The Blessings Amidst the Storms

God blessed us with a wonderfully peaceful Christmas. The boys have continued to go down on their pressure, rate & O2 requirements on the ventilators. Grant was able to be extubated on Christmas Eve a little after 3pm. What a blessing it was to walk in to their POD and see Grant breathing without a tube down his throat! He was having a bit of trouble keeping his CO2 levels down so 6 hours later, he was reintubated. Paul and I were so excited to know that Grant was able to be vent-free for 6 hours! What a blessing and an encouragement for us! I have enjoyed walking in to their POD each day and seeing that their settings were turned down a little more each time. I have started keeping a photo log of their vent settings both as a reminder and as an encouragement... Pressures at 3pm on Saturday for Grant at 25/5 with a rate of 20 and O2 at 28%. Pressures at 8pm on Sunday - 21/5 with a rate of 18 and O2 at 22%. Pressures at 3pm on Saturday for Bryce at 20/5 with a rate of 25. Pressures at 8pm on Sunday - 20/5 with a rate of 15 and O2 at 23%. I know that may not make any sense to most of you but you can see that those numbers have gone down - considerably in our eyes. What a praise. Its been a blessing to have a week full of improvement after 3 weeks full of frustrating set backs.

I went up today to visit the boys for their 3pm touch time and see how things were going. Bryce was still very low on his settings (they can't go much lower! :D). Its so nice to come in and here "there's not a lot new today" from his nurse. It means he's doing good. He's at 3 lbs 4 oz after losing the bulk of his fluid retention from previous weeks. He looks like a tiny newborn, pink and "filling out" rather than a very puffy and ruddy looking micro-preemie. His UAC line (see "NICU Terms" post) had stopped drawing but they were going to see if they could get it working again. He was awake off and on during his respiratory treatments and I so enjoyed looking at those sweet eyes trying their hardest to open and take a peek around. He is so precious.

Grant was very wide awake during my visit. When I'd talk to him, he'd respond by trying to look up and move his head towards the sound of my voice. I so greatly enjoy seeing my little man bright-eyed and responsive. Up until the end of this past week, I'd not seen him with his eyes open or seen any movement other than an occasional involuntary jerk or seizure movement. What a blessing to see him alert! As I was changing his diaper, his nurse talked to me about how he was doing. His UAC was also no longer drawing so they were going to see about replacing it. They'd drawn a tracheal aspirate culture when they'd reintubated him on Christmas Eve and it came back positive for Gram Negative - a type of bacteria. He is currently on an antibiotic for Gram Positive strep from his PICC line. They started him on a separate antibiotic for the Gram Negative. He has been on full feeds (solely breast milk) since Thursday (other than going NPO for a short time following extubation). This morning, they started noticing bowel loops - a sign of intestinal swelling. He also had higher residuals than the doctors would like. They lowered his calorie count and stopped fortifying my milk to see if that would help. He was able to continue full feeds through the afternoon. When we were doing his 9pm assessment, his nurse again noticed bowel loops. While I was changing his diaper, I noticed that his poop had a foul smell to it not typical for a baby solely on breast milk. Grant's nurse decided to check it and found a small amount of blood. He is now NPO and will have several x-rays to check for intestinal dilation. A culture of the stool was sent off to the lab. After a week of good news, this hit me a little hard. I know that the NICU stay is a roller coaster ride full of ups and downs but lets just say that knowing that doesn't make the bad news any easier to stomach.

The boys' nurses both needed to do a few things and I found myself for a short time alone with the boys. I stood next to Grant's isolate and just watched him breathe. I started talking to him and his eyes opened and he moved his head as if to look up at me. I opened the isolate door and placed my finger in his hand - he grabbed a hold of it. Nothing tugs at my heart more than such sweet responses from my boys. I just stood there staring at such tiny fingers wrapped around mine. I laid my head on his isolate and started to pray. I prayed that God would again hear my cries as He has done so many times and heal my precious baby boy; that the blood would not be a sign of a bad infection or NEC but that it would go away as quickly as it came. A nurse walked in at that moment (she has taken care of both boys often) to check on things as she had just heard the latest news on Grant. "Just another way for God to do another miracle on these boys!" was what she said to me. How true those words are. Both of our boys are testament to God's goodness. Grant's nurse asked me if I wanted them to pray with me. I told them that would be wonderful. So right there in their POD two NICU nurses prayed for Grant, for Paul & I. Their prayer meant so much to me. I cannot tell you how blessed we are to be surrounded by such an incredible group of Christian nurses. Even in the midst of all that is going on, God is pouring out His blessings on us. We have two beautiful baby boys that inspite being born 3 full months early, are thriving and will be 4 weeks old tomorrow. Though things are very stressful at times with the boys, we have some of the most incredible (EVER) nurses taking care of them. God has answered our prayers for these boys over an over again. Brain bleeds have stablized or reabsorbed, PDAs have closed without need of surgery. Vent settings that were only a week ago extremely high on both boys have dropped dramatically. Grant's newest challenge will soon be a wonderful answer to prayer, I am sure of it. No one said that there would never be trials on this earth but He did say that He would be with us each step of the way. How true and how evident that has been in our lives - especially in the past 4 weeks!

