October 25-28, 2015

Ryan and I came Sunday afternoon for our snuggles with Anna. She was quite relaxed and sleepy - but was still having moments where she would suddenly wheeze and really work to breath. 

On Monday morning I came in to a wide eyed little girl. They increased her cpap up to 8 as she had a rough night with 45 desats. They suctioned her nose really well as well and got out quite a bit. The respiratory therapist called it cement since it was so hard to get out! Anna's desats improved a lot after getting all that out. She was awake most of the day - but quite fussy and uncomfortable. They are wondering now if she is possibly having broncho-spasms and that is why she has these sudden moments where she works to breath, so ventalin has been prescribed on a "as needed" basis. 

I came in to find her back in a crib on Tuesday morning! Yay! She had a good night with only a few desats. They decreased her cpap peep down to 7 again. She is still having moments of wheezing, but not so bad that they needed to treat it with ventalin. She was again rather fussy in the morning, but settled nicely to sleep in the afternoon.

On Wednesday little Miss Anna was awake again when I arrived. She had a pretty good night and morning - but they did have to give her ventalin a couple times to open up her airway. This seemed to help settle her wheezing out. Throughout the day today, we have noticed that Anna is uncomfortable and desats close to the end of her feeds - so it is likely we are also dealing with some reflux. 

As we near the end of another month - we wish to say thanks to all those providing meals, watching our kids, cleaning our house and praying for us. Most importantly we would like to thank our heavenly father for providing us with all that we need! It is so up and down and we couldn't do it without the strength and peace that he provides! 

 "Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand."

Isaiah 41: 10

October 21-24, 2015

Wednesday was a pretty uneventful day. Anna was quite comfortable the last couple days and has been wide eyed a fair amount. We had a good snuggle in the afternoon.

On Thursday morning at 10am they extubated Anna. They had prepared for the extubation and started steroids to help with swelling before. She was very mad after the extubation and surprisingly noisy! Someone found her voice! It is still quiet but definitely louder than before. The only way she would settle down was for her mom to snuggle her. Her breathing was quite noisy (strider) so they gave her a dose of epinephrine and she settled right out and slept most of the afternoon. She did well most of the night - until about 3am when she became unsettled and they have her another dose of epinephrine.
The infectious disease team has been following Anna's progress and giving advice. Listened to some interesting discussions between them and my regular team of doctors and nurse practitioners. They decided on 14 days of antibiotics. It came down to Anna having either has tracheitis or pneumonia - but cannot rule out meningitis as they could not do a lumbar puncture because of her cyst and tethered cord (although it seems unlikely).

On Friday she had a bit of increase of breathing, so they increased the peep on her cpap. That seemed to do the trick and she was quite happy to sleep the day away. Unfortunately her hemoglobin had also dropped and she was very pale, so they decided to do another blood transfusion. Since blood can't go in via a picc line - this meant getting an iv line in. This proved to be a challenge again - after 3 picc nurses, a couple breaks and various pokes, a resident who seems to have a knack for it got one in try. Needless to say - Anna was not too happy. They decided to do a chest xray to see how her lungs looked as they were a little concerned about hyper inflation. She had just woken up and was mad during it - so the image wasn't great. The Dr and nurse practitioner were concerned that she had air leaking out of her right lung, but they wanted to redo the image to be sure. Thankfully it came back fine and her lungs looked no different.
They also started her on another steroid and since it often causes thrush - put her on nystatin to prevent it.

Ryan and I came together on Saturday and he got to enjoy some daddy snuggles. Her color is quite a bit better now that she has had the blood transfusion. They have weaned her from a peep of 9 on cpap down to 7, but she is still pretty wheezy. Anna seems to struggle with breathing positionally - which makes the doctors wonder if something is not developed or growing correctly below her vocal chords (as she has a scope down that far). As she continues to grow it could be causing more and more of a problem. In one position she will breath perfectly and in another she will continuously desat. She needs to be good and stable before they will do that scope to check to see.

