June 21, 2012- Rough day in the NICU

We had a rough day in the NICU today.  I went in to see Will at 11am and I found that he was on 2.5 Liters of high flow.  I was expecting him to be on 1.5 Liters, so this was a shock.  Our favorite nurse was on, and she came in and told me that Will was breathing pretty fast this morning when she came on and he was retracting.  She increased his oxygen to keep him comfortable and ease his breathing.  He was doing better for awhile.  I went to rounds and talked to the doctor about my concerns regarding his oxygen requirement.  He said that Will will tell us when he is ready to be weaned and that this was a minor setback.  He decided to decrease Will's feedings in case the amount of fluid was overloading his ability to breathe well.  I felt comfortable with the plan, so I left to go to my doctor's appt.

When I came back a couple of hours later, I found Will's oxygen need had increased to 3 Liters!  His nurse came in and said that after I left, his breathing was really fast, he was retracting and his work of breathing was increased.  The nurse practitioner ordered a chest xray and again, it showed atelectasis, but it looked better than the previous xray on Sunday.  The nurse practitioner asked if I had received steroids in the last few days of my pregnancy to help mature Will's lungs and I said yes.  She said that preemie babies tend to do really well the first week while the steroids are still in their body and then the babies tend to need more oxygen as the steroids leave their system.  This made sense to me, but it was still hard to digest since Will was doing so well just a week ago.  Due to this setback, the nurse and I discussed whether Brandon and I should hold Will today since we didn't want to stress him out more than he had been earlier in the day.  I decided that, in the best interest of Will, we shouldn't hold him.  I was okay with this decision until we were ready to leave the NICU tonight.  The thought of not holding my son broke my heart!  Brandon and I look forward to holding Will and snuggling him.  I hated leaving him without comforting him and loving on him today.  We are hoping that Will stabilizes tonight so he has a good day tomorrow and so we can hold him tomorrow. 

The good news is that Will gained another 20 grams and weighs 3 pounds 13 ounces!  3 more ounces and he can move into an open top crib!  We are hoping that he can make that change this weekend! 

June 20, 2012- First Full Bath

Again today, I made it to the hospital in time for rounds with Will's medical team.  Will's doctor wanted to try and wean Will's oxygen from 2 liters to 1.5 liters.  He was happy with Will's weight gain and wanted to continue with his same feedings.  After rounds, I was talking with Will's nurse who happens to be his favorite nurse, and she told me that Will had not had a bath in 9 days!  No wonder he was smelly yesterday!  His nurse said that we could give Will a full submerged bath since his umbilical cord had fallen off yesterday.  Brandon and I were so excited.  

Brandon and I gave Will a bath, and he was so mad!  He normally is a laid back baby, but during his bath, he was so mad!  I have never heard him cry so hard and so long!  Will finally stopped crying when I was washing his back, and I'd like to think it's because I am great at giving baths, but I think he was so tired that he stopped crying.  

The bad news is that after Will's bath, he needed more oxygen.  We think that he was over stimulated and that caused him to need his oxygen turned up to 2 liters.  Brandon and I put him back in his incubator and let him calm down.  We went back to the hospital this evening to hold Will, and he did great with holding.  I think that after he had the afternoon to calm down, he was ready for us to cuddle him tonight.  He was still on his 2 liters, but he was breathing comfortably.  Also, Will was weighed tonight and he gained 15 grams.  He is still 3 pounds 12 ounces, but he is almost 3 pounds 13 ounces.  He just needs to gain 4 more ounces and he will be in an open top crib!   

June 19, 2012- High Flow Oxygen

Last night when Brandon called the NICU, we found out that Will didn't gain any weight, BUT he didn't lose any weight.  We have to look at the bright side.  Today, when Brandon and I went to the NICU, we found Will asleep in his incubator.  He was still on 3 liters of high flow oxygen and he was receiving his feedings of 31ml.  We missed rounds, but the nurse said that the doctor wanted to wean Will's oxygen to 2 Liters high flow at some point during the day.  

