Monday, December 28, 2015

A special lesson at Wal-Mart

A few weeks ago, Taylor and I were at Wal-mart grabbing a few groceries while my mom watched Cooper. (oh how date night changes once you have a baby!) As we were checking out, the cashier noticed that I was buying Neosure, the special preemie formula Cooper uses, and commented on how expensive formula is. I agreed, and then told her that we had to buy this special kind for our baby who was born prematurely. She asked how early Cooper had been born, and I told her 26 weeks. As soon as the words left my mouth, her eyes filled with tears but she smiled and asked us how he was doing. I shared a little bit of Cooper's story, and she was very gracious and then shared that she had also had a 26 weeker, born in 2001 who only lived for three hours. Taylor and I both teared up as she shared a special testimony about how much she loves her baby and that she knew she would be with her again. The nice woman also told us that the stress and trauma of losing this baby was too much for her husband, and he had left her and her three other children shortly after losing their daughter. By this time, the tears were flowing pretty freely for all three of us. This woman was so positive and strong as she shared these personal details with Taylor and me, and wished us the best as we finished getting our groceries and left the store.


Once we were outside, Taylor and I could hardly speak because we were so touched by this kind woman. We were also reminded how fortunate we are to have a baby who defied the grim odds of being born at 26 weeks. This kind lady touched my heart in many ways and reminded me of valuable lessons. We truly never know the burdens and experiences people around us are carrying. I was so humbled that the cashier shared her story with us, and I still wish there was more I could have done for her besides offering a few words of comfort and thanking her for sharing something so personal with us. As we drove away from the store I resolved to be more mindful of those around me, strangers or not, and try to ease the burdens they may be carrying. 


December 28th Update

Today Cooper had his bi-weekly check-up at the pediatrician to monitor his blood pressure and weight. Exactly two weeks ago (December 14th) Cooper weighed 10 pounds 12 ounces, and his blood pressure was well within normal range. Unfortunately, today he only weighed 11 pounds 2.5 ounces... definitely on the lower end of gaining weight. For the last few weeks Cooper has been having pretty bad reflux, and throwing up large amounts of food at least once per day. I think the reflux is contributing to his sub-optimal weight gains. They do make reflux medication, but it makes babies more susceptible to pneumonia, so our pediatrician wants to save that as a last resort. We will continue to feed Cooper frequently and hope that he outgrows this reflux soon!

Next month he has quite a few appointments: a follow up with his nephrologist for high blood pressure, six month check-up, and the neonatal follow up clinic, where he will see all of his specialists from Primary's.

Cooper had a wonderful first Christmas and was thoroughly spoiled by his grandparents and great-grandparents! Taylor and I continue to feel so blessed to be Cooper's parents and we're grateful for the support and love of so many wonderful people.





Friday, December 11, 2015

Cooper's Blessing Day

Cooper had his special baby blessing on November 15th. Customarily these blessings happen at church in front of the rest of the congregation, but because we're having to be so careful about limiting his exposure to germs and illness, we had Cooper's blessing at home with only our immediate family members (and two sets of grandparents). It was a very special day, and Taylor gave Cooper a beautiful blessing. Definitely a day we will always cherish:)



 All of the wonderful men who took part in Cooper's blessing. (Uncle Alec, Grandpa Hyde, Uncle Matt, Uncle Clayton, Great-grandpa White, Taylor, Grandpa Kordsiemon, and Bro Pierson and Bishop Smith) We're just missing Taylor's brother Garrett, who was getting over a cold and graciously stayed home so he wouldn't risk Cooper getting sick. We're grateful for him and his sacrifice!








5 Months Old

Cooper is 5 months old! (2 months adjusted) Here are a few five month highlights.

