For the caregivers at Benefis

A couple other Montana babies have been flown here in the past week so Nurse Practitioner B and nurse L who were on the flight crews were able to come by Cooper's room to see him. It was so great to see familiar faces and reminded me that the blog is the only way his caregivers from Benefis get to see his progress and photos.

At about midnight they took off his cannula and he has been doing great breathing on his own! I just love his cute little nose!

Waiting

Cooper was extubated yesterday and it seems like the stridor is gone for now!  He was put on high flow with the intent to try room air today, but he had a pretty rough night with frequent bradycardia and a few desats.

His heart rate has been low all morning,  80-90, but the doctor feels certain this is because of the high doses of the medicine he was given to control the swelling from his ENT operation. Once that medicine wears off he should get back to his baseline heart rate of 140-150.

As of now, we are just waiting for his hernia surgery. He is on the schedule for next Friday, October 4th. The plan is to wean him off respiratory support again, then when he goes to the OR, they may do a spinal anesthesia so he will not have to be intubate again.

He had really chunked up in the last week. Last night he was 4 lbs 12 oz. Compared to other 40 weekers that's 0.03%. He's still a little guy.

The Ronald McDonald House is going to work out great! It's about a 10 minute walk from my room to Cooper's NICU room. It's nice to get outside too. 

Due Date

Today, September 25th, was a significant date from the very first OB appointment. Today was Cooper's due date! Instead, we've had Cooper for over 10 weeks. I barely even remember being pregnant!

Today is also significant in that Cooper had his first major operation. He did well and is coming out of the anesthesia just fine. It's great to have some answers and solutions figured out.

He had a rigid brochoscopy. This allowed the doctors to see past his vocal cords to look for scarring. Luckily, everything past his vocal cords, including his lungs, look great! The doctor did see three things at the vocal cord that concerned him.

1. Major sign of reflux that was causing the vocal cords to be inflamed. We had already started treating Cooper for reflux with a wedge, but now Cooper will be on reflux medicine.

2. One of the vocal cords had a cyst. This was a quick fix as they were able to 'pop' it right then.

3. The vocal cords did have some scarring built up, probably from his intubations. They used a special balloon to open up the airway that was blocked by the scarring. They have also given Cooper a shot that is supposed to help prevent the build up of the scarring.

Here's the before and after of his vocal cords. Much more open so hopefully it will be easier for him to breathe!

The doctor told me that it is very possible that he might need to have this operation done 1 or 2 more times before they get the airway to stay open. He even said we might need to come back as soon as 3-4 weeks for the second one. He also told me the other options if this does not work, but they involve surgery to add more cartilage to make the opening larger, or a tracheostomy, so we are really hoping this works! He did say that a tracheostomy would be the absolute last resort.

This operation caused temporary swelling so Cooper was brought back with a breathing tube in. Seems kind of counter productive since a breathing tube caused the scaring, but the swelling should go down and his airway should be more open than before. Depending on how he does tonight, they may extubate him tomorrow. I'm hoping he goes right back to room air since he did so well off respiratory support the last couple of days.

I got a call from the Ronald McDonald House and get to check in tomorrow! It's a small room with twin beds but has a private bathroom so I'm stoked! 

Hernia/Reflux/Stridor

Things are slowly getting better. Cooper pooped yesterday! He is now being fed every 3 hours, but now we are starting to see signs of reflux again so instead of getting his feeds over 20 minutes, they are going to deliver his feeds over a continuous drip. He will be getting 10mL an hour, so 30 every 3 hours. He was 4 lbs 11 oz last night, but he is still on IV fluids and still looks a little puffy.

Cooper's hernia is still easily reduced and they plan to do the surgery to close the hole so it will not be an issue anymore. Possibly by the end of this week, but the doctors are now concerned about another issue. Cooper has stridor, which is loud, labored breathing. We noticed the stridor a couple of weeks ago, but I didn't know what it was called or even that it was an issue.

They seem concerned about it so ENT came by yesterday to view his throat with a scope through his nose. It was so cool to see! The only abnormality they could see was that his vocal chords are not opening as far as they would expect but that his level of stridor wouldn't be caused by that unless his vocal chords were hardly opening at all. They believe the issue is below the vocal chords. To see that, ENT will do an operation tomorrow morning where they will put Cooper under anesthesia, align his airway, and use a rigid scope through the vocal chords.

They expect to possibly see scarring from having multiple intubations, which may be partially blocking his airway. If so they can use a laser or balloon to open his airway at that time. While I don't want Cooper to have any issues, I am hoping that they find scarring and can fix it right away so we will have an answer and a solution so he can get back to normal.

Since he will be put under, the doctors are considering doing the hernia surgery at the same time. No word on a decision yet, but I'm hoping they just get it all done at once!

