6 Month Update

I know it has been quite a while (okay, 3 months!) since I last posted, but I figured I would give an update on how our family of 5 is doing!

The Murphy's have had a very busy few months.  Kinley finally got to come home mid-November.  It was very exciting to have everyone home, but also a little nerve wracking for Mom and Dad.  Kinley came home on a feeding tube since she wasn't quite finishing all of her feeds by mouth, but once we got home she became a pro and we were able to take it out a few weeks later.  Both babies are now doing great and continuing to grow, grow, grow!  Cooper is now over 15 pounds and Kinley is over 12 1/2 pounds.  Both are actually on the weight chart for their real age (instead of their adjusted age which is 3 months), though they are understandably at the lower percentiles, especially Kinley!  Interestingly enough, both are measuring "short" for their age (I know, who'd have thought?), but our pediatrician explained that they still have a lot of catching up to do and thinks that they will indeed catch up.  

We've been to lots of doctor visits since they both came home.  Kinley still has a paralyzed vocal cord and is being followed by an ENT.  Next week she will have a swallow study done to make sure she is not aspirating anything when she eats.  She seems to be feeding fine, and doesn't choke or gasp, but the doctor explained that she could be aspirating tiny amounts and we wouldn't know it.  Over time, this could lead to significant long term lung damage, so we definitely want to get it checked out.  In June, they will scope her again to see if her left vocal cord has recovered any.  Unfortunately, there is not a lot of published data on infants with vocal cord paralysis due to PDA ligations, so we really don't know what the chances are that it will recover.  If it doesn't, we just hope that her right vocal cord will be able to compensate.  She does make some sounds, but they are pretty raspy and quiet.  She did say that most kids are able to talk just fine, though they are very quiet.  

Kinley is also being followed by a dermatologist because she has multiple hemangiomas on her skin.  Full term babies can have hemangiomas too, but infants who are premature, female, a multiple, or white are at even higher risk.  Since Kinley can check off all 4 of these it makes sense that she has lots of them!  Most are tiny and no larger than a freckle, but she has several that are a little larger.  Fortunately at this point they are only a cosmetic issue.  The dermatologist assures me that they will "go down" and fade, and most should disappear completely within a few years.  The larger ones may leave a pink spot or some loose skin, but this is something that can be fixed with laser treatments later on.  Cooper has a few as well, but all of his are pretty small.  
We will check in with the dermatologist every few months just so she can keep an eye on them.

Cooper has also had a few visits to the doctor because at his 3 month check-up the doctor discovered he had an inguinal hernia.  The surgeon wanted him to grow a little more so the surgery would be safer, but he is now scheduled to have the surgery to correct it on February 11.  

Other than those few issues, both babies are doing great!  Everyone asks if we are getting much sleep and the answer is: more than when they first came home, but still not much.  They are both still eating about every 3 1/2 hours around the clock, though we are starting to stretch it out to 4 hours a time or two at night.  Cooper could eat more and go longer in between feedings, but Kinley's tummy is still pretty small and she has fairly significant reflux so we can't increase her volume too much.  So while I could stretch Cooper out, it is much easier to keep them on the same schedule.  Yes, I will be very happy in a few months when we will hopefully be getting more than 2 1/2 hours of sleep at a time, but we are just so thrilled at the progress and growth the babies are making and it's worth it to see them so big and healthy.

Both babies are also doing well developmentally and are on track for their adjusted age, and in some cases even ahead.  Both are rolling over from their tummy to their back, and Cooper has almost mastered going from his back to his tummy.  They are finally starting to tolerate fairly long periods staying propped on their elbows during tummy time, and both are now working on sitting.  Cooper is very vocal and coos and laughs all the time.  Kinley tries so hard to make coos and babbles, but with her vocal cord it's hard to hear! She also laughs and it is so funny because most of the time it's silent, though occasionally we get to hear it!

Overall, we are very pleased and happy with how both Cooper and Kinley are doing.  Though we still have a few challenges to face, they are minor in the grand scheme of things!  To those of you who have continued to reach out to us and pray for us- as always- thank you!

Happy "Due Date" Day and 3 Month Birthday to Cooper and Kinley!

It's hard to believe our sweet babies were born 3 months ago yesterday, exactly 3 months early from their official due date.  In some ways, the time has gone by very quickly, but in other ways, it has been a long road!  I know it has been a few weeks since I have posted, so here are the latest updates on both babies as well as a few pictures!

