Wesley's Birthday Party!

These are the pictures that were taken with our camera...before it bit the dust....GRRRR...more on that later....but thankfully I thought ahead and had family members also bring their cameras, and I know several pics were taken on our behalf...THANK YOU...but of course I forgot to snatch them off the cameras while they were here...so as soon as I can get my hands on them...we will post those too!

Daddy set the table for the celebration! I found all these decorations and party supplies at DOLLAR TREE! Woohoo!

at first I was going to go with a "jungle theme" to use some elephants in honor of papa john (like Rachel did for Eden's party) but I just didnt have the brain cells to come up with a cute idea for the cake/cupcakes....and when I remembered this sports theme was available at Dollar tree....this is what we came up with...I'm very pleased! Daddy was able to freehand the soccer balls and footballs and basketballs...and I'm impressed that we figured out how to tint white icing to be orange and BROWN...not chocolate...but brown...

Daddy even made a Birthday table runner...I accuse him all the time of being on pinterest....but he's not...he's just cute and creative!

bringing in the cakes and candles for the 2 birthday honorees...Wesley and his birthday buddy Auntie Rachel (the day before)....I know how special it made me feel to have a surprise birthday moment at Eden's party, so I wanted to be sure to make sure we did the same for her...

opening gifts

we got a family membership to the Nashville ZOO from Granny Franny and the Dudugjians! I am SO excited! What a great place to go with grandparents and friends....I know we have a lot of friends from Nashville who are members...playdate anyone? :)
maybe you can give me pointers about how not to freak out when my kid disappears in that awesome and amazing playground....

the Elmo card was a hit!

sweet girls!

sporty baseball themed stuff from Mommie and Daddy

he is so excited!

He got some other awesome gifts...but I guess our camera gave up the ghost before we could get pics of those...more to come, PROMISE!!!

I also just want to share....2 years ago on this day was probably the worst day of my life...it was the day that Wesley "crashed" in the Baptist Hospital NICU and had to be transported to Vanderbilt Children's Hospital....it was so sad, and so scary, so many tears and prayers and sleepless nights and scary medical terms and procedures surround our memories of his birth....so I am so SO thankful to be building happy joyful memories on top of the memories of those scary days...this day was one of those happy joyful days! 2 years is not a long time...at all...and it was so hard to hope back then that he would be so happy and healthy and strong and smart and energetic...I'm just amazed at all that has happened in the past 2 years, both good and bad....and most of all I'm thankful that he is here to share it all with us!  His body still carries some scars from his time in the NICU, and our hearts and minds still carry some scars too....but Thank you Jesus...Wesley Alexander (the great) is still here!

Baby Wesley Day 25 Friday 7/16

I was able to be fairly coherent after sleeping on that hospital version of a fold out couch and tried to make myself presentable without a shower. At least I didt have to worry so much about making it ti the hospital in time for rounds! Daddy made it just in time and i LOVED the fact that even though we were warned that we might not get to take w home, Daddy hauled thebaby seat to our room anywy! I'm usually a pretty optimistic person but this whole experience has tempered that a bit....so it was SO good to see Joshs optimism and hopefulness.

After dr s heard the report about wesleys night he didnt feel too worried at all about the little bit of weightloss and asked if we wanted to take him home. Um.....YES!!! I was prepaing myself for the long drawn out discharge process I'd heard about, but we were all done and ready to go around noon! I think one of my favorite moments of this whole adventure was when thenurse came inand took off his leads to all the monitors and I was finally able to roam around freely with my son and not worry about all the wires and tubes and such! What an awesome, long awaited moment! We were very excited to leave the hospital and I may have shed a few tears of joy and relief as we drove away! Whew! On to the next adventure! WE ARE GOING HOME!!!!

I can't begin to tell you how amazing it was to hold my baby for the first time without being tethered to any machine or monitor. I could walk around with him, so Daddy took a picture of me "making a break for it"...pretty sure you cant tell, but there are major tears in my eyes. Seriously one of the very best days of my life!

Wesley Day 24 Thursday 7/15

Happy Unbirthday Baby Wesley!
This was the date of my scheduled C-section....
Daddy came into Nashville today bright and early. He hung out with Jack for a while and then Mommie and Daddy headed to the hospital.
When we got there I was a bit disappointed to hear that Wesley's feedings hadn't gone "splendidly" overnight. He was getting overtired while eating and just wasn't able to take in as much milk as they were hoping. While I KNEW I didn't want to take home a baby whose body wasn't able to eat enough to sustain and would be at risk of getting dehydrated and/or losing weight. There was a good chance that this would delay Wesley's going home by a day or 2.
We had made plans and arrangements for me to "room in" with Wesley at the hospital and for me to do the bulk of his care and all of his feedings. Even though the timing of our departure might be changed, the drs felt that we could still go ahead with the rooming in and "ad lib on demand" nursing. They even brought in a lactation consultant to help. I liked the idea of going ad lib on demand" instead of sticking with a strict every 3 hours he take a bottle schedule....I had noticed in the past that sometimes he would be up for a while, or have a procedure or evaluation just before a scheduled feeding or even get a wicked case of hiccups, and would therefore be too zonked to take his whole bottle. If we could let HIM set the schedule, I really felt like we would get some better results.
We had a few visitors this day: Mommie's aunt Beverly came by to see us and that evening Pops and Bertie came by. When Daddy, Pops and Bertie left for the night (and I tried really REALLY hard not to be jealous about the ice cream they were going to enjoy at Mzee and Granny Ruthie's house) i settled down for a better than expected nights sleep on an uncomfortable fold out cot...guess you can sleep anywhere if you are tired enough. It took a few tries' but we finally getting into a rhythm with nursing however I was very discouraged to learn later that he had lost weight (15 grams which is the amount they like for a baby to GAIN in a day....not lose!) over the course of the night. I was SURE they wouldn't let me take him home....but we would have to wait until the drs rounds on Friday to find out.