For those that haven't seen high flow oxygen, let me take a moment to explain the device that is attached to my son.  First, he has a nasal cannula in his nose that is supposed to completely occlude his little nose.  Next, the cannula is attached to a blue tube that is connected to warm water.  Finally, it is all connected to blended air and oxygen that is humidified by the water.   Now, this sounds like a great piece of equipment that helps my little one breathe a little easier, but it is also an annoying piece of equipment because water from the blue tube sometimes dumps water into Will's nose.  My poor little guy gets water up his nose and we have to suction out his nose.  Brandon and I can't wait for him to be off the high flow so he won't have water go up his nose.  My poor little guy!
We did have one exciting thing happen today.  Will's belly button stump came off today!  I was putting Will back in his incubator when Brandon yelped with surprise.  It scared me to death because I thought something was wrong, but Brandon said to look at his belly button.  When I looked down, I saw that his nasty dried up umbilical cord had finally fallen off!  I was so excited because, I have to admit the dried up stump grosses me out.  Also, it means that Will can have a full bath, not just a sponge bath. and he needs it!  I was holding him this afternoon, and I realized that my sweet little boy smelled like an incubator.  He needs a bath to smell like my sweet little baby.  Maybe I can give him one tomorrow.

Brandon called the NICU again tonight for our nightly update.  The nurse will be turning down the oxygen to 2 Liters since Will has been doing well this evening.  Also, Will gained another 2 oz!  He now weighs 3 pounds 12 ounces!  We are 4 more ounces away from Will graduating from his incubator to an open crib!  Once he is in an open crib, we can dress him, hold him more often and he can try and give him feedings by mouth.  We are hoping that he will graduate by the weekend or by the end of the weekend. 

June 18, 2012- 2 weeks old!

Today, Will is 2 weeks old!  I made it in for rounds with his medical team today and they were all positive about his progress even though he needed to go back on his high flow oxygen.  The Dr. said that Will was just weaned too fast off the high flow oxygen last week, so this time they would take their time getting him off the high flow.  The Dr. was impressed with his weight gain and he wanted to increase the amount of milk per feeding.  Will's feedings were increased to 31ml every 3 hours.  The milk is still at 27 calories, so it helps him gain more weight.  The past 3 nights, Will has gained 2 ounces per night, but tonight that streak came to an end.  He didn't gain weight, but he also didn't lose weight.  I'm just happy that he is tolerating his feeds so well and not having problems digesting all his milk.  

Brandon and I were both able to hold Will today and he did great!  He stayed out of his incubator for about an hour and forty-five minutes.  When it was my turn to hold Will, I was able to hold him skin to skin which is called Kangaroo care.  It is such a neat experience to hold my son chest to chest and have him be so content.  He just laid there, looked up at me and seemed so happy.  

Although, we didn't have any improvements today, we didn't have any setbacks and I have to be happy with that.  I have to remember that we aren't going to have big improvements everyday and that that's okay; at least we aren't having major setbacks.  This is not always easy to remember in the heat of the moment, but Brandon, Will and I have been really lucky and blessed along this journey.  Will has been doing well everyday and we are truly blessed by his progress and prognosis. 

June 17, 2012- Father's Day

Brandon celebrated his first Father's Day with a present from Will.  Will gave him a nice set of grilling tools.  We were so excited to celebrate Father's Day when we got to the hospital, but Will had other ideas.  Will was still having problems keeping his oxygen saturations up and he was still breathing really fast.  We spoke with the nurse practitioner and she ordered a chest xray and some labs.  Will did not like his chest xray, but he didn't cry for his labs.  I held his hand and one of his legs so he would stop kicking the nurse and he was so content with me next to him. 

