Tuesday, September 29th Update

Cooper is 12 weeks old today! (38 weeks gestation)  After 12 weeks in the NICU we are so ready to bring him home.

Cooper gained weight tonight and is 2945 grams, or 6 lbs 7.8 oz. Today they increased his feeds from 6 ml over 3 hours to 10 ml every three hours, but given over one hour. (Hopefully that made sense) Condensing the feeds and giving them over an hour instead of having them run through his NG tube continuously is a big step in the right direction. Once he works up to the full volume and the feeds are condensed, we can begin breastfeeding and hopefully get discharged quickly!

Cooper hadn't pooped since Sunday after he received the enema, so he had another enema today. The doctors said it isn't totally uncommon for babies in his situation to need multiple enemas while recovering from his surgery, but we obviously want him to poop on his own. After the enema he had his first blowout... poop was up his back and soaked through his outfit and two blankets! He seemed to feel much better after. :)

Monday, September 28th Update

Happy Monday! My due date is two weeks from today (October 12th). We have come so far, and it's finally almost the month Cooper was supposed to be born in.

Today Cooper's feedings were increased to 2 MLs given continuously over an hour, which is about 2 oz over the course of 24 hours. Not a huge amount, but like in all aspects of the NICU journey, we have to go slowly. Cooper seemed to tolerate the increased amount and hopefully we can continue to increase his feedings more rapidly. He hasn't pooped since the enema yesterday (sorry if this is too much information, but it's very relevant to the progress he is making since surgery). The resident said that it's okay for him to go a day or two without pooping, and possibly now that he's receiving more fluids into his stomach the pressure will increase and he will become more regular. Also, the bottom part of his colon is still catching up to the upper part that was actually being used, and growing takes time.

Cooper gained weight again today and is now 2905 grams, or 6 lbs 6 oz! We love him so much.

Sunday, September 27th Update

Cooper had a pretty happy day! He hadn't pooped since yesterday morning at 4 am, so after 30 hours of struggling he received an enema and the results were pretty immediate. :) He felt much better after and was his happy, content self for the rest of the day. Our hope now is that he will be able to move things through without needing additional enemas.

He's continuing to receive 1 ml of milk continuously each hour, and seems to be tolerating it well. Cooper is still breathing on his own is getting stronger each day! Tonight his weight was 2840 grams, up 10 from yesterday. He is now 6 lbs 4 oz.

After nearly 12 weeks of being in the NICU it still breaks my heart each night to walk out of the hospital without Cooper... I always feel like part of me is missing when I'm not with him. I'm so grateful to experience the fierce love a mother has for her child, and eagerly await the day we can walk out of the hospital together. Thank you all for continuing to pray for and support our little family. We are so thankful!

Saturday, September 26th Update

Cooper, Cooper, Cooper...

He got his Anderson tube taken out today! (the drain that was emptying his stomach). The doctors started him on milk feeds again, but they are taking it pretty slow. He's only being fed 1 ml. per hour, so basically nothing; however, he is tolerating the feed well and is digesting it well.

Well, mostly.

The boy won't poop. And it's making him mad. Real mad. He just can't settle down and is constantly grunting with effort to...well, you know. We would hold him, rock him, pat him on the back, give him his pacifier, and swaddle him tightly, but it didn't make any difference. Maybe this is what normal parenthood feels like when you just can't get the kid to go to sleep. (Cooper is very mellow and we haven't experienced this yet.) If that is the case, ya'll can keep normal parenthood and I'll just be praying that Coop settles back down when his bowel is fully developed.

On a similar note, the boy is starting to get some attitude! Several times today when we were trying to get him to take his pacifier he would just open his mouth wide open and shake his head back and forth. We'd tell him to stop, he wouldn't listen. He's grounded for at least a couple of days.

Constipation and attitude aside, he's still the cutest little boy we've ever seen. He's a blast and is constantly making us laugh. We love Cooper! Also, he gained weight and is now 2830 grams, or 6 lbs 3.8 oz.