- This week Cooper had his longest stretch of sleep at night... 7 hours! 
- Last night he rolled over from his stomach to his back for the first time
- He's a great eater, and usually eats about 21 ounces a day
- Still constipated every day, and needs a suppository/pear juice/miralax to help his digestion
- Started laughing in response to his crazy parents this week
- Loves snuggling! 
- His legs are getting super strong. He's been able to put a lot of weight on them for a while now, but he's continuing to get stronger and can stand up (with assistance) for a long time
- Cooper is becoming more expressive, especially when we put him on his stomach. He will squawk at us until we pick him up again :)
- He is always happy after eating and when people interact with him

My best guess is that he's about 10 and a half pounds, and as of last week he was 21 inches long. We love our Coop-ey boy! 



December 11th Update

Cooper is doing so well! Last week he had his first dose of the synagis (RSV prevention) shot. He will continue to receive an additional shot every 28 days until March. As of last Thursday, he weighed 10 pounds 2.5 ounces! He's continuing to put on weight normally and is getting bigger and bigger.

On Wednesday Cooper had another eye exam with the ophthalmologist at Primary Children's. At his last eye appointment, a few days after coming home from the NICU, we received good news and it looked like the ROP was regressing and his eyes were developing normally. On Wednesday, a long time prayer was answered. In the words of Dr. Hoffman, his eyes are "wonderfully perfect!" The ROP is gone, and his eyes are completely normal for a newborn. He is still high risk for eyesight problems in his future because of his  IVH (brain bleeds) but we don't have to come back for a followup appointment until April. For now, everything looks great and I feel peace that his eyes will continue to develop normally. We're grateful for the many prayers that have been offered in behalf of Cooper's eyesight.

While we were at Primary Children's on Wednesday, I wanted to drop off a thank you gift for each of our six primary nurses that took care of Cooper while he was in the NICU. It was my first time walking back into the NICU since Cooper had transferred to the Infant Unit before we were discharged from the hospital. Outside the NICU is a phone that you pick up to tell the receptionist who you are (and they can also see you on a camera). I picked up the phone to enter, and instead of asking who I was, they just opened the door because they recognized me. I had to laugh... I guess being there all day, every day for 14 weeks means you're not easily forgotten! I only stayed long enough to drop off the gifts, but we're planning to go visit our NICU nurses with Cooper very soon.

Cooper turned 5 months old (2 adjusted) on Monday! (the 7th) I can hardly believe it has been 5 months since his big arrival into the world. They have been the most refining months of my life, but I would never change the valuable lessons that Taylor and I have learned. We're so grateful for the continued love and support for our little family!




Monday, November 30, 2015

Monday, November 30th Update

Sorry for the absence of posting! A week and a half ago we had an appointment with the nephrologist at Primary Children's. Cooper's blood pressure continues to be above normal, so we slightly increased his blood pressure medication dose (from .7 ml to .8 ml). The doctor told us to not be overly concerned about his hypertension. While it is above normal levels, it's not at an extremely high rate that could cause damage. They did a few tests to eliminate any serious problems (like protein in his urine, etc) and those all came back negative. His doctor thinks that Cooper will grow out of the high blood pressure by the time he's one year old. Right now we're keeping a close eye on it, and we'll have a follow up appointment in January, where they will do a kidney ultrasound and some blood work.

Today Cooper is officially about five times his birth weight... he's exactly 10 pounds! Double digits:) He's not on his age chart for his weight or height percentiles, but he's officially in the 2nd percentile of head size for his age! I'm so happy about his 2% head size and being on the chart in one thing!

For once, today at his weekly check-up his blood pressure was well within the normal range. It seems that the increased dosage of medication is working. He's getting stronger and more active each day, and we're thankful for the wonderful progress he is making. :)





Monday, November 16, 2015

Monday, November 16th Update

Today we had Cooper's weekly pediatrician appointment, and our little man weighs 9 pounds 6 ounces! His blood pressure was a bit higher than it should be, but we'll follow up next week. Cooper has an appointment with the nephrologist at Primary Children's later this week, so we may learn more about the state of his kidneys/blood pressure at that point.

Overall he's doing great! Yesterday we had his baby blessing, and I will do a separate post with some pictures. We can't get enough of our mini coop :)



Tuesday, November 10, 2015

Tuesday, November 10th Update

As of today, Cooper has been home from the NICU for one month! As I suspected, time goes waaaaay too fast at home. This last month has been amazing, and we feel so grateful to have our boy home with us!