The chest xray came back and showed that he had atelectasis which means that the tiny air sacs in his lungs were collapsed and he needed the high flow oxygen again.  This, of course, devastated me!  He has been doing so well and I didn't expect this setback.  Brandon and my parents had to remind me that Will has been doing great up until now, and that this is just a tiny setback.  The nurse practitioner also said that his lab work came back and were perfectly normal and showed no signs of infection.  He will have the same labs drawn in the morning to make sure that everything stays the same. 

We went back to the hospital tonight for one more visit.  Will's weight tonight was 3 pounds 10 ounces!  Will gained another 2 ounces!  I was able to hold Will and snuggle with him, but we weren't able to rpactice breastfeeding due to the amount of oxygen he is on with the high flow.  When I was holding Will, he was rooting around looking for his food and he was very interested in sucking on his pacifier.  These are great signs for when he is off his high flow and ready to feed by mouth.
All in all, this was a nice Father's Day with one setback but with other promising signs that Will is doing well.  I have to remind myself of the good things and that his lungs will soon be better and he will be off the oxygen soon.  Although this is hard to remember, I am so lucky to have Brandon by my side going through this with me.  I couldn't ask for a better partner in life and a better father for my son.  Will and I are so lucky and blessed to have him in our lives.

June 16, 2012- Sitting in the hospital

We came to the hospital for a late night visit and we are finding ourselves staying a little longer than expected. Will's oxygen need has gone up a little bit and he is breathing faster than he has been in a long time. It is so hard to sit by and watch his oxygen need increase. He has been doing so well that this setback has me going crazy! Brandon keeps reassuring me that everything is okay but the mama bear in me wants him to be fixed right now! The good news is that Will gained two ounces last night and another two ounces tonight! He weighs 3 pounds 8 ounces!
We are waiting for the nurse practitioner to come by and see Will. Hopefully she will have some insight into his change. Pictures will be posted later when I get home.

The nurse practitioner finally came in after we waited 2 hours to see her.  She listened to Will and said that he sounded great and looked great too.  She told the nurse to increase his oxygen to 1Liter to see if that would help with his rapid breathing.  She and the nurse also noticed that his bed was too warm so it was turned down.  Will's temperature was also 37.5 degrees C.  This is the high end of normal, so the nurse was turned his bed temperature and rechecked his temperature 30 minutes later.  Will's temp was down to 37.1 and he seemed more comfortable.  Brandon and I finally left after 10pm and Brandon will call later tonight to make sure he is doing well.  It has been a roller coaster night!  

 

June 15, 2012- Extended Yard Time

Today, Will is 33 weeks!  I made it to the hospital in time for rounds and spoke with Will's doctor.  Again, Dr. King said that Will is exceeding their expectations for a preemie of his gestational age and that they were not going to make too many changes to Will's plan of care.  Will is still on 0.5 Liters of oxygen and doing well.  He is taking 27 ml (almost an ounce) per feeding and his milk is being fortified to 24 calories so that Will is getting more calories to help him grow.  Dr. King said that if Will is showing signs of wanting to feed by mouth than we can continue to teach him to nurse.  The nurse said that Will is definitely showing signs of wanting to eat by mouth so we were able to practice nursing today.  Will did a great job and he is learning to nurse while keeping his vital signs stable.  He was able to suck and breathe at the same time.  This is a great sign for a preemie. 

Will was out of his incubator (we like to call it his cell) with me for almost an hour and then Brandon held him for another hour.  This was the longest Will had been out of his cell since he was born.  This extended "yard time" was a great bonding experience for us.  Brandon and I look forward to holding him everyday and being able to talk to him while he is laying on us is a wonderful experience.  It is definitely the highlight of our day!

Brandon called the NICU tonight to check on Will and to see how much he weighs.  He is doing really well tonight with no changes.  The nurse said that she had not had the chance to weigh him, but she would before his 11:30pm feeding so Brandon will call back.  Check back tomorrow for his weight and another update!