Extubation... REALLY??

This post will probably sound more like a ramble. I am so giddy right now that I'll probably make very little sense... but I will try. :)

The boys have in the past two weeks made little to no headway on their vents. Grant has been intubated now for 3 weeks. Each week, his vent settings have either stayed the same or gone up. Though they've tried to challenge Grant to work towards getting him extubated, he's made no progress. Bryce was moved from the oscillating ventilator back to the traditional vent but even he has made no headway in his o2 or pressure requirements. Yesterday it was decided that both would start a 10 day round of steroids to help give them the push they needed to get them off those ventilators. I talked to Jenni (the NP) as to what the plan was with the steroids. Best case scenario, the boys would be able to be extubated. They were just hoping that it would at least make a little headway with lowering their vent settings. I began praying and believing that the boys would not just make a little headway but respond better than they expected with the steroids on board. Can I just say that our God is a good God?!

Last night I was so frustrated by the numbers I saw on the boys' vents. The same pressure settings that Grant has had for nearly 2 weeks. Bryce's O2 setting were so high. I left with the understanding that there was that possibility that the steroids could take several days to work and that it didn't mean that they'd be extubated any time soon - just that they'd hopefully make some progress. When I called this morning, I spoke with Bryce's nurse first. Bryce had a breakthrough seizure earlier in the morning so they gave him a bolus of phenobarbital. He had a plug in his tracheal tubing so they made the decision to pull it and put in new tubing. Since then, his O2 and pressure requirements have gone down considerably. I could have done a happy dance right there in my laundry room! Next I talked to Grant's nurse. Grant was doing beautifully. His O2 and pressure requirements have gone down so much today that they are talking about extubation in the next 24 hours to siPAP. Grant being extubated?! He has been on the ventilator now for 23 days. In the past 2 weeks, he has made no headway at all. While Bryce was extubated just 24 hours after birth, Grant has not come close to it. Yet they are talking of extubating him because he's doing so well!! I am literally on cloud 9!! God is answering our prayers and the boys are doing SO well with the steroids that not even 24 hours after the first dose, they're talking about extubating one of them!!

I cannot tell you how light my heart is right now. After a solid week of bad report after bad report, God has poured out blessing after blessing! He has been answering our prayers from the very beginning but this week he has given us a double portion!! Grant's brain bleed is blessedly stable. His PDA - gone. Bryce was removed from the oscillating ventilator and his PDA (which, just a week ago, they were talking of performing surgery on) is GONE! And now both of my boys are making huge headway on the ventilators!! What a good God we serve!! I seriously cannot express the joy that I feel right now. There are still obstacles to overcome. There will still be those days... but we've made such marvelous progress. What a wonderful Christmas present from our Father!!!!

Please continue to pray with us that our boys keep moving forwards towards extubation! That is such a huge step for us! Thank you, Father, for hearing our cries and answering us in such an incredible way!! May YOU recieve all the glory and honor for how the boys are improving!!

Up and Down But Always Forward

As I sit here in the NICU watching my baby boys sleep, I'm reminded of how good our God is. Here are two beautiful babies who were born three months before they were due to enter the world. They are nearly three weeks old now and God has watched over their precious lives every step of the way. Their lungs, which weren't meant to work this early are sick but they are growing and developing more each day. Their bodies may be tiny but each organ is doing its part - the lungs, the kidneys, the heart.... they're all functioning so well considering this world is still so new and foreign to them. They've had brain bleeds and seizures, bradycardia episodes and times they need bagging. Yet they're growing bigger every day. Both boys are over three pounds now and each day, they lose more of that ruddy look; being replaced by a squeezably cute pink "newborn" glow. With each day, they lose a little more of that micro-preemie appearance and we are able to see more of their defining features. They are thriving. There are ups and downs but they are continuing to grow and their tiny bodies are continuing to mature.

Bryce has had a lot of downs in recent days. He was switched over to the oscillating vent due to poor oxygen saturation. His kidneys struggled to function on the endocin meant to close the PDA in his heart. He started experiencing seizures. But these past few days have also been ripe with blessings - answers to our prayers. God began closing his PDA where the medicine was just not working. His brain bleed was no longer present. His oxygen requirements leveled off and even decreased a little. He has slowly become more tolerant of the poking and proding of NICU staff from labs, taking vitals, etc. He is now feeding from my breast milk in addition to the TPN and is tolerating it well thus far. God has answered our prayers for him time and time again.

