Saturday, May 31, 2014

Day 37

Today Mommy and Daddy got to the hospital and were waiting when the doctor arrived to do rounds.  We wanted to ask them about Walker's caffeine to make sure it wasn't making his reflux worse and to also ask about how much weight he is putting on.  The doctor said they typically ween babies from caffeine around 32 weeks, which Walker will be next Thursday, so that wasn't really an issue.  They also said they thought he should be gaining weight more quickly as well, so they decided to up him to 18cc every three hours, up from 16cc every three.  They are also having Mommy stop pumping about half way through and switch to new bottles so she can have the milk at the end separate.  They call this the "hind" milk and told us it is higher in fat so it will hopefully help him to be able to put on weight more quickly.  The doctors are so great about addressing our concerns and really taking time to talk things over with us and explain them, we have been so blessed to have such great people taking care of our son!

This afternoon Mommy had a shower at church and so Daddy and Papa were on babysitting duty.  On the way to the shower we stopped and got to meet Elam Thomas and see Mommy's best friend Emily.  Elam is absolutely perfect and it made my day being able to see and get to hold him!  The shower was extremely fun and it was great for Mommy to get to see all the ladies from church who she hasn't seen in over 5 weeks!  Walker got lots of great gifts and adorable outfits!

Daddy and Papa did a good job on babysitting duty and took great care of lil man all day.  Walker did well on his cannula and had one episode but he was able to self recover with no problem.  He started his 18cc feedings at 6 and has done well with those so far.  The highlight of the day for Mommy and Daddy was tonight though, we got to DRESS Walker for the first time EVER!

In the NICU they don't dress babies until they are at least 1,000 grams and tonight he was 1,010 grams which is 2lbs. 4ozs!  They are able to take his temperature probe off of him and just adjust his bed every three hours as he needs it.  We were so excited for this moment, after 36 days and not a single stitch of clothing we couldn't wait to see Walker in his very first outfit!  All of these little moments and things that would be common place with a full term baby, seem like big moments to us after waiting so long to get experience them with Walker.  After we got him dressed and covered up with his blankets, he seemed to be so happy and content and even had a smile on his face!

We know it is because of all the prayers going up for Walker that he is doing so well and growing the way that he is.  We know that God has plans for this "Little Big Guy"!
Little Big Guy!!

Cutest face ever!

Kangaroo time with Daddy!

Getting dressed for the first time EVER!

Look at that sweet boy!

All snuggled in tight!

Friday, May 30, 2014

Day 36

This morning Mommy couldn't wait to get to the hospital to check and see if Walker was on the cannula.  When she arrived Walker was settled in and doing great on the cannula and boy did his head and face look so sweet!  Throughout the day he was able to do well with his breathing and kept his oxygen at 28% or below all day.  He did well with his feeds and was doing better with them spaced out over two hours to help with his reflux.

Also this morning Deneen from Capturing Hopes came by to take Walker's picture and she had her camera with her!  The man had seen the story on the new and decided to return her camera back to the mall.  She got all of her equipment back and the memory cards with all the photos also, so amazing.  If you would like to donate to Capturing hopes check out the post from yesterday and click on the go fund me link, they are an amazing nonprofit organization that provides such a wonderful service for families with babies in the NICU!

After lunch Mommy got to kangaroo Walker for a little over an hour and there is no better feeling in the world.  I have been looking forward to kangarooing him on the cannula again every since he went back to CPAP.  It is amazing getting to feel his soft face and even softer head right on your skin and being able to rub his velvety hair is truly wonder.  He did a good job maintaining his temperature while he was out and seemed to really enjoy his kangaroo time too!  After he went back it was time for a diaper change and Mommy decided to let Granny do this one, boy was that a good decision!  Walker decided he needed to do a "big job" about the time that Granny was taking the diaper off and boy what a big mess that lil boy made!

This afternoon we had a visit from Teena, who plays bunco with Mommy and Granny.  She was very excited to see the little guy and thought he was adorable, we agree!  Daddy and Papa weren't far behind and they were very excited to see the little guy on his cannula again!  They also loved being able to see his sweet face and head and got to see him wide awake.  It is amazing to see him moving his eyes around and trying to focus on different things, he also has tons of precious facial expressions!

