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!