Day Eighty

Yup, you read that right, we've been in the NICU for 80 days and we have been blessed with our precious son for 80 days!!

Day Eighty: Good News- Wyatt got his cannula off! His sats were good, then they'd dip some and then he'd hold steady at like 95 (out of 100) but them Bad News- Wyatt got his cannula back. :(. While he was sleeping he was hovering around 80 and the doctors want him to be above 90. So, we'll see if he keeps it on for good or I just while sleeping. No other changes were made today. We just talked a little more about our options for Wyatt's homecoming. So many variables and everyone has their opinion... Now just to know what's best. We're praying Wyatt gets some good rest tonight, he's been staying up late and skipping naps, sleep = growing!!!

Days 78 & 79

Day 78: The past couple of days have been.... Not my best. I just felt burdened with everything going on. But today, praise God was a new day and much brighter! The doctors took the pressure on Wyatt's cannula down to a pressure of .2. They have plans for him to be off of it by the end of the weekend. :). We just hung out and did more talking, laughing and sleeping. He also has his 5th good nursing day. :).

Day 79: it's been a gloomy and lazy rainy Saturday but Wyatt doesn't know any better! He got a bath today as soon as we got there so that he no longer smelled like milk and he could put on his new Aggies onesie to celebrate their BeatingTHO Arkansas!! He also napped and we breastfed and just hung out. They didn't make any changes today. We did trade his nasal cannula dots (the circular stickers that stick to his face, to hold it in place) for a mustache. We felt that his poor little cheeks needed a little break and if all goes as planned, he'll be off his cannula tomorrow or Monday. The medical team along side us is trying to figure out what would be best for Wyatt, to come home with the NG tube (nose) or for him to have the surgery to have a tube put directly into his belly. So please pray for help with that decision. They both have pros and cons. :).

Day 77

Day 77: Not much to update. Wyatt slept and we cuddled, played and chatted. No changes to any of his "things". They are trying to get him off his nasal cannula before coming home. We are still waiting to hear about his official upper GI results. It's been an exhausting couple of days. Please pray for Wyatt's weight, its been stagnant and/or going down. We need it to keep going up!!! :)

Day 76

Day 76: Wyatt of course was sleeping when I got there this afternoon. The transport team arrived shortly after to take him on over to Children's for his upper GI test. I sat just outside the room and could hear him get upset when they put a new tube down his nose. We were only gone for an hour. The results aren't typed up in the computer as official but he said his intestines are malrotated (sp?) and he has hiattle hernia (sp?). What does this mean? I'm not sure? Maybe a surgery maybe not?? I'm sure they'll tell us as soon as they know. We did however get his MRI and everything is good, no brain bleeds!! When we got back, we knew Wyatt would be hungry, his milk had been off for almost 3 hours so we did some nursing. He took in half an ounce. It might not seem like much but that's a lot for our little man! We played and talked and Wyatt got to flirt with some nurses! :)

Day 75

Day 75: Wyatt was sleeping this morning when I came in. I got there earlier than normal bc they weren't totally sure what time he would head over to children's for his MRI. They give you a "time" but it's not always that time :). We went over around 12:30. It was t as traumatic as sending him into surgery but its still hard not knowing what's going on. I kept James updated via text while he was at work. It took every second of 2 hours, maybe a little more. I kept my self busy with a hefty todo list. Wyatt came out wide eyed and alert as always. They said he was great and then about 10 minutes in, he was done! He was crying and had to be calmed down. After that they said he was in and out of sleep but not still at all so they're hoping they got some good images. We headed back on over to Parkland (it's just a hallway) and we attempted nursing again. We cuddled and dad joined us. :). It was a good day. I'm just hoping the MRI produces good results. The echo from yesterday showed fluid on his lungs again so the doctors put him back on the dietetics- that medicine that is like water pills for 5 days and then he'll get another echo. The earliest Wyatt could possibly come home at this point is about 2 weeks but my gut feeling from the doctors talk, it's looking more like a month. Discouraging. Bleh! They change doctors all the time and all have been great but some just seem so much more positive and eager to get him home to us! All in God's timing, He knows best. I/we just need to be patient. :).