Grant is no less a miracle and answer to prayer than his brother. Though his brain bleed is definitely something the staff have had to watch closely, it has continued to stay stable; free from swelling or major spinal fluid retention. His oxygen requirements have not been able to decrease but he has not had to switch over to the oscillating vent, either. While they had to replace Bryce's UAC line (the arterial line they use to draw labs from), his has remained useful - a huge blessing as this keeps the staff from constantly having to prick him to draw blood. His yeast infection was caught early and treated quickly; his spinal tap for that has remained negative (a 72 hr culture). He is also feeding from my breast milk, doing so well that he may be totally off the TPN within the next few days.

The NICU is definitely a roller coaster ride. It is definitely both emotionally and physically draining. I would be lying if I told you that every day gets easier. Some days I'm full of faith while other days I'm severely lacking. Yet my boys continue to thrive and my God still answers my cries for my sons. I am learning day by day to lean fully on Him. The situation may change and the struggles may change but God is still the same. He is still holding them. He is still the Great Physician, continuously perfecting these precious little lives. He is still here giving us peace and assurance that He is still in control. It is because of this that I am able to kiss my babies gently and walk away from their isolates each night to drive home and leave them in the care of the staff at St. Johns. He has blessed us with a wonderful staff to care for them and He is watching over them. And one day soon, this will all be just a memory - a reminder of how incredible our God really is.

One step forward, One step back

Bryce is going backwards again so they've drawn more labs and restarted a couple of meds in case something was missed. He is back up to needing over 60% oxygen on the vent. His right lung is just not improving like they're wanting. Need to call back in 20 minutes to get better specifics on Grant but he is having breakthrough seizures so they've been watching him for that all morning. He is also up on his oxygen requirements on the vent. I know that you are all praying constantly for my boys. We are going to stay firm believing that they WILL get better.

Its the little things....

Its the little things....Really, it is. The baby steps, so to speak, that make such a difference for us each day. The ability to enjoy our boys for another day and to watch them thrive under the care of an incredible NICU team and the Great Physician's hands.

This past week was such a rough week; especially for Bryce. Both boys have developed pneumonia and had to go up on their vent settings by quite a bit. Bryce eventually had to be switched over to the oscillating ventilator because the conventional one was just not doing enough for him. Even with the oscillating vent, he was struggling for a while. Last night there was talk about doing surgery on his PDA as that may be the big issue as to why his lungs have continued to worsen.

Today was a day full of little things. Bryce and Grant both had a good night and a good day today. Bryce had an echo today that showed his PDA was closing!! It was listed last week as Moderate to Large. Today its listed as Small to Moderate! What a praise! His head ultrasound confirmed last week's results that his brain bleed is gone. He has been steady on the current vent and has not required them to up the settings. His chest x-ray was also better than previously. Grant's weight is up to 2 lbs 15 oz so just barely under 3 lbs!! (because of the excess fluids still working their way out of his system as well as the increased blood volume from the blood transfusions, I don't have a current weight for Bryce). Grant has also finally gotten to a place where they can start trying to wean him off the vent again. He's been able to go down by 10 on his vent settings today and still maintain good O2 sats which is awesome. He has been able to get off of all but 1 of his antibiotics, as well.

Today has been a day of little blessings. Little blessings that mean a great deal to us. God is once again answering our prayers for these beautiful baby boys! I cannot tell all of you enough how much your daily encouragements to me on Facebook, and all of your prayers mean to both Paul and I. We are humbled by the concern and care that so many have shown!!

Update on Bryce

Bryce's condition continues to deteriorate as he is struggling to overcome the newest round of pneumonia. They had to change from the conventional vent to a vent that keeps his lungs open constantly in order to help move oxygen through. He was just requiring more oxygen than the other vent would allow. They need him very sedated on the current vent and the original dosages they were giving him was just not enough and early this morning he was close to maxing out this second ventilator as well. They upped the dosage on his sedative and he's back down to where they want him to be on vent settings. His PDA is still large (the hole in his heart) and they were wanting to give him a second round of the meds used to close it but he has started showing signs of renal failure from the first dose so they've quit the medication. They've given him several boluses of fluids as well as two diuretics in order to get his kidneys functioning the way they should.

I know that you all have been praying on Bryce's behalf and continue to do so, as well as for Grant, Paul and I. I am so thankful for the support you all have given us. I continue to pray that God heals my boys and that we will continue to find peace in the midst of this storm. I know that He is faithful to answer our cries. I've seen it so many times in the past two weeks.

