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!  

Grow Kinley, Grow!

Overall, we have had a pretty good week since my last update, but as always, still need your prayers.  Cooper is still doing very well and is now over 5 pounds!  He is now attempting 2 bottle feeds per day and finished all of his bottle for the first time last night!  I gave him one this afternoon and he finished all of that one as well!  The nurses are very impressed, and said that most 33-34 weekers (especially boys) normally take much longer to get the "hang" of the bottle feed.  He also got his nasal cannula taken out today, and though he had a few dips in his heart rate and oxygen saturation, is doing pretty well breathing without any support at all!  We continue to be so thankful for his amazing progress!

Our main focus this past week has been Kinley's growth.  She is gaining weight very slowly and Dr. Mandy has been a little concerned.  While most days she has gained weight, it has only been 5-10 grams and a few times she has lost or stayed the same.  One theory as to why she is struggling to gain weight is that she hates the CPAP so much.  There have been a few days where she has spent the majority of the day (and much of the night) crying and fighting the CPAP prongs.  She has even mastered how to push the prongs completely out of her nostrils!  Many of our nurses have speculated that she is burning calories fighting so much.  Dr. Mandy was hesitant to take her off of the CPAP because he didn't want her burning even more calories working too hard to breathe; but, finally yesterday he agreed to let her try to go off CPAP.  His main stipulation was that if she desaturated or had too many dips in the heart rate or needed oxygen, that she would not get to try a nasal cannula but have to go right back on CPAP. They removed her CPAP yesterday morning, and as of tonight she is still off of it.  So far, she has had some desaturations, but they do not last long.  The best news is that last night when they weighed her, she gained 70 grams!  While we are very excited about this, our doctor is remaining very cautious and is not entirely convinced being off of CPAP is best for her.  She is much happier and more calm, so we are hoping and praying very hard that she will continue to gain weight!  

Please pray for Kinley (and of course Cooper) to keep growing and for the doctors and medical staff to make the best decisions for them.  It is definitely hard to see her struggle to get bigger, especially when Cooper is doing so well, and we really, really, need her to keep gaining weight.  Thank you so much for checking in and for praying!

A Good Start To the Month

So far, September has been good to us and both babies have been doing pretty well.  Cooper is now 4 pounds 6 ounces and is starting to learn how to use the bottle!  So far, he has tried about 5 times and each time he gets better and eats more!  At just 33 weeks gestation he is starting to get the hang of the "suck, swallow, breathe" pattern, though sometimes he still forgets to breathe! :)  He is only trying 2 a day at this time and still gets the majority of his feedings through his tube.  They have told us that most of the time babies don't really start the bottle feeding process until about 34 weeks, so we are very proud of our little overachiever!  

Kinley is doing much better this week.  She is tolerating her feeds well with only 1-4 cc's of residual, which is great!  She absolutely hates the CPAP though!  Yesterday, she must of taken it off at least a dozen times and she managed to wiggle out of whatever position the nurses try and place her in.  It is always interesting when I call the night nurse to check on the babies before I go to sleep.  Last night when I called, we had a nurse who had never had the twins before.  The very first thing she said to me was, "Your daughter...she is such a fireball!", and then went on for about 5 minutes about how she was so active and refused to keep her CPAP on.  Yep...that's my girl!  She then proceeded to tell me what a "good boy" Cooper was and how sweet he was being.  All I could do was agree and laugh!  

We have our new team for the month and though we have a new resident and fellow, our old attending and friend Dr. Mandy is back, and we are excited to have him!  He is not only a great doctor, but such a sweet man and I believe he is genuinely invested in our babies.  He especially loves twins because he has twins of his own!  His main goals for Cooper this month are to eventually come off of the nasal cannula, and progress on bottle feeds.  For Kinley, we want her to grow, grow, grow!  If she grows enough, we are hoping they will take her off of CPAP soon and start her on a nasal cannula as well.  She can breathe well without it, but Dr. Mandy does not want her burning too many calories trying to breathe without much support, so I have a "talk" with Kinley everyday about how she needs to be still and quiet so she can save her energy and put on some weight!

Bianca and Cooper

A little side note, for those of you that read about our August resident (the Grey's Anatomy episode!)...she ended up doing awesome!  We came to be on a first name basis with Bianca and we ended up loving her!  She learned so much and also became invested in the twins and truly cared about their progress.  She is coming back a few times this month to cover when needed, so we hope we will see her again soon!

