Friday, August 30, 2013

4 Pounds!

We have a 4 pounder! Afer that scare last weekend he took off and gained weight consistently. Dr D decided that since his tests came back negative for infection, to start him on eating again. It took him less than 48 hours to get back up to full feeding, so the nurse took out his IV last night.  He did great with a bottle yesterday, and we tried nuzzling this morning, but he was too tired to latch on. Dr D wanted to discontinue his reflux medicine unless he starts showing signs of reflux again. He has had some spit ups and drops in heart rate after eating, but I'm not sure if it's bad enough that he will need the medicine again.

As for breathing, they did bump him down to CPAP, and he is doing well. Nurse practitioner B told me that if a baby is still on respiratory support by 36 weeks gestational, they are labeled as having chronic lung disease. He has been on 21% oxygen (room air) since birth and has only needed the support of pressure to keep his airways open, so she does not believe he will have any long term issues, but that label goes to all babies on support after 36 weeks regardless of what type of respiratory support. Some of the nurses have been hinting that it is possible he may go home on oxygen. I'm hoping that he outgrows it, but if not I would rather have him home on oxygen then to stay in the hospital longer.

I feel like I can see an end in sight for our hospital stay. We just need to get him in an open crib, hopefully off respiratory support, and staying awake long enough to eat his full feeds by mouth instead of by feeding tube. Keep it up Cooper!

Don't you just love how precious a sleeping baby looks.

Monday, August 26, 2013

Much better

Thank you so much to everyone who is praying for Cooper. Today he is much better. The transfusion was just what he needed as he is breathing much better now.

His tests are all coming back better but they still believe he has some kind of infection going on. That means at least five days of antibiotics and at least five days with no food.
He is still pretty fussy which I believe probably has to do with hunger. The nurse did decide to swaddle him to help sooth him. He loves to be swaddled! After two weeks of clothes and swaddling, he was very unhappy about being naked all day yesterday.

Since we can't practice nuzzling, today we are just cuddling. Look how cute he is with his skin all pink again.

6 Weeks Old

I'm late posting for Cooper's 6 week birthday because it was an incredibly emotional day.  Cooper had a great day on Saturday, but when downhill fast.

As I was getting ready to leave the hospital at 9 pm on Saturday night, Cooper had a bad episode of not breathing and dropping his heart rate. I assumed it was because I fed him a bottle at 5 and he got a bath at 8, so he was probably just tired. Plus he had a history of doing that while being fed through the feeding tube because of the reflux. Once he stabilized I went home, thinking everything was fine. Nurse A even lifted the top off his isolette since he had been relating his temp so well. 

My phone was ringing at 1:30 in the middle of the night. A phone call at that time of night is not good news. Sure enough, Cooper had been having trouble breathing so Dr K decided to put him back on the CPAP. They ran some tests and were pretty sure he had an infection so they also started him on antibiotics. Which meant he got an IV in his foot.

Later that morning I got another call telling me that they had ceased his feedings and were only going to do cares every 4 hours because anyone someone touched him for a temp check or diaper change he would stop breathing and drop his heart rate. The nurse had already had to force his breathing with a oxygen mask twice that morning. That meant I wouldn't be able to hold him.

During the day the nurse and doctor tried to be optimistic, but he just didn't seem any better. The CPAP alone wasn't enough so they added a rate to the pressure. His blood work came back a little worse each time and Dr K finally made the decision that Cooper needs another blood transfusion.

The evening was so hard on all of us. They had to draw more blood to send to get the blood transfusion prepared. Then they needed to give him another IV so he could get the blood and medicine simultaneously. I'm not sure how many times they stuck him because I couldn't watch, but it took a long time and he had marks on each arm and his free foot and two on his head. They finally got an IV to work on his head, my last favorite spot.

He had a lot of air in his belly so they inserted a vacuum tube to help relieve some of the pressure. At that point I was wondering just how much more could go wrong.