Tonight Mommy and Daddy got to give him a bath which is one of our favorite things to do.  It is so neat to hold the little guy in your arms and wash his sweet head, and then to put him in the "tub" and get to wash and rise his sweet little skin!  It is such a wonderful thing for us because it has such a feeling of normalcy and it is one of the times we feel like we are getting to care for Walker, when so often it feels like the nurses are doing a lot of his care.

Today was a great Friday and we hope that Walker can stay on the cannula and continue to gain weight, he is still holding tight at 2lbs. 2ozs even after going off the CPAP and without that extra weight!  Please continue to pray for Walker, we know he wouldn't be where he is today without all the prayers that are being lifted for him!

Sweetest smiling face we've ever seen!
Wide awake!

Can't stop staring at this little guy!
Giving Walker a bath!
Washing little man's sweet head!

Thursday, May 29, 2014

Day 35

Today the goal for Walker was to have a stable day of resting and working on his breathing and feeding.  During rounds this morning Mommy and Granny talked to the doctors who decided to stop Walker's antibiotics which he had been on for almost three days.  They decided to stop since both his blood and urine cultures were still negative and Walker has started acting like his old self!

His respiratory therapist also suggested that since he had been on 21% oxygen with his pressure of 6 for around 48 hours that they go ahead and turn him back down to a pressure of 5 today.  The doctor agreed and said if he did will with that throughout the day, then tomorrow they would try the nasal cannula again.  Walker did well all day with his new pressure and only got up to 24% oxygen so we are hoping that he behaves all night.  When Mommy left tonight he was back down to 22%, so tonight she is going to dream about seeing and touching that sweet boy's head in the morning!

Walker also had a visit today from the Gary's who he loves!  Sandy and Taylor Jo loved looking in on little man and were surprised at how much he had grown and how active he was!  They loved looking at his sweet little feet moving all around.  Mason was excited to see Walker's baseball themed bed today and thought it was perfect!  Tim was amazed and how much lil man had grown and how well he was doing since he had seen him since he was only 2 days old.  It's amazing how far Walker has come and how many obstacles he has already overcome!  As always, Mommy enjoys these visits just as much as Walker, and it means so much to see the friendly faces of people who are just like family to us!!

If you saw the earlier post that Daddy put up today, then you know that Mommy was on the news.  Deneen from Capturing Hopes, a nonprofit that photographs baby's in the NICU, had her equipment stolen yesterday.  She was interviewed by a local station WXII 12 and asked if Mommy would do an interview as well to give the perspective of a NICU mom that was directly affected by this, 3 days worth of photos of Walker were lost along with Deneen's cameras.  Please check out that post and if you can donate to Capturing Hopes, such a wonderful organization that provides and invaluable service to families in the NICU!

Walker did well with his feedings and got lots of good rest for the most part today.  He was active when it was time to check his vitals and do diaper changes, which is good we like to see him act a little feisty!  He did well with his feedings all day and we are hoping that this continues.  Please pray that he has a good night and that tomorrow he is able to go back to the nasal cannula and STAY!

Good morning Mommy!

Baseballs and Camo...what a boy!

Hopefully get to see this sweet face all day tomorrow!

Hey y'all!

Good night everyone!

Capturing Hopes and Erica in the News

Hey Y'all,

We have been so blessed by Deneen's generosity throughout Walker's life. She has taken pictures of Walker every day doing a 100 Day Project with Baby Walker. Yesterday, her car was broken into and someone stole all of her equipment.

We pray that if God guides you, to please give to Capturing Hopes if you can. They have given us amazing pictures, many of which show up in our blog.

From Capturing Hopes Website: 

On May 28th, Deneen Bryan, Capturing Hopes Founder and Administrative Director, had all of her photography equipment stolen from her vehicle. The equipment stolen is what Deneen uses daily to photograph NICU babies at Forsyth Hospital NICU and weekly at Brenners Children’s Hospital and Ronald McDonald House. Without the equipment Deneen is unable to provide photography services to NICU families and NICU babies. These families are missing precious moments from their babies lives.
Visit our gofundme page to help us raise money to purchase new equipment!