We feel so good about the status of our sweet babies right now, but ask for continued prayers that they will continue going and growing in the right direction.  Thank you so, so much!
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You Know You Have a Preemie When...

Cooper in his "big boy" clothes!

So this is probably true for mom's of all newborns, but especially with preemies...You know you have a preemie when the most exciting part of your day is when your baby poops!  After several days, Kinley finally pooped today (without any "help"!)  With all of the tummy issues she has been having, this was very exciting and a good sign.  Sandy was back today and she decided to give Kinley until about 3:30 this afternoon before she was going to request a suppository to help her out.  At 3:15, we went to check her diaper and we both did a happy dance!  

Her residuals have remained about the same (3-4 cc's) even though they have increased her feeds.  In the best circumstances, we would love to see 0, but we'll take it for now and hope they decrease and she continues to keep things moving!   Again, your continued prayers are so very appreciated!

We finally got around to taking up Cooper some real baby clothes yesterday and he looked so cute in his onesie!  He looks like a newborn now and just keeps packing on the weight!  I joked today that he will outgrow his preemie clothes by next week, but I think that may actually happen, and we will be thrilled if it does!  It looks like he may even be able to start trying out a bottle in another week or two.  

Overall, today was out best day of the week yet, and we hope and pray that tomorrow will be even better!

More Updates

I have come to accept that most likely, for the rest of my life, Kinley is going to stress her momma out more than either of our other 2 children!  We got some more good news yesterday, but we still have a few concerns as well.  First, her echocardiogram came back normal and overall they were very pleased with the improved function of her heart.  For this, we are very grateful!  Yesterday morning they ran some labs and her potassium was low as well as her hemoglobin and hematocrit.  They gave her some potassium through her IV and into her fluids.  She also got another blood transfusion.  We still do not know for sure if this was the cause of her lower resting heart rate, but it seems to be a little bit higher right now.  

Our other concern right now is still her tummy and feeding issues.  Overnight, she seemed to do well and did not have many residuals (left over milk in her tummy after feedings); however, she did have some after her 9:00 feed this morning.  They re-fed it, and so far she seems to be digesting it.  We really, really want her to do better with these feedings and tolerate them well so they can start to increase the amounts and she can grow!  Please say lots of prayers that her tummy will "normalize" and she can get back to regular feeds quickly.  

They decided to try Cooper off of his nasal cannula today, and while he did okay for a little bit, they decided to put him back on because he was having too many dips in his heart rate and desaturations.  The good news is that even on the cannula, he is on the lowest amount of oxygen they can give him, so he is requiring only a tiny bit of support.  

Please keep the prayers coming our way, we thank God every day for each of you!

Good News for Kinley (But Keep on Prayin'!)

First off, as always, thank you, thank you, thank you for your prayers!  Kinley did have some positive news today...the best of which being that she was extubated this morning and is now back on CPAP.  Her extubation went well, and her oxygen saturations have looked pretty good so far.  Her resting heart rate however has been running on the lower side ever since her "episode" yesterday evening.  It is not dangerously low, but is not quite normal for a baby her gestational age.  Our doctors were very honest with us and admitted that they are a little confused by this and cannot pinpoint a cause.  They consulted with cardiology who came out to look at her and they are not overly concerned.  Her EKG was normal and her circulation looks good.  She is also behaving very appropriately and got more than a little ticked off each time she was being "messed with" today, which is a positive sign.  They also did a brain ultrasound today to rule out neurology issues and, praise God, it also came back normal.    They will do an echocardiogram tomorrow to 1. follow up on her PDA ligation, and 2. check for any other signs that could explain her lower heart rate.  While we are very pleased that there are no "glaring" issues right now, we also want to be sure we are not missing anything.  Please pray that this is just a minor issue that will resolve quickly so Kinley can continue to improve and grow, and her Mommy, Daddy, and the rest of her family and friends can breathe a little easier!  

As far as her belly issues go, they stopped feeds completely last night and she is still currently on IV fluids and nutrition.  They basically started all over again with trophic feeds of breast milk today of just 3 mLs per feeding.  They are going to increase her feedings very slowly in hopes that her tummy just needs more time to adjust.  Please also pray for this concern as well.  

Cooper is having fewer dips in the heart rate and desaturations every day and is now over 4 pounds!  We are so thankful for how well he is doing and continue to pray for him to keep it up.

