June 30, 2012- An Important Lesson

First, let's talk about Will's day and then I will get into the lesson I learned today.  When we arrived to the NICU, Will was on his 2 Liters 30% oxygen and he looked super comfortable.  When I picked up Will and snuggled him, his respiratory status was normal, regular and his percentage of oxygen went down to 28%.  We have found that Will loves to be held, especially by Brandon and myself.  I tried to nurse Will and he was not having it today.  He just laid with me but didn't want to nurse.  I was slightly frustrated with our lack of progress and Brandon had to quickly remind me how far we have come in our NICU journey and that Will is still quite small.  Brandon and I kept trading off snuggling with Will and we all loved it, especially Will.  He was so relaxed and his respiratory status was really really stable.  

After Will's morning feed, we let him sleep for a while and then we needed to bathe him.  We definitely had the smelly kid in the NICU.  He needed a bath!  This time Will loved his bath.  He didn't cry at all during the bath, and only cried when I was done washing him and it was time to get dressed.  Brandon and I dressed Will in his first outfit that came from our home.  His other outfits were NICU outfits.  We were so happy to have him in our clothes.  After Will's bath, he was pretty tired and he just laid on Brandon while he was fed through his tube.

Tonight, I made a solo trip back to the NICU to attempt to nurse Will again.  When I arrived, Will was starting to stir in his crib.  The nurses all say that it is a good sign when Will starts to wake up right before his cares and feeding.  This means that his body knows when his belly is empty and that it is time to feed.  This is help him know that it is time to nurse or feed from a bottle.  I tried to nurse Will again and this time he did better, but he fell asleep after 2-3 minutes.  I think he was so tired from his bath, that he was too tired to nurse.  I was a little disappointed, but I know that Will is getting better everyday, and that he will catch on to nursing soon.  I was able to snuggle my little baby while he had his feeding through his tube and he sucked on his pacifier.  This helps him grasp that sucking and getting a full belly go hand in hand.  Will did have a nice weight gain tonight.  He now weighs 4 pounds 7 ounces!  Way to go!

So the lesson I learned tonight...  I was walking in the NICU tonight when I saw a friend from work.  Her nephew was born yesterday at 30 and a half weeks.  She was telling me about why he was born early and that his entry into the world was pretty scary.  This made me think back to the day Will was born and that he came early, but that he was relatively stable when he came out.  I remember those first days in the NICU, and how scared I really was.  I am scared at times now, but not like I was back then.  I know that Will is going to do well in life, and that he is just taking his time getting well.    I told my friend to let her brother in law and sister in law know that the first days are the scariest, but that they are in the best place for their son and that things get better.  I told her that I would be happy to visit with her family and let them know about my experience in the NICU.  I would love to be a resource for someone like one of my friends was a resource for me since she had had a NICU experience with her daughter.  The entire time I was holding Will, I thought about how far we have come and how lucky I am to have him in my life.  I hope my friend's family has a good NICU experience and that their baby has a good journey through his NICU stay.  Many prayers are needed for their little family!

June 29, 2012- Laughter in the NICU

Today, Will is 35 weeks!  After a day like yesterday, Will and I needed to have a good day.  What a day we had!  Will gained 3 ounces yesterday so that was a good starting point.  When I arrived to the NICU this morning, I found out that the day doctor had stopped Will's steroids because he wasn't convinced that they worked, and he didn't want Will to run the risk of the side effects of the steroids.  Will's respiratory status had been stable for a few hours and he looked great when I arrived.  He was breathing easier and looked more comfortable.  Will and I made an attempt at nursing around 11:30, and he did great!  He nursed for about 13-15 minutes.  This qualified as an entire feeding!  He fell right asleep after nursing and slept for 3 hours until his next cares time.  While he slept, I put Will back in his crib where yesterday, he seemed really uncomfortable and today he did great!  He wasn't arching his back or really squirming around.  Throughout the entire day, Will's respiratory status was really stable.  His respiratory rate was in the normal range, his percentage of oxygen was about 27% which was better then the 35% from yesterday.  I was so thrilled with Will's progress throughout the day.

