Saturday, June 30, 2012

6/30 evening update

This afternoon/evening has been difficult for Kennedy. Her blood gasses have consistently diminished in regards to her CO2 levels. They have been raising her oxygen and increasing all of her settings on the ventilator throughout the day. The X-ray they just ordered shows that her tube may need to go in another centimeter. This may be what's inhibiting her from receiving the air she needs.  The team to do that is on their way now. At this point we are usual.   Drake on the other hand has been having a nice relaxed day. I think that is his way of looking after his sister so the doctors can get her all fixed up. He is one minute older than her so he feels like he is the older brother taking care of sissy. Tomorrow brings another echo cardiogram for Drake's heart to see if the second round of indocin worked.  If it is not working, we will have to begin thinking about surgical closure. Please pray for Drake and Kennedy both tonight...specifically for Kennedy to get her respiratory gasses in balance and for Drakes PDA valve results to come back favorable.

One Week Old Today!

Started today with good news! We thought we were going to have to anxiously await the brain scans this morning, but the doctors met me when I walked in the nursery this morning. He said Drake did not have any brain bleed at all, and Kennedy had a level one out of four which is so insignificant it will not matter. This is such exciting news because it is something that was causing us a great deal of worry.  Kennedy is currently receiving her second blood transfusion. Kennedy's CO2 levels were high on her morning test. The goal today is to figure out why and to resolve the issue. Drake is receiving his last dose of indocin (for his PDA in his little heart) and will begin back on mommy's milk this evening. He is scheduled for another echo-cardiogram tomorrow to see if the medicine worked to close the valve. 

Friday, June 29, 2012

Drakes tough day

Today was hard day for little Drake. Seeing your child endure so many needles in one day is one of the toughest things to stomach.

He started his morning off getting an IV put in for his blood transfusion. When that was done they pulled it out and the doctor came in and did his Arterial line in the same wrist. At that time, they then pulled out his umbilical line since it has been in for six days. A couple hours later they did the echo cardio gram and saw that his PDA valve in the heart was still of significant size to warrant another round of Indocin. What that meant is another IV and no more food! Since he has the PIC line in his right arm and the arterial line in his left arm, this meant they had to go through his ankle...the first two attempts, one in the right and one in the left, did not take so they ended up having to find a vein in the top of his foot. Yes, I had to walk out of the room and take a break because I truly was feeling the pain for him. He has been stable and resting, with a little help of some pain medicine (fentanyl).

Kennedy learned a lesson from her brother yesterday on how to rest and take it easy. She has had increased oxygen help, but has had a good day following all her heart rate drops from yesterday and last night. She is still eating every 3 hours.

Tomorrow is a BIG day. This is when they are going to do the brain scans. Basically they are going to do a sonogram on their brains to look for bleeding from fragile blood vessels in the brain. The hemorrhages are graded from 1 to 4 according to the severity of the bleeding. Small amounts of bleeding (grades 1 to 2) do not usually cause any long-term damage. Larger amounts of bleeding (grades 3 to 4) cause long-term problems.

Below is one of my favorite pics. He was gripping my finger with all of his might. I'm here for you little buddy!!!!

6/29 Day 6

Last night was pretty event-less but a few things of concern. Drake did rest through the night...unfortunately, his blood count was right on the threshold of low so he is receiving another blood transfusion right now. After running a gas report it came back that his CO2 levels were pretty high so they had to increase his ventilator settings.  Doctor says his blood pressure is indicating a significant possibility the PDA valve in the heart is not closing. He wants to monitor today and do another echo to determine if another round of indocin is necessary. Our goal today: Wean him down on ventilator settings. Keep his mean blood pressure up. May do the PAL (peripheral arterial line) insertion after 10:00am.   Kennedy had a few more heart rate episodes but they decided to put her onto her stomach...she looked so happy when they did that. She didn't have another drop until they put her back on her side; unfortunately they had to because her chest X-ray still showed some cloudiness in the lungs and they need her on her side to free up less restriction to air movement.  Her PAL line is beginning to leak around the dressing and the doctor may want to do another procedure to move it to the other leg.  It is another scary moment because we only have one more shot at it if he wants to move it. Our goal today: get her PAL situated, wean her down on oxygen from where they raised it last night due to her heart rate issues. On a brighter note, Kennedy and Drake are both receiving milk every 3 hours as opposed to every 6 like before.