Wesley Day 23, Wednesday 7/14

Is it bad that pretty much the only reason I know what day any of our nicu days has been is because of writing it up on the blog? The days of the week seriously blur together!
Finding Wesleys new room wasnt TOO hard this morning....felt like I had to park in the catacombs of the main hospital parking garage, and I am praying I am able to find my way back to my moms car....but I made it here!
I am trying to learn my way around this new unit and new part of the hospital...its a more private room with its own bathroom and a WINDOW! Seeing the sunshine sure is making me feel better!
Only a few hiccups since being here, like I didnt know there were different rules for my meal tray.....have I mentioned what a blessing these meal trays have been? Turns out they let nursing moms of nicu babies have 3 free meals a day while their baby is here.....which has been SUCH an amazing blessing! We would have gone broke if I had to purchase every meal while here....the food really is pretty good....but over in our other room I could order the food whenever I wanted and had it brought up, but over here there are strict time constraints which no one told me last night during my "TreeHouse orientation" session....which basically consisted of the night nurse showing me around. Oh well....I got to eat today with some interesting lunch buddies: birds!

I was able to nurse Wesley this morning but it was a challenge because in the middle of it his team of drs came in for rounds. I was glad to be included though, because they told me that the GOAL (if he tolerates his increased feedings well) is to go hom on FRIDAY!!! WOOHOOO!
His main dr is the same one who saw him when we first got to the nicu 3 weeks ago and he is the one who gives such interesting compliments. My favorite one of the day was "Your baby looks terriffic. His progress brought me the most happiness during my time in that nicu" I think Dr. S is very pleased with his handiwork! :) He seemed as pleased to have a former patient as I was to see our former dr. He even remembered that daddy is an NP.
They told me that the results of the echo showed an improvement in his pulmonary hypertension.... he has moved up from "severe" to "moderate" and they are thinking that it is something he will outgrow. There are no plans for any medication when we go home and they just want us to do a follow up echo in a month. YAY! I think Dr S would have discharged us today if he could have, he just couldnt believe how good Wesley looks and is ready to get agressive with his feedings....his IV nutrients are being discontinued today and he is going to full 2 ounce feeds by tonight! YAY! If all goes well with that they will want me to spent 24 hours with him starting tomorrow through our discharge so that he can nurse "on demand" to see if he maintains his weight and progress while nursing. (NO PRESSURE on mommie there! YIKES!) so I get to spend the night in the nicu tomorrow night. Should be interesting. Please pray that his feedings continue to improve! That is all that is in our way of going home!

Wesley Day 22, Tuesday 7/13

Highlights from our day:
* Wesley nursed well this morning...I am very excited that he is getting more enthusiastic about eating.

*After eating he was awake for over 2 hours! This was very surprising to me, I'm used to him conking out mid feeding but he was WIDE AWAKE! Suffice it to say, I didnt put him down for the entire 2 hours....I just cant get enough of his sweet alert time. He seems like a very content baby...if I am holding him he is happy just to gaze into my face or look around at what is going on....and the nurses have told me that he is usually content also when he is not being held, especially at night. I am hopeful that one positive of this experience will be that he will be able to sleep through a noisy house....I already know I wont be able to keep the house in total silence like we had with Jack. but since for the first month of his life Wesley has had to sleep with beeps and chirps and talking and such, maybe the noises of his big brother wont bother him as much.

*The Occupational Therapist came by today to go over some baby massage techniques which are really relaxing to give as well as to receive. She even said I can get Jack involved in some baby massage with Wesley and that Jack might enjoy getting a similar massage himself. I was also encouraged because she said that she thought he had "good tone" which is apparently very important with nicu babies. I had been discouraged a few days earlier when one nurse told us she didnt think he had good tone (but then she couldnt describe very well what that meant) but I'll take the assessment of ot anyday!

*Just after feeding this morning he got the long awaited follow-up echo. The tech who administered the test was not the one who had done his previous echoes, so she wasnt able to share any comparisons, but while she was finishing up, Wesleys team of drs came in and asked her for some insight into her findings....of course I didnt understand a word they said (they SERIOUSLY talk in code around here!) but I did hear someone say "oh, some improvement! good!" so I breathed a sigh of relief! As I was sitting and watching the echo being done, I just prayed and prayed. I prayed for strength and peace to handle the results, positive or otherwise and I prayed for the knot of worry in my stomach to go away! Thank you to all who prayed along with us about this important test!

*Speaking of his team of drs, I was VERY pleased with their news....they thought he was making good progress and said that depending on the results of the echo and how well he progresses with his feedings, he should be "looking at going home by this weekend" and my heart skipped a beat! YAY!