Around 5pm, a half hour before his next feeding time, Will was awake and acting so hungry.  The nurse said that since he was interested in eating that I could try and nurse him at that time instead of waiting until 8:30pm.  Will latched right on and nursed for over 15 minutes!  This was the first time he nursed twice in one day.  If he gains weight tonight, he will have passed day one of two of stage one in the feeding stages.  I can't wait to find out if he gains weight.  What a great day!

1960 4lbs 5oz 27-32

So I guess you are wondering when the laughter comes in.  Well, whenever we do Will's cares, we take his temperature, change his diaper and either nurse him or feed him through his feeding tube.  A couple of the times I changed Will's diaper, he would immediately poop in the clean diaper.  I was just happy that he was diapered before he decided to poop.  Well, our luck changed slightly on the last diaper.  Brandon and I changed Will at 5:30 before I nursed him.  While I was nursing him, Will decided to poop in his nice clean diaper.  When I finished nursing him, I changed Will's diaper.  I put on the new diaper and was getting ready to put some diaper rash cream, when Will decided to pee!  He peed all over his chest and all I could do was laugh.  Will was shocked by what he had just done, and Brandon and I just laughed and laughed!  We finally composed ourselves and cleaned Will up and put a new outfit on him.  Will was now wide awake staring at us with his hiccups.  He looked so pitiful and sad that he peed on himself and had the hiccups.  Of course, it was the time we had to leave the NICU since it closes from 6:30-7:30.  I felt so bad leaving him, but his awesome nurse scooped him up and held him while she finished charting.  I knew that I was leaving him in good hands. 

Well, I just spoke with Will's night nurse and she gave us the news that Will lost some weight.  He is now 1960 grams which is 4 pounds 5 ounces.  It is a little disappointing because we haven't passed day one of stage one of feeding, BUT Will had a great day.  He is starting to get the whole nursing thing and he was stable on his oxygen.  Plus, we figured that Will might lose some weight when he had 2 nights of great weight gain.  I have to remember, small steps for a small baby!  We can't ask too much of our little man.  Tomorrow is a new day with new chances to nurse and gain weight!

June 28, 2012- Tears in the NICU

I have tried and tried to be positive during our time in the NICU.  As Brandon would say, I put on a good front for the nurses and doctors, but I really do fall apart when a small thing changes in Will's day.  Today, I fell apart in Will's room in front of the nurse practitioner, and I know that our nurse today knew I was upset.  Brandon reminds me that we are truly lucky in that things could be worse for Will and that he is relatively healthy for his prematurity.  I know that this is true, but it is hard for me to see my son in the NICU not making huge strides in his hospitalizations.  I also know that Brandon and I are lucky that we have Will and that I was able to carry him as long as I did.  

 

One thing that I have to be thankful for, is that I am a nurse and that I know what questions to ask the doctors and nurses.  While, I am a mom first, the nursing background helps.  When I am at work, I tell my parents to advocate for their kids because they know their child the best.  I tell them to ask questions and to give their opinions on their child's care.  I may only have had Will 24 days ago, I have learned that I know Will and I know when something is wrong.  Today was no different, and I was so grateful that the nurse and nurse practitioner took me seriously and helped Will out.  

When I arrived to the NICU at 8:30am, Will was still on his 2 Liters high flow and he was on 35% oxygen.  This was a huge change from the day before.  Will was nursing on 23% oxygen, and this increase worried me.  Also, Will was breathing really fast and didn't seem too comfortable.  I tried to nurse him, but he was so sleepy and his respiratory status was not the best this morning.  I ended up holding Will during his feeding, and his breathing slowed down and he was a little more comfortable.  When I put him back in his big boy crib, he immediately seemed uncomfortable and his respiratory rate ranged from 60-100.  I knew that something was not right with my son, and I couldn't put my finger on it.  Brandon arrived to the hospital and I told him what I was feeling.  We sat there and watched Will's breathing and he was desatting and his respiratory rate was still high.  He asked the nurse to call the nurse practitioner.  The nurse practitioner came in to talk with us.  I told her that I knew that something was wrong, and that he started changing once the steroids were stopped, after 2 days, earlier in the week.  I knew that the steroids worked, but the doctor wasn't convinced.  When I explained this to the NP, she said that she would continue to watch Will closely.  