Hopefully tomorrow I will have great news for both babies...thank you again!

More Prayers Needed for Kinley

I will keep this update short and sweet but Kinley needs more prayers right now.  This afternoon, she had a pretty significant bradycardia and desaturation episode...enough that she had to be bagged for a few minutes, but thankfully they were able to stabilize her.  They did another x-ray of her abdomen that showed that her breathing tube and feeding tube were not in the optimal position, so they are hoping that this explains her episode.  Her abdomen was also more distended than they would like, so they are holding her feeds for now and starting IV nutrition.  We are trying very hard to stay positive, but it is hard seeing our sweet girl have to jump over so many hurdles and we are ready for her to start getting better and bigger.  Please say some extra prayers for Kinley and for our family!  

Cooper is still doing great and is behaving so our doctors can take extra special care of his sister.  Thank you so much for your prayers!

Weekend Update

Look Mom and Dad...no CPAP!

Cooper ready to eat again!

It's been a busy few days for the Murphy family.  Cooper is still doing fairly well, though he has started to have a few more As and Bs and oxygen desaturations since he went off CPAP.  Right now, they seem to be occurring either during or soon after his feedings.  It could be that he may have a little bit of reflux, or something else, so for now they are going to keep an extra close eye on him.  He is just getting bigger and bigger and now weighs 3 pounds 14 ounces!  Prayers that his As and Bs will improve and that he can stay off of CPAP.

Kinley has had an interesting few days.  On Friday morning, she decided to extubate herself (pull out her own breathing tube)!  At first, she did fine and her heart rate and oxygen saturation were acceptable, so they thought they would try to put her back on CPAP.  Unfortunately, she just wasn't ready and got very tired pretty quickly, so they had to re-intubate her.  Her airway was also a little swollen, so before they proceed with a "planned" extubation, they will give her some steroids decrease the swelling and try to help things go a little more smoothly.  

Kinley also started to have some tummy issues last night.  The nurse noticed that her belly was pretty bloated so they did an x-ray that showed a moderate amount of gas in her belly.  They said that this is common after surgery, especially after having morphine because it can slow down the digestive tract and keep things from moving along as they should.  To help with this, they decreased her feedings, and she seems to have shown a little bit of improvement.  She is now completely off of pain meds, so hopefully, they will be able to very gradually increase her feeds back up and she can get back to a normal tummy soon.  The tummy issues could prolong her extubation plans a little bit, because they will not give her steroids until all of those issues are under control.  They will re-assess her this afternoon/evening and decide on the best course of action to take from here.  We are hoping she will be back on CPAP by somewhere around Tuesday.  Please pray for these issues to resolve and for her next extubation to be planned out well and smooth!

Thank you for your continued thoughts and prayers! 

A Milestone Day

Kinley has gotten LOTS of attention lately, so today, for a change, I am going to start with Cooper.  Cooper had a very big day today!!  Early this afternoon, they took him off of CPAP, so he is breathing completely on his own with a nasal cannula for a little extra oxygen.  The only "dips" he has had in his heart rate have been during feedings...so far he has be doing an awesome job and we are so proud of him!  There is always a chance he may need to go back on CPAP for a little while, but even if he does, this is a huge step for him.  He LOVES not having the prongs in his nose and the tubes pulling on his face all of the time.  We really got a chance to see what he looks like today and I have to say, he is his father's son!  I am hoping to post pictures of him in his new "home" in the next day or two.  I got to hold him for a few minutes today and it was so wonderful to be able to cuddle closer with him!  

Cooper also got to move from his covered isolette to an open "big boy" crib today!  He gets to wear clothes now and be swaddled, which he also loves.  In addition, he graduated to "regular" preemie sized diapers...real Pampers!  It was so great to see him handle all of these changes so well and was just what we needed after such a challenging week.  Thank you for all of your prayers for Cooper, we just know he will keep this up!

Kinley is still recovering and improving since her surgery on Tuesday.  Her heart ultrasound after her procedure showed a completely closed duct with no blood flow through it.  Her heart is having to work differently to adjust to the change, so she is still getting used to that.  So far, the doctors have told us everything she has shown us since the surgery is typical and what they expect to see after a PDA ligation.  In the next day or so, she should be starting to show us some real improvement.

