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!

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!

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.

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.

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.

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.