Cooper:

Cooper has now been home for 2 weeks and is doing great!  Overall, he is a very laid back and happy baby and eating and sleeping like most newborns do. Sometimes, I have to remind myself that he really is a "newborn" and not a 3 month old!  We are still feeding him every 3 hours around the clock, but hopefully soon we can stretch it out to every 4 hours...at least at nighttime for a few feedings!  Last Thursday, he weighed 7 pounds 13 ounces.  We go back to the pediatrician for a weight check tomorrow, and I am guessing he will be well over 8 pounds!  He is a great snuggler and one of his favorite places to be  is laying on his mommy or daddy's chest.  

It has definitely been challenging figuring out a new schedule and routine that allows us to spend time down at the hospital with Kinley.  Since the hospital has private rooms, Cooper is able to go with me when I go to visit his sister.  We do not go everyday, but try to go 2-3 days during the workweek, and then on Saturdays and Sundays as well.  So far, he does well in the car and is happy to hang out for a few hours at the hospital.  

Caleb was very exited when we brought Cooper home.  He is still going to "school" during the week which has been very good for both of us!  As soon as he gets home, he runs in the house with his palms up saying "baby?", looking for Cooper.  If Cooper and I are still at the hospital, he gets a little upset and sad!  One of my favorite moments was this one that happened last week:

I was getting ready to take Caleb to school and was making sure we had everything together.  I told Caleb to go get his "night night", which is what he calls blanket.  He ran into his room and came back with his blanket.  I grabbed Cooper, who was already loaded in the carseat and started to corral Caleb to the garage.  Caleb stopped and looked up at me and said, "Night night!", I told him, "Sweetie, you have your night night."  Again, he said more forcefully, "Night night!".  I was starting to get confused, when he then ran into the nursery, grabbed one of Cooper's blankets, brought it back to me, and reached up to put it in Cooper's car seat, saying again with a satisfaction and a smile, "Night night"!  Our sweet boy just wanted his brother to have his blanket too!  

We are very happy with how well Caleb has adjusted to having a brother and how sweet he is to Cooper!

Here are a few pictures of Cooper:

Caleb loves his brother!

Brian, Cooper, and our friend Dr. Mandy!

If you've been reading this blog for a while, you've read about some of our favorite nurses.  These wonderful ladies have become some of my favorite people and we are so grateful for them taking such wonderful care of our babies.  Here are some pics of some of the best nurses I know! 

Edelweiss, Yolanda, Sandy, and Bridget

Edelweiss, Sandy, Bridget, and a mad Cooper!

Sandy spending some quality time with Cooper before he heads home.

Tina- Our favorite night nurse who saved Cooper's life! We love her!

Kinley:

It has been very difficult not seeing Kinley every day, but I do feel better knowing that our fabulous nurses are taking good care of her when I can't be there.  Kinley is making slow but steady progress.  A few weeks ago, the ENT team came to consult with our team and did a scope of her throat and airway and discovered that her left vocal cord is paralyzed.  This is a common complication from her PDA ligation surgery.  The vocal cord nerve runs right next to where they ligated the duct in her heart.  Most of the time, it will "resolve" on its own, but it can take up to 12 weeks.  They will check her again in a few weeks to see how it looks.  Unfortunately, this affects her ability to swallow, and therefore bottle feed.  She is still attempting a few bottle feeds a day, but it will definitely take a little bit longer for her to master.  Her feeding ability is the medical team's main concern right now.  In addition to the vocal cord paralysis, her immature lungs are also hindering her feeding skills.  She is able to eat, but gets tired very quickly.  Right now, the plan is to give her a little bit longer to grow and get stronger.  If she still doesn't show improvement in a few weeks, we will discuss other options.  This could mean bringing her home on a feeding tube.  We are praying that she will start showing some more progress soon! 

Kinley is also still on a nasal cannula with a very tiny amount of oxygen.  This week, or early next week, we may try to take it off for a while to see how she does on room air.  Overall, she looks pretty good, but we are ready for her to get even better so she can join the rest of her family at home!  Lately, we have noticed that she seems more comfortable and calm, and though she is still a little feisty, we don't see her "attitude" as much.  Here are a few recent pictures of Kinley:

Posing for the camera!

Big smile!

Hangin' out in her Boppy.

Kinley and Megan, our sweet resident from September!

I apologize for the long post, but wanted to catch everyone up!  As always, thank you for your continued prayers, please keep them coming!

