. There we will likely stay for a couple of weeks as we are working with Noah on feeding which hasn't been too successful but we are making baby step progress!!
Brandon will be headed back home to Austin to get the house ready for baby Noah to hopefully be home in the next month. This means getting his baby furniture and nursery set up which is something we decided not to do before he arrived since there were so many unknowns and my biggest fear was coming home to a nursery with empty arms.
Thank you all for the prayers and for everyone that has reached out!! This will be the last update for this blog post.