Daddy with Kinsley
March for Babies - Huge Success!
The March of Dimes was a huge success. Thanks to all of your support, we collectively raised more than $2,500 to help other families. Thank you so much for the continued support.
With lots of Love!
Please visit our March for Babies personal website at
We have made it to day 10. They both shows signs of a little growth and each weigh 1 ounce more than when they were born. Trinity now weighs 1 lb 7 ounces. However she seems very figidity. Our Doctor is a little worried as these movements are pretty rhythmic and longer than the normal twitch. Our Doctor decides to give her Theophylline but her caffeine levels seem low as well. Caffeine typically provides some stimulation. The movements are now classified as seizure type events although they are not 100% sure what they are. It could just be the immaturity of the central nervous system as well. Kinsley weighs 1 lb 5 ounces now. She does not have as many seizure like movements so they did not put her on the Theophylline. Her feeds have been increased to every 3 hours which is great. They are both still being closely monitored for Blood Gas to measure oxygen and blood counts. Their breathing seems to be doing OK with rates up and down anywhere from 21-40%.
Similar to the oscillators, these seizure like movements are hard to see. Overall we know that they are hanging in there and fighting through each day but with each day they seem to be presented with a different challenge. Our neighbor, a pastor, gives us some needed advice - "Let Go and Let God". We continue to reach out and know that they are getting the best care. The back and forth and continuous thoughts are breaking us down a bit. We reflect and realize that we are not supposed to understand things right now but just need to work through them and be thankful that we have today.
Our Daily Encouragement:
I will instruct you and teach you in the way you should go; I will guide you with My eye.
They are now 9 days old - amazing. They are still tiny, tiny, tiny and have not gained more than an ounce each. However with their new feeding and increased amounts per day, we should start to see some growth soon. There is some concern however that Trinity's brain bleed has come back based on an ultrasound they just performed this morning. Our Doctor decides to give her an anti-inflammatory medicine asap. Trinity is also high on her sugars so they will be continuously monitoring her blood levels.
On the other hand, Kinsley is starting to rebound nicely from a couple of rough days. The cultures finally come back negative which is great. However her sodium is a bit low. She seems to be a tough little nugget to track her levels and adjustments as she is up and down quite a bit. Kinsley gets her first sponge bath. They cannot be moved from their incubators so their baths are a little different than the ones we are used to.
We are very thankful for another day. A full work week has past and we are starting to settle into our routine of visits even though we are physically and mentally exhausted. Our little girls meet their Uncle, Ed, for the first time. I am sure he will give them a hard time later in life but for now he just wanted to say hi. Other family and friends continue to check in to see how they are doing. Our Doctors and Nurses are amazing and we realize again how lucky our girls are to get such good care. A week of ups and downs and the weekend to reflect and take it all in is in order.
Our Daily Encouragement:
Encourage each other to build each other up, just as you are already doing.
1 Thessalonians 5:11
Trinity seems to be progressing a bit quicker these days. Momma got to change her blow out of a diaper - a pretty good one apparently - I was not there. Trinity is breathing on the CPAP well at room air 21% and at a 20 rate per minute. She is also feeding every 3 hours.
This was a big day for Kinsley. She was taken off of the oscillator and put back on CPAP. She had her umbilical catheter removed and is also now on the Billy lamp and off of the Phototherapy lamp. She is trying to catch up to her older sister. She is feeding and keeping the food down. Momma also changed her very dirty diaper. Daddy took her temperature and it looked good. Her breathing was little higher on CPAP but still OK at 28%.
This has been another good day. We are very grateful that Kinsley seems to be making better progress than days past and will pray for many more days like today.
Our Daily Encouragement:
Beloved, let us love one another, for love is God; and everyone who loves is born of God and knows God.
1 John 4:7
Good news late today for Trinity. Late in the day she was removed from the oscillator and is now back on the CPAP. They also removed the Phototherapy light and instead will be using a Billy Light. They dub it the Billy light as it is used to help move the bilirubin through the girls system. Trinity is taking her feeds well (1 cc). They are now feeding her every 6 hours. She has a new IV in her right arm and was given more blood. She also had her first bath. Overall all very positive steps.
Kinsley on the other hand is still on the oscillator and has still yet to start her feeds. Our Doctor indicated that she should be starting her feeds soon. Her Blood Gas and other tests show that she has high sugar levels which means she still needs more oxygen. The good news though for Kinsley comes back that the medicine has worked and her PDA has closed. Again it could open in the future but for now it is closed. The ultrasound though does show a VSD - a flap open in the lower chamber of the heart. This should take care of itself sometime in the next 6 months but they will be monitoring it as well.