Today we had Cooper's 4 month (1 month adjusted) pediatrician visit. Cooper had his circumcision and four month shots today, and handled both amazingly. He is a brave boy... he only briefly cried when he had the shots. His blood pressure was totally normal (he's still taking the blood pressure med twice a day) and he gained half a pound since last week. He now weighs 9 pounds 1 ounce. His length today was 21 1/4 inches. With his adjusted age (1 month) Cooper is 50 percentile for weight and height!

Cooper loves to be held and snuggled all the time, and we can't get enough of his cuddles. He is learning to grab things and is getting better at eye contact and following objects with his eyes. We do tummy time every day, and Cooper's neck is getting incredibly strong! Most of the time when we have him on our chest he arches his neck back and holds his head up. He is incredibly mellow, and is only upset when he's hungry.

He's becoming a good little eater, and now takes about 18 ounces a day with the bottle! He wasn't gaining enough weight when I was doing pumped milk and bottles combined with nursing a few times a day (because we have to add formula for extra calories to the milk I pump) so right now I'm exclusively pumping and Cooper takes bottles for all of his feeds. I could write an entire other post about pumping and my love/hate relationship with it for the last 4 months:) We are officially done with the NG tube, and it's so nice to not have any tubes/wires/lines! 

I just finished packing up his newborn clothes and got out the 0-3 months... sometimes I really can't fathom that our tiny 2 pound baby is nearly five times his birth size. He is truly a miracle, and I can't help but cry sometimes when I think about how far he's come since his scary entrance into the world. Thank you for your continued love and support for Cooper!






Tuesday, November 3, 2015

Monday, November 2nd Update

(Meant to post this yesterday!)

Today Cooper had his surgery follow up clinic. His surgeon, Dr. Myers, who performed both of his surgeries  at Primary Children's examined his incisions and said that they look great! If she had any concerns she was going to have us come back in a year, but she said everything looked excellent and that we don't have to come back for 3 or 4 years. (Hard to imagine a 3 year old Cooper! Haha)

We also had Cooper's weekly weight and blood pressure check-up with his pediatrician. Cooper gained 10 ounces since last week! He now weighs 8 pounds 9 ounces, and he's 19.5 inches long. His blood pressure was a bit high, but it was time for his next dose of blood pressure medication, and Cooper was starving and crying. Next week he has his "1 month" (4 month) check up.

Taylor and I continue to feel so blessed to have Cooper home. Now that he's here, I don't know how we ever lived without him.




Tube Free Cooper

On Halloween night, Cooper pulled out his NG (feeding) tube from his nose. We weren't really having to use it much for a few days prior, so we decided to see how he did on Sunday before putting it back in. Cooper took his full amount of feeds with a bottle, so he is now officially tube free! It's kind of surreal to not have any tubes/lines/monitors attached to him for the first time in his entire life. He's like a real baby, or something:) We're so happy to be done with the NG tube!

I thought the timing of going NG free was interesting. If you remember, the first nurse practitioner in the infant unit told us she thought we would be home by Halloween without the NG tube. Thankfully, the second practitioner sent us home two days later. But she was right... Cooper did it by Halloween!


Cooper's First Halloween!

Halloween was Cooper's first major holiday... and it was so fun! We didn't do much (#germs #RSV) but Cooper wore a cute little pumpkin outfit and went to Grandma K's house for her annual Halloween lunch. We love our little pumpkin!


Cooper and cousin Charlotte 


Tuesday, October 27, 2015

Celebrating Small Victories

Today Cooper took his largest amount of food through his bottle to date... 2.5 ounces! I'm sure most parents don't think twice about their child finishing a bottle, but for Cooper, it is something to celebrate. 

While he is taking more of his feeds through the bottle and we're having to put less through his feeding tube, he rarely finishes an entire bottle, and the most he's taken previously is about 2 ounces. Having a preemie baby has taught me a valuable lesson about celebrating small victories each day. 

