Home Days 1 & 2

Home Days 1 & 2: it's been busy around here and I don't see it slowing down anytime soon. I've got a system for Wyatt's milk and meds all figured out but that still requires a lot but worth it & does save me time. James and I figured out a way to make Wyatt mobile when we need to leave the house for doctors appointments with my backpack. It holds his milk pump, oxygen tank, monitor and power cords just in case! James is the master packer! Wyatt has done well, he slept through both nights (12 & 9 hours). He has thrown up both nights between 3 & 7 multiple times w/ his reflux but that's really the only time of day. The doctors are okay w/ that. He weighed in today at his pediatrician's at 10lbs! She was really on top of everything. It felt like she went through Wyatt's chart from parkland with a fine tooth comb. He got his 4 month shots like a champ! Cried for about 30 seconds then passed out. He took a 3 hour nap Tomorrow we are going to see Dr. Lo, who delivered him for my yearly. It's so good to be home as a family. James and I just feel so blessed that Wyatt is our son!!

Day 109: Wyatt's Homecoming

Day109: We. Are. Home. Wow. It's real. All three of us, four if you count Ronix, are home together for the first time. It's been an emotional day. Bringing Wyatt home has been overwhelming in a good way. He's already keeping us busy with his schedule but God knows we can do it and we are. Saying goodbye to our nurses and NNPs was SO sad. Those ladies have been my community/"coworkers" for 109 days. I say coworkers bc we worked together to bring Wyatt home. I have officially gone crazy on friend request bc now we can "officially" be FB friends now that we are discharged. Sadly, we did not get to say goodbye to all of the doctors we've had and finding any of them has been quite the task. ;). Wyatt's ride in the car went great. He was awake for a while and then fell asleep. We got home and immediately had to get his milk going, we were an hour behind (we're back on schedule now). Ronix seems to like Wyatt. He licked him a few times and layer his head in his lap, asking to be pet. We have to watch that, his head is heavy and Wyatt's stomach is sensitive. Wyatt stayed awake for a little while and chatted with me while taking in his new environment and he's been asleep since around 7 next to us on the couch. Love listening to him sleep. The medical supply company couldn't make it out tonight, we left too late but should be here with the rest of our supplies in the morning. I'll probably sleep up stairs with wyatt on the couch. It's easier then moving everything down stairs. We are just praising God tonight for Wyatt, being home and are so thankful for his promises and how good he really is and has been to us!!

Day 108

Day 108: We had a really good night with Wyatt and we even got a little sleep. Wyatt actually slept most of the night and into the morning. He'd cry a little and he'd just need his paci put back in his mouth. If he did wake up, we'd swaddle him and he'd just fall right back asleep. Most of our not sleeping was more from lack of space for 2 people sleeping. James brought a pad to sleep on but we never pulled it out, we just cuddled really close on this "couch" thing. If one of us wanted to turn over, we both had to. :). We left the hospital about 10:30 to come home and rest and just do some last minute things here and for our primary nurses. We can't believe he comes home tomorrow!! It's crazy. We should be home in the afternoon some time!!! Yea!!! I hope I can actually sleep tonight!!! It's like a kid at Christmas!!!

Day 107

Day 107: James and I took the morning to sleep in and rest (James more than me but he needed it big time!). Then we did some stuff around the house. I worked on Wyatt's nurse thank you gifts and James hung Wyatt's baby monitor. Wyatt fell asleep a little before 3 an still sleeping now (it's 8:30). Hope he continues but if not we'll cherish all this time we've for with him alone!! His breast milk is back to a fully fortified 30 calories. He's only had a few really small spit ups. And of course he jut woke up. :). We'll let you know how our family sleepover goes!!! :)

Day 106

Day 106: Things are moving along nicely! Wyatt was as cute as could be today. He slept a lot, well any time Nurse Emily or I held him. And would play with his mobile when he was in his crib. The medical supply company came to the hospital and gave us one of our oxygen tanks, a feeding pump and all that goes along with that. There's more but they will meet us at the house on Monday after we get home. I'm feeling less fearful today, PTL. I'm getting a better picture of what this will look like, which I am sure will all change as soon as we actually get home. Haha. Just a few more days!! :)