I just wanted to give you an update on what is going on with the boys. Grant is doing much better than his brother. He does have pneumonia as well but has been responding well to the antibiotics. The last head ultrasound did show some fluid retention from the brain bleed but that can be fixed with a shunt if need be. He does have an infection from yeast but that is also easily treatable with medication.

Even though things seem so discouraging, I praise God for the answers to our prayers that he has already provided and for the answers still to come.

The Roller Coaster Ride

I've never been a fan of roller coasters. Never have I wanted to get off of one like I do this one. The NICU stay with preemies is often called a roller coaster ride. It is definitely ringing true with the boys' stay.

The beginning of this week was a calm reprieve for us after a crazy first week. Grant was started on feedings through his OG tube and did well with them. Bryce was having a few breathing & brady issues so they were holding off for the timebeing on his feeds. On Wednesday, Grant had a breakthrough seizure and was returned to NPO but by Friday, both were put on feedings. Bryce continued to worsen throughout the week but overall things were calm ... until early this morning.

We have determined that Bryce hates Sundays. Last Sunday he had to be reintubated and was struggling with bradycardia episodes. This Sunday has been just as tumultuous. Starting Wednesday, Bryce started having recurring brady episodes that continued to occur with more frequency as the week progressed. Saturday it was evident by their chest x-rays that both boys were redeveloping pneumonia. Cultures were drawn to check for infection and both were put back on antibiotics. By Saturday evening, Bryce was showing signs of struggling; his O2 requirements kept creeping up and he was retracting pretty badly. They continued to adjust his vent settings to help him breathe easier. Early Sunday morning (around midnight), I received our second call in a week from the NICU regarding Bryce. He continued to worsen through the night and it was decided that his EG tubing (the tubing that goes into his lungs) would be replaced to help him breathe better. The tubing was removed and was clogged with thick secretions which were causing him to work twice as hard for each breath. He did not respond well to having his tubes switched out and his sats rapidly dropped. His heartrate dropped into the 30s and his O2 saturation (which should be in the high 80s and 90s) dropped to around 6. He was coded, chest compressions were started and a they administered a dose of epinepherine to get things going again. He was only down for a short time (approximately 2 minutes) and then recovered. The new tubing helped greatly to lower his oxygen requirements as well as his vent settings.

After doing a lot of praying with Paul, I decided to go back up to the hospital to sit with him - more for reassurance for me than anything else. His skin coloring was so much better than when I'd seen him earlier that night and his sats were looking better as well. I believe by this time it was about 1:40am. Shortly after arriving in the NICU, Bryce began seizing. A large bolus of phenobarbital was administered as well as an additional medication (can't think of the name right now), to stop the seizures. Another dose was given approximately 15 minutes later as he began seizing. Shortly before 2:20am, a room was prepared for me down the hall so that I did not have to try and drive home in the awful weather and be nearer to the boys. I decided to head that way and try to get some sleep. It took me a little while to fall asleep but eventually, sleep did come. At 6am, my daily cell phone alarm went off and I headed back down to the NICU to check on the boys before heading home. At 2:20am, Bryce had a seizure that lasted 4 minutes and additional meds had to be administered but he finally recovered and had no more seizures since that time. They had him pretty heavily sedated as he has become quite a "touch-me-not" being so sick, and he was resting peacefully. I headed home to give Paul an update and get a little more sleep.

I headed back up to the hospital this afternoon. Bryce had been taken off of his feeds yesterday when he started to go down hill. This morning, Grant was taken off as well after throwing up twice. Other than requiring a little more oxygen, Grant has been doing pretty well. Bryce was doing good this morning but began struggling again after 12pm. They have had to continuously up his O2 requirements and adjust his vent settings. Shortly after 3pm, he was sitting at a rate of 74% - so much higher than the rate of 34% from earlier this morning. The first round of results from the cultures taken Saturday are showing a bug growing so the pneumonia is from a bacteria. Bryce had an echo earlier in the day that showed his PDA is still moderate/large. Since switching out his tubing and adjusting his vent settings, his bradycardia episodes have ceased. They are wanting to do another round of the endocin to close the PDA but are waiting on results from the head ultrasound which will be performed later on today before they determine whether to repeat the treatment, hold off for now or do ligation surgery to fix it. For now, we just wait.

So, yes. A roller coaster ride. Complete with lots of highs and lots of lows. I am thankful for the peace God has given to help us through the lows. I am also so grateful for the incredible staff that our NICU has. They have been a tremendous support and source of encouragement for us and care so well for our precious boys. They have kept my room open so that I can stay if need be to be closer to the boys. Please continue to keep the boys in your prayers. We still have a long road to go but are standing firm in faith that we will eventually be able to bring our beautiful boys home.