Initially, they had her on pain meds every 4 hours, but today changed her to every 6, and then to "as needed".  If you're like me, you may be wondering how one is to know when such a young baby needs pain meds.  Basically, they watch her heart rate and her oxygen saturation very carefully, especially when they are "messing" with her to change her diaper, reposition her, or assess her.  Usually, if she is in pain, she will desaturate, or drop her oxygen levels and her heart rate will increase.  You can also actually get a really good idea by just looking at her.  It is pretty apparent if she is resting comfortably or not.  Our nurse for the past two days, Bridgette (another favorite), has been very good about making sure Kinley gets her pain meds when she needs them.  Interestingly enough, Bridgette was Sandy's preceptor (trainer) when she moved to Texas Children's and I truly believe they are two of the best nurses in the hospital!  We love it when they don't work on the same day, because it means we get to have each of them, and they both have been a huge blessing!

Because Kinley is still on pain meds, she is still intubated with a breathing tube.  The pain medication is very sedating and can cause her to forget to breathe.  We are hopeful that tomorrow her pain levels will have decreased enough to be able to extubate her and get her back on CPAP.

Another big thing we will be watching closely is how Kinley tolerates her feeds over the next few days.  They started her back on very small amounts breast milk this afternoon, and will increase the amount over the next few days as longs as she is tolerating them.  In the meantime, she is getting IV fluids to keep her hydrated.  

Overall, it has been a very good day.  All of your prayers have made a huge impact!  Please pray for Kinley to continue to recover well and for Cooper to keep up all of his great "work".  As always, thank you!

Successful Surgery for Kinley

It has definitely been a long day for our family, but a very successful one as well.  Kinley had her PDA ligation surgery this afternoon and is doing great!  We had a wonderful cardiothoracic surgeon and he said it went as well as it could have gone.  Her duct was large (as they expected), which confirmed that they made the right decision.  They next few days could be a little rough for her as she adjusts to the new flow in her heart, but we have every reason to believe that she will continue to do great and really start growing and improving after she recovers.  They are keeping an eye on her aorta, which showed a possible slight "narrowing" on her echo this morning, but don't suspect that it should cause any major problems.  We were incredibly blessed that Sandy, our favorite primary nurse, was here today and she was a tremendous help in keeping us calm!  We talked several times today about how fortunate we are to be at one of the best hospitals and working with some of the top doctors in the country, it truly is incredible!  We are truly amazed and thankful for God's grace and goodness and we could definitely feel all of the prayers today!  

Cooper also did a great job today.  Sandy was sure he knew what was going on and was extra quiet today so they could focus on his sister.  He is continuing to grow and weighed in at 3 pounds, 9 ounces today!!!  It's very interesting how you can already see the differences in both of their personalities already.  Even new doctors, nurses, and respiratory therapists that spend 5 minutes with them comment on how laid back he is and how feisty she is!  As Brian loves to tell Kinley, "be more like your brothers and less like your mother!"  

Again, thank you so much for all of the extra prayers and support today, we love you all!

Surgery for Kinley on Tuesday

This afternoon we finally found out that Kinley's surgery is scheduled for tomorrow (Tuesday) afternoon.  She is the second surgery scheduled for our particular surgeon, so we do not have an exact time, but I will post more information as soon as we know.  I spoke with the cardiac surgeon who will be performing her procedure this afternoon, and he seemed very positive and confident about the surgery.  We will definitely be nervous tomorrow, but we have been praying for all of our doctors to make the right decisions and feel confident that this is what is best for Kinley.  To prepare for the surgery, Kinley will stop her feeds tonight and receive fluids through her IV.  She will also have another blood transfusion to make sure she has enough red blood cells for the surgery.  Please pray for Kinley, all of the doctors and surgeons, and our family as we face these next few days.

On another note, Cooper is still doing great and getting bigger everyday!  Please say prayers that he will continue to be a "good" boy!

PDA Surgery Planned

We got to speak with the doctors about Kinley's heart ultrasound she had done yesterday, and it still shows a large PDA.  Our current physician, Dr. Premkumar consulted with our previous attending, Dr. Mandy to make the decision regarding whether or not to do surgery, because Dr. Mandy will be back with us in September. (Yay!)  Both doctors agreed that she needs to have the surgery done to ligate, or close her duct, and it will be sometime next week.  We don't know a specific day yet, but are hoping it will be earlier in the week.  While we are very concerned about our little girl and know it will be a tough few days, we are hopeful that this surgery is exactly what she needs and will help her do much better afterward.