Also,  Erica is going to be on the news tonight speaking about Capturing Hopes and what they've done for us. It will air on Channel 12 - WXII  at 5PM and 6PM.

Thanks and God Bless,

Jared, Erica, and Walker

Wednesday, May 28, 2014

Day 34

Today started off with us talking to Walker's doctors and getting about the same report we got yesterday.  Everything looked about the same and he was continuing to act more like himself.  They were also concerned about him having a couple of random low blood sugars here and there and having some trouble maintaining his temperature a couple of times.  The doctor decided to do another set of labs on him this morning to check all his levels and she added an additional test to check and see if the issue could be something with Walker's stomach.  All the tests came back good and the only thing they could find was that his potassium was low, so they started giving him potassium orally this afternoon in his feeding tube.

The doctors really don't have any explanation for why Walker was acting sort of sickly for the last couple of days, but we are just hoping that he is on the mend.  He acted much more like himself today and was fighting some when it was time for diaper changes or when Mommy cleaned his mouth!  We like to see the guy active and alert and showing some spunk!

Walker also had visits from Pat, Carrie, and Kasey who Mommy teaches first grade with at Collinsville Primary.  They really loved getting to visit little Walker and Mommy really enjoyed spending time with them and catching up.  They went over and above when Mommy had to miss the last few weeks of school to be with Walker, they took care of lesson plans and any and everything that needed to be done.  I can't express how thankful that I am for all that they did so that I could be with Walker and focus on him, what great teammates!

Walker was able to get kangaroo time with Daddy this afternoon, which was much needed for them both!  When the nurse took Walker out he did extremely well, and settled right in on Daddy's chest.  His oxygen remained on 21% the whole time he was out, they didn't have to turn him up at all, and he rested well.  Looking at the picture below I am not sure who enjoyed the kangaroo time more, Walker or Daddy!

The rest of the afternoon was fairly quiet, and Walker behaved.  His oxygen stayed on 21%, which is the same as room air, all afternoon and his CPAP pressure is at 6.  We are hoping that if he continues to keep his oxygen down they will try turning his pressure back down to 5.  Walker had a quiet evening and only had one episode while Mommy and Daddy were at supper, but he was able to self recover and the nurse didn't have to intervene which is good.

Please continue to pray that God will give Walker the strength to return to the cannula and stay on it, and to give his little body strength to grow each day.

Working that tongue! 

Don't know who is enjoying this more, Walker or Daddy!

Look at that precious face!

Mommy cleaning his face!

Good night everyone!

Tuesday, May 27, 2014

Day 33

This morning Mommy was anxious to get to the hospital to check on Walker and see how he had done overnight and talk to his doctors.  The nurse said that Walker had behaved on his CPAP all night and had stayed pretty low on his oxygen from 21-23% all night.  She said his color and tone was better than yesterday but still not great.  They had run labs on him to recheck a few things from yesterday and compare how Walker was doing.

When the nurse practitioner and the doctor came for rounds they discussed all of Walker's numbers and everything seemed to look good.  His hemoglobin was 10.6, which was up slightly from the day before, which is good.  They also checked several other things which are markers for infection and they were all normal.  They are going to continue the antibiotics they started yesterday for 48 hours just to make sure he is covered and recheck labs in the morning to make sure he is still on track and not showing signs of infection.

Throughout the day he started to act more and more like himself and began to get more fight each time the nurse got into his bed to check vitals.  By this afternoon his color was better and he was mostly back to himself, trying to pull Mommy's hand away when she checked his temperature.  We are hoping that he will continue to be on the mend and be back to his old self soon.

He also had his eye exam, they have a special optometrist that comes to the NICU and does eye exams on the preemies.  He does their first exam after they are 1 month old and then continues to do rechecks as needed while the babies are in the NICU.  Mommy didn't stay for the eye exam because the nurses told her even though they numb his eyes and he isn't in any pain the exam looks worse than it is.  So Mommy, Granny, and Uncle David left the doctor to do his check.  He said that Walker's eyes looked good and nothing unusual to be worried about which is good news.  He will recheck them again in a couple of weeks to make sure Walker is still continuing to do well.