*I wasnt able to stay with Wesley as long as I would have liked due to 3 "bedside surgeries" scheduled for the day. The nicu rooms are set up so that they can be quickly converted and used at mini ORs and if a baby cant be moved for whatever reason, the surgeries can be done at the bedside. This is really cool, except that it means all visitors and parents have to clear out of the entire hallway until the surgery is over....so you can imagine how long our hallway was on "lockdown" due to 3 surgeries. I dont let it bother me too bad though, because I try to pray for the babies and their families instead. I am so thankful we werent any of those families during our stay here at the nicu.

*Turns out his echo did look good because just before I left my moms house to come back to the hospital for the 9pm feeding I got a call from one of Wesleys drs that he was being moved tonight to the nicu "step-down" unit. This is WONDERFUL news...it means we are that much closer to going home!! When I got to the hospital I was able to still find him in his old room, nurse him and then accompany him to his new room. It is in a completely different part of the hospital, with new parking and elevators and hallways and procedures. to learn etc. Should be interesting to figure out how to get there in the morning!

Wesley Day 21, Monday 7/12

Well, he's almost 3 weeks old....this has definitely been the longest 3 weeks of my life....but also one filled with lots of love, blessings, reality checks and gut checks. We've all heard it said that the Lord will sometimes put you flat on your back to get you to look back up at Him....well...I've felt pretty flat on my back several times these past 3 weeks...and I have been constantly reminded that I can't make it through this journey without the strength from the Lord, and the helpers He has put in my life to make it so much easier.
Last night my mom and I worked out that I can hopefully either get a ride or drive myself in her car up here for the 9pm feeding. YAY! The generosity and patience of Granny Ruthie, Mzee and Daniel towards us while we have invaded their space has been amazing!
It also amazes me that no matter what time I try to get to the hospital lately, I always seem to miss rounds....if I get here before 9....they seem to do rounds much later and I miss them while I am gone pumping or eating...if I get here 9:30ish I will get here just as they have left our room.....sheesh! Thankfully the nurses here have all been excellent with catching me up.
I learned today (After missing rounds) that they will now allow me to nurse him 2x per shift....and I'll be honest...that just wont happen during the night shift....9pm is the latest I can drag my bootie up here....but it means that I can nurse him at least 2 times while I am up here during the day!! YAY! They have also determined that one of the criteria for him to go home is that he tolerate at least a 2 ounce feeding each time....as of this morning he is allowed to try 1 ounce and this afternoon/evening it will be increased to slightly above that....so we are getting closer! They are also discontinuing some of his iv nutrients...the lipid (which is a fancy name for FATS....which I find so interesting....most of the population is told to limit the fats in their diet....and he is getting it sent sraight into his blood) but since he is getting more milk they dont feel the need for the lipids anymore.
I was very pleased with his nursing this morning...I think that he and I still have some learning to do about each other and such....but I dont think it will be long before we have each other better figured out. For example....the past few times he has NOT been enthusiastic about switching sides, so today I was patient and I played with him, and even made him a little mad with some tummy time for a few minutes....and then lo and behold, he was ready to eat again. It's exciting to get to know my baby like that.....instead of feeling sad or frustrated that he spends probably 2/3 of his day being cared for by nurses, I am trying to tell myself that his nurses are different almost every day, so there is no way he is "bonding" with them like he hopefully is with his parents, who are the same every day. Plus he spends so much of that time sleeping....it doesnt really count anyway, right?
PLEASE Keep praying for the echo to get good results tomorrow morning (not sure when we will get the results, surely by Wed morning) and that he continues to make good progress with his feedings.

Wesley Day 20, Sunday 7/11

I didnt get to the hospital today until after noon, but I enjoyed some sweet snuggle time with my sleepy boy. Our nurse came in to update me...she said that he has been approved for feedings up to 24mL (about 2x more than yesterday) but that so far today he hadnt been able to keep that much in his tummy...one time he even spit most of that back up! That's the first time I've heard of him spitting up at all, so I am hoping this isnt a trend that will stick around....because that wont help him get better or get home any sooner. She also said that the dr has agreed to let me try nursing him once per shift....basically once every 12 hours....which might be interesting because shift change is at 7, but his first feeding after shift change will be 9pm....I wonder if I'll have a ride to and from the hospital that late...hm.....
Our nurse also said that she thinks that even if his echo on Tuesday is PERFECT she still thinks we will be here for "a while" because of his slow progress with feeding and waking up his digestion....but that he might surprise us all and get more agressive with his feedings. We'll see. I hope he will.....trying to think optimistically and NOT live in denial here....because we REALLY want to get both our boys home and live in the same house again... have I mentioned that before???
Today we took Jack to Panera Bread for lunch and all 3 of us saw a family nearby who had an adorable baby girl...Jack and I talked a out her cute chubby cheeks and Josh must have read my mind when he mused "are we ever going to get to take our new baby out like that?" I was thinking the same thing....it's not a nice feeling to be jealous, especially of total strangers.
Please keep Wesley and his feedings in your prayers, and all of the rest of us too. We are all trying to stay strong, patient and optimistic with this "waiting game" where his primary health concerns seem to be resolving, but other residual issues are now being dealt with. Also, go ahead and start praying NOW that his echo on Tuesday looks GREAT! Thank you!