We do not have many more details at this time, but once the surgery is scheduled will learn more and I will share what we know.  In the meantime, Kinley is still stable, and both she and Cooper had a good day today. Please start praying for a successful surgery!  Thank you!

Quick Update

Thank you all so much for your prayers for Kinley, they are helping!  She did have a much better day today and seems to have stabilized some, though she did still have a few As and Bs.  There were not nearly as many as yesterday though, so we are hoping that she will have a good night tonight.  They decided to do an ultrasound of her heart today, but unfortunately, we did not get the report back in time today for them to make a decision about the surgery.  So right now, we do not know too much information.  Hopefully tomorrow morning we will know more and the doctors can make the best decision for Kinley.

I did get to hold Cooper today for a few hours and of course that helped a lot!  He had another good day and hopefully he too, will have a good night!

Please keep the prayers up, I will update as soon as I know more!

Prayers for Kinley

Since I posted this morning, we have continued to have a day full of ups and downs.  Kinley responded well to her blood transfusion and her red blood cell count is up, but she has continued to have numerous As and Bs throughout the day that have frequently required stimulation.  Unfortunately, these do not follow her normal pattern and have caught the attention of our doctors.  It is very tricky with NICU babies to pinpoint the cause of these problems because there are so many variables.  The first, is her anemia; they did treat it today and it was in many terms successful, but giving a blood transfusion also increases blood volume which can put additional stress on the heart.  They also did a chest x-ray that showed 'hazy lungs", which means she has some fluid on her lungs that is also most likely because of additional blood volume.  The second variable is her PDA.  Her heart is already having to work harder than normal, and bringing on more blood volume could have triggered her episodes today.  We do not know for sure if this is the case; it could be that the PDA itself is finally taking its toll and she is now getting tired and starting to show more symptoms.  The third most common possibility is infection.  They did a CBC earlier today, and given the results, do not feel that infection is very likely right now and are holding off on a sepsis work up for now.

So where does that leave us?  At this point, our attending feels that most likely all of her issues today are more than likely from her PDA.  They are going to watch her very closely tonight and then tomorrow during rounds will start strongly discussing whether surgery to close her duct is necessary at this point.  I have very mixed emotions about this.  Part of me wants to hope that this is her problem and just get the surgery over with believing that it will do its job and take care of the majority of her issues. The other part of me knows that any surgery, especially heart surgery carries its own set of risks and really wants her to get better on her own.  Sandy and I talked a lot today and luckily, she has seen many babies get this surgery and do just fine.  Most of the time, they thrive afterward.  One bit of encouraging information was that they actually did PDA surgery today on a baby down the hall, who was only one week old and was born at 24 weeks, and so far, he is doing great.  Of course, when I talked to our attending today, he had to tell me that with all surgeries, especially heart surgeries, they have to weigh the benefits and the risks.  I keep having to remind myself that he definitely tends to stay on the conservative side and has to tell me these things.  Again, for the most part, both babies have had a relatively smooth stay so far, and it is very hard when we experience these bumps.  

Please, please pray for Kinley as well as our doctors to make the best decisions when it comes to her care.  Please also pray for Cooper to continue to do so well!  Brian and I (as well as the rest of our family) would also appreciate prayers for strength and peace.  We will keep you updated!

Phones That Go "Ring" in the Night

Nobody ever wants to receive a 2:00am phone call about their kids, but I always assumed I would have until at least the teen years to look forward to such things.  So, you can imagine my panic when the phone rang last night at 1:30 in the morning and I saw on my phone that it was Texas Children's.  It was our resident calling to tell me that Kinley had had a major A and B episode that lasted quite longer than her normal ones and that they wanted to go ahead and do a blood transfusion.  Luckily, we had talked about this during rounds on Monday and Tuesday, so we had prepared ourselves for this possibility and knew most of the details about the procedure.  Here is how our week has unfolded so far: 

On Monday, Kinley had some labs run that showed that she was anemic.  This is very common in preemies.  The good news was that her body was trying to make up for it by producing more red blood cells, so the doctor wanted to give her a chance to make more on her own.  On Tuesday during rounds, they noted that she had not gained any weight so they decided if on Wednesday (today) she was still not gaining as much weight as they liked, then they would do a blood transfusion at that time.  But of course, Kinley had other plans and told us that she needed one sooner.  After they called us, they gave her some blood early in the morning from about 3:00am to 5:00am and so far she is doing well.  Her color has already improved and she looks more pink.  She also has not had any major A and B episodes. 