Keep this little bundle in your prayers! Pray that she can fight off this infection completely and be back breathing with no support soon! This has been another trying week and we thank the Lord for being with us and giving us all that we need.

For as high as the heavens are above the earth, so great is his steadfast love toward those who fear him; as far as the east is from the west so far does he remove our transgressions from us. As a father shows compassion to his children, so the Lord shows compassion to those who fear him.

Psalm 103:11-13

October 16-20, 2015

In the afternoon on Thursday, they had to move Anna's iv line as it was starting to swell and had a terrible time getting one in. It took 8 tries and ended up being in her head. While Ryan and I went for dinner on Thursday night - Anna decided to extubate herself :S She was on cpap again when we got back - but really working to breath. They tried various different ventilation but she was working way too hard and desating often, so they ended up having to re-intubate her. They also had to move that iv line that took so many tries in the morning.

Friday, we continued to be under isolation as we were waiting for one more test to come back from virology. We also got the news Friday evening that they got a positive for a bacterial infection in her windpipe area. She started more specific antibiotics (instead of generalized ones). She also had an EEG done of her brain - just to make sure she is not having seizures. She is still needing to be suctioned often. After being restful all day again, she was unsettled in the evening so they sedated her again.

On Saturday Anna was wide awake when Lorissa came in the morning. It was SO nice to see her feeling a little better. Her last virology test came back negative, so we could lose the isolation gear! She was comfortable all day and didn't cause too much trouble until her iv started leaking that evening. They had to move it again - this proved difficult again and took 5 tries. Ryan stayed the night close by in case she was unsettled - but she finally had a good night and did not end up needing to be sedated.

On Sunday, Ryan was with Anna all morning and she was settled (besides needing occasional suctioning). The nurse became concerned when she could not hear breath sounds from her right side. She had been positioned on her right side more because of the placement of her iv in her head. They then decided to get the picc line put in today (since getting an iv line in has been such a problem), and then when an xray is taken to check placement of the picc, they could also check out her lungs.
She started the picc procedure off with a bang by doing a large desat when they gave her the sedation medication. They got the picc line into a great position - so we are hoping it lasts the whole duration of her antibiotics. The xray results came back to show her right lung as being somewhat collapsed and having pneumonia.

She was very tired from the picc procedure in the afternoon and let the machine do a bunch of her breathing for her. Lorissa was able to (finally) enjoy a snuggle with her in the late evening! The first time since Wednesday morning.

On Monday Anna was awake alot; looking at us with her big eyes. She still needed fairly constant suctioning, but was pretty comfortable to just look around. She had a head ultrasound and an ECHO done. Her PDA has not changed thankfully - as sometimes they can reopen when they are sick. Lorissa was able to have a big cuddle before heading home to her own bed.

Tuesday, so far, has been a quiet day. Anna was awake so much yesterday, I figured today she would sleep alot and she has. We had a big snuggle this morning and I hope to give her a bath - since she is getting a little smelly. I think it's been almost a week since she's had a decent scrub. She will continue her antibiotics for 10-14 days (started Saturday). The plan right now, is to try extubate her on Thursday morning and put her on cpap for a few more days, but we will see how the next couple of days go.

We are just so thankful to see our little girl starting to feel better. It is so scary to see how a little bug can affect them! Keep praying for her recovery!

The name of the Lord is a strong tower; the righteous man runs into it and is safe.
Proverbs 18: 10 
 