Cooper's Coming Home

I apologize for not posting sooner, but we've been very busy getting everything ready for Cooper to come home!  After 77 days in the NICU, Cooper is scheduled to come home tomorrow (Tuesday).  They took him off of his caffeine last Monday and he has done great.  He is taking all of his bottles very well, and most of the time wants more after he's finished.  We are very excited to have him home, but we also have some mixed emotions as it will be hard to leave Kinley "by herself"and figure out how to split our time.  Cooper will be able to go up to the hospital with me, but obviously, we won't be able to make daily trips.  Unfortunately, we will be unable to have very many visitors for a while.  The doctors have been very clear that for a while, we need to limit his contact with too many people, especially since he has already gotten so sick and we are now in cold and flu season.  While we are eager to show him off and see our friends, we do not want a repeat of what happened a few weeks ago!  It is very surreal to think about him coming home.  We have definitely settled into a routine, and we are a little nervous about how we will function without our wonderful NICU nurses and doctors.  We know it will all be ok, but are still a little anxious as we get ready to make this transition.

Kinley is still doing well, though we still don't know when she will get to come home.  She is now 4 pounds, 12 ounces.  She still doesn't love to bottle feed, and is a bit inconsistent...sometimes she will take almost the whole bottle, sometimes half, and sometimes just a few swallows.  She also still has stridor, a "singing sound" that she sometimes makes when she breathes.  Our doctor for this month, Dr. Moise, is soon going to consult with an ENT to see if she may have some kind of throat or airway issues going on.  She has also been retaining quite a bit of fluid lately, which we've been told is common in preemies, especially those with chronic lung problems. To help with this, they now have her on a daily dose of Lasix, a diuretic.  We are hopeful that she will soon "turn a corner" and really start to take off.

As always, thank you for all of your prayers and positive thoughts.  Please continue to keep us in your prayers as we bring Cooper home and adjust to our new schedule as well as for Kinley to continue getting bigger and healthier so she can join us soon!

Cautious Optimism

I am happy to report today that Cooper is doing much better!  It has probably been one of the longest weeks since this all began; but, praise God, Cooper seems to be recovering.  Tonight, he is off of CPAP and back in an open crib.  He is also back on bottle feeds and is eating like he has been starving!  We still have no idea what caused him to get so sick to begin with.  On Wednesday evening, the Infectious Disease team came to see him and recommended an LP (lumbar puncture, or spinal tap) because they suspected some type of meningitis, though they didn't know whether it was bacterial or viral.  Because his platelets were so low, there was a large risk of bleeding from the procedure, so they gave him a transfusion of platelets first.  They attempted the LP late Wednesday night, but were unsuccessful and unable to get any spinal fluid.  During rounds on Thursday morning, Dr. Mandy decided he would try and was able to get it the first time!  There was no bacteria that grew from those cultures, and they ran several viral studies, but so far they have not gotten any positive results.  We will probably never know what caused his illness, but right now are just trying to focus on the fact that he is getting better.  

Kinley is also still doing well.  Wednesday afternoon and evening, after they put her back on CPAP, she started spitting/throwing up a good amount of her feedings.  She also cried a good part of the day, so because of the pressure from the CPAP and taking in lots of air from crying, her belly filled with gas and got huge!  The on-call doctor Wednesday night made the decision to take her off of CPAP for at least the night to let her belly "deflate".  All of the spitting up can be dangerous because of the possibility of aspirating the fluid.  The next morning, Dr. Mandy agreed that it was best to keep her off of CPAP.  When he was filling us in on his plan he began by saying (in his thick Hungarian accent), "I have some serious concerns about Kinley...I have a feeling she will do whatever she has to do to get her way for the rest of her life."  Of course, we already knew that, but were glad he finally recognized that too!  They will continue to monitor her carbon dioxide and bicarbonate levels, but hopefully she will continue to do well without the CPAP.  We are also thankful that Kinley has still not shown any signs of contracting whatever Cooper had (knock, knock, knock), but I will rest a little bit easier at the end of the week.  

Unfortunately, we have not gotten to spend too much time with the babies the past few days because Thursday evening, Caleb (our 21 month old) started running a fever.  It was down by Friday night, and he really didn't show any other symptoms, but I spent Friday at home with him, and though Brian and I went up to see the babies today, we stayed far away from their cribs...we don't want to risk taking any more germs into that room!  