On a very happy note, since Cooper has kept his apnea and bradycardia very minimal and doesn't have any episodes of low blood oxygen, they decided to take him off all respiratory support yesterday evening. He had only one bradycardia last night, but kept his blood oxygen up so he is still on room air with no respiratory assistance! Yay!

I am still in a sleeper room in the hospital, but since Cooper is stable and no longer needs the critical care of the NICU, he will probably be moving to a regular room in the medical or surgical unit. Once he is out of the NICU I won't be eligible for a sleeper room anymore. I'm hoping to get a call back from the Ronald McDonald House. They are full so I'm on the waiting list.

Again, thank you for all the prayers! I'll keep updating as things progress.

Rough Times

Yesterday was incredibly hard. Cooper did not seem to be feeling any better. He was still on the ventilator, did not have any bowel movements, and his face got so puffy he didn't even look like my little boy anymore. He looked like he was just miserable.

Thankfully today is going much better. He is still incredibly puffy, but when I spoke to him this morning he cracked his eyes open and moved his eyes toward me. It was so wonderful to see him alert. He was extubated at about 10 this morning and I think he was instantly happier!

Soon after, I was able to hold him and offer him a pacifier. I really needed to hold him. It helped improve my attitude and outlook compared to yesterday. He had his eyes wide open (as open as he could get them with the puffiness) and moved his eyes toward each person who came in the room and spoke. No doubt he is feeling so much better!

We still have quite a road ahead of us. He cannot be fed until he has a BM, but he has had some very good toots so I hope it happens soon! If he gets back to normal and shows that he is up to it, they will do the elective hernia surgery at the end of next week to close the opening and ensure that the hernia does not cause issues again. This is best case scenario. If he does not get back to normal, things will be pushed back later.

Thank you everyone for the prayers. It is so great to have so many people who care about little Cooper!

Ambulance and Jet Plane

Wow... The last 24 hours have been crazy!

All day yesterday, Cooper was very lethargic, started getting paler, and was not eating much. He was acting so out of sorts that we decided to take him to the emergency room around 9pm. After a couple of hours in the ER, and a visit from Nurse S, Dr D from the NICU decided to re admit him to the NICU find out what was bothering Cooper.

Cooper's right testicle was much firmer than usual and the doctor suspected a hernia. A hernia is more common in preemies because there is a small opening where sometimes a section of intestines will slip into the testes. This can obstruct the normal passage of bowel. I could not remember Cooper's last BM, but it was sometime Tuesday night. An ultrasound at about midnight confirmed a hernia so they called for the surgeon who could correct it. Once it became clear that we were going to be back in the NICU for a few days, I ran home to get all of my pump accessories.

Jake called me while I was at home and told me that the surgeon was out of town and they were waiting for a jet to take Cooper to Seattle Children's Hospital. One additional passenger could ride with him so I quickly packed a bag and rushed back to the hospital.

At about 2:30am we were in an ambulance on our way to the airport. First time in an ambulance for both Cooper and me. By 3am we were in a tiny jet on our way to Seattle. Again first time for me in a jet and first time for Cooper in any airplane. He did fairly well on the ride and I was actually able to get a short nap before we landed at 4:30am.

The first hour in Seattle was incredibly hectic. At one point he had 12 people in his room. 3 nurses, a nurse practitioner, 2 RTs, a resident, a fellow, 3 surgeons, and an x ray tech waiting outside the door. I had to sit in the hall and wait. It was pretty tough on me. He had apnea quite a few times so they decided to intubate him. He also had a vacuum tube to try to reduce some of the air in his tummy.

At about 6:30am, one of the surgeons was successful in reducing the hernia back in with his finger. They had to paralyze him to get the area relaxed, but it is so great that it was reduced without surgery!

As of right now, we are just waiting to see if he passes some of the air or has a BM. If he does, that means his intestines are getting back to normal. If not, that means a part of his intestines may have been injured from the hernia. If they suspect an injury, surgery will be needed to remove that section. If all goes well, he will still have surgery to fix the hernia by closing the hole so it can't happen again, but since that is elective surgery they would wait until he is feeling better.

They have just decided that Cooper needs a transfusion. This will help him get oxygen throughout his body better and will ensure that he has extra blood before his upcoming surgery. He will be transfused this evening. He has had good results from transfusions before, so hopefully this helps him perk up.

Cooper looks like he is miserable. He is so pale and puny and everytime someone touches him he pauses his breathing. I feel like the apnea is because of pain but I try not to think about that. My heart just breaks when he looks like he is in pain or distressed.

This hospital has sleeping rooms for parents. The room is tiny with only a bed, tv, and electrical outlets, but there are showers down the hall. I'm eligible for the Ronald McDonald House and called today to get my name on the list. I'm hoping to move in there because it is more like an extended stay hotel room.