Thursday, June 28, 2012

6/28 afternoon update

Today has gone ok.

Kennedy received her Peripheral Artery Line...they could not get it into her wrist so they had to go into her ankle. Like I mentioned before, this line is better than continuous heel pricks for blood; which is what they would have to do daily without the PAL line. She is on some pain meds to help her as it seems the new line is quite bothersome to her. They have had constant watch over her because her heart rate keeps dropping down from the normal 150-165 range to around 85. They are not sure why this is happening and are closely monitoring the situation. These are the moments where we get so nervous!

Drake...what more can I say. He is being a super trooper today and staying out of trouble. His oxygen levels are in good shape, his PIC line is doing good, and he is getting much needed rest with a full belly of milk. They did turn his phototherapy light off today too, because his levels that put him at risk for jaundice have gone down to normal ranges...sister is not far behind.

Tomorrow, Drake is going to get a PAL line just like his sister.

6/28 Today is a new day!

Today is a new day! A lot to update already this morning.  Doctor said Drake's acidosis has come down and there is no growth in the culture they did checking for infection.  Drake got his PIC line in at 10:00am and everything went great.  He finally got to eat 1 cc of mommy's milk and will get some more at 2:00.  So now both are getting fed again! Kennedy had some issues with her heart rate dropping but doctors thought it was due to the tubes for feeding and to check gasses. They made some adjustments and she seems to be doing better.  Both have had their tubes through their umbilical chord for the maximum amount of time so they have to put in a PAL (peripheral artery line) in their wrists so they can draw blood. This is better than the alternative of having to do heel sticks every time to get blood. Drake did have to get his heel stuck yesterday so they could compare the blood from there with the sample from the umbilical chord...this was one of the saddest sights I've seen yet. You could just tell that he wanted to cry but couldn't!!! More updates to come...

Wednesday, June 27, 2012

Wed 6/27 afternoon (my 1st diaper)

I (Brian) got to change my first ever diaper today with Kennedy! At first I was afraid I would be the "Bull in the China Closet" like I am with everything else. It was a very humbling experience for me. I want to pick them up so bad and just hug and kiss them, it is so difficult. I know if I continue to be strong for them that is the best thing I can do. We did get the results back from the echo cardiogram, and the doctor said the PDA valve in the heart is much smaller, so they will not have to start another round of indocin at this time. We will just give it a few days and see if they continue to close on their own. Kennedy is beginning to get mommas milk again at 1 cc every 6 hours. Unfortunately Drake will have to wait; the doctor said he has high acidosis which means the ph in his blood is more acidic than it should be.  This could be caused by several things, one of which could be infection. They sent some blood off for cultures and we will have to wait until tomorrow to know if there is infection or not. They did start him off on antibiotics just to be safe.  Thanks to all for the continued support and prayers,

Wed 6/27 am

We had a good night last night. Drakes blood count was a little low, so he is receiving a transfusion now.

During his diaper change they turned off the phototherapy lights and uncovered his eyes. He decided he wanted to see his mommy and daddy for the first time! What beautiful little eyes he has...They look blue, just like his daddy.
Kennedy is remaining stable, her pic line is holding and all levels are still in check.

They have a busy day scheduled today. Drake will get his PIC line after lunch to match his sister's. Then sometime this afternoon, they will do the echo cardiogram to see if the indocin closed the PDA valve in their hearts. We are praying hard that the medicine works and do not have to move to more drastic measures such as surgical closure....FINGERS CROSSED!

Drake and Kennedy truly are our pride and joy!!!

Tuesday, June 26, 2012

Kennedy update 6/26

Kennedy had her PIC procedure running an IV through the vein in her elbow stopping right next to her heart. It went very well. We did go into the procedure with a little more comfort than we had started with this morning. The head nurse came in and really explained the procedure and reassured us that their PIC team was very active and had a lot of experience when it came to babies her size.