"No matter our circumstances, no matter our challenges or trials, there is something in each day to embrace and cherish. There is something in each day that can bring gratitude and joy if only we will see and appreciate it." -Dieter F. Uchtdorf 



Monday, October 26, 2015

Monday, October 26th Update

I can hardly believe that Cooper has been home for a little over two weeks! Time felt like an eternity in the NICU, but at home it's flying by...

Today we had Cooper's weekly weight and blood pressure check-up. Unfortunately, he only gained three ounces in the last week. He's now 7 lbs 15 oz. We're hoping he picks up his weight gain this week! His blood pressure looked good, which we're very happy about.

Cooper is still doing well at home! He's taking more of his feeds by mouth and we're having to use the NG tube less. We can't wait to take that thing out for good! For now it's a great tool in helping Cooper work up on his feeds. We're making good progress.

Coop is still on a pretty good schedule. Most nights he gives us a few 2 - 3 hour stretches between eating! Last night he woke up almost every hour:) I never love Taylor more than when he gets up with Cooper at 3 AM and let's me sleep.

Cooper loves to snuggle, and the surefire way to calming him down if he's fussing is patting his back. He is still working on keeping things moving through his bowels comfortably, and you can always tell when he's trying to pass gas or stool because he's very grunty.

We love his sleepy smiles and sweet personality! We also love not driving to Primary's every day. :)  Having Cooper home is amazing, and we're so thankful to have him with us.




Monday, October 19, 2015

Monday, October 19th Update

Today we took Cooper to his weekly check-up, and everything went well! He has gained 7 ounces in the last week, and now weighs 7 lbs 12 oz. It's normal for babies to gain a half ounce to one ounce every day, so Cooper is gaining weight perfectly. All those 3 am feedings are paying off. :) His blood pressure looked great, which we're also happy about.

The best news received today is that Cooper qualified for the synagis shot, which is a preventative shot to protect high-risk babies and children from RSV. We're sooo happy that he qualified for it (and that our insurance will cover it, because the retail is about $2000 per dose). He qualified for 5 doses, and he should receive the first dose next month. Synagis should greatly reduce the risk of him getting RSV this winter! We're feeling very blessed.

First time outside for more than two minutes :)



Visiting Cooper

Now that Cooper is home, I want to share a little bit of what our life is going to be like. 

When we left the NICU they gave us some very important counsel. Although Cooper now looks like a healthy newborn, he has chronic lung disease and an extremely fragile immune system. As much as we want to treat him like a full-term baby, we have to be SO careful now that he's home.

A common cold for most people will turn into a scary hospital stay for Cooper. (In fact, the number one cause of death for micro preemies who survive the NICU is a respiratory infection caught before age 2.) We were advised to not have anyone under age 18 hold Cooper until after RSV season ends in March, and to limit visitors. 

Visitors will be welcome to love him with your eyes, but not with your hands. :)

If you visit, please only come if you have not had any signs of sickness (including a runny nose, sore throat, etc) for more that 48 hours and haven't been around anyone who has been sick in the last 48 hours. We would also ask that if you plan to be around Cooper you have the TDAP shot. If you are not up to date on your TDAP shot, we kindly ask that you wait until after RSV season ends to see Cooper. 

Cooper will not be leaving home except to go to doctors appointments until March. It's going to be a long winter for us, and we will miss being with family and friends for the holidays and other gatherings. However, isolation is a small sacrifice to make in order to keep Cooper healthy! Here is the link to a blog post about isolation: http://anearlystartblog.com/2014/01/07/isolation-isnt-about-you/ 

Thank you for your help in keeping Cooper safe! We will continue to blog about Cooper's progress to keep everyone updated.  We can't wait for the end of flu and respiratory season so we can share Cooper with friends and family. :)

Thursday, October 15, 2015

We're home!