The worst part was that Cooper was miserable and let us know it. There is nothing worse that hearing him cry but knowing that he had to go through that pain to get the care that he needs. It was so scary we just couldn't leave him.

Once they finally were done doing everything he needed, he still wouldn't calm down. He just lay in bed crying like he was in pain. Around 1 am the nurses could tell I was having a hard time, so they let me hold him. It still took him a while to settle, but once he did he slept for 2 hours. I started to doze off a few times but then he would move or make a noise and I would be wide awake again. I finally had to ask the nurses to put him away so Jake and I could come home to get some sleep.

I'm home, pumping now, then going to bed. This has been an incredibly draining day. Emotionally and physically. I'm not usually an emotional person and the few times I do get upset enough to cry, I don't do it in front of other people. I couldn't hold it in today. I broke down in front of Jake this morning and in front of the nurses this evening. Nurse L wasn't even our nurse tonight but made a point to come in to give me a hug. I sure do love our NICU nurses. I'm going to try to get some sleep and pray that tomorrow is a better day.

Saturday, August 24, 2013

Little Man is Getting Big!

Wow...4 days since I posted last. I have to get better about keeping the blog updated. I know there are at least a few of you out there that look forward to hearing about Cooper!
He is doing very well. He had a bit of a struggle in the middle of the week. He was having lots of episodes of bradycardia and some spit up. Dr P decided it might be reflux and started him on meds Thursday morning. He has only had three doses so far but I believe it is helping.

He is doing okay with eating by bottle. He does not eat much before getting tired and falling asleep but that is normal for a baby that is only 35 weeks gestational age.

We also practice nuzzling at least once a day and I think he's doing great. He knows exactly how to latch on and does great for just a few minutes, then starts to drift off to sleep. The trick is going to be for him to figure out to continue sucking. Right now he sucks for a few seconds and takes a break for about 30 seconds, then repeats.

I have noticed a major improvement though. He used to suck, then take a break to breathe. Now he had figured out how to breathe while sucking!  Yay Cooper!

Last night he was 3 lbs 7 oz, gaining weight everyday! Sometime he only gains a few grams, but at least it is a gain everyday! Just last night I realized that he almost looks like a full term newborn. He is still much smaller than full term babies, but he is chunking up. He has chipmunk cheeks and a Buddha belly, even his chicken legs are getting a little thicker!
I'll end this update with a picture of my little man. He is such a sweetie and I am so in love with him.

Tuesday, August 20, 2013

Nuzzling and Nippling

Cooper continues to get stronger and bigger everyday. He is now 3 lbs 5 oz! His bed is set to 27 Celsius, the lowest setting they go to, and they continue to lower his settings on the high flow nose cannula. He had his last dose of caffeine today. He had been on caffeine since birth to help him remember to breathe but since he is breathing so strongly we are going to see if he can do without the caffeine.

The biggest accomplishment in the past day involves feeding. He had been nuzzling and nippling. I didn't realize those were different things so here is what the nurses mean when they say those words. Nuzzling is skin to skin with mom and practicing latching on. Nippling is being fed from a bottle. We have had some success nuzzling, but the nurses say that preemies tend to do better with the bottle and once they strengthen the sucking muscle they do better at breast feeding.

He started nippling last night and will be offered his bottle twice a day. Last night he started sucking right away, then stopped to take some so breaths then back to sucking. That is exactly what they want him to do at his age. He ended up drinking 5 mL from the bottle, then got tired, so the nurse completed his feeding through the feeding tube. This morning he reacted the same and again got 5 mL. They are not concerned with the amount he gets at this time, more concerned about letting him suck, swallow, and breathe altogether. He has a ways to go, but he's still doing great for his age.

Sunday, August 18, 2013

Catch Up

I just realized I fell behind on my Cooper updates. He actually had quite a few steps forward this week!