October 15 & 16, 2015

I came in bright and early from Ronald McDonald house to see Anna comfortably sleeping. She still has alot of secretions and needs her intubation tube, nose and mouth suctioned quite frequently. She would show her discomfort whenever she needed this done and was otherwise sleeping nicely, so they stopped sedating her.
Her iv site from yesterday was puffy so they needed to change the site. They had a very hard time getting another one started - took 8 tries!
She was running a low grade fever but it never got very high - only up to 37.8.
In the afternoon they started her feeds again and she was tolerating them well. Seemed happy to get  full belly again.
She is still intubated but was on the lowest settings - and initiating all her own breathing. They decided to leave her on overnight and get her feeds up to the full amount, before extubating her and putting her on cpap. Little Miss Anna had other ideas - and pulled her tube out at around 8pm (when we had gone to eat dinner).
They put her on cpap to see how she would do. She was really having to work at breathing and started to have some desats. They tried her on a ventilator (which also helps her exhale) but she was still desating. Round 1pm they intubated her again and sedated her so she could get some rest.
She has been sleeping in her sedated sleep all morning so far. The results from her bloodwork, bacteria cultures and virology have all come back negative. So they are unsure what she is fighting against, but bloodwork does show her body is having an inflammatory response. They sent one more sample to virology from her nasal secretions (yesterday they sent one from her lungs). The infectious disease team was called in to see if they could provide any other insight to what this could be.
At this point the plan is to keep her intubated and sedated to rest until she shows us she is ready to come off of it. Her feeds have also been held again.
Please continue to pray for Anna! That she can beat whatever she is fighting and feel better soon. That the doctors are provided with all they need to help Anna. 

God is our refuge and strength, a very present help in trouble. Therefore we will not fear though the earth gives way, though the mountains be moved into the heart of the sea, though its waters roar and foam, though the mountains tremble at its swelling.

Psalm 46: 1-3

October 14, 2015

When I first came in on Wednesday morning - the nurse told me Anna had just had a deep desat (low O2 saturation level), but she came up on her own fine. I went for a family meeting with the doctors to discuss the plan with her - which at this point was just feeding, growing and improving her breathing. I was looking forward to try nurse her again once the meeting was over. I went to go pump (as she is only allowed it empty for now). When I came back - she had just had another deep desat and the nurse had to use a little bit of oxygen to get her back up. Nursing was put off for the day so I settled into holding skin to skin, looking forward to my mom and sister visiting.
We were cuddling for a while when I noticed her ng tube was in about 6cm short. I showed the nurse and we both thought maybe her desats were caused by that.
My mom and sister were on their way up when the monitor starting dinging and I looked at Anna and she was going blue. I pulled her out and gave her to the nurse right away. The nurse encouraged her to breath and starting giving her oxygen - calling for more support. Anna's colouring changed from blue to so pale and she was flaccid. They did get her breathing again and got the CPAP machine hooked up. They quickly did an xray to see what her lungs looked like - as that ng tube placement was a concern. The top right corner looked like maybe she aspirated a bit. They also started an iv line to do her feeds through there. Somewhere in the middle of that my mom walked in and then switched with my sister - who handles medical stuff alot better.
The team was just slowly dispersing and Tracy and I were standing by her - when she started desating again. We backed up while they worked to get her breathing again. Her heart rate was also decreasing and unstable. They kept the cpap on - but on a different setting that provided her with a puff of air to remind her to breath when she wasn't. We were warned that if she desated again they would intubate.

About an hour later - she desated again so she was intubated. Ryan got to the hospital just as I was going to see her intubated. We stayed with her the rest of the evening. It was so nice to see her with some colour.
That evening (after Ryan had gone home) Anna was very unsettled - lots of silent crying and flailing around - so they sedated her through the night.
They are checking her for virus' and bacteria's - trying to find the cause. She does have alot of secretions in her nose and mouth. Her hemoglobin level was also getting to the lower side so they did a blood transfusion, to give her an extra boost of oxygen carrying cells.
We thank the Lord for keeping watch over Anna during this scary time! We covet your prayers as they try to find out what is causing all of this. 

Are not two sparrows sold for a penny? And not one of them will fall to the ground apart from your Father. But even the hairs of your head are all numbered. Fear not, therefore; you are of more value than many sparrows.

Matthew 10: 29-31

October 10-13, 2015

On the long weekend we split our time between Anna and Jude & Kaelyn.
Anna got to enjoy lots of snuggles with mom and dad and didn't have much going on besides her feeds slowly increasing more.