At his 3pm feeding I got to try to nurse him...I tried really hard not to get my hopes up too much and then get disappointed, but HE DID GREAT! (Sorry, no pics allowed of this momentous event! :) It was very exciting!
Also, Granny Ruthie was here around that same time...she is determined to see this boy with his eyes OPEN....but unfortunately he did not oblige....until later:

"What is going on?"

"Umm....Dad? You're not REALLY making me do the hokey-pokey, are you?"

Our nurse today told us that she feels he doesnt have as much "tone" as a baby his age and size should have....so we tried giving him a little work-out today!

Wesley day 19 Saturday 7/10

Happy Birthday Granny Ruthie!

We were VERY excited this morning to walk in and see this:

NO TUBES! For the first time since the moment of his birth we can clearly see his sweet little face! I knew yesterday they had taken out his feeding tube, but apparently during rounds this morning his drs decided to let him have a try without his oxygen tube as well...and so far he is doing GREAT!
This pic is a copycat of this post...oh what the hey....here they both are in one place...I can tell they are brothers?? Can you? Daddy has been sweet and said several times to me "You make such beautiful babies!" to which I must reply (because it is true) "are you also calling yourself beautiful...because they both look just like you!"

Not many other changes to speak of...no word yet on starting to nurse...hopefully soon...but his feedings have been slightly increased from 10mL to 14mL.....and he seems to be doing well on that too. I just got word that there is another surgical procedure being done on his hallway... I sure hope they let us back in to see him before we have to go, but you never know! Thanks for checking in on us and for all the prayers.

Wesley, Day 18, Friday 7/9

This is him right after his tests were run, just as awake and alert as can be! I was emotionally spent, but he was content and ready to party!

We got back just a little while ago from having his tests run...they did one test to see if he was refluxing his food and if that was irritating his lungs (no reflux!) and also to see if he was aspirating any of his food into his lungs (no aspiration either!) We are glad that both of these tests were negative because the dr who explained them to us said that surgery might be needed to fix those problems....Our nurse said I could go down with him to radiology for the testing and was telling me about how cool it was to watch....and it was very interesting to watch the screen and see what was going on...but it would have probably been a lot cooler if it wasnt MY child on the table screaming his head off....he wasnt in pain or anything, just mad and letting us know he did not appreciate our holding him down for all the xrays. In between the 2 tests they let me hold him and I just broke down and cried....its upsetting to see your baby cry and have nothing to do about it....and it was frustration because we were told that they didnt think these tests would show any results, other than to rule out 2 possible causes....so he didnt HAVE to have the tests run....it just overwhelmed me to think about all he has been through in his short 18 days of life and how much of this newborn time has been taken away from us due to his being confined to the nicu. It also didnt help my emotional state that for the next hour or so everyone who came into our room knew about my emotional breakdown and were trying to be sweet and sympathetic, and as soon as I would get calmed down it would just upset me again.

So, even though the day started off rough (at least for me) the next several hours held lots of good things:

*after his procedure I was sure he would be totally worn out from the experience (I sure was) and for some reason he was SO alert. its really fun to interact with him when he is so awake because he has such good eye contact and looks straight at our faces.

*the resident dr came and spoke to me because I had missed rounds due to going down with him for the procedure. She informed me that he has had his last dose of pain meds and is now off of them completely, unless he requires and "as needed" dose....which we dont anticipate. She also said that he is off the vapotherm, which is a special oxygen treatment, and he is now using the oxygen from the wall. Best news of all is that she said there is a chance we can start trying to nurse this weekend...if Wesleys doctor agrees! YAY! Maybe I wont be connected to the "machine" forever!

*The cardiologist consult came by as well. He said that he feels Wesley's heart looks great and the condition of his heart and the elevated pressures should not be causing him many problems in the near or far future. He basically said that given all the "trauma" his lungs have been through the past 2 1/2 weeks could still be causing some residual irritation manifesting itself as pulmonary hypertension, and that hopefully by next Tuesday's echo we will see great improvement. Based on the results of that echo they will be making some big decisions about the rest of his care. Basically he thinks that all Wesley needs is time and a watchful eye.

From what I understand, we do have time to give him because they dont want to send him home until he is on full feeds (right now he is still only getting about 2 teaspoons every 3 hours which is no enough to sustain him....) and the main thing we are going to try to do the next several days is to give him time to heal and get his feedings up and give his lungs and heart a chance to rest and heal.

Just as I was leaving today the nurse removed his feeding tube and was about to feed him another bottle. I was so excited to see more of his face without all the tape and tubing that I grabbed the camera to take a picture....and this is the sad face I got....oh well....its still HIS cute face!

