On Saturday, December 5th we brought our kids in to see Anna for the first time!! They were very excited to finally meet their baby Anna! Jude had lots of questions about what everything was for and Kaelyn was just excited to pat and say baby Ee-nna over and over again! They also got to decorate Annas windows with lots of Santa stickers. (The reason this was their first visit is I had to catch up on all their vaccinations and then wait 2 weeks for the incubation period to be over. I never thought we would be here this long, so I never bothered to take them right away to get their shots!)
We were also able to attend the Grimsby Santa Claus Parade and enjoy some time with the kids and some family!
Anna brought in a special treat for the hospital staff :)
Bright and early on Monday morning, Ryan left to go to Texas for business. A trip that had been put off since September already. They continued to wean her off of fentanyl slowly and by Monday she was completely done it. She was quite fussy and unsettled so they started her on withdrawal doses of morphine. She had also reached her full feeds amount (all being done by pump into her g-tube). So they started fortifying it again to try get her to gain weight well. Her PICC line also clotted, so they had to pull it out. This was ONE DAY short of when her antibiotics were supposed to end. Thankfully they just decided to end them then - so she didnt need to be poked again.
They also did an ECHO on Monday, so Tuesday morning the cardiologist was up to discuss Anna. They are trying some medications to slow down the shunting through the PDA. The ECHO showed considerable shunting, especially when she is upset. So she started on captopril (a high blood pressure med) and lasix (a diuretic). They weaned Annas CPAP peep down to 6 and she tolerated that well. Anna again was quite uncomfortable and mad.
On Wednesday, I had a thought that maybe Anna was so uncomfortable from the fortifier that they were adding to my milk. So they went down to just my milk again for the day and just a few hours later - she was like a different baby!
Thursday morning Anna made the change over from pressure support to just a humidifier! She did so great! The humidifier will be a daily part of Annas life. Our noses heat and humify the air we breath - since her nose is bypassed, she needs the air humidified for her. This is done by a heated humidifier or an HME (Heated Moisture Exchange). She is still on 30% oxygen right now - they will hopefully decide to wean it soon and then she can try out an HME.
They tried to add a different kind of fortifier to her feeds again - hoping it works since she does need the extra calories!
They also finished weaning her off morphine today. Since we have figured out it was the fortifier making her uncomfortable, not pain or withdrawal.
Her brother and sister also got to come for a second visit with Anna :)
On Friday, Anna was unsettled and uncomfortable again, so we took her off the other kind of fortifier and decided to leave her on just my breast milk over the weekend (yes - I am still pumping!).
Kids were playing hospital. Lots of babies were sick.
On Saturday she got to try out a swing for the first time :)
Ryan and I did CPR training on Monday so we are prepared for if an emergency arises while we are at home. The Orthopedic doctor came up and taught us some exercises to do with Anna. It's important to keep stretching her and ensure she is working all her little muscles. They are also not planning on intervening for a couple more months for Anna's hip locations. I helped with her trach change as well - another skill we need to master. It was also decided to try start Anna on Neocate Fortifier (added to my milk for extra calories) - hopefully she tolerates this fortifier better than the other ones! This is a real pricey formula, so I am happy I have managed to stock up 8 cases of my breast milk! Anna won't need to go on straight formula for a long time. I plan to continue pumping until she is ready to come home and then I will stop - just because I am sure I won't have time!
Anna was 100 Days Old on Tuesday! We also said goodbye to Anna's buddy Caitlin who moved to a different hospital. They started to wean her oxygen by 2% a day. She is down to 28%. Cardiology said PDA was more of an issue than PPHN so no reason to not start weaning oxygen. I left a little early as Kaelyn took a tumble and needed a trip to the ER to glue to head together.
On Wednesday Anna got a fancy mamaroo to use! Her buddies Charlotte and Spencer both went home, which now means Anna is the oldest in the NICU by about a month! They again weaned Anna's oxygen down, to 26%, which she tolerated great! It has also been an ongoing question to whether or not Anna can swallow and feed orally. She hasn't had much oppurtunity to, because anytime she is on a pressure supported ventilation, she cannot oral feed. It was decided to start her out trying some non-nutritive feeds nursing with me. Let's just say she has some learning to do ;) That afternoon I had a family meeting with Anna's team to just make sure we are on the same page for working her toward home. At the rate we are going she will be home by the end of January (possibly as soon as mid January). It is exciting to have an end in sight! We had been expecting that she would need her spine untethered before we went home, but Neurology decided it was better to wait until she is a bit bigger. It is tentatively scheduled for the beginning of March.
We had our first trach training class on Thursday. We have a few support people training with us, so we have some babysitters, etc once we are home. The idea of these classes is to practice, practice, practice until it all just comes naturally. Anna's oxygen was weaned again to 23/24%. She had a renal (kidney) ultrasound done which showed the left kidney still is not draining very well (a little bit worse than last time). For now, they will just be watching this every couple months, since her right kidney works perfectly. She also had another ECHO done which showed her PDA was smaller and her PPHN was gone. This is encouraging news! At some point she will need to have her PDA closed, but as she gets bigger there are more options that are less invasive, so we are hoping we can hold off on this for a while.
Room Air on Friday! Anna is down to breathing entirely on her own without any extra help! She got to try out an HME (Heat Moisture Exchanger), which is just a small filter that fits on her trach. We were able to enjoy the lights at Riverside Park in Guelph with some friends! Kids loved it!
We got to go for our first walk! We got to go all around the 4th floor (usually you can do more of the hospital, but during RSV season, it is better to just say on the 4th floor). I have been continuing to try nurse her every day at least once and it has continued to be a struggle, but I was able to get her latched onto me (without a shield) for the first time today! We were able to enjoy the afternoon/evening opening gifts with my family! To say Jude was excited is an understatement...
All ready for her walk in her "It's Meow or Never" Shirt that suits Anna to a T
Ryan was able to get some good practice this weekend on Anna's trach care. I have continued to do it every day, and am feeling more and more confident.
Anna's Christmas Tree with ornaments made by most of her cousins!
I was able to do my first trach change on Monday with the help of the RT (respiratory therapist). Typically, you always try to do the change with 2 people since it makes it much easier. We will be taught how to do a single person trach change as well, in case the occasion arises.
Anna finally fits the outfit I bought when I first found out I was expecting!
We are very excited at the progress we have made in the last 2 weeks! We can see the light at the end of the tunnel! Please pray that this progress continues so we can take our girl home soon! The only thing holding us up at this point is the trach training and getting in all the equipment we will need to take her home! Please pray she continues to grow! She has been hanging out around 7lbs the past couple of weeks, but is starting to consistently gain now!
"Praise the Lord! Praise God in his sanctuary; praise him in his mighty heavens! Praise him for his mighty deeds; praise him according to his excellent greatness!" Psalm 150:1-2
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