Day 74

Day 74: I got there today right at noon! His nurse said he was being Mr. Fussy McFussypants this morning unless she was holding him!!! So I held him just as much as time allowed me today and he was as happy as could be! He lost a little weight last night but I'm not worried about it. I also wonder about different nurses weighing & if there's a magian of error. He had another good nursing session today, yea! He also got an echocardiograph today. We don't know the results but should tomorrow. He has an MRI tomorrow at Children's, I'm going to walk with him over there and wait and walk back, then he's got a GI test on Wednesday and the same thing there, I'll go with him. All these test should help to determine when he can come home and if he'll need any surgeries. Oh yeh, he had a blood gas taken this morning and those numbers look good as well as a chest X-ray. It looks like his esophagus might be pushed over some, the GI test will tell us more on that. :)

Day 73

Day 73: There weren't an changes today. His feeds are the same as well as his cannula. He weighs... Wait for it... Eight pounds 3.8 ounces!! Out little man is growing, not at the speed the docs would like to see but to me, progress is progress!! :). He hasnt been spitting up much, probably less than a normal baby if you ask me, especially for having bad reflux. He's just such a chill baby and takes it all as it comes and then moves on. How are we so blessed!?! He had another good nursing day, 2 in a row!!! Let's hope he keeps this up!! Maybe, eventually we won't need a tube at all!! We wont figure that out until he comes home, I can't be up there every 3 hours to nurse him. I also got to bring TONS of milk up there! So helpful. We have officially gotten rid of all the bottles and are just hosting the bags! :)

Day 72

Day 72: James dropped me off around noon while he went to the gun show. We had a good ol time hanging out! I went to go pump and a little something said no, try to nurse, he's awake and so I did and he had his best session ever! This may work after all! We'll see! Hopefully tomorrow he'll do the same thing. They figure out his feeds for home. If it works, we're one step closer to home! He'll be on continuous throughout the night getting 25.5 cc's an hour so we'll only have to wake up to change out the milk. During the day he's getting 33 cc's each hour for three hours and then off an hour. Praising God for progress and asking for more to come home!! :).

Day 71

Day 71: .
I arrived to a little cutie sleeping away in his crib. He stayed asleep for about an hour and a half and then was wide awake. James arrived just in time to change 2 dirty diapers and a continued #2 in the middle of his changing. Eeew!! :). We had our family meeting today with Wyatt's doctor, NP, 3 of 4 primary nurses, is & Wyatt himself. Wyatt could come home in as little as a couple of weeks to a month and a half... Big timeline I know. We still have a couple of test to be run and they need to get his feeds on a livable schedule. So, we'll see but we know Wyatt's homecoming is soon! We have to be very cautious with his exposures to people. No kids for sure for now and we're asking everyone that will be around him to have their TDAP & flu shot and everyone has to be 100% healthy! No coughs, runny nose, fever, ect... We just can't chance him catching anything. His lungs cannot handle it at all! :)
He's up to EIGHT POUNDS 3.4 ounces!!!

NINE WEEKS/SEVENTY DAYS

NINE WEEKS/SEVENTY DAYS: it's been an exhausting day for both James and me both. He has a lot going on at work coupled with Wyatt stuff and I am trying to prepare for Wyatt to come home which involves picking a pediatrician, figuring out all kinds of insurance stuff, general house & family things and we're trying to figure out if we should buy a new car or not... God will not give more then we can handle and what he does give us, makes us stronger! Anyway, Wyatt was awake when I got there today and was in the process of receiving a blood transfusion. He was in and out of sleep throughout the transfusion and I got to hold him once it was finished. We chatted and then he fell asleep on my shoulder. The doctors put him back n the previous feeding schedule- 3 hours on getting 90 mL then one hour off. That seemed to work better for him. Next week he's going to get another echo and an MRI. Tomorrow we will have our family meeting with doctors and nurses to discuss our plan of action for coming home. It could be just a couple of weeks now. Life at home won't be easy either, in fact it will probably be harder but we'll be home and we'll get to be with him all the time. :) we are on board for whatever is best for our sweet blessing!