-Taylor

With Uncle Alec

Friday, September 25th Update

Cooper had a pretty good day! He gained weight and is now 6 lbs 2.9 oz. (2805 grams... can't believe how close we're getting to 3k grams!) At one week post op, Cooper's Anderson tube was finally clear today and there wasn't very much coming out! It was the best. Hopefully when the surgical team looks at it tomorrow they will decide to take it out and we can finally move forward with eating. Cooper will be a much happier boy once it's removed!

For the last two days Cooper has been pretty fussy unless he is being held. He is working hard to pass gas and to poop and loved to be rocked and held. I love holding him all day, but it makes leaving his bed to go pump every 2-3 hours and coming home this evening hard for me. I can't wait for him to start receiving some milk to soften things up and hopefully help him feel better. There weren't really any other changes today... the next big goal is getting the Anderson tube out and starting to eat.

Today is the 80th day of our NICU journey. When Cooper was first born it made me a little sick to think about how long we were going to be in the hospital, but now I can't believe we've made it this far. I have frequently thought of the quote "Life is hard by the yard but by the inch it's a cinch" throughout this process. While I wouldn't say everyday is a cinch (days actually feel like a month), we have learned to take each day one day at a time and not rob ourselves of immediate happiness by worrying about what the future holds. Celebrating each small milestone everyday has given us joy throughout this trial, and I hope we can hold onto this mindset forever!

Thursday, September 24th Update

Today Cooper weighs 2770 grams, which is 6 lbs 1.7 oz! He has officially outgrown preemie outfits and diapers and now uses newborn sizes. There weren't many changes today. He is still having quite a bit of output in the Anderson tube, so no feeds yet. We're hoping by this weekend his Anderson output will have decreased and he will be able to have it removed and start eating.

He pooped with every diaper change today, except one. He was pretty fussy today and I think it's because he's working hard to put his newly repaired bowel to good use. We're hoping that his colon will grow quickly and that he will be more comfortable as he works to move things through his intestines. Cooper is still breathing on his own and doing well!

Cooper frequently has one eye cracked open when he's sleeping... he's always keeping an eye on things :)

Wednesday, September 23rd Update

Cooper is officially 6 pounds! He actually reached that milestone last night. Today his weight was 2740 grams, which is just over 6 pounds. Cooper is now 5 days post op and seems to be feeling pretty good. He didn't receive any morphine in the last 24 hours, but did receive a few doses of Tylenol. Cooper moved back into a crib this evening.

Cooper's stomach looked a bit distended today, and his output in the Anderson tube in his stomach was still pretty green. They are watching it closely. We're hoping tomorrow things will look better and they will be able to take out the tube... Cooper hates it and frequently gags on it. :( Today he was showing a lot of hunger cues (which is a good sign), and with any luck they'll be able to start small feedings soon. (He is receiving TPN and sugar water through his picc line.)

He has continued to do well respiratory wise, so this afternoon they decided to remove the high flow oxygen and see how Cooper did. Amazingly, his oxygen levels were about 99 - 100% for the rest of the afternoon and evening! He decided to breathe all on his own. We're so proud of him and love seeing his face without the oxygen in his nose. :)

Cooper had an eye exam today, and the results were good! His right eye has vascularized and is no longer concerning. His left eye still has a bit of ROP, but hopefully it will continue to develop and the ROP will regress. Cooper's next eye exam will be in 4 weeks. (I sure hope we are discharged and have to come back to the hospital for it!)

Right before I left the hospital this evening I was changing his diaper, and he pooped again! It was a very small amount (much smaller than yesterday) but encouraging all the same. Right now the bottom part of his colon is pretty small from not being used for the last two months, so it takes some time for things to move through him. As he gets stronger and his bowels are now in use he will become more "regular."

Thank you for the continued love and support for our family! We still haven't heard much about when Cooper will be discharged, but each day brings us closer to going home. We're so thankful for the kindness of our friends and family and miracles bestowed by Heavenly Father.