Walker had mostly straightened up by the time that Daddy and Papa got here after work, guess he knew he better behave!  Daddy was excited to see his little boy doing better and acting more like himself.  He was able to change a diaper, but we decided that since Walker has had such a rough couple of days we would let him rest and not kangaroo tonight.  Hopefully tomorrow we will both have a chance to hold him if he is still continuing to improve.

Please continue to pray that Walker can regain his strength, also that he will be able to return to the cannula soon.  We are reminded daily that neither us nor the doctors are in control and this is all in God's hands, we are trusting in God's plan and not our plan.

Eyes wide open

Looking right at Mommy!

What a handsome boy!

Uncle David giving Walker some loving.

Daddy diaper change time!

Love this boy more than words can express!

Monday, May 26, 2014

Day 32

Daddy came by this morning to check on Walker on his way to work and the nurse told him that he did ok during the night on the CPAP.  She said he had a couple of episodes but they were all self recovered and that he had behaved during the night.  When Mommy arrived and talked to the doctors they said that maybe lil Walker just got tired out on the cannula, which is a common occurrence, and they would try again in a few days if he behaved.  They said his lab worked looked good and hopefully he would have a good day!

Walker had visits from Mommy's best friend Jodie and Raylan and Brandi.  They had a good visit with the lil guy and he was happy to see them.  It was also really good for Mommy to get some much needed laugh with good friends!  Walker also got a visit from Mrs. Barbour and Mrs. Moyer who work with Mommy at Collinsville Primary.  They were so amazed at Walker and really enjoyed visiting with him.  They said a prayer for Walker and he opened his eyes and waved goodbye to them!  Then Mamaw and Papaw Pruett came to see the lil guy, its hard being such a loved little boy.  They hung out with him for a while this afternoon and took turns staring at his sweet face, they can't wait to get him good and spoiled!

Walker behaved for all his company, but this afternoon he decided to start acting up.  His color wasn't good and he was acting wimpy with not a lot of fight when the nurses checked his vitals.  The nurse practitioner ordered and xray, a blood and urine culture, and checked his blood sugar.  Everything looked good on the xray, his lung volume looked a little low, so she decided to turn his PEEP on the CPAP back up to instead of the 5 he had been on to give him so extra pressure for his lungs.  His blood sugar was down to 34 so she started an IV and gave him some dextrose to help get that back up where it should be.  It takes a while to see if the blood and urine cultures are going to grow anything, so she decided to go ahead and treat him with antibiotics in the mean time.

After all his tests and pokes and prods (which were hard for Mommy and Granny to watch) they got his PEEP turned up and him settled back and started his antibiotics around 7.  For the rest of the night he was pretty quiet and the nurse and nurse practitioner assured us they will keep a close watch on him and look for any changes.  They do a good job of running lots of test and covering all the bases to try and figure lil man out, but as the nurse said sometimes it comes down to a guess game and just treating his symptoms the best they can.  It would defintley make Mommy and Daddy rest much easier if they could pinpoint what is going on with Walker, but for now we are trust that he is under God's protection.  Please continue to pray with us that tomorrow we will be a better day, and Walker will be returned to his self and strength.  

Look at those sweet hands.

Great grandparents Mamaw and Papaw looking at Walker.

Walker holding onto Papaw's finger!

All tucked in, for hopefully a restful night.

Sunday, May 25, 2014

Day 31

Today, Walker is 1 month old. Mommy and Daddy were there at his bedside at exactly 12:15 PM to take pictures with their little big guy. The day started off good, he was on his cannula at 21% oxygen which was great! 

When he started to get his lunch, his stats started getting a little erratic. At first, he would be perfect, his heart rate was in the 150s and his oxygen saturation was in the mid-90s (where he should be). Occasionally, his heart rate would go way up and his saturation would go down, then correct itself. Between the "destats" and the milk in his mouth, they decided that he has bad acid reflux, a rather common problem in preemies. 