Day 105

Day 105: Wyatt had another good day. He was awake all of maybe 15 minutes of me being there. It was just perfect. We go to cuddle and I was able to answer and make phone calls in preparation of him coming home. It's still hard to believe that he'll be here, in our home in 4 days. The doctor went ahead and said we could go to only breast milk today! Yea!! He throws up so much less with breast milk. I bought Wyatt and NapNanny today. With it being a return and on the clearance shelf, my 20% off coupon and our store credits it cost us nothing! It should help with his reflux and I can easily move it around the house! James has had probably one of his busiest weeks at work, poor guy is tired!! Good thing he gets a bit of a break next week- it'll just be a different kind of tired! :)

Days 103 & 104

Day 103: Wyatt was sleepy today! I think the up all nighters are catching up to him. So we spent most of the day snuggled up sleeping. He spit up twice while I was there, both were while he was on his formula and none at all today while he was on breast milk. I just feel like that is telling us something. James is very busy at work this week so he did not get there until 6:30 which puts us just now warming up dinner. All worth it because our man "should" be home at the second half of next week. That's if we can figure out his feeds. Praying that boy can keep it down and he continues to gain weight! We can see the light!!! :) An audiologist came and gave him his hearing test today. He wanted nothing to do with it so we tricked him into falling asleep and gave him the test. He did awesome!! That's great considering he keeps failing his no cannula test!

Day 104: Wyatt slept most of the day again, probably bc he was up a lot last night. Two and a half hours of that was uninterrupted and in my arms. I sat there imagining how we would be sitting at home, laying on the floor, the couch, in his room- so excited for that day and so excited that day will be MONDAY! As of right now, he comes home Monday. I cannot even believe it! Such mixed emotions. Obviously excitement and joy but also worry and fear of the unknown. This whole journey has been a walk of faith but let me tell you, this next step is the biggest leap of faith we've ever taken. I know we will ask the same question all parents do, "Oh crap, what now?!?". We are working with the NP's on getting everything in place, home health, medical supplies, insurance, ect... I'm about to buy target out of hand sanitizer. Wyatt had my breast milk all day today and did not spit up once!! He's still on formula at night, so we'll see how that goes. We are just putting one foot in front of the other walking in blind faith! So thankful tomorrow has already been written!!

Day 102

Day 102: So this morning when James and I called in to check on Wyatt's night we got the news that he didn't sleep at all. He was busy chatting and looking around at everyone in and out of 304. It's a busy, loud and bright room. With that news, I knew that if he hadn't been moved out by the time I got there, I was going to speak to whomever I needed to to get him out and ASAP. I held one cranky, grumpy pants little boy today. He'd fight falling asleep and nap for a little bit, wake up all smiles and then be super cranky again. So, good news, we are out of 304 and on the other side of the NICU. It's nice and calm over there. It will be so much better for him. I'll miss all my new nurse friends and Wyatt will miss all his ladies. He really enjoys flirting and making them all smile but it's for the better and we're closer to bringing Wyatt home. His new doctor was saying "end of the week" and his NP said early next week if he takes his feeds in okay. He had a horrible throwing up night last night but only a couple today, one was large. He is also starting to get some of my breast milk in 2 of his feeds with the rest being the formula. Praying my breast milk is good and he has no negative reactions and that he can keep it down!!! We're ready to bring our Wyatt home!!

Day 101

Day 101: Wyatt seemed more himself today. A little more interactive and happier. I think each day we'll see more and more of him. His feeds have been reduced to 2.5 hours instead of 3! Then we'll have 1.5 not connected to the pump! At night they are still continuous all night long. They've ordered the actual pump we'll bring home and the respiratory therapist gave us an infant CPR video to watch and we'll go over some time this week. Everyone is moving forward as if we're going home soon! Yea!! I completely sanitized the house this morning! We will be a germ free home! ;). I think upstairs is where we will spend most of our time with Wyatt. That way if anyone comes over, they can stay downstairs (after hand washing & sanitizer still, of course!).

ONE HUNDRED DAYS OLD & in the NICU

Day ONE HUNDRED: It's hard to believe its been 100 days. The teacher in me wants to have a party with lots of "100" things!! And maybe some balloons!
There weren't any real changes today. They did change the settings on his nasal cannula to resemble what it'll look like at home again, 100% oxygen with a pressure of 0.2. He's been doing some spitting up, more than before his surgery but that can happen and were hoping it lessens. Also, his heart rate was a little high today, praying that's not a sign he needs blood again!!! James and I enjoyed just getting to hang out with him tonight. Praying he's ready to come home in a week!!! (now I've got to make sure we're ready at home!!!)