Later in the day, Will was still not happy, so the nurse placed him on my chest around 2:30pm while he was feeding, and he immediately relaxed while on me.  At this time, the NP came back to check on Will, and I was so mad that he looked good because he was on me.  I explained this to the NP, telling her that he is only content when he lays on me.  I told her that I can't always be around and that he needs to get used to the crib.  She said that she would continue to watch over Will.

Around 5:30, the NP came back and said that she was reading over Will's entire chart, and saw why we started his steroids and how he improved after they were started.  She said that she took the information to the doctor on call, and she decided to start the steroids once we have ruled out an infectious process.  The NP ordered a chest xray and some blood work.  The xray looked better than the previous xray, and one of the blood tests came back normal.  When I left at 6:30pm, we were waiting for the other blood tests to come back.  I am thinking that Will will be back on steroids when I get back to the NICU in the morning. 

Through all the tears I shed today, I felt okay going home.  I feel that because I advocated for Will and kept telling the nurse and the NP that something was wrong, that they listened to me and looked for what was causing Will's respiratory distress.  I hope that my parents at work will listen to me, and advocate for their child because parents do know best, and while it's good to listen to the professionals and the experts, parents need to remember to speak up and voice their opinions too.

  I can't wait to call the NICU in a little while to see how he's doing.

June 27, 2012- The NICU Rollercoaster

The NICU rollercoaster is a never ending ride.  There are times that I feel like Will is making great strides and then he takes a step backward.  It really is one step forward and two steps backward.  When I arrived to the NICU, I was told that Will had graduated to Team 2 which is his new medical team.  Babies who are on Team 2 are not as sick as those babies on Team 1 and they are considered the "feeders and growers".  This made me really happy!  When Will's new medical team met for rounds, they decided to keep him on the 1.5 Liters of oxygen and to wean his oxygen every other day.  This way, Will didn't wean off his oxygen too fast.  I was okay with that and I sat to nurse him while he was on 1.5 Liters of high flow.  Will did a great job nursing and didn't need to have any milk put through his feeding tube.  After nursing, Will slept on me until it was time to feed again at 11:30.  When it was time for Will's 11:30 feeding, I put him back in his crib.  That's right, I said crib and not incubator!  Will is in a big boy crib!  At first, he didn't know what to do out in the open.  He looked around at his new surroundings and soon fell asleep.  I took this opportunity to leave him for a while and to run home quickly.  

When I made it back to the NICU, I found that Will's oxygen need had increased back to 2 Liters high flow!  I was completely shocked.  He was doing so well when I left.  The nurse told me that this is to be expected when a baby makes the big leap from an incubator to an open crib.  The open crib is a huge milestone, and there are times that babies need more oxygen to cope with being in a big boy crib.  It was still hard to see Will going a little bit backwards.  Then it was time to nurse.  Will did a little better tonight as compared to last night.  He was able to suck for a few minutes, but then he fell asleep.  The nurse said that it's okay for him to be sleepy.  He had only practiced nursing 5 times, and that he was doing better than expected with the nursing.  

Finally, after losing weight last night, Will gained 55 grams!  He now weighs 1935 grams which equals 4 pounds 4 ounces!  He's getting so big!

June 26, 2012- Making Great Strides

I finally feel like a mom!  I know sounds funny considering that my son is 22 days old, but I feel like I am finally a parent!  I'm not sure how to truly explain this, and unless you've been a NICU parent, I'm not sure you can understand what I am saying.  For 21 days, I have had to look at my son in an incubator, wearing only a diaper, watching someone else feed him.  Today, I walked into Will's room to find that the nurse had dressed in him a pair of pajamas in preparation to move him to an open crib.  Then, I was able to nurse Will without any help and he did great!  He nursed for about 45 minutes and when he was done, he went into a milk coma!  This meant that he didn't need to be fed through his tube.  I was able to produce enough nutrition to satisfy my son.  Yes, I have been pumping milk and Will has been receiving it through his tube, the fact that he could feed from me on his own was amazing!  After Will finished nursing, he fell asleep on me, and it made me have a flash into the future and what the next few months will bring.  I finally realized that he won't be in the NICU for forever.  One day, and I hope one day soon, Will will come home for good!