Wesley day 17, Thursday July 8

Today held a few changes for Wesley. The drs agreed to increase his feedings back up to 10ccs since his xray looked much better. They also reduced his oxygen down to 21% which is considered "room air" meaning that he may not need the nasal cannula much longer....I think.... but I could be wrong about that....his pain meds are still at one time per day but the dose in cut in half, so I'd imagine we will be done with that very very soon.
Just after I got up to the room today we were told that they would be doing surgery again down the hall and all parents would need to leave, so I got very little time with him this afternoon (hoping to get back in to see him later this evening...depends on how long the surgery lasts). As we were leaving we were pulled aside by one of Wesleys drs...she ushered us into a quiet private room, which slightly freaked me out....but she assured us that it wasnt anything earth shattering, she just wanted a quiet private place to discuss some changes in his care. A pediatric cardiologist has taken a look at his previous echoes and feels that the tiny dose of nitric that he is on through his nasal cannula isnt doing much for his pulmonary hypertension, so we will probably be discontinuing that treatment within the next 24 hours....which is good news....and they are planning on doing 2 swallow studies to rule out if aspiration could be whats causing his pulmonary hypertension (they dont think it is....), and if its not, then there could be a few other options about how to control/cure it. While I am glad to be rid of the nitric treatments, it does make me a little apprehensive that they dont know what is causing his breathing issues, but at least is sounds like they are confident in their plan to figure out what is going on. I also thought it was nice that she answered all of our questions very clearly and she told us at the end that we were asking very intelligent questions....which I can see would be true given my husband is a very intelligent healthcare professional. :) I should hope he would ask an intelligent health related question or two.
In other happenings today, a dear friend I met in Cookeville (who has since moved away to GA) drove in to see me and to meet Wesley. It meant so much to me that she took time away from her visit with friends in Cookeville to drive into Nashville to visit for a little while. I am really missing Cookeville and my husband, our friends and our house, my garden and just the familiar surroundings. Maybe I would be missing it less if I were getting to enjoy all the things that Nashville has and Cookeville doesnt (like the restaurants, shopping and TARGET stores) but given our current situation, the fact that I am almost always at the hospital or my parents house and I have no car (and is really not supposed to drive at this point anyway), this extended trip to Nashville has not been as laid back as our previous trips, to say the least!

Wesley Day 16 Wednesday 7/7

Still not a whole lot changing today, other than his pain meds have been reduced to once a day and he hasnt needed any prn doses for several days!!! Honestly I think he is much calmer now that he has more food in his tummy. Nitric is staying the same because his echo showed that he still has some elevated pressures in (I think) his pulmonary artery which is also causing him to breathe really quick. When I asked them if there is anything else the Drs can or will do to help his hypertension, the nurse said "just time and nitric..." so I guess I need to turn on the patience in high gear. They want to feed him more, but his high rate of breathing combined with his deigestive system concerns means that they are just keeping his eating levels to a minimum...but boy is his eating like a CHAMP! The first bottle she gave him she said he gobbled it down so quickly she felt like she had barely gotten it in his mouth at all. The second bottle she said he was a little bit sleepy for, probably due to breathing so hard wears himself out. It seems like pretty often when he is just lying in his crib his breathing will get really fast, but a lot of the time if someone gets to hold him or interact with him his breathing will slow down to a much better level, at least for a little bit. I wish I was around more to keep him calm and even. When I asked her today about getting to nurse she said that the drs will want his breathing to be slower and for his feedings to be built up to a greater amount. Right now he is eating about a teaspoon at a time, and sometimes that will wear him out, and nursing requires more strength and stamina. Also, we dont want to feed him by mouth if he is breathing fast because of thee chance that he might aspirate and that could be a risk for pneumonia...and we dont need anything else added onto his plate right now....we very much like it when he is improving and I am trying to also stay peaceful and content about his days where nothing much has changed and he is just "hanging out" so to speak.
Sometimes I feel like I get discouraged on those days because we are SO ready to be home!!! Jack has expressed several times his desire to "sleep in my other bed" or "go home and see my daddy/maggie/toys" or even "Jack go see Baby Wesley too?"etc. We always reassure him that we want those same things, and we are trying really REALLY hard to be both honest AND reassuring to him about these things, but I have to really watch myself and not always say things like "We can go home when Baby Wesley is better" or "Mommie and Daddy stayed with Baby Wesley today" and NOT "blame" all of this on Baby Wesley...pretty sure Jack is smart enough to hold some sort of a grudge if we overdo it!
I would like to give another shout out to our wonderful families though...they have been so accommodating and awesome and generous! Every day I am praying for the strength to get through just TODAY...and thanking the Lord for my family...there is NO WAY I would survive all this without the peace and strength and peace from the Lord and my family's help!

Wesley day 15 Tuesday 7/6

For such a busy day, not a whole lot changed medically. Wesley got a bath today and I got to help...he is NOT a fan of baths at this point, but he sure looked and smelled better afterwards! No pictures of his bath since I was elbow deep in soapy water myself! We'll try to get a picture of his first bath at home.

Around that same time as his bath he also go a new bed!

His nurse decided that he didnt need the nicu beds anymore since he didnt need the the heater or isolette features and he wasnt going for any surgery...which is all fine with me! This is his new bed and it is SOOOO much easier to get him in and out and it takes up a whole lot less room!

I think he likes it! :)

Something else he really likes is EATING! They were a little concerned about his tummy overnight, but today they decided to just reduce the amount they were feeding him and keep trying. I got to feed him 3 bottles, and even though he was a little sleepy a few times and tried to choke himself a few times drinking so fast, we were very pleased with how well he was digesting it. YAY! He was also in a much better mood once we started putting food in his tummy...earlier in the day and overnight when they werent feeding him he was definitely NOT in a good mood!

As far as the rest of his news medically, the drs decided to keep his oxygen level the same and his nitric level the same until they read the results of his echo. I think I drove them a little crazy asking about the echo test results, but well....Daddy really wanted to know! Guess we will just have to wait until tomorrow to find out.