Day 69

Day 69: It wasn't a bad day but we did have a very stressful moment. I heard Wyatt cry in a way I hadn't heard yet and it was obvious he was in pain and uncomfortable with his reflux. I'd do anything to take that pain for him. He had one pretty big spit up where it just never seemed to end, when in reality it wasn't all that long. His heart rate went up in that time and he seemed to get a little pale. I'm thinking he really will need a blood transfusion tomorrow once they test his blood. They also changed up his milk. He is now getting 90 mL every 2.5 hours then no milk for an hour and a half. We're trialling it for 24hrs to see if he has any more episodes like this afternoon. They also turned his cannula up 100%oxygen and left it at a pressure of .5. They did this to prepare him for home. We can only change the pressure and not the oxygen once we go home. A cardiologist came to see him today. She agrees about the blood transfusion. She looked at his PDA (heart murmur/unclosed hole) and she just isn't sure what to do yet. She's going to wait a little to decide if it can wait and just be watched or if we need to something sooner than later. It'll probably mean another echo sometime soon. We are thankful for God's strength and courage or today would have been a bad day. There's so much peace knowing He is in control and loves Wyatt so much!! (we're still exhausted though!)

Wyatt's TV Debut!!

Short & Sweet....

http://mms.tveyes.com/PlaybackPortal.aspx?SavedEditID=372b0cd2-fb6e-4d71-ae1f-c34ab6d8b685

Filmed in Dallas' Parkland Hospital NICU on Thursday, September 13, 2012

Day 68

Day 68: Our precious Wyatt was wide awake today when I got there. So we attempted nursing without much success but very successfully talked and snuggled in our recliner! Apparently he had been fussy before I arrived and he just wanted mommy to hold him!! I feel it's totally okay to spoil my baby in the NICU!! :). The doctors didn't make any changes today. They ideally would like Wyatt to come home with no cannula and with a NG tube (what he has now and requires NO surgery!) so they are figuring out how to make his feeds encourage home life- continuous all night so we and he can sleep and variously like a normal baby would throughout the daytime. Wyatt did get an echo today (which he didn't much care for) and it shows his heart still has a PDA (hole that hasn't closed in his heart yet & causes a murmur). That is something that we're just watching and if it doesn't close on its own he'll eventually have to have surgery to close it. He's weighing in at 7 pounds and 14.3 ounces!! Little by little we're going up. Praise God, that's all we can ask for! I had a successful interview with a doctor today, the office is close to the house, they're well connected to Children's and I felt comfortable with her- 2 more to go!! Hoping one of them just stands out to me!!

Day 67

Day 67: Wyatt was on TV! I still haven't seen but I hear I didn't look or sound ridiculous! :). He had another good day. He spit up a couple of times but both were small and just milky. I tried to bottle feed him and his speech therapist came to watch to see if she could give me any pointers but she said I was doing everything she would do. :) A+ for momma! Now if he'd just take it! The nurse took blood today (they usually do once a week or so) and his crit was a little low. He might need another blood transfusion but they want to give his body a chance to make his own blood. They'll test again on Thursday. He is now weighing in at 7lbs 13.6 ounces...(I think it was .6oz). He's breathing good, tolerating his feeds so all we can do is thank God for every tiny bit of progress! The doctors really want us to be able bring him home. I have interviews with 3 different doctors offices this week to find Wyatt a pediatrician. Please pray for discernment with this decision, as with a "normal" baby I wouldn't be as particular but with Wyatt's special case, we want someone who is sensitive to it and really understands his CDH.