Of course I made it to the hospital for rounds with Will's medical team, and the doctor said that we were going to stay the course and listen to what Will is telling us.  He had been doing really well on 2 Liters of oxygen, so he was weaned to 1.5 liters and tomorrow he will go to 1 Liter and change over to a regular nasal cannula.  He won't need the high flow anymore.  The doctor also said that it was fine to start weaning Will out from the incubator.  I am thinking that by 11:30 pm tonight, he should be in his big boy crib.  

Tonight Will lost some weight.  Last night he was 1905 grams which is almost 4 pounds 4 ounces.  Tonight he weighed 1880 which is 4 pounds 3 ounces.  The nurse said that it is expected for him to lose a little weight since he has started nursing and that burns a lot of calories.  Once Will gets used to nursing, he will gain weight again.  Also tonight, Will tried to nurse again, but I think he was so tired out from earlier that we weren't as successful.  He was able to latch on and make good attempts at sucking, but he was a sleepy little guy.  He couldn't stay awake too long to nurse so he received his feeding in his tube.  I'm okay with the effort and I know that we will try again tomorrow.  I can't wait to see what tomorrow brings!

June 25, 2012- 3 weeks old

3 weeks ago at 6:31am, I gave birth to a wonderful and sweet baby boy.  To celebrate his 3 week birthday, Will was able to breastfeed for the first time!  I'm not talking about practicing after I pump, I'm talking about true breastfeeding!  The nurse said not to expect much since this was the first time, but Will did great!  The plan is to let Will nurse once per shift and when he gets the hang of nursing, he can move on to the bottle once a shift.  After he masters this skill, he can nurse or take a bottle twice per shift, then 3 times per shift and then on demand.  These are the four stages of feeding in the NICU.  Once he has mastered the feeding stages, he can come home!  My awesome nurse today said that it could take 2-3 weeks to master these skills. 

Also today, Will's oxygen was lowered to 2 Liters from 2.5 Liters.  He did great with the oxygen wean and he probably could have been weaned some more, but his medical team is being conservative with his oxygen wean and Brandon and I are just fine with that.  After he weaned down the last time, and had to go back on high flow, I would rather go slow than too fast and have him have another setback.  The medical team will make the decision in the morning whether to wean him again tomorrow or not.  I don't see why they wouldn't wean him down to 1.5 Liters.  I guess we will have to wait and see.

Finally, Will was able to be held by more people than just Brandon and myself.  My friend, Laura and my niece, Aubry were able to snuggle my little man.  He did pretty well being held, but because of all of his activity in the morning, he soon grew tired and I had to put him back in his box.  I was sad that Josh, Aubry's new husband, wasn't able to hold Will.  He will have to be first in line next time he and Aubry are in town.  Brandon and I have to watch to make sure that Will doesn't get too over stimulated with his new surroundings and his new privileges.  We have found that when Will's respirations go up and his oxygen saturations go down, that he needs to go back in his incubator to rest.  Will is really good at letting us know what he needs from us. 

June 24, 2012- Drumroll please...

Will weighs 1840 grams!  This equals out to be 4 pounds and almost 1 ounce!  Plus he is 17.5 inches long!  Brandon and I can't believe that Will has gained a pound since he was born 3 weeks ago.  What an amazing feat to have gained so much in such a short time.

Today, Will's oxygen status was really stable.  We were able to wean down his oxygen to 2.5 Liters high flow and he tolerated the lower oxygen throughout the day.  Brandon and I held Will for 3 straight hours!  Will seemed to love being out of his incubator and hanging out with us.  His respiratory rate was low and his oxygen saturations stayed in the 90s which is right where he needs to be.  We are so encouraged by this and we think Will is really turning the corner.  We spoke with the doctor this morning, and he doesn't seem to think the new medication is working, so he stopped it and Will still did fine without the medication.  The doctor said that if the medication had worked, Will would've weaned way down on his oxygen to maybe a half or quarter of a liter of oxygen. 
Also today, we have hit 1004 views of Will's blog.  Brandon and I want to thank everyone for their kind thoughts, prayers and advice.  We are truly fortunate to have family and friends who are helping us through this journey.  I have to say that I would not be making it through this journey without the help of my wonderful husband.  I think that I make it seem that I am doing just fine when I write this blog, but there are times that my mind and emotions are a mess.  Brandon takes the brunt of my crazy emotions and I could not do this without him.  Will and I are truly blessed to have Brandon in our lives.  I don't know if he knows how much Will and I appreciate him. 