Tuesday, September 22nd Update

Cooper is 11 weeks old today! (37 weeks gestation... full term!) Oh what a ride the last 77 days have been. I'll start with the best news from today... Cooper pooped!!! I didn't think it would happen for at least another day or two, but when I changed his diaper this afternoon he gave us a nice surprise! I may or may not have cried a few tears of joy. We're so relieved that his bowels are working as they should. Tomorrow they may start feeding him a tiny bit of milk. (Right now he is just receiving TPN and dextrose water.)

This morning the output from the Anderson tube was nearly completely clear, which was fantastic. When Cooper pooped the output/secretions were green... hopefully tomorrow it will clear up so he can have the tube removed.

Cooper's pain levels seem to have decreased again today, and he only had two doses of morphine and two of Tylenol. We're happy that he's seeming more and more like his old self! Since having surgery he's been in a bed with a warmer, but today he did a great job maintaining his temperature and will be moved back into the crib tomorrow. As of last night his weight was 2635 grams, or 5 lbs 12.9 oz! He has nearly tripled in size since birth.

Monday, September 21st Update

Taylor summed up today nicely when he said, "Coop you're back!" Cooper had a great day. He was on CPAP and didn't have any desaturations (dropping his oxygen levels), so this evening they moved him back down to the high flow oxygen on 3.5 liters. They weaned his morphine a bit, and are now just giving it to him as he needs it. Cooper is still receiving Tylenol every six hours in addition to the morphine. He has still had some occasional fussiness throughout the day, but overall he was much happier and more comfortable today than the last two days. Taylor and I each held him for an hour, and while we were holding him he was very alert and happy.

The surgical team examined his incision again today and said that it's looking exactly the way they want it to. Cooper has still had a fair amount of fluid in his Anderson tube (the tube in his throat sucking out the secretions from his stomach). Hopefully soon the fluid will lesson and they will be able to remove it. He is having some faint bowel sounds, which is a good sign. We can't wait for him to poop so he can start eating! (You know you're a mom when your child's poop is exciting, right?) Last night our nurse told us that Cooper had gained 10 grams since surgery, but he had actually gained 100 grams! He weighed 2600 as of Sunday night (5 lbs 11 oz).

Tonight when Taylor and I were driving home we were talking about how when Cooper was born everyone told us the NICU journey in a marathon. We are in the final leg of our marathon... we're exhausted, but the thought of walking out of the NICU (hopefully soon) with Cooper in our arms keeps us putting one foot in front of the other!

Sunday, September 20th Update

Overall, today was a much better day than yesterday for Cooper. In the middle of last night he started having more apnec spells, so they put him on CPAP and gave him some caffeine. The caffeine seemed to really help his breathing. He did well on CPAP today, and most likely tomorrow he will be moved back onto the high flow oxygen. The doctor suggested that if Cooper tolerated it, holding him might make him feel better. We tried it this afternoon and he did great! I held him for two hours while he slept. After holding him he didn't show as many signs of discomfort, and went about 5 hours between morphine doses before the nurse gave it just to make sure we were staying on top of his pain. This afternoon he was awake for a few minutes and seemed almost like his old self -- smiling a little and looking around :)

When we left this evening he was completely asleep and seemed comfortable. He has gained 10 grams in the last two days (weighs 2510 grams or 5 lbs 8.5 oz) We're hoping he continues to feel better and heal quickly! We sure love this boy and continue to feel so thankful for the tremendous progress he has made.

Saturday, September 19th Update

Today was a hard day for my mama heart. Right now Cooper's doctors are finding the balance of how much morphine to give him. Too much makes it difficult for him to breathe, and too little obviously means he's in pain from surgery. Last night around midnight Cooper was having a difficult time breathing and seemed to be in a lot of pain post surgery, so he was moved to the high flow oxygen. The high flow oxygen helped immensely, but for a lot of today he still seemed to be in pain. He had another big desaturation episode this afternoon so they turned up the high flow oxygen from 3 liters to 6 liters, and he did much better. If he needs more respiratory support they will put him on CPAP. He is receiving morphine and Tylenol every three hours and seemed to be more comfortable when we left this evening.