I felt that given today was my first day flying semi-solo (we are still staying with my family, but Daddy went back to work today) things went pretty smoothly. Lets pray for another smooth day tomorrow.

I took this sleepy picture because I thought his post bath fuzzy hair was funny and to give you a look at his chubby arm (or as one of his drs says it "ch-ah-bee"...I think I heard she is from Columbia South America and she is so sweet!) He gets lots of comments about his chubby arms or fat cheeks, but I guess when you get a lot of 1 and 2 pound babies in the nicu, 8 pounds 5 ounces is "ch-ah-bee" to say the least!

Wesley Day 14, Monday 7/5

we got a new attending dr today. Wesley did a great job last night and this morning drinking his bottles. At lunch time he was breathing a little fast so the nurse decided to tube feed him and let him suck on his passy to help him still equate the sucking action with a full tummy. We still cant get a straight answer about when we can start nursing...I'm trying to to get frustrated about that. :) We've pretty much spent the afternoon cuddling with him and giving him as much attention and positive physical interaction as we can.
This afternoon the nurse wanted to feed him again, but even though his mouth really REALLY seems to want to eat, his tummy and intestines, etc still may not be awake enough yet. The drs decided to skip a feeding and check again at 8 or 9...but they didnt seem too worried...although they may order an xray on his tummy later just to make sure. I'm trying not to worry too.
A BIG prayer request for our faithful prayer warriors: Josh goes back home to Cookeville tonight and is back to work tomorrow in Livingston. Jack and I will still be staying here in Nashville with my parents and close to Wesley. I'm praying SUPER hard that my feelings of anxiety will subside and that peace and strength will replace them...I'm not so much worried about Wesley's health at this point, I believe we are out of the woods unless something CRAZY happens, but I am not sure how I will be able to juggle at 2 year old who has shown us this past week or so that he really REALLY needs his parents around for guidance and love and a newborn who also needs us around....especially if we start trying to establish breastfeeding etc this week. I'm just not sure how I will be able to be in so many places at one time...all without my own car, and basically still being on driving restriction anyway. All of this coupled with still trying to recover fully from my c-section, being up every 3-4 hours at night to pump and at times being to anxious to eat a full meal have not worn well on me in the past 2 weeks. Ill have several good days where I feel like I have it all together, and then start stressing out again. I know that I will not be very effective at ANY of this tasks if I am not at my best, so could you add me, Jack, and Josh to your prayer list in addition to Wesley?

Mommie musings from the nicu

just a glimpse into a few of the thoughts that have run through my head during the long hours in the nicu:
*just how old are some of these nurses and doctors? I know this is a teaching hospital, but to learn/figure out that several of his nurses and many of his barrage of doctors/residents/interns/fellows are younger than us, or at most, our same age.....guess we have just reached that point!


*I am learning that each nurse has their own way of doing things and their own things they are picky about....some are picky about noise level or the brightness of the room, some are picky about the # of visitors or washing your hands up to your elbows or gifts in the babys bed, etc. Several dont appreciate being reminded about something the drs (and us as parents) feel strongly about, like weaning our child off of strong pain meds...some are very "scared" of jostling or pulling out certain ivs or "lines" while others dont give it a second thought...its very interesting, and honestly it doesnt bother me much at all, because when they are expressing a strong opinion about something like that it is mostly f not completely with my child's well-being in mind and their job is NOT to keep the parents and guests happy, but to keep their patient healthy.


*there is a fine line between optimism and denial and sometimes I wonder what side of that line I fall on.


*how am I supposed to balance and juggle 2 little boys who need me...and I'm NOT talking about when they get home....that is sounding easy compared to caring for and bonding with 2 little boys who need me who currently reside in different places. I want my 2 boys in the same place so I can love on them at the same time


*no matter how much they try to make Vanderbilt Childrens Hospital a fun happy, nonthreatening place for children to have their medical needs met, it is rarely fun, happy or nonthreatening for the parents.


*Now that my baby is doing so much better I am able to look around and see these other sick children. There is a play area that Josh and I eat some of our meals at, and lately I can barely go there without crying to see these sweet babies and young children who are so sick. This whole experience is making me realize that you cant take your childs health for granted.


*12 days ago we were given some name wrist bands. On them his name is listed "Cooper, BBOB" which stands for baby boy, outborn" They reassured me that his full name would be listed on a new wristband for us once we had been there for a few weeks. I can remember thinking "we won't need to be here that long...so I wont worry about that..." (again, optimism or denial...not sure which...) well, the other day we got name bands with his name on it. The receptionist who had me fill in the paperwork apparently thought it would be good news or exciting to have his real name on our wristbands...bless her heart....it was hard for me to get excited about the fact that we are still here...




*shall I even admit how naive I have been? The other night at bedtime Jack started in on the whole "no, dont leave me, I hear scary sounds, lay down with me, I cant sleep, there are dragons/ghosts in my room" thing and I honestly wasnt sure at the time if it was a delay tactic or for real fear....but regardless I wasnt sure what we should do about it....should we give in and lay down with him until he falls asleep because that would be the easiest thing and right now we are in "survival mode" or tough it out and make this a life lesson....in the end it only seemed to last 1 night...so we all survived. The naive part comes in that I realized....it had never occured to me that BOTH of my kids would throw me for a loop at the same time. I feel prepared for them to REALLY need me at separate times, but for them both to have different problems at the same time that I have NO idea how to deal with...hadn't really crossed my mind. Now it has, and I'm trying not to think about it.

