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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