I have to say that we have made some great nurse friends who have been absolutely wonderful this week!  Sandy only worked Monday and Tuesday, and then was off until today, which made it an extra-long week!  But...through Sandy we have met some other wonderful nurses that have grown to truly care about us and Kinley and Cooper.  One of them even kept checking on the babies Friday and kept me updated via text throughout the day!  Sandy also kept in touch through text and making sure her friends were keeping her updated!  We will forever be grateful to these wonderful women!  In addition, Dr. Mandy has been extra-wonderful this week.  He was determined to try his best to get to the bottom of Cooper's illness and willing to jump through whatever hoops he had to.  On Wednesday, I had a bit of an emotional moment during rounds, and he just stopped talking and came over to give me a huge hug!!  On Friday, instead of having the resident call to update me (which is the norm), he called me himself to fill me in and told me multiple times that he missed me and was very sad that I was not there.  He is such a caring man and we can tell he is emotionally invested in our babies and we are incredibly thankful for all he had done for both of them!  

So for now, we remain cautiously optimistic about the progress of both babies. Thank you for all for the continued prayers and positive thoughts!  

Prayers Still Needed for Cooper

The past few days have been quite long and stressful, and unfortunately at this time we do not have any real answers on Cooper.  All of his bacterial cultures and viral screens have come back negative, which is very frustrating for the doctors.  His white blood cell count has increased and is almost back to normal, but his platelets have continued to decrease.  His skin is also red and puffy, and seems sensitive.  He is still on CPAP and his As and Bs have gotten better, but he is still having them.  He has seemed more active and responsive today, and has cried a lot more, which is a good sign.  They also performed a heart echo, chest/belly x-ray, and head ultrasound that all came back normal.  Our doctor is very frustrated that they cannot figure out what is going on and today decided to get a consult from the Infectious Disease team to see if they can provide any suggestions or come up with any other ideas.  if they don't have any recommendations, he will consult with the hematology team.  We are very concerned for Cooper and are just ready for him to get better.  It is very hard to see our sweet boy, who was so healthy a few days ago, so sick now.  Please pray for him to get better and for the wonderful doctors at this hospital to figure out the best way to help him.

As far as Kinley goes...Dr. Mandy made the decision to put her back on CPAP.  Her carbon dioxide and bicarbonate levels were still elevated today, and he thinks that in the long run, this will be best for her.  Right now he is saying that we will try this for 2 weeks, then check and see how her levels are.  We are comfortable with his decision and hopeful that this will help her lungs grow a little more.  Obviously, Kinley was very unhappy and angry when they put her back on it this morning and when she is not sleeping she remains pretty feisty, but overall she is doing well.  

Thank you so much for all of your continued prayers and support, it truly means the world to us!

How Quickly Things Can Change...

We have been told from the very beginning that our NICU journey would be a roller coaster ride full of ups and downs.  Fortunately, we have not had too many dips and we were thinking both babies, especially Cooper, were closer and closer to being able to come home.  Last week, Dr. Mandy even told us the tentative plan for Cooper would be to come home this Friday.  Even though she is doing much better, we have always known Kinley would be here a little longer, but we were really just waiting for her to grow.  After last night and today, it looks like both babies will be here a little longer than we thought.

Last night, at about 9:30, Brian called our night nurse, Tina to check on the babies.  If you've read my earliest blogs, you may remember me talking about how Tina is our favorite night nurse.  As soon as she answered, Brian could tell she was not her normal cheerful self.  She told us that when she came onto her shift at 7:00, she could immediately tell Cooper was not himself.  He had not finished his bottle at 6:00 (which is not like him), and was very lethargic, unresponsive, and pale.  She ended up having to re-insert his feeding tube, which had been removed earlier that morning because he had been doing so well on the bottles.  Over the next hour to hour and a half, he got progressively worse and started having many more A's and B's than normal.  He was also unable to regulate his own temperature.  At this age, babies don't really get fevers, but instead their temperature goes down.  His temperature was 96.8 when she checked, and then even after a double swaddle and extra blanket, only went to 96.9, so they moved him back from an open crib to the isolette.  She called the resident to come look and pushed to do a blood work-up, which they did.  His CBC showed a very low white blood cell count and anemia.  They gave him a blood transfusion at about 1:00 in the morning.  They also are growing blood and urine cultures to check for a bacterial infection as well as screening for some viral infections.  At about 7:30 this morning, they had to put him back on CPAP because he was having so many A's and B's and struggling to breathe.  At this point, we know he has something that is making him sick, we just don't know if it is bacterial or viral.  They started him on antibiotics as a precaution, which he will stay on at least until we have an idea of what is making him sick.  If it is viral (which is my main suspicion, then they just have to give him breathing support and let it run its course.  Of course, our other main concern with viruses is that they are contagious and we really don't want Kinley to catch anything because we suspect she would not be able to tolerate it as well as Cooper.  