*Since I'm already in the hospital, do you think they could just insert an iv and let me take dr pepper intravenously?

I'm sure there will be more to come...

Wesley Day 13, Sunday July 4th

He is making some awesome progress! He had a good night last night, his nitric oxide os being weaned from 3ppm to 2ppm and his vapotherm/oxygen is weaned from 4 liters per minute to 3 liters per minute. His oxygen level is also weaned to 28% which is awesome....21% is room air. We are so encouraged. His antibiotics are all done and his pain meds are being weaned away as well. The biggest news of the day is that he got to take his first bottle!! YIPEE!! At first they said no feedings at all today, then they decided maybe a tube feeding to get his digestion awakened, the the dr came by to suggest dipping his passy in some milk and letting him get a taste and seeing how he did with that.....lets just say that was a big BIG hit! He LOVED the taste of milk! Once the dr heard that good news she decided that he could try a bottle feeding tonight and we talked her into bumping it up to this afternoon and I got to give it to him! It was only about 3 ccs which is basically the equivalent to a teaspoon, but he gobbled it down so fast...drinking from a bottle didnt faze him one bit! We have been told that the 2 biggest hurdles to overcome are weaning off the ventilator (SUCCESS!) and teaching them to eat....looks like we are on our way there!
Granny Ruthie and Mzee came by this afternoon and she was VERY excited to get to hold Wesley for the first time. It was nice to get to share him.
We overheard the attending dr doing an abbreviated set of rounds, basically he was going down the hall and giving a short report about all his patients...when he got to Wesley's room all he said was "Cooper is tremendous" and walked off...so I have been calling him "Wesley the Tremendous" all day!
I have a feeling that I am about to get very impatient with nicu life....not that they are giving me reason to be impatient. While he was SO sick and sedated I was ok with him being here and having to leave him each night because I KNEW he was getting care that I would NEVER be able to provide. But now that he is so much more alert, and can get upset, and is feeling better and we are getting to bond with him...it is getting SO much harder to leave him for mealtimes or at the end of the day. I think I am also getting impatient for him to get out of here because I want BOTH of my boys in the same place so I can love on them at the same time. Jack has been having a hard time with being away from us and that coupled with my anxiety with leaving Wesley has led to some interesting stuff. Thankfully Josh has been off work for the past 2 weeks or so, and we could "divide and conquer" and get Jack put to rights again and still feel like we could meet at least SOME of wesleys needs, but next week Josh needs to go back to work, at least for a partial week and I will be parenting BOTH of my boys on my own while he is gone. I still have grandparents and aunts and uncles to help out, and they will be an awesome help, but it also sounds exhausting.

to lighten the mood...

during a particularly stressful time in the nicu I came across the following quiz in my MOPS magazine. I'm not sure whether to blame it on the meds, lack of sleep, hormones, stress or what but I very nearly wet my pants from laughing so hard. Even the Wesley;s nurse had to ask if everything was ok...hopefully you will find it funny as well...but don't wet your pants! :)
You Know you're a mom if you've ever:

1. Have you ever spit on a kleenex to wipe another persons face?
a)weekly
b)hourly
c)who needs a kleenex? I use my thumb.

2. have you ever excused yourself to "go potty?
a)only once
b)just when I'm overtired
c)wait-why? is that weird?

3. Have you ever danced and/or sung in celebration of someone else's potty success?
a)no, potty training is a somber lesson
b)yes, when it is earned (or I will when my kid is old enough)
c)Not just for someone else;s success-for mine too. I call it exercise!

4. Have you ever carried on a conversation with an imaginary playmate?
a)no, our playmates must be corporeal.
b)Yes, when I was young I did
c)Of course! They go everywhere with the family.

5. Do you pack for a trip to the grocery store like you.re preparing to climb Mt. Everest?
a)yes, extras of everything!
b)I have a dried baby wipe and a diaper thats 2 sizes too small in my purse. Does that count?
c)Nah, I can fashion a diaper or a clean pair of pants out of gas station receipts if I have to.

6. Do you possess extensive knowledge of another person's bodily functions?
a)I keep it in a notebook and I make cook graphs out of the data in my spare time
b)I know as much about mine as I do my kids
c)I'm pretty sure one of them pooped and forgot to flush because I can smell it from here.

7. Have you ever performed an extraction of a cheerio from a nostril?
a)Yikes! I'll leave that up to the trained professionals!
b)No, but I'm really good at using that blue booger sucker from the hospital
c)Is that anything like digging a penny out of a mouth filled with sharp little baby teeth? Because I have scars from that.

8. Have you ever developed a weight loss plan that included avoiding eating food from your kids plates?
a)yes, I'd rather go to weekly weight loss meetings than touch half-chewed food.
b)I'm not really tempted by pureed broccoli and beef
c)My current weight loss plan is to continue to let my kids eat off my plate.

9. Have you ever looked at your legs half-way through the day and realized you'd only shaved one of them?
a)wait-let me look. No, they're equally shaved
b)I dont bother wearing shorts or skirts anymore.
c)Yeah, I'll get another one the next time I have more than 5 minutes to shower.