Day 99

Day 99: Wyatt seemed most comfortable in his bed today, so I left him there. I did pick him up and I got projectile vomited on... Yuck! He was also squirmy. He's such a happy little boy for his situation, praise God. He's back up on full feeds as of this afternoon. We'll do that this afternoon then we'll slowly start mixing the formula in with my breast milk until it's all my milk. If there is no blood in his poop and he's holding his feeds down over the next week, we'll get to bring him home. We are hopeful and are preparing but not forgetting that NICU life is often 2 steps forward and 1 step back. Help us pray our son home!!!

Day 98

Day 98: James stayed home from work today to rest some more. He is still not feeling that great. So, I drove down and got there right before noon. Wyatt was sleeping but his nurse wanted to put him back in his crib so I changes his diaper and picked him up very carefully. I don't want to scrunch his little tummy and cause him any more discomfort. He slept for quite some time. He'd wake up, kind of, and let out a cry and then go right back to sleeping. He did wake up and then I could just tell, he wasn't feeling it so I talked to the nurse. She called the NP and they got him some Tylenol. It took about 30 minutes to kick in. I knew it had when he stopped crying. Then he was just taking everything in and being just as cute as could be. James and I did find out yesterday that Wyatt's stomach is small. That can help explain his reflux and his inability to tolerate a larger feed. We may just have an all day "snacker"... Kind of like his daddy! Guess I should jump on board!! :)

The Morning After

Tears of joy rolled down my cheeks this morning when I called in the check on Wyatt. He is off the ventilator and back on his nasal cannula. They have not had to give him any pain meds since early this morning nor have they needed to give anything the take the "edge" off! In my heart I knew he would need the versed as long as he had the vent in. He's too active & social to stuck laying in one place. So thankful the doctors & nurses saw that too. It also gives me confidence in the discernment God has given me in knowing my son. (not to know it all, but trusting my gut.). I cannot wait to get to the hospital to hold and kiss his face!!! So thankful to have my faith as I have to trust the Lord through all this. He makes things good even in hard times.

Recovery

Wyatt did come out still on the vent. :(. He is doing better. He was obviously uncomfortable & in pain so they gave him something and he was still uncomfortable so he got versed (it takes the edge off) and it was like he had no worries at all and wanted to PLAY! He finally calmed down and
fell asleep. I couldn't sit there anymore and just agonize over everything. My stomach was getting upset. I know he is in good hands so we came home to rest. I may go back later. Thanks for all the prayers!!

Out of Surgery

Wyatt is out of surgery and we are just waiting to see him and walk back over to Parkland for his recovery. Dr. Schindel said everything went great, he looks good and the plan was to have him off the ventilator before coming back!! I sure hope that is the case!!!

G-Tube Surgery

Wyatt Update: We got an early morning call. Wyatt has been moved to the 1st surgery this morning. They are taking him over to Children's just after 7. We are on our way up there now! (so thankful my pumping schedule was off a little, I was up at 4:30!) From the surgeons perspective, they could do this quick and in their sleep. It shouldn't take long once he's actually under anesthesia. Such a whirlwind of emotions right now!! Praying for strength!!! Thanks to everyone who is praying with us!!

Days 95 & 96

Day 95: Wyatt was sprawled out asleep when I got there today. I changed his diaper and picked him and held him. He didn't wake up once in all of that! Then I needed to pump and so I put him back in his bed and he had some major reflux. It was so heartbreaking. I hadn't seen it be that bad. His nurse picked him up and held him so that I could pump and he was calm. Then I got to breast feed again and not 5 minutes alone, he was passed smooth out again. He pretty much slept on me the entire time. He woke up about 20 minutes before we left. We just talked and played him. The doctors changed his milk volume just a little today. His surgery is still schedule for Wednesday but we don't have a time yet.