Right now, Cooper is stable, but it is very apparent that he is not feeling well.  Hopefully, after a few days of rest he will be feeling better.  We are hoping that he remains stable on CPAP and does not have to be intubated.  We are incredibly grateful that Tina was here and knew him well enough to know something was wrong, and pushed hard for the doctor's to take his condition seriously.

Kinley is still growing, but Dr. Mandy also expressed some concerns about her today as well.  They were already scheduled to run some labs on her this morning, and when they did they showed that she was also anemic, so she got a blood transfusion today as well.  He also was concerned that her carbon dioxide levels in her blood were on the high side.  He is worried that we took her off of CPAP too soon and because of that, her lungs did not grow enough.  Basically, the positive pressure from the CPAP machine helps to open her lungs and increase the lung capacity.  So...even though she is doing ok, he is considering putting her back on CPAP so her lungs can grow more.  At this point, I have very mixed emotions about this because I know she hates the CPAP and she won't be able to bottle feed while on it, and she will probably have to stay on it 3-4 weeks.  On the other hand, I want them to do whatever is best for her in the long run.  It is very apparent that Dr. Mandy is conflicted as well and is not taking this decision lightly.  Right now, we are just praying that Dr. Mandy makes the "right" decision, whatever that may be.

Overall, it has been quite a long night and day for us and we are still amazed at how quickly things have changed.  Please pray for Cooper to get well, for Kinley to stay well, and for the team to make the best decision regarding Kinley's plan.  Thank you!

Good Progress, Pics, and Caleb meets the twins!

Kinley Marie

It is so hard to believe that the babies turned 8 weeks old yesterday and 35 weeks gestation today.  I am thrilled to report they are both making great progress.  I know I haven't posted any pics of Kinley, so here are a few I want to share.  These first few are of the first time we got to dress her.  I was not expecting it that day, thus I was unprepared, thus she had to wear a hospital t-shirt...but at least I had the bow!

Kinley has finally started gaining good amounts of weight daily.  As of tonight, she is 3 pounds, 9 ounces.  She also got to start attempting bottle feeds, and though she did get very tired and fell asleep both times, she showed us that she is capable.  We know over the next few days she will start to get the hang of it!  She is still having  As and Bs, but the doctor is letting her "outgrow" her caffeine that she has been on since birth, so hopefully her body will adjust and she can outgrow the As and Bs as well.  She also gets to move to a big girl crib tomorrow.  She is still feisty, but has seemed to calm down a lot since going off CPAP and getting to be swaddled.  We think the swaddling really helps her stay still and grow, because before she was literally all over the isolette.  One particular day, Sandy (who if you don't know by now is our favorite nurse) got her situated first thing in the morning (in the center of her mattress), and not even 10 minutes later, found her like this, perfectly content and asleep.

A little later that day, Rachel and I came back from lunch and found her like this...again as happy as a clam and saturating at 100% oxygen.

Now, we all know babies at this age should not be able to move around this way, and we haven't quite figured out how she does it, but she does it.  This is where the swaddling discussion started, and since, it has helped keep her still and in place, hopefully helping her conserve calories so she can grow!  Yes, I know, Kinley will be the one giving me a run for my money!

Cooper is also continuing to do very well.  He now weighs 5 pounds 10 ounces (which is way bigger than Caleb was when he came home).  He is still working on mastering the bottle feeds, though he gets better and better every day.  It is even possible that he could be home in a week or two!  He almost looks like a term newborn, and he definitely has the cry of one!  He is very dramatic about getting his assessments, temperature checked, and diapers changed!  But most other times he is pretty laid back!  Here are some recent pictures of him!

One of the best things that happened this past weekend was that Caleb got to finally meet his brother and sister.  He did very well and seemed to be interested in looking at them and figuring out who or what they were!  Here are a few pics from that special time.  We know it will take some adjustment once we all get home, but so far Caleb seems to be happy to see Cooper and Kinley!

As always, we appreciate your prayers as we still have some milestones to meet before we can all come home as a family.  We are so happy with Kinley's progress, but definitely want her to continue to grow so she can catch up and come home not too long after her brother.  We thank you for all of your prayers so far, we can feel them and they are working!