He got his picc line out on Monday! He now has nothing inserted in his skin. All of his monitors are stuck on his skin, nothing puncturing it. This greatly reduces the risk of infection. Big step!

On Thursday, they switched him from CPAP to high flow. This is administered through the same nose cannula, but with different settings. They have already been able to bump his settings down and if they continue to lower it and he tolerates it, he may be weaned from all respiratory help soon.

Oh Thursday morning he had his first eye exam. The nurse practitioner, B, that administered the exam was very pleased with what she saw and says that there are no signs of problems yet. He will still have eye exams every week just to be sure no problems develop.

He has continued to wear clothes and be swaddled all week and has been maintaining his temperature very well. The nurse says they may lift the top of his isolette tomorrow and if he still does well he might move to an open crib! Yay!

He is back to full feeds and they started to add a human milk fortifier to bring my milk up to 24 calories per ounce. Without the fortifier it would only be 20 calories per ounce so those extra calories should help him gain weight more consistently. He hovers around 3 lbs, last night at 3 lbs 1oz. He also started vitamins this morning and did not like it! He dropped his heart rate right away but the nurses say that is normal until they get used to the vitamins.

He is doing great with his pacifier so we have also had some practice sessions for breast feeding and while he is still not ready he is showing that he knows what to do. It is hard work for a baby this small to suck, swallow, and breathe all at the same time and he gets very tired during our practice sessions. He is right on track for his gestational age of 34 weeks. Milk flows more easily from a bottle so he will be offered a bottle in the next few days to get the suck, swallow, and breathe down while strengthening his sucking reflex.

I think that is all of his updates. Listing them all together shows just how great this week was. He had that set back weeks ago so it seems like he's making up for lost time now! I promise to try to update more often this week.

Thursday, August 15, 2013

Back To Work

I recently made the decision to go back to work while Cooper is in the NICU. The nurses say with babies that stay long term, it is common for moms to work so they can take off again when baby comes home. 

Luckily, my boss and supervisor have been amazing. We worked it out so I'm working part time, only about 4 hours a day. I'll get up early and get ready for work, then get to the hospital by 8 am for hands on time with Cooper. Then go to work from about 11-3, the perfect time to help cover lunches. Then back to the hospital to hang out with Coop before his 5 pm cares.

The only wrench in the plan is pumping. I know they will give me a break to pump, I just need to do trials the first few days to see when is the best time. Today is going to be my first day back so wish me luck. Here's hoping it all comes back to me quickly!

Coop is doing well this morning. He got eye drops to dialate his eyes because he has his first eye exam today. Hopefully his eyes are developing like they should and he won't have any long term issues.

Wednesday, August 14, 2013

One Month Old

I can't believe Cooper is a month old already! He weighs 2 lbs 15 oz.

My friend Micah took some professional photos of Cooper today. I can't wait to see them and share them! For now here is a photo I snapped today.

Monday, August 12, 2013

Cooper's NICU Room

We are so lucky to have Cooper staying at Benefis here in Great Falls. The staff is absolutely fantastic but what really sets this NICU apart is that each baby has his own room. Usually a NICU is one large room with rows of isolettes or cribs. I think if we did not have a seperate room I would not be as comfortable here and would not stay and visit as long as I do.

Here is a tour of Cooper's room.

The door to the hall. We have the end room so it has an angled doorway and is a little larger than the other rooms. Some of the nurses call it the "king's suite"

To the right of the door is Cooper and all of his accessories. The isolette, monitors, IV pumps, and respiratory equipment.
To the right of Cooper is a little nook by the window. This is the perfect place to pump because the view from the door is blocked by the isolette.

On the wall opposite the isolette is the bench. The bench is so not comfortable for sitting, but it's great for napping! The cabinets and drawers built in to the bench are for family storage so I brought all of Cooper's preemie clothes and some blankets to keep here.

To the right of the bench is the sink area, then back to the door.
Isn't it great? Thankfully it doesn't feel so much like a hospital. It's our second home for a couple of months!