Kennedy with here new IV
Drake showing off his new sunglasses

Tuesday 6/26

We had an eventless night last night! Both babies are doing ok right now. The doctor said he would be weening Drake off the assistance needed through his ventilator and hopefully move him to a C-pap in the next few days. That's keep your fingers crossed. The new risky event we have to deal with for today is that I had to give consent for a new IV called PIC (peripheral intravenous catheter). The IV they have now goes through their belly button, but is only supposed to be in short term where the pic can be left in for months. The pic is inserted in a vein in their arm, leg, or head and runs all the way through the vein to the heart. Like anything else, there are risks...the biggest ones are infection and making sure placement is correct. We just need to make sure the benefits outweigh the risks. Some time this afternoon they will be bringing in a special team to perform the procedure on Kennedy. Depending on how long it takes them to complete, will determine when Drake will have his procedure. One of the difficulties we face is that doctors can no longer give their opinion about what we should do. They have to be careful what they say because so many people sue these days. It is hard for us to make these tough decisions because all we hear are the risks associated with the procedures. It would just be helpful if they could tell us what we should do, but we knew this was not going to be easy!

Monday, June 25, 2012

Long Emotional Day

Wow, what a long day it has been.

I want to start by saying thank you all for the extra prayers going out to Kennedy, she has been placed on an oscillator (different type of respirator) that seems to help get her oxygen levels under control.

Both babies started on Indocin today to hopefully close their PDA valve in their heart. This is a common issue with babies born this early but it is the leading cause of Kennedy's pulmonary hemmoraging. They cannot feed them during the next 24-48 hours due to their treatment however they are receiving proteins and other nutrients through their IV.

The emotions and lack of sleep are beginning to take their toll on mommy and daddy. So many bells, alarms, wires, and machines are hooked up to their tiny little bodies. So many uncertainties, potential problems, and future side affects have our minds going in so many directions. The hope and love that we have for Drake and Kennedy will keep us pushing on.

Extra prayer for Kennedy

Well it has been a busy morning at the hospital, which has kept us from our daily updates. We are needing extra prayer for little Kennedy. A call came in at midnight that Kennedy, was suffering from pulmonary hemmoraging. Basically her little lungs were filling with blood. This is one of those scares we are so worried about. She is stable, they have increased oxygen, but she is nowhere close to being out of the woods from this episode. We finally got to sit down with a doctor and discuss the possibilities for both Drake and Kennedy. VERY scary times are ahead of us. He said that we need to expect a rocky ride with a lot of possibilities...brain, lungs, heart...all of these things kept coming up and kept adding to the worry that momma and I are experiencing. Only through personal experience, one could truly imagine the emotions we are having to power through. Drake is still doing good and is able to eat every 3 hours. Momma got to change his tiny little diaper and take his temperature...something a mother who has not been able to hold her own baby yearns to do. Both are receiving blood transfusions daily to replenish what is lost through testing. More tests today to check bodily functions. I will keep you posted as Kennedy progresses. Please kick up the prayer requests for her during this serious condidtion.

Sunday, June 24, 2012

We are finally with our babies!

The drive from Tyler to Dallas was not really as long as it felt. Momma and daddy are now with their precious little babies after being separated from what seemed like an eternity. They are so excited to finally get to see them for longer than a 30 second viewing.

Drake and Kennedy are still doing as good as they can be for being so early in their development.

Another update will follow tomorrow morning.


Well we officially have started day 2 of Drake and Kennedy's journey in this world. Momma is doing great, we are waiting for the doctor to release her...then we are off to Dallas. Drake was born at 2:32am 6/23/2012 and Kennedy followed 1 minute later. Drake was 1# 11 oz and Kennedy 1# 9oz. They entered this world only after a short 25wks 3 days. It will not be an easy roller coaster ride over the coming months, but their momma and daddy are tough and I know they are fighters too! Both are currently being weened off of their ventilators and will start phototherapy today, which is common at this stage to help combat jaundice. They are currently on a 1 CC diet of milk every 3 hours and will continue this regimen as they are both handling it well. Stay tuned, we will provide routine updates including pictures and information chronolizing their long journey.