September 26-29, 2015

Well - it's been a few days since I blogged - busy settling into the new routine and Anna didn't have much going on this past weekend. 

Anna is continuing to grow! Yay!
Saturday night she was 1540g
Sunday night she was 1582g
Monday - not weighed
Tuesday - 1616g

On Monday - besides the regular snuggles with mom - Anna tried to come off CPAP again. Her respiratory rates were too high again - so they tried something new - high flow. A little nicer because it's less bulky! Unfortunately her respiratory rates were still too high so on Tuesday around 3pm - they put her back on CPAP. 

The neonatologist put in a call to cardiology to help decide what do - so hopefully we will hear from them on Wednesday. Please keep praying for Anna - that her PDA will improve and she can breathe on her own. 

We are settling into our new routine fairly well. It is nice to see Jude and Kaelyn every day and nice to sleep in our beds! 

It is definitely hard to find that balance between big kids and Anna! Feel needed by both - but only able to be in one place at once! Please remember our little family in your prayers!

"Let the little children come to me and do not hinder them, for to such belongs the kingdom of heaven." 

Matthew 19:14

September 24 & 25, 2015

On Thursday - Anna had her second ECHO to see how her PDA is and to see if the pressure in her lungs is reducing. They changed her feeds to 30mls every 3 hours, instead of 20ml every 2 hours. So when she goes home - her feeding schedule is easier to manage. 

Lorissa had a good snuggle with her in the morning, before she spend the afternoon with Kaelyn and Jude.

In the evening when Lorissa came back - they did her weight - and she was up to 1487g!

On Friday - Anna had lots of snuggles! Two long snuggles with mom and another good snuggle with dad! 

They decided to add some more carbs and fat to Anna's milk - to try get her gaining more! They also decided to start weighing her every day (instead of every other) - and she was up to 1513g (another 26g)!

The results from her ECHO showed that there was no change to her PDA or the lung pressure - so they will continue to monitor.

Next week we are trying something new. We are bringing the kids home to Fergus and Lorissa will be commuting down to Mac every day. This will allow the kids to see their mom and dad every day - and sleep in their own beds at night! A BIG thank you to Lorissa's parents and sisters for watching those 2 rascals for 3 weeks! We are hoping this new arrangement goes well - and SO appreciate the help of scheduling it all from Aunt Debbie and Aunt Shirley.

But now thus says the Lord, he who created you, O Jacob, he who formed you, O Israel:
“Fear not, for I have redeemed you;  I have called you by name, you are mine. When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned,  and the flame shall not consume you. For I am the Lord your God,  the Holy One of Israel, your Savior. I give Egypt as your ransom,  Cush and Seba in exchange for you. Because you are precious in my eyes, and honored, and I love you, I give men in return for you,  peoples in exchange for your life. Fear not, for I am with you;    I will bring your offspring from the east, and from the west I will gather you. I will say to the north, Give up,  and to the south, Do not withhold; bring my sons from afar and my daughters from the end of the earth, everyone who is called by my name,  whom I created for my glory,   whom I formed and made.” 

Isaiah 43:1-7

September 22 & 23, 2015

Tuesday was a good day! Anna stayed off CPAP until the evening - then had to go back on. Her respiratory rate was getting too high. She was weighed in the evening and is up to 1435g - another ounce gained!

Lorissa spent the afternoon with Jude and Kaelyn.

Making a picture for Anna - turned more into decorating himself

 

Wednesday Anna had a sleepy day (after all that work breathing on her own for 36 hours). She is starting to show she is hungry around feeding time - getting mad (in her own quiet way). Anna does like to suck her soother - which is pretty cute - considering how big it is compared to her face!

Urology came up and talked to Lorissa about Anna's hydronephrosis of her left kidney. It is Grade 3 (better than it looked on the original ultrasound). It may still improve on its own or else it will need surgery to open the ureter up further. They will see her in 8-10 weeks for another ultrasound. If it is still the same grade - they will do another test to figure out what percentage each kidney is working. 40/60 is acceptable but anything worse will require surgery to fix.

They plan on doing another echo on Thursday/Friday to see how Anna's PDA and pressure in her lungs is and will likely try her off CPAP again early next week.

 

"Yet you are he who took me from the womb; you made me trust you at my mother's breasts. On you was I cast from my birth, and from my mother's womb you have been my God."

Psalm 22:10

 

 

September 20 & 21, 2015

Sunday was a great day! Time to hear God's word, play with Jude and Kaelyn and visit with Anna. She didn't have much at all going on - besides that she had grown to 1392g (3lbs 1oz) on Sunday night!

On Monday morning Lorissa came in to find her off CPAP - yay! She was doing really good with that all day - so hopefully she will still be off! There was lots of time for snuggles with mom and Anna today - and it is so much better when you can see her face!