10. Have you ever gone to sleep with one person and woken up with three?
a)My kids never get out of their beds without me
b)Why else would we have a Californial King Bed?
c)What is this magical thing you call sleep?

11. Can you remember the last time you went to the bathroom without an audience?
a)Yes, we have a deadbolt on the bathroom door
b)Yes I can, I stopped in the hospital lobby bathroom on the way to deliver my first child.
c)I can go without an audience, but it doesnt last long.

Wesley, Day 12 Saturday 7/3

I'll add captions to these pictures later!

Looks like Wesley WILL be celebrating July 4th a day early. He will be declaring his Independence from the Ventilator!! Daddy caught the end of rounds this morning and got to hear a good report. We were pleasantly surprised to see Papa John already in the room visiting with Wesley when we arrived. We thanked him for "babysitting" for us. ;) The doctor told us that hopefully when his nitric is weaned away he will also no longer need the vapotherm (hi flow nasal cannula) and hopefully will need either just the regular cannula or no oxygen help at all. Hopefully we will start with bottle feedings tomorrow with a little tube feeding if needed. If he does well with bottle feedings then we can start trying to nurse as well. That will be a very happy day for mommie, lets just say I am SO tired of the machine! Plus that means even more snuggle time with my youngest son. We are looking forward to trying to hold him for a few minutes once he has settled down from the ordeal of ventilator removal.

Wesley day 11, Friday 7/2

at rounds this morning his dr was still very pleased. he called today a "weaning day....weaning off ventilator, weaning off nitric oxide, weaning off pain meds, last day of antibiotics and steriods, and the chest tube has come out. Hopefully by sometime tomorrow the ventilator tubes will be out as well! Other than the fact that it is keeping him alive, I am not a fan of the ventilator...(but who would be?) it is keeping him from nursing, and it gets clogged with yucky stuff, making it hard for him to breathe. It also prevents him from making any noises when he cries. Now, not hearing a baby cry may sound like a good thing...but since we havent really ever heard him cry, right now it would make me happy to hear his voice, but even more than that....right now in the nicu, when he cries they cant hear him, therefore they cant comfort him....and THAT disturbs me. I'm not criticizing the nurses, their jobs are to tend to him medically, and they are doing an amazing job at that, and I dont expect them to hover at his bed waiting for him to cry...NOT a good use of their time! (Especially since today is the first day that he is sharing a nurse with another baby....he is finally not so sick that he needs such individual attention! YAY!)....but back to the vent.... I've watched the nurses, and if they can hear a baby crying, they will go in to tend to the baby....so I am anxious for him to get these tubes out and let his needs be made known!I have visions of those babies in 3rd world orphanages whose cries have so long been ignored that they just stop crying when they have a need...I KNOW that is not what is or will happen here...but I am eager for his cries to be heard.

wesley day 10 Thursday 7/1

Today was SUCH an awesome day!!! Instead of constant baby steps, we had some huge strides in improvement!! During Rounds Dr. Shenai declared that Wesley is doing "splendidly!" Music to my ears! Because his breathing has improved so much, the Dr ordered that his nitric could be cut in HALF, and also that the settings on his ventilator could be turned way waaaay down! He was doing so well breathing on his own that they even turned it down further to "wean" mode meaning he was doing all the breathing on his own, it was just measuring and kicking in only if needed.

As you might expect, most of the nurses in the nicu are women, but there are a few men, and today we had one of them, who also happened to be the day's charge nurse (ie very experienced nurse in charge for the day)...therefore, he was a bit more laid back and a bit more comfortable allowing things that were a bit more agressive. I was thrilled that as soon as the words of Dr. Shenai's orders were out of his mouth about the ventilator, Wesley's nurse was making the changes...before the dr was even out of the room. Another reason I really loved Wesley's nurse was because he was the first nurse who wasn't afraid to let us HOLD our baby for the very first time...of course one reason may be that the arterial line in his foot came out that morning too...fear of upsetting that line was a major reason the nurses were afraid to let us hold him. Anyway, what an awesome amazing day!

man, I am in LOVE with this picture!

He was awake enough that both of his eyes were open at one point. during the end of the day rounds Dr. Shenai decided that he would hopefully be off the ventilator and on a nasal cannula withing 24 hours. He also declared that "Your baby brought us the most satisfaction today"...what music for a worried nicu mommie's ears! 

Wesley day 9 Wednesday 6/30

According to my notes about this day, his collapsed lung was still looking worse and one way they were trying to help it was with "percussion therapy" which meant a respiratory therapist would come by several times a day and take a tiny foamy little hammer like device to tap his side, back and chest in hopes of loosening up whatever was clogging up his lungs. It was very interesting to watch, but they were gentle enough that it didnt seem too rough.
One of the hardest and scariest things was that there was a "code" on our hall meaning a baby was in serious trouble and they were preparing to do emergency surgery in the baby's room. Therefore they had to rush all non-medical personnel (ie parents and visitors) out of the hall. While I was of course comforted that it wasnt my kid, it scared me to think that it COULD be my kid.
While we were waiting for the hall to open back up we had another of our friends visit. It meant so much that Heather took time away from caring for her brother who was across campus at Vandy, to come and visit with us. We ended up having to leave, but Daddy came back later in the evening. I only ended up having about 30 minutes with Wesley, but it was a wonderful 30 minutes since he was finally awake enough to start opening his eyes. What a victory!!