June 23, 2012- Turning a Corner

Today, Brandon and I went to visit Will around 11am.  When we entered his room, we found him on his back which he used to hate, and he was breathing easily with his oxygen still on 3 Liters but his percentage of oxygen was in the high 20s not the high 30s like the previous day.  We made it in time for rounds, and the doctor said that we are going to stay the course and let Will tell us when he is ready to wean his oxygen.  I asked him about letting Will out of his incubator and he said that he likes keeping babies in the incubators because it is more quiet and babies grow better in the box.  I told the doctor that Will loves coming out of his box and that he does well when he is being held.  The doctor said that as long as Will is doing well, there are no longer restrictions on us holding him.  Before we were only allowed to hold Will once per shift and now we can hold him anytime!  I was so excited!

Brandon and I held Will this morning for almost 2 hours!  Will did really well being held.  His oxygen need stayed steady with no increase in oxygen needed and he tolerated his feeds well.  It was so awesome to hold my little guy for so long.  Brandon and I really thing the new medication has helped Will.  When we talked to the nurse practitioner about the new medication, she seemed to think the medication was helping as well.  Maybe this is the change that we needed.  

Brandon and I went back to see Will this evening.  We held him again, and he did well again with us holding him.  His oxygen stayed in the 27-29% range on the 3 Liters.  This is so much better than the previous days when he has been 35-37% on 3 Liters.  I asked the nurse to make sure to only wean his oxygen by a half liter instead of weaning by an entire liter.  I think when we weaned his oxygen by an entire liter, it was too much for my little man.  I really hope that Will continues to do well with his respiratory status and that we have turned a corner on our way to better days in the NICU.

Now for our weight update... Will weighs 1800 grams!  This is just 14 grams short of 4 pounds.  I can't believe that he has hit the 1800 gram mark in 19 days especially when he started out at 1400 grams!  What a big boy!  We are so proud of him!

June 22, 2012- 34 weeks

Today Will is 34 weeks!  Originally, the doctors were hoping to keep me on bed rest until this day, but as we all know, that didn't happen.  With Will being 34 weeks, the nurses took the cover off his incubator.  He is now exposed to the light all the time, not just when he is being held.  He needs to get used to his environment and learn his nights and days.  Will seemed to having his incubator uncovered.  He was able to watch the window washers repel from the building and clean all the windows, but he didn't like the construction sounds that were coming from above.  He would jump every time the hammering would start.  

Will was still on 3 Liters today and there were times he was breathing really quickly and really hard.  The doctor wanted to start a new medication that will help with his low cortisol level.  Cortisol is a stress hormone and Will's is barely low.  The doctor wants to give him hydrocortisone, hoping it will increase his cortisol level and his breathing.  Will had his first big does this evening, and then he will have a maintenance dose 3 times per day.  If there is no improvement in his respiratory status in 2 days, the doctor will stop the medication and try to come up with a new plan.  If the medication works and Will is able to wean down on his oxygen, then he will keep the medication for about a week.  It's really hard to not see an improvement in Will's respiratory status.  I am quite frustrated with it, but I have to remember that he is growing and gaining weight and that is a good thing.  

It was also nice to be able to hold Will today.  Brandon and I were able to hold him during his 2pm feeding and we held him for almost an hour and a half.  Will did great while we held him.  His respirations were in normal range and his oxygen saturations were normal.  He seemed so comfortable and content while he slept on us.  I think he knows when we hold him and that we are his parents.  He always seems to calm down when we hold him, and it's awesome to know that we can do that for him.

Brandon called the NICU tonight, and Will gained 40 grams!  He is 3lbs 13 almost 14oz.  He is 20 grams away from 4lbs!!!!!!  At 4lbs, he can come out of his incubator and into an open crib!  Hopefully he can gain that last 20 grams tomorrow night.  Keep your fingers crossed!

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!