Anna had a special visitor today - who drove 10+ hours just to meet her! We had a great visit with Aunt Cole!

Note: As Anna's tests are winding down and she is just worrying about feeding and growing - I may not post as often since there just isn't much to tell! As more news comes up - I will keep you all informed!

"For you, O Lord, are my hope, my trust, O Lord, from my youth. Upon you I have leaned from before my birth; you are he who took me from my mother's womb. My praise is continually of you."
Psalm 71:5-6

September 19, 2015

Today was a quiet and relaxing day for Anna.  Ryan went and gave her snuggles, while Lorissa went and picked up Jude and Kaelyn. 

Then we traded spots and Ryan entertained the big kids while Lorissa snuggled Anna. The nicu was very calm today - not much going on as not too many tests get done on the weekend. 

We then headed home to Fergus for the night - to enjoy our old routine with the big kids!

"Cast your burden on the Lord, and he will sustain you; he will never permit the righteous to be moved." 

Psalm 55:22

September 18, 2015

Lorissa had a nice and long snuggle with Anna in the morning.

We received the test results back regarding her Vcug - and it came back as normal. This means that urine is not refluxing between the bladder and kidney, but that their is a blockage in the ureter tube. So now nephralogy has signed off and urology has signed on. We hope to hear from them next week on what they will do to fix the blockage.

We also received the results from her ECHO. This showed that she has patent ductus arteriosus (pda). To keep it simple - it's a duct that is supposed to close upon being born (google it for more info if you're interested). In Anna's case - the pressure in her lungs is still high (like when in utero) so it is not a bad thing the duct is still open - as it means her heart doesn't have to work so hard to get blood to her lungs. They are going to do another ECHO in a week - hoping that the pressure in her lungs will have decreased and her pda has closed (somewhat at least).

They plan on trying her off of cpap on Monday again! Can't wait to snuggle a baby that only has a few probes on!

She was weighed today and is up to 1342g - almost 3lbs!(up from 1307g 2 days ago) Keep growing little one! 

Ryan came after work and got to have some cuddle time with Anna.

 

"When I thought, "My foot slips," your steadfast love, O Lord, held me up. When the cares of my heart are many, your consolations cheer my soul."

Psalm 94:18-19

September 17, 2015

Anna was sleeping very peacefully when Lorissa arrived in the morning. She headed down for her VCUG - test to figure out why her left kidney is full - around 11 a.m.

She was back in less than an hour and Lorissa was able to snuggle her for a little over an hour before heading to see Jude and Kaelyn. They were also just coming in to do her ECHO when Lorissa left.

Lorissa had a fun afternoon together with Grandma and the kids! Went to the store, the splash pad, had a pizza dinner and found "coconuts" aka acorns in the backyard.

Crazy Kids!

Lorissa was able to come back for a snuggle in the evening with Anna :)

We hope to find out the results from her tests soon! 

"The Lord is the strength of his people; he is the saving refuge of his anointed. Oh, save your people and bless your heritage! Be their shepherd and carry them forever."
Psalm 28: 8-9

September 16, 2015

Today when Lorissa arrived in the morning, Anna was in the midst of getting her head, renal and hip ultrasound from the bedside. We have yet to receive the results from them. Her VCUG is being put off until tomorrow.

Yesterday they also did a chest x-ray for Anna - to check her PICC line (which they ended up removing) but also to have a look at her lungs b/c of her failed attempts at being off CPAP. They are keeping a close eye on them. The nurse also heard a slight heart murmur, so she will be having an ECHO done tomorrow from the bedside. Little Miss Anna just keeps taking one step forward and three steps back! A little discouraging, but we continue to trust in the Lord that he has a plan in all this!

Anna slept most of the morning - but got a good snuggle with Lorissa for a few hours in the afternoon. 

Ryan came after work and we went and enjoyed an extra special served dinner at the Ronald McDonald House. It was delicious!

We got to see her first tub bath! So cute!

He had a good snuggle with Anna before he had to head home.

"Therefore the Lord waits to be gracious to you, and therfore he exalts himself to show mercy to you. For the Lord is a God of justice; blessed are all those who wait for him."
Isaiah 30:18

September 15, 2015

Today Lorissa was able to have the longest snuggle yet - 2.5 hours :)
Anna's bilirubin had dropped way down, so the lights were turned off again and we could peek at her eyes. 

Her renal and hip ultrasound was pushed back until tomorrow. Since she has to go down for her VCUG tomorrow - this will reduce her trips out of the nicu.

Lorissa headed out around 2pm to spend the afternoon with Jude and Kaelyn. There was alot of excitement over the big trucks paving the road in front of Grandpa and Grandma's house. 