Day 96: Wyatt was kind of asleep when I got there so I just swooped him up and cuddled and of course he fell fast asleep on my arms. We stayed that way until I needed to pump. Then I got to breast feed. James wasn't able to come up to see Wyatt today because he's got cold like symptoms. Not sure if it's really a cold or allergies. But we didn't want to take any chances. His surgery is going forward as planned for tomorrow. His feed will be turned off at midnight and he'll receive nutrition through IV fluids. Wyatt will also have blood taken in the morning as it is something they do for all surgeries. James and I will be able to walk over with him. Sending my baby into surgery again is heartbreaking but I trust the Lord and this is best for him right now. He needs to be home with us where he can thrive and we can care for him. Nurse Amber is caring for him tonight which helps the hard situation a little easier. She's going to clean him up and love on him. We don't know what time his surgery is but we do know he is #3 in line with the surgeon. Please join us in praying for him and all involved. We love him so much.

Day 94

Day 94: We had some really good quality time with Wyatt today. We snuggled, chatted it up And I read him a couple of his Jesus Storybook Bible stories. He just stares at the colors on the pages, it's so cute! The doctors okayed me to breast feed Wyatt once right after I pump. I didn't realize how much I missed that bonding time with him. I think he missed it too. The feeding pumps the NICU uses and the one that will go home are different. A couple days ago, nurse Angela ordered us a "kangaroo pump" to use so we could begin getting comfortable now and make our transition home smoother. We fall more and more in love with that little boy every day. I am overwhelmed with joy knowing God has BIG plans in store for him!

Day 93

Day 93: We didn't get to spend as much time with Wyatt today as we usually do. We took a mini road trip to Burkeson (south of Ft. Worth) to look at a SUV. We've been looking for a while and this week we kind of gave ourselves a deadline- pick one or stop looking until late spring... So we found one that was a really good deal. We haven't brought it home yet but we should have it Monday. It pulls the boat, gives Ronix his own space, safely in a different spot from Wyatt and it'll accommodate a growing family! :). Wyatt is good! The doctors didn't make any changes. Apparently he did not sleep all day. He was waiting in us. Once we got him in our arms, he passes smooth out!! He's cheering the Aggies on in style from the NICU in his spirit onesie while we do the same from home. I found some dairy free blogs today which will help me cook and go out to eat!! Yea! :). As of right now, we are pretty sure Wyatt is scheduled for his g-tube surgery on Wednesday!! As long as he continues to have bloodless poop, it's a go!!! Praise God!!

Day 92 / Happy 3 Months Wyatt!

Day 92: HAPPY 3 MONTHS!!! No changes today. He was pretty sleepy again today. Nurse Emily and I gave him a bath and dressed him up in his 3 month onesie! When James got there, Wyatt woke up and we took his pictures! :). Still no bloody poop! He did spit up a couple of times today- I only saw 1 small one. He was sleeping sweetly when we left. So excited that he has made it to 9 lbs!! :)



Today I had the pleasure of going dairy free shopping with Aunt Robin at Sprouts.  First, it was just good to see her and get to spend time with her.  She had a lot to show me and tell me.  It was very helpful.  I bought a vegan tofu pizza... it was good but it was not a pepperoni pizza.  haha.  I think once I just get more used to the idea of not having dairy, it was be pretty easy.  We went to eat tonight and my meal wasn't as fulfilling.  I didn't leave stuffed... this is a good thing though.  I shouldn't leave food places stuffed. 



Too big for his tub!







With Mrs. Emily





Day 91

Day 91: James had to work all night so sadly he had to spend the afternoon at home catching up on sleep. Wyatt must have felt daddy's sleepiness because that's what he did as well! I'm hoping he is growing too!! Wyatt had some blood work today and the results support that he could have the protein allergy. He has not had any bloody poop since yesterday! So hopefully this is working. The Children's GI team came over to look at Wyatt this afternoon. Both doctors were very nice. One of them actually works at the frisco campus, so she may be who we follow up with once we leave Parkland. We are requesting that we get as many follow ups there. It's free parking, cleaner, less busy, newer, ect...

Day Ninety

I decided to type this one out in the blog first instead of a text message to our family.  I figured it'd be easier, faster and hopefully less typos.  (Yes, I am very aware of them all and they kill me to see but sometimes I just don't care.)