Day 65 & 66

Day 65: we got to see Wyatt awake today! He talked to us and smiled with us! His nasal cannula still has a pressure of .5 and he is still doing a really good job with just room air. They changed his feeds up to something called Q4. Basically he gets the same amount of milk over a 4 hour period but it's all given the first 3 hours and nothing the last hour. This will hopefully allow him to feel some hunger and have more desire for the bottle and or nursing. He hadn't spit up but a couple of times in the last 24 hours and those were small and milky. :). He also finally gained some weight and is up to 7 pounds 11.5 ounces!!! Praying that growth continues and that he will begin to really want to nurse as well as keeping up his breathing strength!!

Day 66: not much to report. No changes were made today. He is keeping his feeds down. We got to spend a lot of awake time with him today so that was really fun!! The dietitian wanted to "spin" my breast milk to make sure I was producing 20 calorie milk and I am actually producing 20.2 calorie milk! Just a calorie or 2 can affect Wyatt's intake, crazy!! I was kind of hoping they were going to tell me to eat more cheese burgers and French fries- no such luck!! ;). Also, we'll be on the news tomorrow- WFAA Channel 8 at 5pm here in Dallas is what I was told!

Wyatt's TWO Month Pictures

So, as you probably read, I totally missed Wyatt's 2 month pictures!  I left my house, so excited and got half way out of the neighborhood and realized, "Oops, I forgot my camera!"  So, I turned around and ran back in, right past his 2 month onesie I had just made the day before, didn't see or think about it, grabbed my camera and ran right back out of the door!  Got to the rail station, sat down in my seat and took a deep breath and then realized, "Oops, I forgot his onesie!"  I called James so upset with myself and he put things into perspective, in his very James way of course.  Did I want to spend 30 minutes going back to the house and getting it or just continue on, spend those 30 minutes with Wyatt and just be a day off with pictures.  I obviously went ahead and spent the time with my son.  And it was totally worth it.  

Also, for anyone that wants more information on CDH, please check out CHERUBS!   It's a place for families  & friends affected by CDH to learn, share, support and encourage one another!  They have a facebook page as well.  

Here are some pictures from this month!  :-) 

Naked Wyatt before his central line was taken out. 

Day 64

Day 64: my sleeper keeps on sleeping!! We only saw his sweet eyes for a few shorts minutes today. Hopefully he's just working on keeping his milk down, digesting & growing. He hasn't had any spit up today. They turned his cannula down to .5 L of pressure but kept his continuous feed at 21.5 cc's an hour. If he does well at half a liter of pressure for a few days, they will try him off the cannula again. :).

Day 63

Day 63: Well, I got to the hospital a little earlier then planned today bc the unit director called and asked if I would mind doing an interview with WFAA channel 8, so I talked to James and I did the interview. It should air on Monday night at 5. It's about parklands new NICU coming with the new hospital and the private rooms with windows. Not so much about Wyatt and our story. Wyatt had another good spot up free day! He also drank 3 mL of milk from a bottle which is new and improved. His milk feed is up to 21.5 cc's an hour. He was awake when I got there then fell asleep quickly. He knows I think he's cute no matter what. :). We did take 2 month pictures today- I had to wake him up for them, so he was kind of grouchy about it, respectfully! Haha. :).

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Two Months

TWO MONTHS: Mom fail: made Wyatt's 2 month onesie yesterday and forgot to bring it with me today! So his pictures will be a day off and up tomorrow. Wyatt has been changed back to ACN status so we got to move into room 306 again- we like the recliners in there! :). His continuous feed is also up to an even 21 cc's an hour. He is up to 7 pounds 9 ounces! No wonder he's been sleeping so much. He did it again today, sleep sleep sleep! I think he saves it all for his night nurses! He woke up for his bath today. He had like 10 nurses ooohing and awwing over his cuteness! Haha. We'll try to take his 2 month pictures tomorrow! :)