At this time, they are checking her hemoglobin and hematocrit to see if she will need more blood.  They are also giving her a diuretic to help her get rid of some of the extra fluid she now has from the extra blood volume.   More than likely, her body was just working too hard to keep up with everything and hopefully the red blood cells will allow her to rest a little bit.  We are praying that she will have a much easier time after today. 

Cooper is still doing great and continuing to get bigger.  He is still eating well and pretty content most of the time.  He had another Occupational Therapy assessment and the therapist said he looked awesome!  We are so happy that we do not have anything more to report on him and pray that he will stay on this path!

No News is Good News

Our favorite nurse, Sandy!

I apologize for not posting much this week, but in the NICU world, no news is good news, and luckily, we have not had much new news to report. 

Both Cooper and Kinley are doing well.  Kinley has been steadily increasing her feeds this week and has done well.  Tuesday, she gave us a little bit of a scare because she kept spitting up her food back into her feeding tube, but on Wednesday she had her favorite nurse (Sandy) back and has done much better since then.   It truly amazes me that both babies do so much better when Sandy is our nurse.  She knows them so well now, and knows just what they need when they start "misbehaving".  Even our doctors commented on it and we all wish we could have her every day!

Tonight, Kinley will get her PICC line taken out and will be strictly on breast milk.  She has done a great job gaining weight this week and last night weighed 2 pounds, 6 ounces.  Kinley and I did some Kangaroo time today and she loved it!  Her stats looked awesome the whole time she was on my chest and she usually sleeps really well after snuggling with Mommy!  On Monday, they will run several labs on her to check things like electrolytes and hemoglobin. Until then, we are hoping she will continue to tolerate her feeds well and praying for a quiet weekend.

Cooper is doing great!  He is maintaing his feedings and is just focusing on getting bigger!  Today, he weighed 2 pounds, 14 ounces and they are very pleased with his progress!  It won't be long before we have a 3 pound baby!  For the most part, Copper is a laid back little boy like his older brother, but he does not like all of the tubes or the CPAP prongs in his nose.  He has been known to pull out his feeding tube on multiple occasions, and has to have his hands held down when the nurses and respiratory therapists are working on his CPAP.  Cooper also got to do some Kangaroo time with me this week and loved it as well!  Feeling their tiny hands and feet against my neck and chest has quickly become one of my favorite things!  

As always, thank you for your unceasing prayers.  I know I say it every time, but we are so blessed and thankful for all of you!

Learning to Love Mondays

So there are not many people who truly look forward to Monday mornings, but over the past few weeks I have found myself feeling quite relieved when Monday morning rolls around.  First of all, Kinley and Cooper's birthday was on a Monday, so every Monday marks another week, which means today they are 2 weeks old!  Second, the Medical Center and the hospital are a little too still and quiet for me during the weekend, and while I don't love the traffic, I much prefer the hustle and bustle that Monday mornings and other weekdays bring with them!

As for the twins:

Kinley is in the process of increasing her feeds and trying to catch up with her brother.  She is up to 100 mLs per day (Cooper is at 150), and other than a little spit up is tolerating them well.  She continues to have a few As and Bs each day but they resolve quickly and on their own most of the time.  She is still on CPAP and is doing well at 21 percent oxygen, which is right where we want her!  As long as she stays the same and continues to tolerate her feeds, she will probably not have another ultrasound of her heart for another week or two.  

Cooper is also doing well and now is just maintaining his amount of feeds at 150 mLs per day.  I got to hold him for the first time on Saturday while Brian got to hold Kinley for the first time.  I held him again this afternoon and he did great both times!  He will also remain on his CPAP at 21% oxygen for another few weeks until his lungs mature a little bit more.  He also has had a few As and Bs but they have also mostly taken care of themselves and his heart rate comes back up pretty quickly.  

As I hope you can tell, all of your prayers are working so please keep them up!  Brian occasionally has to remind me that this is a marathon and not a sprint, but so far Kinley and Cooper (and most of the time me and Brian) seem to be keeping pace.  

New Month, New Team

With this post, I plan to update you on the babies, and then, if you care to read on, share a little bit of the in's and out's of the everyday drama in the NICU with the NICU medical team.  It gives me just a little bit else to talk about!