At this time we aren't sure if Jake will join us in Seattle. We are hoping that after the surgery they send him back to Great Falls for recovery because then they will fly us back. If he does his recovery here, they will discharge him and not send him back to the hospital in Great Falls which means no flight. Jake would have to come pick us up and drive us home and I really don't want to put Cooper through such a long road trip.

So there you have it. 24 hours and so much has happened. It is crazy how fast a preemie can go from good to bad. Nurse S, the flight nurse, snapped this picture of Cooper on the jet. Look at those big eyes!

Coming Home/ 2 Months Old/ 9 Weeks Old

Yep,  we've been a little busy this past week. Here's what we've been up to.

Last Tuesday night I stayed the night at the hospital in Cooper's room. They call it rooming in. The nurses didn't come in for cares but were available in case I had any questions. It was kind of a trial run.

On Wednesday, Cooper had his circumcision and that afternoon we packed up and came home... with Cooper!

Thursday morning we met the pediatrician on base and Jake and I got our flu shots.

Cooper turned two months on Saturday and 9 week on Sunday!

Monday, we traveled to Missoula, 3 hours away, for Cooper's eye exam. His eyes developed just how they should and look just like a full term baby's eyes should look!

Other than those outings, we have just been hanging out at home. I'm just so happy. Life is so good!

It's Happening!

Nurse S confirmed with me that Cooper is going home Wednesday! In preparation for the great escape I started filling out paperwork, the nurse set up our first appointment with the pediatrician on base, Dr G, and Cooper got his 2 month immunizations. I stayed in the room for his shots but didn't watch. I could certainly hear though! Really he did pretty good. One big cry when they poked him, then he just stuck out his bottom lip. I commented to the nurse that he got over it pretty quick and she said that he's been through much worse. I guess a couple quick pokes is better than IVs or drawing blood. Dr R will be here on Wednesday and he is the only neonatal Dr that preforms circumcisions, so we got lucky that he will get to have it done before going home. Now that we have a date, we just wait. 

8 Weeks

Cooper was 8 weeks old yesterday. No big changes, we are just waiting to take him home.


There are 4 different neonatal doctors that rotate working at the NICU. The last doc, Dr K, is the one who told us we would count down from his last bradycardia, which puts us at taking him home Tuesday. She also ordered the oxygen machine and told us Cooper would be going home on oxygen.


Dr P is our doctor now and she really wants to get Cooper off oxygen before he goes home. Nurse L tried him off respiratory support late Saturday night and he did well, but wore out and had to be put back on a very low flow, only 1/32 L. It sounds like Dr P would like to keep Cooper another week or so until they can try him without oxygen again.


The NICU got lots of new babies this weekend and is almost full. I'm hopng that might give Dr P more reason to send Cooper home on Tuesday. If she doesn't, Dr R takes her place on Wednesday and the nurse feels certain that he will change the orders and send Cooper home on oxygen.


It's funny how different the 4 doctors are. I know that they all have Cooper's best interests in mind, and I appreciate them all. But I can tell some of them are more cautious, and some push the babies a little more. It is common for a doctor to write orders, then another doc
tor to come in a few days later and change everything. While I do want to do whatever is best for Cooper, I also want to get him home as soon as possible.


In other news, Cooper is slowly gaining. He's up to 3 lbs 15 oz. Jake did go hunting on opening day but didn't have any luck. He scouted out the same area he hunted in last year and saw some nice Elk. Last year there were only two other campers in that area, but this year it was packed. It also poured rain most of the weekend. I'm sure he will go out and try again.


I'm not counting on Cooper coming home Tuesday or Wednesday. Just hoping! I'm done watching the traning videos and am deep cleaning 1 room in the house each day. The car seat base is installed in the car and I think we are as ready as we'll ever be. Bring it on!

Getting Ahead of Ourselves

As I wrote in the last post, Cooper went off all respiratory support on Monday. It did not last long though. He is such an eager eater that he sometimes forgets to breathe which causes bradycardia (low heart rate.) He had several episodes of bradycardia on Monday that required stimulating to start breathing again, so they put the nasal cannula back in with a flow of 1L. The constant flow helps keep the airway open and helps remind him to breathe. It has since been bumped down to 1/4L. They tell me that some preemies need that constant flow for 3-6 months, some even longer. The doctor feels that Cooper may be one of those babies that needs that extra help. If respiratory support is the only thing keeping him at the hospital, they will send him home on oxygen. The good thing about home oxygen is that he would also have to be on a monitor. The monitor would alarm any time he drops his heart rate, so I would know immediately. I think it will give me peace of mind, so I won't feel the need to check if he's breathing every 5 minutes. 