She weighed 1749g on Sunday.
Anna was having some desats still but they weren't getting any worse and were not very deep.
On Saturday afternoon Lorissa and Jasmine took the kids for a hike at Rockwood conservation (while Ryan slipped out to go hunting for a few hours.)

Monday was Thanksgiving and the kids enjoyed some time playing with all the swavings - and pretending they belonged ;)

Be still, and know that I am God. I will be exalted among the nations, I will be exalted in the earth! 

Psalm 46:10

October 5-9, 2015

On Monday Anna had her ECHO done to see if there was any improvement to her PDA. We found out on Tuesday that it was smaller and restricting some blood flow to it! This was so exciting - as the doctors did not really think it would work - but wanted to try what they could to avoid surgery. We know the Great Physician has Anna in his care and are so thankful!

On Monday she was also looked at by a ENT (ears, nose and throat) specialist as she doesn't make much noise at all. Even her full out crying - only brings forth a little cough or 2. They did a scope of her vocal cords - just to make sure they open and close properly. She actually got quite mad at them while they were doing it - and they were happy to report that they do open and close properly.

On Tuesday at 4pm - Anna was also taken off CPAP again! It is now Friday night - and she is still off! Her PDA improving is likely why she is doing better this time. She is still not breathing perfectly - she breathes fairly quickly and also desat's occasionally - but she is doing well enough to stay off. Please continue to pray that her breathing improves. We are enjoying all the close snuggles we are able to have with her off cpap. Just being able to nuzzle against her bare head is such a treat.

On Thursday afternoon - Anna went for an MRI of her brain. The results came back normal :)

She is continuing to gain weight! Is up to 1749g (just under 4lbs now)! You can see that she is starting to get some fat on her (she is finally getting a bum).

With Anna being off CPAP come some changes! We will likely get moved to the level 2 nursery in Mac. This is exciting as it is one step closer to moving to a closer hospital until we can go home. Anna also gets to try nursing! Lorissa is really looking forward to this - although it is likely to be a challenge as she is such a mellow baby.

This week has been great! Every test or thing that was tried came out positively! It is SO encouraging to make some progress! We are so thankful to our heavenly father for his many mercies.

Bless the Lord, O my soul, and all that is within me, bless his holy name! Bless the Lord, O my soul, and forget not all his benefits, who forgives all your iniquity, who heals all your diseases, who redeems your life from the pit, who crowns you with steadfast love and mercy, who satisfies you with good so that your youth is renewed like the eagle's.
Psalm 103:1-5

September 30-October 4

A little behind here! Been a busy week!

On Wednesday the cardiologist reviewed Anna's case and said to go ahead and start treating the PDA in the hopes it will close. The first try at closing the duct is to give 3 doses of ibuprofen. Anna received her first dose on Wednesday. They have another ECHO booked for Monday to see if it closed at all. If it has not closed at all - they will try diuretics for a couple of weeks. If the diuretics do not work - she will need surgery to close the duct. Please pray that the duct closes with the medications! It would be great to avoid a surgery - since she likely has another couple in her future.

Anna is continuing to grow - although a bit slower because they cut her feeds back somewhat, while they were giving the ibuprofen.  On Friday morning she was 1634g - but for some reason she was reweighed that night and she was up to 1681g (3lbs 11oz)! That means this little lady is up a pound from her birth weight! We bathed and weighed her on Sunday again - and she is up 1712g.

On Thursday Anna was moved into a crib! She is a "big girl"  now! Its easier to see her and touch her which is so nice! She likes the music from her mobile too! She also wore clothes for the first time :) She is such a cutie!

Lorissa's first week commuting went really well. We are enjoying getting to see Jude and Kaelyn every day and seeing each other as well. A little bit of normalcy in our upside lives. A big thank you to the babysitters, meal makers, bakers, gifters - and most of all the prayers!

"Behold, God is my salvation; I will trust, and will not be afraid; for the Lord God is my strength and my song, and he has become my salvation."

Isaiah 12:2