Update First

First, an update on each of the babies!  Cooper continues to do well.  He is continuing to slowly increase his feeds and seems to be tolerating them well.  He is trying to catch back up to his birth weight and weighed in last night at 2 pounds, 6.8 ounces.  They actually considered trying to take him off of CPAP today, but decided he wasn't quite ready and will give him a little more time.  Other than that, we have no real changes, which is great!

Kinley got her 4th and 5th doses of indomethacin that we were hoping would treat her PDA and close her duct.  Unfortunately, her echo yesterday showed that her duct is still open.  Her doctors have decided that for now, they will keep a close eye on her and repeat ultrasounds every week or so to see if it may close on its own.  Our doctor really doesn't want to jump to surgery, and as long as it doesn't seem to be placing her body under too much stress, they will wait.  So far, she is handling it well, so we are praying that she can hang in there and it will close on its own.  Kinley finally got to start true trophic (beginning) feeds yesterday and she is also tolerating those well.  Kinley had surpassed her birthweight and is now 1 pound, 13.6 ounces.

Both babies have had a few A's and B's, but they have been minimal and are not anything too unusual.

"Goodbye" and "Hello"

On the first of each month, the Texas Children's NICU rotates teams.  This means that on Tuesday we had to say "goodbye" to our initial team of doctors: Dr. Mandy, Dr. Lohmann, and Dr. Lui, who had been with us since the moments Cooper and Kinley were born.  I know we were only "with them" for 9 days, but it certainly seemed much longer and we had definitely developed a positive relationship with all of them, especially our attending Dr. Mandy.  

We were however, happy to meet our new team that we will be with for the month of August.  Our main team consists of an attending neonatologist (Dr. Premkumar), a neonatology fellow (Dr. Umbriaco), and a pediatric resident (who for now, shall remain nameless).  We also work with respiratory therapists, physical therapists, occupational therapists, nurse practitioners and pharmacists.  


For those of you who care and may be interested in this sort of thing like I am...

Texas Children's is a teaching hospital associated with Baylor College of Medicine and the structure is as follows:

An attending is a full-blown, completed-all-schooling-needed, neonatologist.  They are the ones who are really "in charge" and make final decisions on the babies medical care.  They are also the teachers and professors of the fellows and residents.

A fellow is a doctor, who has completed medical school and a residency in a certain branch of medicine who has then decided to sub-specialize even further.  For example, an internal medicine doctor may choose to specialize in cardiology.  Or, in this case, a person who has completed a residency in pediatrics chooses to then specialize in neonatology.

A resident, is student who has finished medical school, and is now completing training for their specific branch of medicine, in our case, pediatrics.  They will complete multiple rotations in many different areas of pediatrics such as private practice, oncology, emergency medicine, PICU, NICU etc.

Am I in a Grey's Anatomy Episode?

Because this is a teaching hospital, the resident always starts the rounds by providing a medical history, latest lab results, and any new information since the previous day.  He/she will then make recommendations that the fellow and attending neonatologist will either agree or disagree with.  If you watch Grey's Anatomy, then you have a pretty good idea what I'm talking about...it can be very dramatic.  

Let me just say that the first "round" with our new team and new resident was very dramatic, and I hate to say it, but a little entertaining to watch.  (Like I said, Grey's Anatomy in real life!)  It was the poor resident's first day on her NICU rotation and it was very evident that she was very nervous!  I must tell you, my heart hurt for the poor girl, and even Nurse Sandy admitted that there were multiple times she wanted to jump in and save her.  By no means at all am I claiming to have more knowledge than a medical doctor, but there were points in the conversation, that I think even I would have been better able to answer some of the questions the attending was asking. It didn't help that she was stumbling over her words and unsure about Cooper and Kinley's numbers on their labs and such.  As the nurse, Rachel, Brian, and I were dissecting the whole conversation after they finished, Sandy did say that we would be amazed at her progress over the month, so I am looking forward to watching her "grow" as well!  I can only imagine how much pressure these residents are under, but thank God there are people like her willing to go through what must seem like hell, because that's how we get great doctors! I'm sure she will become a better doctor because of her experiences and we will be silently cheering her on.  

As Always...

I know I get repetitive, but I will never stop thanking you for your prayers and asking you to continue them.  Thank you, thank you, thank you!