In the evening, Lorissa came for another snuggle time with Anna. Her picc line had been removed as it was not sitting correctly. One less thing attached to her - yay!

"Be still, and know that I am God. I will be exalted among the nations, I will be exalted in the earth! The Lord of hosts is with us; the God of Jacob is our fortress."

Psalm 46:10-11

September 14, 2015

Ryan headed back to work this morning and Lorissa headed back to Mac again.

Anna was off of her cpap when Lorissa arrived - so we had a full view of her again! Grandma & Beppe both came and were able to see her face for the first time (on previous visits she always had CPAP and/or was under the lights). Lorissa was able to enjoy a good long "kangaroo care" snuggle with Anna too!

Lorissa sat down with the neonatalogist and neuro-surgeon to go over the results from the
MRI. It showed that she has a tethered spine. This means that Anna's spinal cord extends below where it would normally end and it is affixed at L4 with some fat and a cyst around it. She will need neurosurgery to untether the cord around 3 months of age (corrected). It can cause pain to her back or legs - but Anna has shown to be resting comfortably so they do not believe she is in any pain. They are not sure at this point if/what damage this tethering has caused to her nerves in that area. It can affect movement and senses to her legs - although she has shown she can move and feel her legs :). It can also affect bowel control - which we won't know for quite some time. The neuro-surgeon said he was over 99% sure that Anna would walk - so that was very encouraging to hear. (The neuro-surgeon himself is a very big african american man - with the hands of a giant - it is hard to imagine those hands working in such small and sensitive spaces!) 

They also noticed in the MRI that her hips are displaced. So she will be needing to go in a brace for a few months to fix this as hip growth is dependent on proper positioning of the femur. She will be having a hip ultrasound tomorrow and then Lorissa will meet with an orthopaedic doctor to discuss in detail.

Neither of these issues will hold up Anna from coming home with us!

Anna is still tolerating her feeds well and is almost up to full oral feeds! 14 ml and goal is 16 ml - by tomorrow noon she will be at full feeds. They are starting to fortify her diet - just to give her some extra calories to put some fat on her! She is not receiving any nutrition through her picc line anymore - but they are keeping it running until after her VCUG (urine dye test - to figure out her kidney issue) on Wednesday.

Our Little Alien Baby

Late in the afternoon - bloodwork from Anna's bilirubin came back as high so she was put under the lights again. Also - her respiratory rate was staying too high - so the respiratory therapist decided to put her back on CPAP. So she is all covered up again! The RT did say that Anna was a good candidate for high flow therapy, so we will see what the decision is in the morning regarding that. It is better she doesn't have to burn too many calories trying to keep up breathing - as her biggest job right now is to gain weight and grow!

Please continue to pray for this little girl that she will continue to grow! Also for us as we try to balance time between Anna and Jude & Kaelyn.

"But they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint."

Isaiah 40:31

September 13, 2015

Today was a fun and busy day! It was nice to wake up with Jude and Kaelyn there and spend some time with them! They were very busy with all the toys!

We each took a turn playing with the kids and visiting Anna. They ended up having space for an MRI - so she had one around 3 in the afternoon. When she went down for the MRI we left to bring our kids back to Lorissa's parents and enjoy a family dinner there.

We headed back to Mac in the evening and Ryan was able to have a nice snuggle before we headed home to Fergus - and back to work.

"May you be strengthened with all power, according to his glorious might, for all endurance and patience with joy, giving thanks to the Father, who has qualified you to share in the inheritance of the saints in light."
Colossians 1:11-12

September 12, 2015

Anna was out from under the lights when we went over in the morning. She was quite awake so we got a good look at her little eyes!

She enjoyed an hour long snuggle with Lorissa and an hour and a half long snuggle with Ryan. Nothing like a warm little bundle snuggled up to you.

We were visited by the neurologist regarding the spinal cyst. She has a pocket of fluid in her spine that they will monitor over the next 4 months. The fluid is caused by her being premature or by something else causing tension on the spine. They will be doing an MRI next week and will have a better idea after that what is causing it.

After a few visitors we headed out to get Jude and Kaelyn and bring them back to Ronald McDonald to spend the night with us.   They had a blast playing with all the toys!

We both snuck out for small visits to say good night to Anna. Her weight was at 1239g today but that was done without her cpap on (and the last couple days they took her weight with the cpap on). Either way, above her birth weight, so they are very happy with it.

"It is good to give thanks to the Lord, to sing praises to your name, O Most High; to declare your steadfast love in the morning, and your faithfulness by night, to the music of the lute and the harp, to the melody of the lyre. For you, O Lord, have made me glad by your work; at the works of your hands I sing for joy." 

Psalm 92:1-2