Nurse J moved Cooper into an open bassinet on Wednesday and has been regulating his own temperature perfectly. He is also doing great with eating. He has taken to breast feeding so well! And he switches back and forth from breast to bottle with no issues. When I am not at the hospital, the nurse feeds him by bottle, but when I'm here I breast feed him. He acts like an old pro. He latches on perfectly and usually nurses a full 30 minutes. Most of the time he doesn't even want to stop at 30 minutes. I call him my little piggy. We have found that if we let him nurse longer than 30 minutes, he gets too full and throws up. He is alert for longer periods of time and is very social. I think he would love to be held all the time, and sometimes throws a fit when I put him in his bassinet, but I am determined to start good habits now, like falling asleep in bed, not in mom's arms. We still have plenty of time to cuddle while he is awake. 

With Cooper eating all of his milk by mouth and regulating his own temperature, he is pretty much ready to go home. On Tuesday the nurse told me to bring in his car seat for inspection, watch the required training videos, and make sure the house is ready, because he might go home soon. Yesterday morning Nurse S told me that that Dr K had ordered the home oxygen equipment with the thought that Cooper might go home this weekend! I brought the car seat in, finished organizing the nursery, and took home some of the books and blankets we had stored in Cooper's NICU room. I even picked out the outfits I want him to wear for the hospital photo and for going home. 

I may have gotten a little ahead off myself. This morning Cooper had two bradycardia episodes. The doctor decided not to send him home until 5 days after his last bradycardia episode that requires simulation, so it looks like he is here until at least Tuesday. He has also lost weight the last couple of days (down to 3 lbs 12 oz) and they would really like to see him gain consistently before going home. I'm okay with that, a few days more isn't too long in the grand scheme of things, plus this gives me more time to deep clean the house. I think someone must have told Cooper that Saturday is opening day for archery season. Jake has plans to camp out tomorrow night and hunt first thing Saturday. Maybe Cooper is delaying his trip home so his dad can hunt this weekend. 

Here is a photo of Cooper's new bed, the open bassinet. 

So Proud

Cooper has had a fantastic day, and we didn't even see it coming!

When I walked onto Cooper's room this morning, I went to his isolette to greet him as I normally do. I thought to myself "he sure looks good today!" Then the custodian, E, popped her head in the door and said he must be happy that he lost a machine. I turned around and noticed his respiratory machine for the high flow cannula was gone. Then I turned back to Cooper and noticed the nose cannula was gone!

I think I got so used to Cooper having a cannula in his nose that I didn't even notice it anymore. I learned to look past it to see his beautiful face. Therefor, I didn't even notice it was gone! He sure does look handsome without it though!

He has been keeping his temp up and they will possibly lift the top of his isolette tomorrow. So now he is off all respiratory support and regulating his own temperature. The only other thing he needs to do to be able to go home is eating all of his feedings by mouth, whether bottle or breast.

We were offering Cooper bottle or breast 3 times a day after cares. Dr K changed that today so we are able to offer bottle or breast on demand. Because of this change I was able to nurse 3 times so far today. I thought he might last a few minutes then we would have to supplement with gavage feeding through the tube, but he has done so good! The last two times he has nursed he did the full 15 minutes on each side that the nurses recommend, so we let him go without any supplementing. He it's acting like a pro!

I don't want to get ahead of myself, but if he keeps this up we may go home very soon! Nurse T told us today that he's almost ready. We (Jake and Maggie) are almost ready too. His car seat will be delivered tomorrow and the nursery is set up. We just need a bookcase to hold all of his books and to hang some things on the walls. It is move in ready though.
It's so crazy to look back to just a week ago. Last Sunday night was a scary, sad night. Today was a perfect, happy day. He has come so far in just a week. I think everyday I see him looking more and more like a full term newborn, now he is acting like one too. Life is good!

7 Weeks Old

Cooper is 7 weeks old today (36 weeks gestational age.) He just continues to amaze me.
Today we tried nuzzling and he latched on right away, and nursed for about 30 minutes. It's hard to tell how much he ate, but we estimated almost an ounce. I just couldn't believe how well he stayed awake!

This evening we tried a bottle and he downed the whole thing in about 20 minutes. He is a great burper. Sometimes all I have to do is hold him upright and it comes right up!
He was lowered down to the high flow nose cannula at 3L yesterday. This afternoon the nurse bumped it down to 2L and so far he's doing great!

We've learned a few things about his personality lately. I thought he was a morning person like me, but he is morphing into his dad. Anytime we wake him up for cares he is a grumpy guy and growls at us like a bear. Jake too is grumpy and "growls" when I try to wake him up.

Once he is awake, he doesn't seem like he wants to go to sleep. Even when he works really hard on eating and gets exhausted, he tries to hold his eyes open. I think he might be one if those kids that fights sleep.

We joke that he is doing so well because he is trying to make up for lost time. That is done with me. Keep making mama proud Super Cooper!

This cute little baby yawn was after his bottle while trying to stay awake.