Our prayers are answered for the day. Another day under our belts and a huge praise that Kinsley does not need heart surgery. As you can see, it has been up and down for them and us over the past few days. Emotionally, it is starting to wear us down a bit and unfortunately, we did not get to see them tonight as my car was totaled in a hail storm on my way home.
Our Daily Encouragement:
Give unto the Lord the glory due to unto his name; worship the Lord in the beauty of holiness.
We get an early morning call at our house - the girls have had a very rough night. Very frequent A's and B's happening and lasting longer than the typical few seconds. Trinity and Kinsley both need lots of stimulation by the nurses now to remember to breath. Before the girls would respond to a little nudge to their feet or body. They stopped responding to the nudges. The Doctors let us know that they need to be Intubated. Essentially they will be put on ventilators. They think it would be best for them in hopes that they could relax and get the oxygen they need. We have been warned that this situation may occur after a few days of birth as they are getting tired. The ventilators will provide breaths at a certain rate similar to the CPAP but the girls do not need to work as hard to breath. They actually decide to use an oscillator which is low pressure/quick breath type of ventilator. The oscillator will do the work for them and is a little easier on their lungs. It is going to be a constant monitoring of their Blood Gas while they are on the ventilator. The Blood Gas helps measure the effectiveness of their breathing. They are adjusting the ventilator settings all day.
Going to the hospital today was very difficult. Seeing them on the oscillators was heart wrenching as their little bodies were constantly vibrating. It was very hard to see our little girls have to go through this. We know that it needed to happen and it was best for them so we stayed by their side and let them know that we were there. The good news is that they are resting well even though Mom and Dad are not. Another small set-back but they are still fighting. They have almost made a week and another rough day but a day forward regardless.
Our Daily Encouragement:
Until now you have not asked for anything in my name. Ask and you will receive, and your joy will be complete.
It starts off as an exciting day for her - many positive steps forward. Trinity is taking her first feed. She also had a really nice Tarry poop (very important with feeding starting). She took Momma's milk and seems to be digesting it. All feeds will be done through a tube and at this point will be given every 12 hours. Some milk residuals come back up into the tube but overall she does take the feed well. On the downside, she needed another blood transfusion. They are still taking blood from her to monitor her blood count and oxygen levels. These transfusions are purely to help fight infection and boost her immune system. Unfortunately, Trinity has very few spots for accepting a new line as her right arm is still recovering from a previous line. She is also given antibiotics to help fight infection. The Doctors are trying to stay ahead of the game.
She isn't doing as well as Trinity. She unfortunately is still working through her heart issue. The medication will prevent her from getting any milk. They were also thinking about taking her umbilical catheter but also need to hold off on doing this due to the heart concern and meds she is taking. She is also on antibiotics to fight off infection - the two antibiotics that they are using are Vancomycin and Gentamicin at this point. She also gets her next chest ultrasound.
We are happy with the progress today and give our praise. They made it through another day. It is tough not to be in the hospital with them but we are working through the adjustment. We live 21 miles from the Hospital and I am back to work. Trena is also hard at work - pumping (every 2 hours). It is a difficult task to handle the schedule at home, while also still feeling the pain of the surgery and travelling to the hospital to see the girls during the day. We go to the hospital together when I get home from work at night. We are trying to figure out the best schedule but it could take some time.
Our Daily Encouragement:
I wait for the Lord, my soul waits, and in his word I put my hope. My soul waits for the Lord more than watchmen wait for the morning.
We wanted to share the high level points of his message with you:
We all should make the most of each day and accept the things we cannot change. Don't waste time focusing on the negative. Give it all up to God each night. Do not think or dwell upon set-backs but think about what doors he is about to open. Give thanks. Disappointments are inevitable, misery is optional so when you wake up each day learn to accept what God has given you.
We get some great news about Trinity's brain bleed. It seems to be resolving itself but they will continue to monitor it. Trinity may start feeding soon which is a great step for her development. At this point though, they are both still getting their nourishment through IV's. When they do feed it will still be through tubes but it is much better to get their mom's nutrients and should help them grow. Kinsley is still taking the Indocin so she will be delayed on her feeds or at least until the heart duct issue is dealt with. The good news for Kinsley - early indications show her duct closing and the medicine working. Our Doctor decides to continue the same treatment one more time - every 12 hours for 3 treatments in hopes that it will completely shut the duct. However, Kinsley seems pretty pale and they are concerned about possible infections. She gets a culture and they decide to start giving her antibiotics just in case. Culture results typically take 48 hours or longer so giving her antibiotics is more precautionary for her. Lots going on but overall this is a good day for them.
