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!