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.

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.

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.

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.

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.

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.