So we have been planning to put new carpet in the living room this fall. The carpet didn't look too bad, but it's been in the house since before we moved in and we did potty train two puppies in this house. Since Jake is home earlier than expected he decided to get a head start and pull the old carpet up.

He thought he would find plywood but surprise...hardwood. Now he is going to take on the task of sanding and staining the hardwood. Hopefully we will have photos of the finished product soon!

Sunday, August 11, 2013

Four Weeks Old

Cooper is still doing very well. We had another small but exciting step forward today. Cooper got to wear clothes for the first time! We put him in a sleeper (the smallest preemie sleeper we have) then swaddled him for cuddle time with Jake.

Cooper was in Jake's arms for almost 3 hours and his temperature stayed up so the nurse turned the bed to manual temp then left Cooper clothed and swaddled and covered him with a fleece blanket and left him to test to see how well he can maintain his own temperature.

I think he enjoys being swaddled. He seems to be sleeping heavier and doesn't drop his blood oxygen level as often. Hopefully this becomes his new norm!

Cooper weighs 3 lbs 1 oz tonight and is 15.5 inches long! Look how cute he is in his giraffe sleeper. It says Little nickname for him. We have to keep his left arm out of the sleeve until he gets the IV out.

Friday, August 9, 2013

Another Good Day

Everyone keeps telling me that having a baby in the NICU is like being on a rollercoaster... Lots of ups and downs. After a week of downs it's so nice to have a couple days of ups!

We had a few small changes today. Minor but still positive changes. Cooper has been going up on his feedings 1mL every 6 hours but since he is doing so well digesting it, they have bumped it up to adding 1mL every 3 hours. His full feeds will be when he gets to 24mL which he should be up to in just a week or so. They also took off the blanket covering his isolette this morning. Now we can see him all the time. His weight last night was 2lbs 14oz... so close to 3lbs!!!

Cooper is still has the nasal cannula but has been on NIPPV (non invasive positive pressure ventilation) which delivers oxygen at a set pressure and rate to breathe for him. If he continues to do well today, they may switch him to the CPAP (continuous positive airway pressure) which delivers pressurized oxygen to keep his lungs and airways open, but does not breathe for him.

Every nurse, doctor, or respiratory therapist who comes in his room comments on how much better be looks and how great he is doing. And I got so many comments on the photo I posted on Facebook yesterday of everyone saying how good he looks.  It is so great to see how many people he has watching him and rooting him on. Thanks for all the support!

Thursday, August 8, 2013

Happy Boy

Before and after photos...what's the difference?

Yay! They extubated Cooper's breathing tube today and now he's back on the nasal cannula. Dr R was hesitant to make this step since Cooper did not do well with the extubation they tried on Saturday but Nurse C advocated for us and convinced the Doc that Cooper was ready. I'm so glad she did because I think he is loving it! He is doing great keeping his heart rate and oxygen level up. The few times he dropped his heart rate he instantly brought it back up on his own. Finally a step forward! 

Other than that no big changes. They are slowly giving him more milk, up to 5 mL every 3 hours. He also seems more alert today than he has been in a couple of weeks. Go Cooper!

Tuesday, August 6, 2013

No Steps Forward Or Steps Back

Cooper got his blood transfusion on Sunday. It wasn't too hard on me. I just know it was something that had to be done so now we move on. By the time I left the NICU on Sunday he was already nice and pink! Yesterday he seemed to feel a lot better. He was feisty during his cares moving around a lot. By the evening, though, he was wiped out. They started feeding him a small amount of milk again yesterday and he is digesting it well. He gained 20 grams yesterday bringing him up to 2 lbs 11 oz. Yet again we're getting close to 3 lbs! Hopefully this time he continues to gain instead of dropping weight.