On Wednesday mornings I have been going to a women's bible study- really a book study, Francis Chan's Crazy Love.  I've done it once before when the book first came out but I know God can use the same text and shine a new light or even an old one for that matter in my life.  I was looking forward to this week but sadly had to miss.  I can get some pretty bad allergies in the fall/winter/spring seasons.  Praise God for my one season off and it just so happens to be my favorite.  Last year wasn't too bad and again praise God because I was pregnant.  But 2 years ago, it was awful.  I missed 9 days of school and all my PA would say was my body was working over time to fight my allergies which didn't allow my body to fight everything else.  She never gave me any prescriptions except chicken noodle soup and rest.  Well, yesterday I could tell my allergies were kickin' it up a step and I cannot afford to get sick right now, especially anything to do with the lungs... well, anything at all really.  I wouldn't be allowed to see Wyatt and I just cannot fathom missing getting to see my little boy every day.  I love my time with him.  So I went in to my general practitioners office today just to stay a step ahead.  They agreed and gave me a steroid shot.  Amazing.  No one has offered me one of these.  I heard of all these other people being offered one and even being advised to get them multiple times a month.  I am hoping this does the trick.  So anyway, I went ahead and just drove on down to Parkland after my appointment, getting there around 11ish. 

For those of you that don't know how it works at Parkland- it's partnered with UT Southwestern, which makes it a teaching hospital.  Wyatt has multiple nurses, a dietitian, neonatal nurse practitioners and attending doctors.  Children's works somewhat the same way.  He does however have the same surgeon but he's been seen by more then one pulminologist (lungs) and cardiologist (heart).  It's been just about every two weeks or so we get a new attending doctor (they're in charge and have the final say).  We've been happy with all of them, each for different reasons.  Some took some time to warm up to and get used to their way of doing things.  Some have moved at a quick pace, some work on trial and error and others the speed of molasses.  We had Dr. Ennis a couple weeks ago and she's one that moves at a quick "let's get his done" pace and then we have had Dr. Kang the last couple of weeks, whom moves at a bit of a slower pace but was still a let's get him into surgery and home sooner rather than later (she also had him about a month ago as well).  Now we have Dr. Stewart.  She's never seen him before as well as his new NNP. 

So, new concerns were brought up today and rightfully so considering he had more blood in his poop as well as some more spit up at night.  Up until today, these things were happening but no one really seemed to be that concerned about them and then it's like it built up and all this concern came about between yesterday morning and this afternoon.  Again, all rightfully so and we back what their concerns are and what they are saying.  With all of that said, I will say it felt kind of like a kick in the gut kind of day.  Until this point these things have been happening but not enough, especially during the day with his spit up.  It wasn't being conveyed through the night nurses to us that they were as concerned about the volume of throw up... and maybe it's that they really weren't until recently.  We aren't upset, it just sucks, for lack of better words.  All of a sudden we heard the words GJ-tube again as well.  They had been thrown out like a month ago but wasn't really brought up again.  We were really debating NG vs. G-tube. (Quick reminder: GJ-tube is a feeding tube surgically placed into the intestines bypassing his stomach- this helps more with his reflux.  NG tube- what he has now coming out of his nose emptying into his stomach, ND tube- what he had going through his nose that emptied milk into the opening of his small intestines, bypassing his stomach and the G-tube which is surgically placed into his stomach.)  We were praying NG and dealing with that at home, as Wyatt or us for that matter, could pull it out easily causing him to aspirate in his lungs (very, very, very bad!) or the g-tube.  We went with the doctors and nurses with the decision of the G-tube.  An already super long story made not any longer, Dr. Stewart consulted the GI team and general peds surgery team today to let them know about the increase in bloody poop and to ask about the G-tube vs. GJ-tube.  This resulted in everyone canceling surgery plans for tomorrow and putting it on the books for next week to hold a spot but with it being still up in the air as to him being ready or not.  So discouraging. 

Dr. Stewart used an analogy of "If you hear hoofs on the ground, you don't look for a zebra, you look for a horse."  And what she meant by that is you start looking at things that happen more often than not.  In our situation, there is a concern with the blood, obviously and that is ultimately what we need to figure out before surgery.  So, the first thing they want to do, was to take Wyatt off my breast milk immediately and put him on a "natural" formula that is mostly already broken down and less work for his body to process.  This is just for the next 4 or so days while I discontinue eating ALL dairy products.  This also includes whey and casein stuff.  You'd be surprised at what all this includes.  This is another very drastic and sudden diet change for me.  I love milk and cheese and chocolate and the list could go.on.for.ever.... But it's worth it, just like pumping 6 times a day for my son.  On the formula, if it is the milk protein that is upsetting him and causing the blood, it should lessen or stop completely and we can reintroduce my new dairy free breast milk.  If nothing changes or if it gets worse, GI comes in and we'll go from there.  That's the zebra Dr. Stewart was talking about. 