The nurse worked with him throughout the day trying different positions and even tried it while kangarooing with Mommy, but nothing seemed to help his little belly with the reflux and his stats continue drop and have bradycardia episodes.

After fighting it all day long, David - the Nurse practitioner, decided to do an x-ray to make sure everything was good with Walker. The results showed that Walker looked normal on the inside except for the feeding tube laying slightly against the side of his stomach wall. They pulled back the feeding tube a little to resolve that and lengthened the feedings to 2 hours instead of 1 hour for the 16 mL of milk he is receiving.  They were hoping this would be enough to help the little guy manage his reflux and stay on the cannula. 

However after starting his feeding back he continue to have the episodes, and even had one that was pretty severe so David decided that Walker needed to go back on the CPAP with his pressure of 5.  This is very hard for Mommy and Daddy because they hate to watch Walker struggle with his reflux and his breathing, but it is also very hard to have to see him go backwards.  It is very hard to watch your baby struggling and the feeling of helplessness that comes with not being able to do anything.  

We are just continuing to trust that its all in God's hands and we know the prayers that are being lifted daily for Walker.  Hopefully soon the doctors will feel he is ready to go back on the cannula again, please continue to keep him in your prayers daily.

Snuggled up tight

One month old!
Look at those eyes!

Sucking on my fingers during kangaroo time!

Saturday, May 24, 2014

Day 30

Today, Mommy and Daddy got to spend all day with little man. This morning, Walker was still on his nasal cannula and he was at 23% oxygen (room air is 21%) and the nurse told them that Walker had been on 21% for a good part of the night! Mommy and Daddy were so proud of their little man! 

Daddy was so excited to get to hold Walker for the first time with his cannula and get to rub his soft head. He could finally see his little face at the same time he was holding him. Daddy and Walker hung out for over an hour and Daddy took a little nap with Walker on his chest. Between the warm blankets and the relaxing feeling of Walker on Daddy's chest, it didn't take long.  It is such an amazing feeling to get to hold your son even for only an hour!

After lunch, Pastor Payton and his son, Levi, came to visit Walker. We truly miss our church family at Gospel Baptist and they have been so good to us through this whole situation.  We have had visits and Jerry one of the deacons has even mowed our yard for us!  It means so much to know we have their love, support, and most importantly prayers and we hope to be able to see them soon.

Walker did well all day. He only had a few episodes and none that needed any help he was able to self recover. The nurse said that these are due to his reflux and you can definitely tell, the poor little guy will actually reflux some milk back into his mouth.  They have spread his feedings out over and hour and unless it gets really bad they won't put him on any medicine so for now Walker just has to work through it.

Granny and Papa came to see little Walker this afternoon and they got a real treat of getting to see Mommy and Daddy give the lil guy a bath.  He has had baths before, but we have never been able to bath him and Mommy was beyond excited to do it for the first time.  It's hard to believe that tomorrow he will be a month old and we haven't been able to bathe him yet, but it only makes it more special for us!  

Right now because he is still so little its really more of a sponge bath, they don't put him actually into the tub until he gets a little bigger.  He got all new bedding and new sensors and probes which made him smell better already.  The little guy tolerated getting all wet, and even seemed to like getting rubbed down with the soap.  It is amazing how he can get dirty, but boy did he need a bath!  After we got him all cleaned up then we rubbed him down with some baby lotion and had that boy smelling like a million bucks!  We wrapped him up in some blankets and moved him over to a new bed that nurse had ready for him.  We put a little blue hat on his sweet head, and got him all tucked in.  After his bath and on his new clean bed we know he will sleep great tonight!  What a blessing it is for us to be able to enjoy these special moments with our amazing son!

Kangaroo time with Daddy!

Most beautiful face we've ever seen 
Getting clean, no pictures please!

One clean and wet boy, getting dried off.

Hey what's this thing?

Good night Daddy, thanks for the bath!

Friday, May 23, 2014

Day 29

Today was a wonderful day!  Walker was four weeks old today, we can't get over how fast time is flying.It is hard to believe that exactly 4 weeks ago our whole world got turned upside down in the most fantastic way possible.  We have been able to see this little guy touch so many lives and do so much in such a short time.  He is truly a miracle and we thank God every day for choosing us to be his parents!