Yesterday, the doctor was hopeful that they could try to take out Cooper's breathing tube again. He would go straight to the nose cannula, but we would all prefer the cannula over the breathing tube. It would be much less invasive as it only blows air into his nose instead of directly into his lungs. This would give him a chance to show us if he's ready to breathe on his own again. Sadly, he did not have a very good night last night. He dropped his blood oxygen level often, so he will be on that tube at least a couple more days.

I was so hoping to get rid of that tube. I'm pretty sure Cooper hates it. It makes him gag and anytime the nurses have to clean it out I can tell by his face that he is crying, but the tube blocks his vocal cords. It makes me feel so helpless when I can tell he is crying but I can't hold him or comfort him. And I have to let the nurses continue to do things that I know cause him discomfort because I know it's good for him in the long run.

As I keep saying, I know it will just take time for all of his issues to get sorted out. I just wish time would go by a little faster so he can get healthy and come home where he belongs.

Sunday, August 4, 2013

Three Weeks Old

Cooper is three weeks old today (32 weeks gestational) but I am not in a celebratory mood. When I got to the NICU this morning the nurse was working on putting in another IV. She explained that Cooper needs a blood transfusion and that the blood would clot in the picc line so an IV is needed just for the blood transfusion.

A blood transfusion?! I was so hoping we could make it through this NICU stay without needing to give Cooper blood, but his red blood cell level is way down today. The nurse got the IV in, then took a blood sample for the lab to test to find out his blood type, then they will find a match in the bank and prep it, so it looks like it will still be a couple of hours. We were hoping that if this ever came up we might be able to donate our own blood or use blood from another family member, but as it is he needs the blood now and there isn't time for that.

I did a little research just now about blood transfusions. I skipped all of the information about risks because this has to be done and I would rather not worry about the bad that could happen. I did read that anemia is actually very common in preemies and the symptoms include tiring easily, not gaining weight well, and having difficulty breathing. That sounds exactly like what Coop has been like for the past week. I also found out that blood transfusions are fairly common for preemies as young as Cooper. I read lots of comments from other preemie moms that said the babies do so well after getting blood. I'm hoping that this is just what he needs to start having some steps forward. I can't wait to see his skin looking rosy instead of ghost white.

Saturday, August 3, 2013

Love Hate Relationship

Or should I say hate hate relationship. I hate pumping. Let me explain just a few of the many reasons I hate pumping. Pumping is so unnatural. Pumping takes up so much time. Pumping just plain hurts!

First off, pumping is unnatural. Yes breastfeeding is a wonderful thing, but pumping is a whole different experience. With breastfeeding you get to see the immediate effect on your child and probably the most enjoyable thing about breastfeeding is that you get to bond with your child. With pumping there is no bonding, only hate for this annoying machine that you feel is sucking the life out of you. A breast pump can really make you feel used.

Secondly, pumping takes so much time. I try to pump every three hours. Each time I pump I take 5-10 minutes to set up, 20-30 minutes to pump, and 10-15 minutes to clean up and sterilize the accessories. And sometimes an extra 5 minutes somewhere in there to have a private melt down when something goes wrong (such as overflowing one of the containers and realizing I have a lap full of milk...yep I get distracted and it's happened multiple times!) So after almost an hour of the process I only have two hours before I have to turn around and do it all again! I have to schedule everything around making sure I am near my pump at the right time.

And last, pumping hurts! After I get everything hooked up, I dread turning the machine on because I know the first 30 seconds will be hell. I find myself holding my breath at first until the feeling finally goes numb, then it's not so bad. Maybe I'm a wimp, but I wouldn't wish that pain on anyone. Thank goodness it is short lived.

After all of that, here's why I pump. Pumping my milk is the best thing I can do for Cooper. On days when he's not doing well and I can't hold him or even get to touch him much, I feel helpless like there is nothing I can do to help him. On those days it feels like pumping is the only thing I can control. Did you know that when a mother gives birth early, her body knows to formulate the milk specifically for the needs of a preemie. That means my milk is made special for Cooper and is far more beneficial to him than formula would be. Therefore I put up with my hatred toward my pump and will continue this madness for as long as he needs.