In case you haven't heard, they kicked us out of Primary's a few days earlier than expected, and we actually came home on Saturday! I walked into the Infant Unit  on Friday morning and the nurse practitioner told me that Cooper looked great and she wanted to discharge us the next day. We were actually planning to move Saturday morning, so we had the busiest 24 hours moving, doing all of our discharge teaching, and getting ready for Cooper to come home!

Saturday was amazing. After finishing moving, we got to the hospital where we met with people from home health who set us up with a monitor and oxygen and a pump for Cooper's NG feeds. Cooper was supposed to eat at 3:00 so the nurse made his bottle, handed it to us, and walked us out to our car. Taylor and I were laughing that they wouldn't even let us feed him... I think another baby was waiting to move into his room so they got us out pretty quickly.

Walking out of the hospital with Cooper felt surreal. I kept waiting for someone to tell me that it was a joke, and Cooper actually couldn't go home with us. I kept thinking "wait, we really get to take him home?" He's not going to stay here forever?" Driving away from the hospital was the best feeling!

The first night with Cooper was a bit crazy. The monitor that they had sent us with that tells us his oxygen level and heart rate stopped working around midnight. We called the home health company, and after doing some trouble shooting they told us they would bring a new one in about an hour and a half. That hour and a half was terrifying for me... I was nervous Cooper was going to stop breathing and I wouldn't know without the monitor! Around 1:30 AM they showed up with a new monitor and all was well. We didn't get much sleep that night. :)

The transition to home has been very smooth, and I'm grateful that we've been able to be at the hospital every day with Cooper so that we've been prepared to take care of him at home. We've kept our same NICU schedule... every three hours we change his diaper (except at home you don't have to weigh the diaper :), you can just put the wipe in it and throw it away), eat, and go back to sleep. Cooper is on a blood pressure medication that we give to him twice a day, as well as a vitamin that we mix in one of his bottles.

They sent us home with some oxygen (even though Cooper has been breathing on his own for the last few weeks) because when they did his car seat trial (he had to sit in his car seat for 90 minutes) he dropped his oxygen levels a bit and didn't pass. (However, if you hooked up most babies to a monitor many of them would drop a little too, you just don't know it because they're not on a monitor.) Anyways, since being home Cooper has been fine and hasn't need any oxygen!

On Monday we had our first appointment with our pediatrician, and Cooper is doing very well! He had gained three ounces since leaving the hospital on Saturday, his blood pressure was better than they expected, and overall our pediatrician said he looked awesome. It was so comforting to hear that Cooper is thriving at home. We will go back to the pediatrician weekly for them to weigh him and check his blood pressure, and then we have another appointment with him in a month. I have to share a funny story from our appointment... when we first got to the pediatric office the receptionist was looking up our information and was so confused. "Why does it say that this is a newborn appointment if he was born in July?" :) Then later when we were setting up his appointment for next month she said "I don't know what to call this appointment. A 4 month check up?" Haha #preemieprobs. She was super sweet, it just made me laugh!

Yesterday (Wednesday) we had an appointment at Primary's with the pediatric ophthalmologist and it went well! Cooper's eyes have both almost fully vascularized, and we don't have to go back for 8 weeks. The eye doctor said that he thinks we should be in the clear with his eyes now. We're so grateful! It was kind of the best thing ever to walk into Primary's and walk right back out with Cooper when we were done. :)

All in all, things are going well at home! We're still working with Cooper to have him take more milk through nursing/bottles and less through his NG tube. It's a slow process, but he's getting better at it. He's also still working hard to stool, and gets really uncomfortable when he needs to poop. As soon as he stools he immediately feels better. :) His colon is still growing to match the rest of his body, but he is having plenty of poopy diapers, which we're happy about!

We love having Cooper home, and now that he's here I don't know how we ever lived without him. He is the sweetest boy and we love snuggling him all day (and all night). :) We're so grateful for the support throughout this journey from so many people! I will still try to update the blog with Cooper's progress at least once or twice a week, for anyone that may be interested in how he's doing. Again, thank you all for your support. The burden of 96 days in the NICU was made incredibly lighter by amazing friends and family, and most of all by miracles and comfort from the Lord.