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Day 60 & 61

Day SIXTY: I was told Wyatt was a little whiney this morning and his nurse picked up and he was happy as could be. Already figuring it all out! ;). He was sleeping when I arrived after lunch so I just held him for a while. His nurse gave him his 2 month shots while I pumped, three total sticks. Then apparently she went to change his diaper and he made a #2 mess everywhere! I missed most of it but heard all about it. A bit thankful it wasn't me. :). Then I put some clean clothes on my sweet Wyatt and feel his feeding tube...it was covered in some slime feeling wetness so I called his nurse over and she realizes, it's been pulled out! Ugh!!! So they had to put it back in and get a X-ray to see if it was in the right place. It took a few tries to get it down but it floated perfectly into place! He does not like having that thing pushed down his nose. James and I just cuddled him for the rest of our time. The only change made today was to his milk amount, it's up to 20.5 per hour. :)


Day 61: Wyatt literally slept the entire time we were there today. He must be growing and/or using more energy to breathe. They took the presses down on his cannula to a pressure of 1 L. With parkland being a teaching hospital with ut southwestern we get a new doctor every so often. His new doc today opened up talk for ideas to get Wyatt home! No, we don't have a date or a timeline. Wyatt has to tell us with his progress when he comes home. Tomorrow his NP is going to bring up pulling his ND tube (milk) back (not out) and let it empty into his stomach instead of his intestines. How he handles that will determine what is next. They'll probably let however he handles that happen for a good few days. If he doesn't begin spitting up too much and gains weight still, this is good. If his stomach doesn't tolerate the feeds, they might consider a GI tube- surgically they would put a feeding tube in his belly- he wouldn't be able to pull that out. So please pray his stomach can handle the feeds and that he can even transition to not being on continuous feeds. Also, please pray for us- we are tired and just ready for Wyatt to be home and also scared to bring him home. It's comforting knowing he is being taken care of in amazing ways. With one push of a button, there can be 20 people bedside in a matter of 10 seconds. We just have to trust the Lord that when that time comes, we'll be ready. :)

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Day 59

Day 59: We are praising God for our very uneventful day! It was just a good 'ol day- probably as close to a normal day we could get for being in the NICU, almost like I were at home and my nurse friends were there with me. His milk is the same, 30 calories at 20 mL/hour, he's doing really good on 1.5 L of oxygen with room air and he slept like a rock some and was wide awake talking and flirting!! There were no diaper leaks or blowouts, I'm home nice and clean. The only thing missing was Daddy. He had to stay home and work today. But it was still a good and productive day!!

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Day 58

Day 58: Big day- our little man lost a big piece of hardware! His central line was removed this morning. He got his first dose of Tylenol for the procedure bc his skin had closed around the line (normal/expected). So, it can be a little painful for babies. Nurse Emily said he was pretty upset and the doctor tried to comfort him and she snuggled with him afterwards. The Tylenol knocks him out hard. He was asleep and remained asleep most the afternoon and evening but was wide awake the last hour and half or so and when we left. We attempted a small bottle feed but he basically just played with the nipple in his mouth- still good but he didn't drink anything really. His continuous feed is still set on 20 cc's an hour with no real big spit ups. They also turned his nasal cannula down to 1.5L of pressure. If he does good on it, he can return to ACN status instead of ICN. We also had another explosive #2 but this mamma got smart and waited for round 2 to move the diaper!! :)

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Day 57

Day 57: Another good day, praise God! Everything is pretty much the same. Wyatt's feeds are up to 20 cc's per hour. He had one small spit up while I was there today, no biggie though. His central line will hopefully be taken out tonight. A Children's surgeon has to come over and do it. We attempted nursing- it was just an attempt but he sure loves his paci! I feel I've officially reached "mom" status. Yesterday Wyatt spit up down my back and had a diaper fail all down my leg. Today he had a nice loud, vibrating #2 and he's known for dragging those bad boys out so I was going to wait a little bit to change it but it just smelled way too bad! So I pull away the dirty diaper and go to reach for a clean wipe and Wyatt exploded EVERYWHERE! It went out of his bed and everything.... So gross but very funny. He basically slept through the entire thing. He was also wide awake for close to 4 hours until his neighbor required a code blue. James counted 20+ docs & nurses rush in in a matter of seconds... All this commotion put Wyatt right to sleep. LOL (other baby was fine.)