So, here we are.  I ate as much dairy as I could today and will discontinue all of that as of tonight.  {That bag of already bite size cut chocolate chip cookie dough will just have to wait!} Thankfully, I grew up with a loving, intelligent daddy that is a dietitian.  He'll help and support me as well as James' loving aunt who has taken me in as her own that is a personal trainer and nutrition intellectual!  She already has eliminated dairy from her diet and can help.  We'll get this done and it will be good. 

God has really been faithful in each and every single day of this process.  I'm not saying it's always easy because IT. IS. NOT. EASY!  But I cannot imagine going through this without this faith God has so mercifully given me.  James is strong in some areas and me in some areas.  And together we hold each other up and accountable to His good word.  I am the optimist (most of the time) and he is grounded and expects the worst possibilities and hopes for the something closer to the better.  God is constant.  God is ALWAYS good, even when times are difficult.  And God will never forsake us, forget about us, or stop loving us and being there for us.  He will not give us more then we can handle but broaden our shoulders to make us stronger.  My faith in the Lord is bigger than I ever imagined it could be and I know I still fall short often.  It has been a difficult day.  I knew it would be when I woke up but it's in such a different way.  I have to surrender all my fears and worries each and every day... sometimes multiple times a day a lot of the time.  Ninety days is a long time.  I was asked today how we do it by someone who has been in the NICU for 3 weeks.  And I had to answer, it's not easy but God is good and He has given us strength. 

I am on my knees tonight begging for strength and courage for James, myself and for our STRONG, SWEET, RELAXED 3 month old boy, Wyatt tonight.  I beg to the Lord that the doctors to know what to do or for God to just straight up heal all of him.  He is a God of miracles and I still firmly believe He can do this.  Please join us in praying.  We are so thankful for each and every one of your prayers.  I know there are so many people out there reading this, some we know well and some complete strangers.  Thank you, Thank you and Thank you.  God listens and God hears.  Even if you aren't sure about Him- He is there and even though this situation seems so sad or so awful, it's still good because He has made himself known and he LOVES.  He loves us and he loves Wyatt more than I can even dream (and I love that boy with all my heart and soul) and He loves you.  My hope is that each of us feels His presence right here and right now and for always.  I beg that I feel his arms wrapped around me intimately like I know He is doing. 

God is good, always.  Thank you for keeping up with us and our little family of three.  :-) 

Also, please pray for all the other CDH families around the world.  A couple of babies went home to Jesus this week and one is on ECMO.  We aren't the only ones. 

Day 89

Day 89: We had fun today. We just hung out and Wyatt showed off for the nurses. :). We were going to give him a bath but that ended up not happening. Miss Amber said she would take care of it tonight though. Surgery came by and I signed his consent for surgery. I cannot believe its almost here. This makes Wyatt coming home real. We are so nervous for him to go into surgery but know its what needs to happen and know that the ultimate healer has Wyatt in His hands holding him and has been every single day. I feel a little more prepared to walk him over this time. I have an idea of what it will feel like... Scary as hell to be honest but again my faith is in God and James and I both just have to trust. Oh, we found out it is scheduled for 9:45am. We'll probably get there around 8 and just hang with our little man! :) please pray for our nerves and faith as well as Wyatt quick & hopefully comfortable healing!!!

Day 88

Day 88: Surgery came by this morning to get my consent for Thursday's surgery but as the nurses told her I'm not there at 7:30 in the morning. She is supposed to come back tomorrow afternoon. Wyatt is continuing to gain weight! He's not up to 9 lbs yet but he's "graming" his way there. ;). We get a new doctor tomorrow. Dr. Kang said she was going to leave very specific instructions for him. Not that they instruct but just what she sees for Wyatt. He got a new friend, wabanub! His paci now has a baseball bear attached to it! It helps him to not spit it out to the floor. He was pretty sleepy today so lots of cuddle time. :)

Day 87

Day 87: today was a day much like yesterday. We are literally just enjoying our time with Wyatt until Thursday. He does still have some blood in his stool and the doctors aren't sure why just yet but aren't very concerned. They do want surgery to know just in case. I pray it's nothing and surgery happens as planned. James will take the day off and we'll go down in the morning and walk over with him like his last surgery. His primary nurses have tried to make sure one of them is there the day before, of and after. They're so good!! :)

Day 86

Day 86: today was a good day. No changes were made. I feel like we're just killing time until Thursday gets here. Last night Wyatt gained 120 grams. That's a lot for one night for our little guy! Hopefully he won't lose tonight! :). This coming week will be busy- getting all our ducks lined up!! :). Pray for us, the decisions we need to make as well as the execution of them and for Wyatt's growth, surgery, those involved and his healing and readiness to come home. His surgeons name is Dr. Schindle.