Friday, October 9, 2015

Friday, October 9th Update

Today has been a wild day! Our countdown to Cooper's homecoming sped up... we're coming home TOMORROW. Cooper passed his hearing test and his blood pressure has been stable, so we're going home. It's been a whirlwind of a day... meeting with the dietitian, home health people, milk techs, developmental therapist, scheduling a pediatrician appointment for Monday, learning how to do the NG tube and certifying in CPR.

I have so many thoughts about reaching the end of this journey and will be sure to post them when I have a free minute...

We're so thankful to our loving Heavenly Father, amazing friends and family, and of course all of the doctors, nurses, and staff at Primary Children's. Cooper is coming home just in time for his due date on Monday. :)

Thursday, October 8, 2015

Thursday, October 8th Update

We have some big news! (I'm scared to say it out loud in case I jinx it.) Cooper is coming home next week!!!!!!!!

Today a new nurse practitioner came on to our unit and she means business. If Cooper can maintain a stable blood pressure through the weekend (today they increased the dosage of blood pressure medication and his numbers were perfect), pass a hearing test, car seat trial, and gain weight, she's hoping to discharge us as early as Monday or Tuesday! She told me to made an appointment with our pediatrician for Thursday, so one way or the other I expect we'll be home by Thursday. :) Cooper will be coming home with the NG tube, and this weekend Taylor and I will practice using it. The NP expressed that she feels like Cooper will continue to improve with the amount of food that he's taking orally at home in a calm setting, and with only me being the person feeding him (as opposed to nurses at night when I'm not there). He will have quite a number of outpatient appointments, but we're so grateful to finally be bringing him home! Hopefully all goes well this weekend and our plan won't change. With all of that being said, I won't actually believe we're leaving until we're walking out the door.

Cooper nursed three times today and did so well! Right now he's talking about half of each feed either through breastfeeding or with a bottle, and then receiving the other half through his NG tube. He's continuing to improve and we're doing our best to make eating a positive experience so that he doesn't develop any oral aversions. Because Cooper is high risk for developmental delays, he will begin various therapies shortly after coming home.

Like I mentioned before, Cooper's blood pressure was pretty stabilized today. After talking to the nephrologist, he explained that for whatever reason some preemies experience this kidney inflammation and elevated blood pressure as they approach their due date. They have done a urine test, drawn blood, and done some other tests that have all come back normal. There is no serious problem happening with his kidneys and high blood pressure, but Cooper will be on blood pressure medication for the next 2 - 6 months.

Although the reality of the various complexities we will be working through at home with Cooper is a bit daunting, we are so grateful that he is well enough to come home. We will do our part to make sure he thrives and can't wait to finally be all together as a family under one roof. We're praying that all goes well this weekend and that Cooper will be ready to come home next week! Our hearts are full of gratitude that the long awaited day is finally here.  




Wednesday, October 7, 2015

Wednesday, October 7th Update

Cooper is 3 months old today! It's hard to believe how far he's come, and we're so thankful for his amazing progress.

Today Cooper's blood pressure has still been high, so they continued to increase the blood pressure medication he's receiving. They are keeping a close eye on his pressures and hopefully they will decrease and stay consistently normal.

Cooper is up to a high volume of milk. He's receiving about 2.5 ounces every three hours, either by his NG tube or orally. Today he actually threw up 3 times, but it wasn't a huge amount so we're not too worried. He wasn't super interested in taking feeds with the bottle or breastfeeding today, but we're working with a developmental therapist daily and she's confident that he will become more interested as he continues to grow and his stomach gets used to the amount of food he's now eating. Again, it's all a slow process. However, despite that it feels like he's not super interested in taking most of his feeds orally, he's taking about 24% of them each day. Last week he wasn't taking any, so it's good progress! We're learning patience in so many ways.

He lost a little bit of weight today, and weighs 3140 grams, or 6 lbs 14 oz.

