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 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 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. :)

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 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 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 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 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 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 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 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 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.

Thursday, October 1st Update

It's officially the month of Cooper's due date!! Finally :) I never thought it would come! Cooper gained weight today and is now up to 6 lbs 12 oz (3085 grams). He is gigantic and just getting cuter each day.

He's still not pooping on his own and it's making him pretty uncomfortable. They're continuing to increase his feeds, and he seems to be tolerating the additional milk. Cooper isn't as willing to take his feeds by mouth because his stomach is so full, but he did take a bottle a few times today and drank most of it. We're continuing to hope that soon he will be pooping without needing an enema and then we can start breastfeeding.

Overall, he's doing well! Once he's pooping regularly things will be right on track.

Wednesday, September 30th Update

Cooper had a good day! He gained weight again and broke into the 3000 gram range... He now weighs 3015 grams, or 6 lbs 10 oz! His feeds were increased to 18 ml every three hours, and we were able to feed him a few times with a bottle. Cooper did very well with the bottle, and tomorrow we should be able to start breastfeeding on top of the food he is receiving. If Cooper continues to tolerate the amount they are increasing, our nurse said that he should be up to full feeds in about 4 days! Then from there he will have to be continuing to gain weight consistently and eating without his NG tube. I don't want to jinx anything... but we could be out of the hospital within the next week or two. :)

Cooper hadn't pooped on his own since receiving the enema the day before, so after 24 hours he received another enema in the evening. We're hoping the increased amount of food he's receiving will help him be able to poop on his own.

We're making progress, and continually grateful for the many blessings we continue to receive!

Have I mentioned how amazing Taylor is? He's taking the LSAT on Saturday (and also has 3 midterms this week). He had to catch up on a little sleep with Cooper. :)