Although Walker normally doesn't like Fridays, he decided since he was four weeks old that he would change that for today!  This morning Walker and the nurses had a big surprise for Mommy.....Walker was on the cannula!  For the first time in weeks Mommy was able to see her lil boy's whole head and face and man is he adorable!  The photographer from Capturing Hopes, Deneen, was there to get pictures of Mommy's reaction to seeing Walker on the cannula for the first time and we can't wait to see those pictures!  It is amazing to see how far Walker has come in just 4 weeks and we are praying he will continue to grow and do well.

He did great with the cannula all day, he was on 2 liters with a concentration of about 25-27% throughout the day.  He continued to have a couple of episodes around the time that they start his feedings because of the reflux, but he is able to self recover.  He was doing so well on the cannula Mommy even got to kangaroo for an hour while Walker was eating his lunch!  It was so great to get to feel his soft head on my skin again, and he did well with his kangaroo time.  The nurse was even able to put a cute little stocking cap on his head, and said that hopefully in a couple of days we can start dressing him.  It is truly amazing how much we have to look forward to, and get excited about, even the smallest things like getting to put a cute outfit on him for the first time!  It's hard to believe he is four weeks old and he hasn't had the first stitch of clothing on yet!

Daddy came straight from work this afternoon to see his lil man, and he was so proud to see him doing great on his cannula!  Walker had a great Friday and we are hoping for many more days just like today.  Please pray that he is able to continue to be strong and do well on his cannula!

Hanging out like a big boy!
Kangaroo time with a hat that's too big!

Look at those eyes!
Proud Daddy!

Thursday, May 22, 2014

Day 28

This morning Mommy was anxious to see how Walker had done over night after getting his blood transfusion.  The nurse said that lil man had behaved all night and rested well.  He was able to start his feeds back at 7:30 this morning, he started back with his full volume of 16cc.  He was ready to get some of that good milk in his belly for breakfast.

Walker is having some issues after they start his feedings with his stats dropping, the doctors think this is due to his reflux.  This is pretty common in preemies so to help they are spreading the time they pump his feeds from 30 minutes to an hour.  Hopefully this will help Walker to not have the reflux as bad and help him keep his stats up.

He had a good day with his stats and kept his oxygen percentage at 23 all day which is great because room air is only 21%.  He had a visit from close family friend Gloria Ashby who hung out with Mommy and Granny and Walker for most of the day.  Everyone was very glad that Walker was having such a good day today after having to get blood yesterday.  Since he was behaving so well the respiratory therapist decided to try to lower the pressure on his CPAP machine.  He was on a pressure of 6 and she lowered his pressure down to to 5 which is lowest they will go on the CPAP.  After she lowered the pressure his oxygen concentration went up a little to between 20-31% which the respiratory therapist said was normal with the lower pressure.  We are really hoping he will be able to maintain this lower pressure through the night and continue on trucking!

This afternoon Granny and Gloria stayed with Walker, while Mommy  headed to town.  Mommy got to see her friends April and Mark who just became parents on Sunday to a beautiful baby girl.  Ralei Ann is absolutely perfect and it was amazing to get to meet and hold her, although it was very strange for Mommy to hold a baby with no cords and wires!  Mommy also went to a Rainbow Sparkle Fundraiser hosted by Nisamar Sechrist who also works at Collinsville Primary.  It was wonderful to see everyone come out to support lil Walker and make some great necklaces.  There was also Thirty One and Scentsy and everyone really enjoyed themselves.  We are so incredibly thankful for the amazing outpouring of support we have received, we are beyond blessed by the love and support we that are constantly shown and it helps us through the ups and downs of life in the NICU.  We can not express how every single message, text, facebook post, call, visit, gift, or just kind word means to us and we are beyond blessed by each of you!

We know you will continue to pray for Walker, an for us!

Eyes wide open, looking at Mommy

Love this boy to the moon and back!

Gloria with Walker

I could stare at him all day long!