Today we asked the nurse practitioner for an estimate about when Cooper will be ready to come home. She said Halloween is probably a fair estimate. We're hoping that it's sooner, but obviously want Cooper to be ready to thrive when he leaves Primary's.  We'll see what the next few weeks bring!



Tuesday, October 6, 2015

Tuesday, October 6th Update

Cooper is 13 weeks old today, and already getting that teenager attitude! Just kidding, he's pretty much adorable all of the time.

We have officially left the NICU for the infant unit, and it is a whole different ballgame. In the NICU each nurse is assigned to one or two babies, and they are always within ten feet or so of the bed to keep an eye on things. In the infant unit we can easily go an hour or more without seeing the nurse, they mostly just pop in if bells start ringing. We do have our own room that we only share with one other baby as opposed to five, so there is definitely more privacy. We are also now allowed to eat in Cooper's room, have multiple visitors at a time, and there is a television (although I don't see what good it is since Chloe vetoed The Walking Dead). 

There are some obvious perks to the infant unit that I think we are going to get used to, but it is also a little bittersweet. We are sad to leave all of our primary care nurses in the NICU; we had grown close with all of them and they all took excellent care of our boy. We also now have to wear silly pink bracelets that we can never take off so long as Coop's in the hospital; NICU never made us do that! Also, the water cups in the infant unit are a third of the size of the NICU's. This isn't sacrament meeting, we could use some bigger cups.

On a more serious note, we got back the results of some tests that were done on Cooper yesterday. He had his head scanned via MRI, and it revealed that there is some damage to the tissue surrounding his brain ventricles. They're not new injuries and they occurred in the early stages of his life when he was still experiencing brain hemorrhaging. It is impossible to tell exactly how this will affect Cooper, but it does put him at an increased risk for certain conditions. The biggest risks deal with motor impairment, primarily cerebral palsy. There is also some risk, albeit significantly lower, of learning disabilities. 

Obviously this is concerning to us as his parents, but we are just going to take things as they come. There is still every possibility that he will turn out just fine, but we just have to keep an eye on him as he grows up. If he fails to reach certain developmental milestones within a reasonable time period then we'll take him in to get him checked up on. From that point we can start early intervention therapy programs that are hugely helpful in helping him to overcome a lot of issues that he may have.

We always knew that Cooper was at risk for these things, but we'd become accustomed to really good news all the time. The MRI served as a reminder that our road doesn't end when we walk out the door with Cooper. In the meantime though, he's perfect as can be. We love our little man.

Thank you for your continued prayers and support.

-Taylor

Other significant events from today:
-The picc line is officially out! Cooper is off TPN and only taking breast milk feeds. So happy!
-He nursed once today for 17 minutes
-Cooper is having some kidney issues. The ultrasound showed that the kidneys are inflamed, and his blood pressure has been increasing today. This afternoon they started a blood pressure medication. This evening his numbers were still high, so they can him another one time additional dose. Hopefully this will help and they'll be able to just give the medicine once per day. The nurse practitioner said that he could be dealing with high blood pressure for years to come, but he can receive medication to keep it under control. 
- He's just the sweetest boy. Today was emotional, but Cooper remains our sweet and happy boy. We're so grateful to be his parents and for the tremendous joy he brings to our lives! 


Monday, October 5, 2015

Monday, October 5th Update

Today was a pretty eventful day! Cooper is 90 days old (39 weeks gestation). He had his brain MRI this morning. They had to stop feeding him for a few hours prior to the MRI because he had to be sedated, but he actually wasn't too fussy. He did very well during the MRI and maintained his oxygen levels without assistance. We'll learn the results of the MRI tomorrow.

For the last few days Cooper's blood pressure has been higher than normal. Today he had a kidney ultrasound and some labs to make sure he's not experiencing any symptoms of an adrenal crisis (like what happened in July when he was a few weeks old). I believe we'll be keeping an eye on his kidneys for the rest of his life, but luckily giving him hydrocortizone reminds his kidneys what to do. We'll learn the results of the ultrasounds and labs tomorrow.