Praise, praise, praise... It has been a good day for us. The babies seem to be taking positive strides. Trena gets discharged today as well. She still has a long way to go to recover but getting to come home should certainly help. We had some ups and downs during the day knowing that the babies will have to stay there without us. Fortunately, we already knew one way or another that we were going to be at the hospital regardless for the next 3-4 months. The situation may be a little different than we hoped but they are getting the best care.
Trinity is being monitored very closely because of her brain bleed. She will receive more ultrasounds in the coming days. There is an equal chance of this bleed resolving itself or getting worse. Future implications were discussed but we will wait to write about them later if needed. We also received the results of the Echocardiograms (ECHO). An ECHO is an ultrasound of the heart. It is performed to look at the the chambers and blood flow. A typical concern for preemies is that they have a duct that cannot close on its own due to their size. Full term babies typically do not have to worry about this as it happens on its own while in the womb.
Trinity's ECHO results come back great as the duct is already closed. However, we have been cautioned that this can open up in the future. Unfortunately, Kinsley's ECHO shows a large opening in the duct. Our Doctor briefs us of the situation and options. The duct has to be closed or it could cause excessive blood flow into the lungs and harden there. Again many implications to this scenario. They will treat this ASAP. There are 2 options for closing the duct - medication or surgery. First they will try to give her Indocin once every 12 hours for 3 times. If the duct does not close, than they will have to perform heart surgery and clamp the duct shut. They also continue to go up and down on their CPAP settings and all other measurements/levels.
It becomes very difficult for us to work through all of this as there are really no answers on what will happen to either of them. We know they are breathing pretty well for 24 weekers. However these 2 areas are just as critical as the lungs and right breathing. We continue to pray for peace, comfort, and strength and even though we cannot get back to all of our friends and family in a timely fashion, your love and support continues to amaze and help us - flowers, cards, food, movies, texts, notes, emails, calls, the whole deal. Let me tell you all how much it is needed at this point even though you may not be here with us. We are chalking this one up to one of the bad days we have had and know that there will be many more good days to come. In the end there will be many more good days to bad but right now it is very difficult to absorb.
Grandma, Camille (my Mom), flew into Austin this afternoon to also help Trena, Terre, and me. She gets to see her little granddaughters today for the first time. It is another blessing to have her here.
Our Daily Encouragement:
For where your treasure is, there your heart will be also.
We get the results back on their Head Ultrasounds and the Doctor informs us that Trinity has a Grade II Brain bleed. There are 4 grades so it could be worse but it certainly is not a good situation to start the day. Kinsley's results come back looking good. They continue to have Apnea's and sometimes combine forgetting to breath with Brady's (the heart rate drops below 80 beats per minute). The staff calls these Apnea's and Brady's (A's & B's). The nurses administer caffeine to stimulate them and try to help with their breathing. Trinity also has her first blood transfusion. This posed another problem as they needed to put in a new line. Her skin on her right arm was slightly teared when removing the tape. It was a tougher day for Trinity but she continues to fight. Kinsley seemed more comfortable.
It is still tough but we are learning how to deal with the sounds of the NICU. We are trying to stay on an even keel. We can't get to high or to low no matter what situation presents itself to these little girls. We also decide that it is important to stay strong in the NICU, to talk to our little ones, let them know we are here for them and that they are not alone. We cannot get to upset or excited about the bad and/or good days. We are learning that this is a process of unknowns and things can change within minutes, hours, or even the next test. We know this is in God's hands and that he has a plan. We pray daily for acceptance and ask for peace, trust, and comfort with the situation. We ask our Lord to keep our babies safe and secure and praise him for every day that he gives us.
Our Daily Encouragement:
All this is for your benefit, so that the grace that is reaching more and more people may cause thanksgiving to overflow to the glory of God.
2 Corinthians 4:15
The main concerns are three fold - Lungs, heart, and the brain. They are monitoring their levels of sodium, potassium, and sugars from their blood work while making adjustments as needed. Trinity and Kinsley are hanging in there. They are breathing room air at close to 20% which is what we all breath. This is a true blessing as it could affect many more concerns down the road. However, they are still getting some CPAP help (20 breaths per minute if they need them). Head ultrasounds are taken and the Doctor orders Echocardiograms for Friday. They are both squirming around in their incubators (this is a sign of distress) as they no longer have constraints as they previous did inside. Apnea's (they stop breathing as they forget they are no longer tied to their previous life source - the placenta) come and go but it is not too significant at this point.