All things considered, he's doing very well post op. Tonight our nurse heard bowel sounds when she was examining him, which is a great sign. The tube you see in his mouth is called an Anderson. The Anderson is intermittently sucking out secretions from stomach because Cooper's bowel cannot digest the mucus yet.  Once the secretions in the Anderson start to run clear they can remove it and it will be another step towards beginning to feed Cooper.

Since surgery we have had a few of our primary nurses taking care of Cooper, and they have all done an incredible job of keeping him comfortable and being attentive to his needs. We love our primary nurses -- we spend more time with them than anyone else these days, and they have become great friends. It takes a very special kind of person to devote their life to caring for medically complex newborns. I could go on and on about the skill, compassion and intelligence of NICU nurses! We are so grateful for them.

We're hoping Cooper turns a corner tomorrow and that today was the worst of it. There is nothing worse than seeing your baby in pain and not being able to take it away. :( He is only one day post op from major abdominal surgery, so discomfort is anticipated. However, he seems to be doing much better this evening and hopefully he will heal quickly. Thank you for all of the prayers on his behalf.

Friday, September 18th Update

Big day for our boy Cooper!
Surgery was scheduled for 7:30 am this morning, so I rolled out of bed at the unholy hour of 5:45 to hop in the shower. Naturally we received a call telling us the surgery had been reschedule to 11:30 after I was already fresh, clean, and fully awake. But who's complaining?
We got to the hospital early enough to be able to spend time with Cooper before they took him down to the OR. Eventually our turn came and we wheeled him down, signed papers of parental consent for the surgery, and then left Cooper in the hands of his doctors.
After that it was a waiting game. The head surgeon told us to expect the procedure to take anywhere from one-and-a-half to two hours. My parents came to keep us company during this time, and we picked up some sandwiches and chocolate milk from the cafeteria. We had still not heard anything, so we went back to the waiting room where we watched way more news on Donald Trump than we ever had interest in viewing.
Finally, two hours and fifteen minutes later, the surgeon walked in to the waiting room to tell us that the surgery was a wonderful success. No complications, no problems, and Cooper was doing well. Very well, actually. All of the nurses were extremely impressed because when a baby comes back from surgery they are almost always intubated and using a ventilator to help them breathe. As the pictures below demonstrate, Cooper does not have a breathing tube in his mouth, and he decided to breathe mostly on his own (still has the nasal cannula). Our resident doctor remarked that she didn't want other parents to see how good Cooper looked after surgery, because most babies don't look as great as he did.
Long and stressful day, but all around good. It will probably take about a week for Cooper to recover from the surgery, but it was a big step forward in getting ready to come home! After he has a bowel movement and is more recovered from surgery we will begin the process of getting him to eat as much as needs to in order to come home. We couldn't be happier with how everything went today.
Cooper is on Tylenol and morphine to help with his pain, and when we left this evening he was sleeping and seemed comfortable.

-Taylor

*Fun fact* The original plan was for Cooper to have the surgery when he hit 2500 grams, or five-and-a-half pounds. They decided to do it a little bit earlier because the surgery would help him grow and it worked better for the surgeon's schedule. Cooper, however, is not one to disappoint. Last night he weighed in at exactly 2500 grams. Atta boy Coop.

Heading down to surgery

Right before surgery, waiting in the OR

After surgery

After surgery

Thank you all so much for your support for us today! I know there were people fasting and many prayers being offered for a successful surgery. I cannot truly express how thankful I am for the faith of so many people in behalf of our son. Prayers bring miracles, and we have witnessed that every single day since Cooper's birth.

-Chloe

Post Op Surgery Update

They just finished surgery and everything went well! There were no problems or complications. Taylor and I will be able to go back with him in a few minutes. We'll post a more thorough update this evening. Thank you all so much for the many prayers for Cooper today. They have been answered!

Surgery Update

Cooper's surgery this morning has been postponed to 11:15 am MST. We'll keep you updated!

