December 4 - December 20, 2015

Well - its a little long winded... but here is what we have had going on in the last couple of weeks.

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

November 22 - December 3, 2015

I am WAY overdue to getting a blog post up for all of you! It has been a busy couple of weeks!

Anna remained intubated and sedated until surgery on Tuesday, November 24. It was scheduled to be anytime after 3 pm, and after waiting and waiting - we finally headed down around 8pm. It took another hour for all the OR staff to be ready and she was wheeled into the OR around 9pm. At around 10pm the general surgeon came and said the g-tube placement had gone well and ENT was starting the bronch scope and tracheostomy. The ENT doctor came out at about 11pm to say he was finished. During the scope he found that she had posterior tracheal-malatia. This means that the back of her trachea bulges into her airway and cuts it off. This diagnosis may get better as she grows (and her airway grows), but we don't know for sure and we don't know how long it may take.

With the tracheostomy put in, we now need to get trained on how to take care of her with it. This involves a number of weeks of classes and then also practicing the skills on Anna. It typically ends up being about 2 months from the time the trach goes in to going home, so it is quite a long process!

Anna was very sedated (even paralyzed for one night), to keep her from moving as keeping the trach in for at the least the first 48 hours is very important! The tracheostomy is quite a painful procedure to heal from, so her sedation/pain meds were quite high for a few days. She was bloated going into surgery and she only became more bloated after surgery! She was holding onto an extra 600+ gram of fluids! Our poor puffy baby!

We found that Anna needed more oxygen than we thought and was desating fairly often. They were a bit concerned about her heart, so they performed an echo. From that, we found out that Anna had pulmonary hypertenion and that her PDA was larger than before and shunting a fair amount of blood through it. We are REALLY REALLY hoping that as the fluid comes off and the stress of the surgery fades away, so does her pulmonary hypertension, which in turn allows her PDA to close more. If not, she may need medication to reduce her pulmonary hypertension and possible surgery to close her PDA :(

On Saturday night we moved into our own private, bright, sunny, quiet room! Can you tell we are enjoying it! :)

Anna was awake on Tuesday morning when I came in. It was so nice to see her awake and alert again! Unfortunately she was also running a fever, had a high heart rate and also was having some more desating episodes. They put this all together and figured she had caught another bug, so antibiotics were started again (her CRP level confirmed this on Wednesday). Even though she had caught a bug, I would never have thought it! She was so alert, content and awake ALL day (and also stayed awake ALL night). 

She continued the awake pattern pretty much ALL day Wednesday. Her temperature and heart rate were both down to normal again, and she seemed totally back to herself. We enjoyed our FIRST snuggle in TWO WEEKS! (I think her mom needed it more than her, but we both enjoyed it :) Anna finally crashed that night and slept 9 hours straight!

We are very much enjoying that our girl is back to herself! On Thursday, she has officially lost all of her water weight and is back down to around 3000 grams. We had another snuggle and I was also able to give her a bath! I have been trained on how to do feeds and care for her g-tube. I am thankful that training for that has been easy and doesn't involve much, since the trach will require much more training!

She is still requiring ventilation help, but they are very slowly working on weaning her off. They want to do another ECHO next week to check on her PDA and pulmonary hypertension. Please pray that the pressures have reduced and her PDA is not shunting as much! Pray that she continues to heal and we are able to get her off all of the pain meds! Since she has been on it for over 2 weeks and it is a narcotic - the weaning process is slow (to prevent withdrawal symptoms).

In the midst of all this busy-ness with Anna - we of course have done some adventures with our other 2 munchkins! One of those adventures was our first big snow fall up here in Fergus (which has thankfully all melted again!)

Teach me your way, O Lord, that I may walk in your truth; unite my heart to fear your name. I give thanks to you, O Lord my God, with my whole heart, and I will glorify your name forever.

Psalm 86: 11-12

November 18-21, 2015

I spoke to my nurse on the phone at 7:30 pm on Tuesday evening who finally had the information that Anna's surgery would be on Thursday. At 2 am I got another phone call from the hospital. Anna's airway had collapsed again and they had to intubate her.  It was a traumatic intubation that took 6 attempts (2 nasally and 4 orally) because her airway was so collapsed. They ended up using a smaller tube and getting it in. 

I headed down to the hospital right away. When I arrived Anna was somewhat uncomfortable, so they started her on some sedation medication. As I'm sure she was in some pain and also we cannot have those little hands grabbing at her tube. She had a fairly quiet day although she does require frequent suctioning when intubated. They are questioning at this point whether it is a sepsis infection or if it was just her airway collapsing.