Walking into the NICU and seeing your daughters struggling is very very difficult. However, we know they are in the best place possible. The girls have the best Doctors and Nurses looking after them 24/7.
The sounds of NICU are heart wrenching. Buzzers and Alerts are continuously going off. The nurses had to explain what each meant and how the monitors reflected the situation. NICU 101 was now in session - equipment, procedures, etc... Each buzzer, each alert, again and again and again. Many more emotions going on this day that will remain with Mom and Dad.
On the other side, support from family and friends was true encouragement. Many calls, notes, texts, thoughts, and prayers from all of you reading this blog. God has blessed us not only with these 2 lovely babies but also has blessed us with so many loving, caring, family and friends.
Another blessing occurs when I make a late night visit to the NICU and meet Jason and Kim Reid, proud parents of Jenna and Blake. They are our neighbors in the NICU and also had 24 weekers. Right now, Jenna and Blake are approaching 33 weeks. I can't say how much of an impact this meeting and talk had on me as this was some needed guidance, peace, and comfort from the Reids and their experiences.
I ask anyone reading this post to please pray for the Reids and the health of their babies.
This Blog is intended to keep you all as up to date as possible about the babies situation.
We will try to update this daily so feel free to check in to see where things stand with Trinity and Kinsley.
We will also try to help you understand how we as parents feel about the situations as we encounter the different challenges.
Please feel free to post your thoughts. We love you all so very much and thanks again for all of your support.
Mom is doing well while slowly recovering from surgery. The babies are now in the NICU but are doing well for being born at only 24.5 weeks and weighing only 1 lb 6 ounces (Trinity) and 1 lb 4 ounces (Kinsley). There are many more hours, days, weeks, months and challenges ahead that they/we will need to overcome.
The babies are doing OK after the Emergency C-Section and each one gave a soft cry when they entered this new world. Medical staff (Doctors and Nurses) are now ferociously working through their analysis of Trinity first and then Kinsley. Immediate IV's, Ports, and oxygen are administered.
Trinity does not accept the catheter through her umbilical cord as there is blockage. She has to take it in her little left leg. Kinsley seems to be doing a bit better as she can accept the line. They rush them out of the Operating Room and to the NICU (Neonatal Intensive Care Unit). Dad is asked to follow the Doctors to the NICU.
Trinity and Kinsley are placed into incubators which have open bed warmers in them. Body temperature is regulated while the Doctors try to mirror what was happening in utero as best they can. Each baby has a Phototherapy Light beaming onto their slightly translucent little body to help with Jaundice. Wires and Catheters seem to be running all over the place. They are each given CPAP (Continuous Positive Airway Pressure) to assist them with their breathing (you may have heard about this but it helps people who have sleep apnea). The CPAP machine covers their mouth and nose. They also have little hats and masks on to protect their eyes from the intense light.
The journey begins...
Hearing Trinity and Kinsley cry was an absolutely amazing moment. We know they have a long way to go but for that one moment - amazing.
How is Trena? It was all happening so fast. I was required to head up to the NICU with the babies when they were born and knew Trena still had more to get through. The Doctors in the NICU dismissed me after a quick review and consent so they could continue working on the babies. I made my way back down to the ER to be with Trena but I was not allowed back in.
My mind was racing. It was a helpless feeling. I remember thinking how everything happened so fast from when the Doctor advised us that surgery was our best option. Within a matter of 10 mins., Trena was getting her Spinal and situated in the ER, I was putting on scrubs, and all the necessary Doctors (about 10 total) and tools were gathered for the surgery.
The roller coaster ride has started. The babies are fighting hard. Mom is working through recovery. We are praying, praying, and praying that our Lord will watch over all of us.
Grandma, Terre (Trena's Mom), flew into Austin from Ohio as soon as she could after she heard Trena had been admitted into the the hospital on bed rest. All of her help and more importantly just being here for Trena has been a true blessing for us. She gets to see her little granddaughters this evening for the first time.
We had been reading daily encouragements ever since Trena first entered the hospital on bed rest. I figured I would post them for you as well.
Our Daily Encouragement:
Praise be to the Lord, for he has heard my cry for mercy. The Lord is my strength and my shield; my heart trusts in him, and I am helped. My heart leaps for joy and I will give thanks to him in song.