Thursday, September 17th Update

Cooper is having surgery tomorrow morning at 7:30 AM. There is a a chance it could be delayed, but right now the plan is for 7:30. Last night Cooper gained 110 grams, and now weighs 5 lbs 7 oz! His hematocrit levels were a little low today, so they gave him a blood transfusion this afternoon in preparation for surgery. He received an IV in his left arm that was used to transfuse the blood, and will likely be used for post op medication. Cooper will receive some hydrocortizone (the stress steroid he received after his adrenal crisis) a few hours prior to surgery. We're anticipating that the surgery will last between one to three hours, and after surgery I will post an update on here on the blog.

Thank you all for your many prayers for a successful surgery! Tonight Taylor gave Cooper a special blessing and we know that Cooper will be watched over and protected tomorrow.  This surgery is the first step in preparing to come home, and we're so grateful that after ten and a half weeks in the NICU the day has finally arrived. God has blessed us and Cooper tremendously over the last 72 days and we know He will continue to strengthen us. Our hearts are filled with gratitude for all that we have been blessed with.

Wednesday, September 16th Update

There isn't really much to report from today... Cooper had a quiet day and we are one day closer to surgery on Friday! His ostomy bag leaked this evening and had to be changed right before we left, so our nurse was going to weigh him later tonight after the bag had a while to stick.  We'll let everyone know his weight tomorrow.

We sure love our boy, and we're continually grateful for all of the thoughts and prayers on his behalf. Thank you!

Tuesday, September 15th Update

There has been a slight change in plans... Cooper's surgery has been changed from tomorrow (Wednesday) to Friday. The surgeon informed us this morning that another baby was just diagnosed with cancer, and requires a 12 hour surgery tomorrow. Our prayers will be with this baby! Performing the surgery on Friday also gives Cooper a few extra days to grow, which is a good thing. Besides... we've been in the NICU for 70 days, what's 2 more? :) We don't know what time the surgery will be on Friday, but we will definitely keep everyone updated. I'm planning to post here immediately following surgery because I know many people will be anxious to know that all is well. Thank you so much for all of your thoughts and prayers! 

Here are the highlights from today...

1. Cooper's weight is the same as yesterday.

2. We are now breastfeeding once per shift (2x/day) instead of just once per day. Cooper ate for 8 minutes this afternoon, and then for 10 minutes later this evening. 

3. Cooper is 10 weeks old today! (36 gestation)

4. My mom drives me to the hospital on the days Taylor has class and doesn't come to the hospital until later in the evening. I'm so grateful for the many hours she has spent with me in the NICU! Today she read a chapter from Winnie the Pooh to Cooper while he was sleeping, and he smiled throughout the time she read to him. It was a memory I will always love. :)

Monday, September 14th Update

This morning Cooper had his contrast enema and it went well. The enema showed that his colon is small, but that is to be expected because it hasn't been used much while Cooper has had an ostomy (ileostomy). Surgery on Wednesday is still the plan!

Cooper nursed for 15 minutes today. :)

He also gained weight and is now 2360 grams, or 5 lbs 3 oz. I never imagined that the highlight of my day would be seeing the numbers on the scale every evening when Cooper is weighed, and to see him gaining weight... but each day it is a wonderful reminder of God's love for our tiny, 2 pound, 14 weeks premature baby. His entrance into mortality was so fragile, but he is here and he is growing. We couldn't ask for anything more!

Sunday, September 13th Update

The past few days have been pretty low key, and today was no exception. When we arrived at the hospital this morning Cooper was wide awake, so we tried breastfeeding and he ate for 18 minutes! He is doing so well. After his surgery the trick will be to make sure he has enough stamina to eat that much every three hours.