He's still pooping at least once or twice every 24 hours, which we're very happy about. Also, Cooper gained weight and is now exactly 7 pounds!! Today Cooper had to take all of his feeds through his NG tube because of the sedation he received this morning, but tomorrow we'll finally start nursing and working up on his feeds.

Tonight is bittersweet.... it's Cooper's last night in the NICU. Cooper is now doing well enough that he will be moved tomorrow from the NICU into the Infant Unit across the hall, which is for much less critical babies. This unit is much more comfortable and private for parents, but we're so sad to leave our primary nurses behind! The NICU really has been our home for the last three months and where we've spent as many waking hours as possible. However, moving to this infant unit is definitely a huge step in getting ready to come home.

We're not really hearing specifics about a discharge date, but Cooper's doing well and hopefully the day is soon. :)



Sunday, October 4, 2015

Sunday, October 4th Update

Today was a good day for Cooper. They increased his feeds, and hopefully tomorrow he will no longer be on TPN (the supplemental nutrition) and solely on breastmilk! That will be a big step towards home. He will also be able to have the picc line taken out once he is no longer on TPN. He didn't poop while we were with him today, but had early this morning. Hopefully things will continue to go well. :)

Today while I was holding him (he'd been asleep for 2 hours) he had a big desaturation and dropped his oxygen saturation levels from 93 to 65. It was strange because he was totally asleep, and we're thinking it might have been silent reflux that is very common with preemies. When they're refluxing they will hold their breath to protect their airway. Obviously this is pretty scary because had it not been for the monitor, we would never have known that Cooper was apnec. I'm hoping we'll be able to come home with a monitor and oxygen for a while after Cooper is discharged if we're still dealing with reflux.

Tomorrow Cooper has an MRI to examine his brain (something they always do before discharge). It's been a while since his last head ultrasound, and the MRI will give us a more thorough look at the state of his intraventricular hemorrhages.

Tonight his weight was 3145 grams, or 6 lbs 14.9 oz. He's so close to 7 pounds!



Saturday, October 3, 2015

Saturday, October 3rd Update

Today was a really good day. This week has been a long one... It's been discouraging that Cooper seemed to be taking a step backwards by not pooping, and Taylor had an incredibly intense week with 3 midterms and preparing to take the LSAT this morning. However, today Cooper pooped on his own! 3 times! Taylor took the LSAT, and while I'm sure he did very well, one way or the other it's over. :)

It's also General Conference weekend, one of my very favorite weekends of the year. I believe this was the first conference weekend in my entire life that I wasn't at home, enjoying donuts (a Hyde family conference tradition) and watching the messages being shared live. Instead, I listened to part of it on the radio while making the 40 minute drive to the hospital. I watched the sustaining of 3 new apostles on my phone while I sat in the pumping room. And now Taylor and I are watching it together before we go to bed. I will never forget our NICU General Conference weekend, and I'm so grateful for the inspiring messages being shared!

Cooper had a good day! Like I mentioned before, he pooped! I asked Taylor if he wanted to change the poopy diaper this evening, and he respectfully declined. :) Cooper is up to having 36 MLs of milk every 3 hours, which is a little more than an ounce! He just has a little ways to go before he's up the full amount they want him to be taking every three hours, and then we'll really focus on him taking all feeds by mouth. Right now he's taking about half through his NG tube, and half in a bottle. He's getting stronger and building up his stamina each day. We're so grateful for the progress he is making! A few days ago when I said that he might be ready to come home in a week or two may have been optimistic. But we're getting there :)



Friday, October 2, 2015

Friday, October 2nd Update

Another day, still no pooping for our guy! Everyone keeps telling us to be patient... to which I want to say, we've been in the NICU for 88 days. :) He had to have another enema today, and we're hopeful that sooner than later he will figure it all out!

Cooper is eating 26 mls every three hours (almost an ounce). He tried a bottle a few times today, and took between 1/2 - 2/3 of the bottle. The rest was given to him through his NG tube.

Cooper gained weight and is up to 6 lbs 13 oz (3110 grams)! We love our happy boy.