On Thursday early morning she needed a new iv site which only lasted a couple hours and she needed another new site. She had a fairly good day with small wake ups where she would look around and hear us talking. Her Crp level in her blood came back high, which points to an infection - so surgery is off until next week. Her bowel had slowed right down and near the end of the day she also had some blood come up her ng. This concerned them so they did an xray of her belly. It came back as not being normal. They put her on an antacid like medication to help settle her Tummy. They also decided to try put in a picc line, because they wanted to give her a transfusion. They were unfortunately unsuccessful with establishing a picc, but did get another iv line in. This allowed them to use one line to Give her plasma and blood. She looked a little like a robot since she needed both hands taped to boards to help them run properly and hopefully maintain them longer.

On Friday morning she was very puffy from getting all that extra fluid the night before. She looked a little like the michelin man - poor girl! She is peeing it all out herself and was looking better by the end of the day. They are presuming today she has a sepsis infection, although all the cultures came back negative. She needs at least 5 days of antibiotics before they will think about sending her down to the or. So we are looking at around mid next week. She is still being lightly sedated to keep her comfortable and had a good day. She was wide awake all morning long and then settled into sleep all afternoon.

Overnight on Friday she lost both of her hand iv's, so she had another iv into her head Saturday morning. It also did not look like it was going to last long, so they decided to try for a picc. Again it was unsuccessful :( - they did manage to get another iv in for the time being. So many pokes and prods for our little girl! She was running a bit of a fever in the morning, but just having her unwrapped helped cool her to a normal temperature. They are very slowly starting to introduce her feeds again (only 3ml an hour to start). She was otherwise content and happy - with some wake periods again.

Thank you all for your continued prayers! It's been another hard week! We just want you to know that we do read all the cards, messages, etc and appreciate them all (even if we don't get a chance to respond). Please pray that Anna will be well enough for surgery this coming week and that it will go well! Pray that our big kids will have a good week even though it is likely mom and dad won't be home much! It is such a struggle to find that balance of where we are needed most. Pray that the Lord will give us all the strength and comfort we need. This week has been tough and discouraging and next week will be another tough one!

Answer me quickly, O Lord! My spirit fails! Hide not your face from me, lest I be like this who go down to the pit. Let me hear in the morning of your steadfast love, for in you I trust. Make me know the way I should go, for to you I life up my soul.
Psalm 143: 7-8

November 11-17, 2015

They decided to give Anna one more chance off CPAP before committing to the scope. I'm not sure why - as it was very apparent to me she wouldn't be able to do it. I gave her a bath on Wednesday with it off and she was working to breath, just in those few minutes.

So Thursday morning they had her off cpap for 20 minutes before they put it back on. No surprise here! She has been on a cpap peep of 6 and sometimes a little oxygen. In the afternoon, the other ENT doctor came up and did a bedside scope. He agreed that she needed to be booked for a rigid bronch scope to see her entire airway.

Friday was a busy day for Anna! She started the day with a visit from her occupational therapist. Her muscle tone is very normal and she was very happy with how alert Anna is. ENT and General Surgery both came up a couple times to get my approval for the surgery. She also had a hip ultrasound and xray as they haven't been looked at since she was first born. They are just trying to decide when to start bracing/casting them.

Saturday and Sunday were fairly standard weekend days. Not much happens besides snuggles for Anna! She got some special first snuggles from her Beppe and Grandma!

Monday was another quiet day. I had a big long snuggle with Anna and waited (impatiently) to find out when her surgery would be. She had bloodwork done, so she is all prepared for surgery.

We started Tuesday off with a nice and warm bath and finished it off with a big snuggle! It was another quiet day in the pod. We were at home getting the kids ready for bed when we finally got word that her surgery will be Thursday at 3pm.

Please keep Anna (and us) in your prayers these next couple of days. We aren't sure what the outcome of the surgery will be. If she will need a trach or not. Please pray that the surgery may go well and the doctors may have all that they need.

I lift up my eyes to the hills.
From where does my help come?
My help comes from the LORD,
who made heaven and earth.

He will not let your foot be moved;
he who keeps you will not slumber.
Behold, he who keeps Israel
will neither slumber nor sleep.

The LORD is your keeper;
the LORD is your shade on your right hand.
The sun shall not strike you by day,
nor the moon by night.

The LORD will keep you from all evil;
he will keep your life.
The LORD will keep
your going out and your coming in
from this time forth and forevermore.
Psalm 121