Cooper slept for most of the day and we enjoyed holding him. He gained weight today, and is now 2320 grams! Officially 5 pounds!!! (technically 5 lbs and 1.8 oz) I never believed when he was only 2 pounds that he would ever grow to be this big. We are soooo thankful! Before his surgery on Wednesday he has to have an enema, and that will be done tomorrow morning. We would appreciate prayers this week that all goes well with his surgery and that he heals quickly so that he can come home. :)

Saturday, September 12th Update

Cooper had a good day! Not a whole lot happened, which is fine by us.  Cooper's care team periodically checks the placement of his picc line to make sure that it hasn't moved.  When they checked it today they discovered that it had moved, but to an even better place than it had been in before.  Cooper gained thirty grams today, and is up to 2260.  Just barely under five pounds! He also nursed today for about ten minutes. Tomorrow we will most likely start nursing twice a day if Cooper tolerates it well.

He has a big week ahead of him with his surgery on Wednesday, and we're so thankful to have finally reached this point in his progress!

Friday, September 11th Update

First, I just want to express my gratitude to live in this wonderful country. Today my thoughts and prayers have been for the families and friends who lost loved ones during the tragic events of 9/11. I am proud to be an American!

Cooper slept for almost 16 hours straight today, starting at 2 am last night. All of that sleeping paid off, and he gained two ounces! He is now 2240 grams, or 4 lbs 15 oz. Just one more ounce until the big 5 pounds. :) Hopefully tomorrow will be the day...

Like was previously mentioned, Cooper had a pretty sleepy day. However, he did wake up for a little while and breastfed for 10 minutes! I'm so proud of him. We also did skin to skin for about three hours, which is always my favorite part of the day. It was a good day for Cooper. :)

Thursday, September 10th Update

Cooper had a pretty good day today! He had his eye exam (which is always traumatic) but we received amazing news -- the ROP in his eyes is regressing :) After our nurse told us the news he said "I don't know how much more good news you guys can get!" He is absolutely right. It has been a long two months, but we have seen miracle after miracle with Cooper and are so thankful.

He only gained 5 grams today... still at 4 lbs 13.6 oz. Coop is taking his sweet time to break 5 pounds :) There weren't really any other changes made today. We are just "staying the course" as the resident described it while preparing for surgery next week.

I have to mention how proud I am of Taylor. He is in his last year of undergrad at BYU and has a pretty intense course load this semester, in addition to studying to take the LSAT again in a few weeks, preparing to apply to law schools next month, and working part-time to relieve some of the financial burden of me not working. Each morning he is out the door by 7 am, in class until 5 pm, then drives from Provo to Salt Lake to see Cooper for a few hours before we leave between 9:00 - 10:00 pm so he can come home and continue to study. Despite the enormous stress on him, Taylor never complains and faces each day with an amazing attitude. When Taylor and I were prayerful about starting our family, we knew it wouldn't be easy to have a baby while Taylor still had law school ahead of him, but had faith that if we did our part we would be blessed. We didn't anticipate life being quite this crazy:) but we know that Heavenly Father's timing is perfect. Despite the many demands on Taylor's time, he makes sure that Cooper and I his priority, and we're so lucky to have him!

Wednesday, September 9th Update

We have some big news... Cooper's surgery to repair his ostomy is officially scheduled for next Wednesday! The resident said that the only way it won't happen on that date is if he doesn't really grow between now and then, which is unlikely. Even if he's not quite to 5 lbs 8 oz, they're planning to proceed. The ostomy is really affecting Cooper's ability to grow quickly, and once he has the surgery and regains full function of his bowels it will help him tremendously. 

Cooper didn't end up having his eye exam today, but that will happen tomorrow. One more day for his eyes to vascularize. :) He also nursed for seven minutes today! Right now we are just breastfeeding once per day, but the resident said that possibly by this weekend we will do it once per shift (so twice a day). After Cooper has surgery he will not be on any feeds for at least the first few days, and then he will work back up to full feeds through his feeding tube, and then by mouth. Hopefully it won't take longer than a few weeks. :)

Tonight Cooper and I did skin to skin and then Taylor and I left the hospital around 9:30 pm. We just called to check on him, and Cooper has been asleep since we left so the nurse hasn't weighed him yet. We'll keep you posted tomorrow!