Day 85

Day 85: sorry its so late, I fell asleep on the couch. :). Not a real busy day. Wyatt still had some blood in his stool so the doctor decided to send a sample off for testing just to make sure it's not bacterial/viral. She also mentioned maybe he could be reacting to dairy I've eaten and asked that I cut back for a while. Not sure what to do with all my milk stock but she said not to worry about it. I think he would have reacted long before now but I'm also not a doctor. He had a good day. He averages 18g/day in weight gain which is on the good side of what they wanted to see. Yea Wyatt. The NP said she would like to see Wyatt home 5 or 6 days past his g-tube surgery. Wow, that's soon!!! :)

Day 84

Day 84: Wyatt & I just hung out all afternoon. James was able to join us today!! The doctors added some more volume to his daytime feeds to adjust for Wyatt's weight gain. :). If they hadn't of done this today, I was going to suggest it bc he's lost some weight the last two nights. I was reading to him today and he would look at the pages and I swear every time he saw a dog, he would smile!! Or at least that's what it seemed like!! :).

Day 83

Day 83: Overall it was a good day. James, sadly, got stuck at work until 6:30 and by the time he would have gotten through traffic, and hung out with Wyatt and us driving home it would have been too late so he just headed on home. :(. Wyatt's surgeon from Children's came over early this morning and checked on Wyatt and then I got a call from the scheduler and was told he is scheduled for his G-tube surgery on the 11th. We are nervous about this but trust the Lord in trusting the doctors. From the way it's been explained by docs, NPs, nurses & a mom that has a G-tube baby, we feel this is best. It seems to be the safest and easiest to work with at home. It's scary to send Wyatt into surgery again but again this is where we have to trust God in that He is in charge of Wyatt. On a side note, for the longest time, I could not remember Wyatt's surgeons name, we barely met him and with all the rotating nurses, NPs and doctors it's too much. But I can describe him to anybody that ask and if they know the surgeons, they know who I'm talking about. So here is my description of Dr. Schindel: he's about 50, strawberry blonde-more strawberry hair and just looking at him you think he should be in Ireland, sitting at a bar, sloshing around a pint or two of beer. And when he speaks you're kind of disappointed he doesn't have an Irish accent. Wyatt had some reflux today, sad but the he fell asleep sitting up, leaning forward with his head in my hand. So cute. No other changes were made. :)

Wyatt should be coming home soon!

Day 82

Day 82: Not too much to report today. No changes were made medically. We are waiting on the Children's surgeon to come over. He weighs 8lbs 9.2oz now. He's getting big!! I'm thinking he'll never be a chubby wubby though. We got to nurse twice today. He has a bit of a diaper rash which has made him a little fussy or kind of a Mr. Grumpy Pants- but I'd be grumpy too if my bottom hurt!!! Hopefully he can fall asleep and sleep ALL night again like he did last night so he won't he won't have to feel it at all.

Day 81

Day 81: We had a nice day. I got there & immediately nursed and he did what seemed like a really good job so much so that I could put off pumping. I snuggled him up tight in a swaddle and just held him quietly to hopefully encourage him to sleep some. I know he's not getting his 12-14 hours a day!! His eyes just tell me he's fighting it. He had a minuscule amount of blood in his stool today. His NP & doctor checked him out and both seemed like it was nothing. Our doctor also spoke to his surgeon about his potential g tube surgery, which it is looking like that is the smarter choice. He has to come over and examine him first but that could happen as early as next week but it could not, you never know with Children's. I've made my voice heard to the fact that I want it in his stomach and not bypassing it- if it's possible. Still praying to know what is best for Wyatt and our family. We also have to figure out home healthcare... That's a while different situation... God has got this!!!