Now, for any poor soul that is in the same situation as me and has to pump instead of breastfeed, here are a few tips I've picked up in the last few weeks.

Don't worry if you don't think you are producing enough milk. If you keep at it, all of a sudden you will notice that you are able to fill the container every time (and sometimes overfill it too!) Seriously, I don't even remember when my milk finally came in, I was only producing a few drops each time and then all of a sudden it was plentiful!

Get some lanoline cream. Before I started using it I could hardly even put clothes on for fear of rubbing them and having intense pain. While I do still have pain when I first start the pump, I believe the lanoline is helping.

Also invest in the Belmama & Cherub shower hug. It's a super soft cloth that wraps around your chest during a shower. It protects the sensitive nipples from the spray of water. I tried holding a hand towel over them for the first week, but this is so much better to have both hands free! 

Get the Nuk ultra thin breast pads. I tried other disposables and I tried reusable, then my sister in law sent me the Nuk ones and I love them so much more. They seem to be the most breathable so you don't get that sweaty smell underneath. TMI? Too late!

Once you get to the point where you are pumping more than 2 oz per session, start separating the milk into more than one bag. I was packaging up to 6 ounces together in one large bag for two weeks before a nurse finally explained to me that once they thaw out a bag it must be used within 24 hours. Even when Cooper was on full feeds he wasn't using near that much each day. So separate it into smaller bags so they don't have extra left over that they have to throw out.

Last, check to see if your insurance will pay for a pump rental. That way you can use a hospital grade pump instead of a cheaper less effective pump from the store. Our insurance is paying the rental fee for a hospital grade pump as long as Cooper is in the NICU.

And... It's time to pump again.

No Real Progress

The last two days have been a lot of the same. On Thursday they decided that because of how much secretions he was having and how often it was plugging up his breathing tube, they switched him to a larger breathing tube. He was doing well with that and had gotten a better skin color, with very few episodes of dropping his blood oxygen level. They told me that he would possibly go back to the CPAP with a nose cannula today. I was really happy about that because poor Cooper often gags because of the breathing tube.

When we came in this morning the nurse told us that they took him off the ventilator and tried him on the CPAP, but that he quickly showed them that he was not ready to breath on his own again. So he is back on the breathing tube, probably for at least 3-5 more days before they try to take him off again.

Because baby IVs have to be moved every couple of days, they put another picc line in. This can be used as an IV for a longer period of time. They will start his food through the feeding tube today, but again it will be a slow increase so he will need those IV fluids to supplement. He is also on a series of six shots and as long as he has an IV, they can give it to him through that instead of poking his skin more.

The good news is that they feel certain that he does not have an infection. The test came back negative. His color is fairly good today and he is a bit more alert during his care times, but he is showing us that he still needs to rest. Last night he weighed 2 lbs 8 oz.

Thursday, August 1, 2013

Ladies Man

Cooper has a new reputation in the NICU. He's a Ladies Man. He's been having lots of episodes where he drops his blood oxygen level and sometimes multiple nurses and the respiratory therapist all have to come in his room to get it back up. Nurse K and RT S joke that he does it because he just wants all of his girlfriends to come in his room.

Because he had been having so many problems, they continuously check him for infection but thankfully the results always come back negative. He has so much secretion coming out right now that it plugs up his breathing tube and it has to be cleaned out more often than normal. Because of this, they did a different infection test which won't have results for two days, but in that time they have gone ahead and started him on antibiotics just in case. He just got his pick line out on Tuesday but now they had to put an IV in for the antibiotics. They have also stopped his feedings for now.

It's hard to hear all of this and to look at Coop and see how pale he looks and how exhausted he is acting. I just have to keep reminding myself that preemies just need time. He will be fine, he will get through this issue, he just needs time to get stronger.