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Day 56

Day 56: Wyatt has had another good day! He was moved to a new room again but only for staffing reasons. His TPN (liquid nutrition) was turned off and he is disconnected from another machine!! Awesome news!! The central line is still in his chest but just hanging just in case they do need to reconnect him. His cannula is still on a pressure of 2L. The doctors thought about turning it down but decided they'd done enough today and are going to let him keep taking in the milk and focus on gaining weight for a few days. Speaking of.... His continuous 30 calories milk feed is up to 18.7 or 19.7 (I honestly can't remember all of a sudden but I'll ask tonight when we call to check in). We did get to nurse today and he did a good job. The nurses are also trying to bottle feed him once a day and he hasnt been too interested just yet. Prayers are being answered in big ways! Thank y'all!!!

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Day 55

Day 55: BJ (James' dad) got to visit with our sweet Wyatt. His feeds are still on 18 cc's an hour but with 30 calories now. They are letting his TPN (liquid nutrition) run out tonight! Yippee!! If he still gains weight without it, his central line will come out and we'll be down to his NG tube (milk tube) and his nasal cannula! Not saying he will, but potentially he could come home with both of those... I'd prefer him to not need any support but him coming home would be amazing! He was still sleepy today, probably bc he loves his nurse Amber and stayed up late talking to her, such a flirt! He also is famous in the NICU! He now has his picture on the wall for everyone to see, showing off his beads (he gets them for each day he is there & all the stuff he does or goes through)- he's up to 303. I'll take a picture of it tomorrow! Please continue to help us pray for him! We just need him to keep growing (he's 7lbs 6.5oz now) by taking in his milk and breathing at a good capacity!!! :)

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Day 56

Day 55: BJ (James' dad) got to visit with our sweet Wyatt. His feeds are still on 18 cc's an hour but with 30 calories now. They are letting his TPN (liquid nutrition) run out tonight! Yippee!! If he still gains weight without it, his central line will come out and we'll be down to his NG tube (milk tube) and his nasal cannula! Not saying he will, but potentially he could come home with both of those... I'd prefer him to not need any support but him coming home would be amazing! He was still sleepy today, probably bc he loves his nurse Amber and stayed up late talking to her, such a flirt! He also is famous in the NICU! He now has his picture on the wall for everyone to see, showing off his beads (he gets them for each day he is there & all the stuff he does or goes through)- he's up to 303. I'll take a picture of it tomorrow! Please continue to help us pray for him! We just need him to keep growing (he's 7lbs 6.5oz now) by taking in his milk and breathing at a good capacity!!! :)

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Day 54:

Day 54: Wyatt was a sleepy boy today, so that's what he did. Lots and lots of sleep, which is good! Hopefully he's growing! As of last nights weigh in, he is up to 7lbs 3.5oz!! He is up to 18 cc's an hour of milk and they have been slowly lowering his TPN (liquid nutrition) with hopes to have him off of that this week!! Tomorrow they are going to take the calories in my milk up to 30 per ounce. He is finished with his water pills medicine. Children's was supposed to come back by today to check in and he'll have another chest X-ray in the morning to see about the fluid on his lungs. No nursing today since he was so sleepy. They are also trying to give him a bottle once a day as well, he wasn't having it today at all!! But overall it was a good day. :)

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Day 53

Not too much change. They're working his feeds up to 16 cc's an hour. I'm not sure I ever thought we'd get here. He's still just 7lbs 1oz. Pray he gains weight. Wyatt keeps going back and forth. We didn't try to nurse today. It didn't ever seem like a good time and I don't want to upset him. I'm impressed every day at how alert and observant he is. He looks around all the time. He'll hold his head up, stretch his neck as far as he can and look back as far as he can just to take in as much as he can. He's starting to use his legs to push up. It just amazes me so much! :) God is good!! Please keep praying for his digestion and breathing!!

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