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.

NICU Terms

I have been using a lot of acronyms and phrases that I sometimes forget do not necessarily make sense outside of the medical world. I thought it would be helpful to have this to reference back to whenever you read something that doesn't necessarily make sense. I will try update it as new terms come along.



Desat - (short for desaturation) oxygen saturation drops below specified parameters (typically below 86)
Breakthrough seizure - a seizure that has occured while on medication (phenobarbital)
Grade 1 brain bleed - bleeding has occured inside the brain at the germinal matrix only
Grade 2 brain bleed - bleeding is present both in the germinal matrix and in the ventricals
PDA - Patent ductus arteriosus; an artery in the heart that is used to bypass the lungs in utero. It is supposed to close off shortly after birth but sometimes requires medication or surgery to close. (Medication - endocin) Detectable as a murmur
PFO - Patent foramen ovale; common even in full term infants - an opening between the left and right atria (upper chambers) that is supposed to close off soon after birth. Small PFOs are usually self-correcting.
Blood/Gas levels - checked every 8-12 hours, looks at the volume of CO2, Hemoglobin and hematocrit levels, etc. used to determine need of additional blood, oxygen, etc.
CPT treatments - respiratory treatment in which small vibrations are applied along the chest & back to help break up mucus.
Transpiloric - small tube fed down the throat through the mouth which bypasses the stomach for feeding breast milk or formula into the beginning of the small intenstines. Purpose is to prevent regurgitation of feedings.
OG tube - small tube fed through the mouth into the stomach to check for gas and residuals in the stomach
Residuals - pulled through the OG tube, this checks for proper digestion of milk when feedings are fed into the stomach (via the OG tube if intubated or an NG tube if not on oxygen support).
TPN - total parenteral nutrition; adjusted each day according to their nutritional needs, this is how the boys receive their nutrition when not on full breast milk feeds. As the breastmilk feedings increase, the TPN is decreased until the boys are on "full feeds".
NPO - typically meaning no feeds by mouth. In the NICU, it means baby is solely on TPN with no breastmilk feedings.
NP - nurse practitioner; one of our main contacts regarding the boys' care, procedures, etc.
PICC - Peripherally Inserted Central Catheter; tube inserted into the vein and threaded until it reaches the heart. This can remain in place for a long time and is used to deliver medications and fluids.
UAC - Umbilical artery catheter; a small piece of tubing threaded into the baby's artery in the umbilical stump. The tube delivers fluids, medications, and nutrients, and can be used to draw blood.

Amazing Grace

After such a roller coaster week this past week, God has blessed us with a calmer one. Sunday ended with a scare but God answered our prayers and Bryce pulled through. Both Grant and Bryce still have their ups and downs but God is blessing both Paul and I with peace that our boys will continue to pull through.

Grant is now up to 2 lbs 10 oz which is a blessing! He does have a bit of edema but that's just to be expected. His head ultrasound today showed that his bleed is still stable which is a blessing!!! His PDA is also still small so nothing at all to worry about. He has gone up on his oxygen over the last few days and they are keeping an eye it. He is still very much a "touch-me-not" but has been tolerating his CPT treatments (small vibrations on his chest to help break up mucus in his lungs). He did have a breakthrough seizure early this morning. Yhey gave him a bolus of phenobarbital and he hasn't had any more episodes since. It may take a little while to determine the amount of phenobarb to fully regulate his seizures but it is a huge praise that in a week, he's only had 1!

Bryce is up to 2 lbs 11 oz though they're guesstimating a good ounce of that is from excess fluid do to the endocin (sp?) they gave for his PDA. The first round of endocin didn't do a lot for closing it but they are going to hold off on doing a second round of it for the timebeing. They gave him lasix to help get rid of the excess fluid and it is working well. He has started having bradycardia episodes again but because he does not drop his oxygen levels or his stats so they are just watching him for now. They did draw some labs today to check that infection isn't the underlying problem.

I was able to go up and see both the boys this afternoon and they both look so good. They are getting bigger each time we come up and see them. They are such beautiful baby boys. God has answered our prayers for them time and time again. I have struggled in the past two weeks to make sense of everything that has transpired. So many times a day, the "what ifs" have surfaced in my mind and I feel myself begin to panic, question and doubt. I am so thankful for God's grace and mercy; that He does not change though I feel in a panic. In the past few days, I have really begun learning how to put my trust and faith more fully in Him. I have clung to the promises in Psalms 91. Each time I find myself worrying, I cry out to Him. I cannot explain the peace that He has poured over me in these past few days as I rely more on the Lord. Even when things seem to be going south, I have been able to find unexplainable peace in knowing that its all in God's hands.

It is awesome to know that nothing surprises the Father. He was not surprised by their birth at 28 weeks. He was not surprised by the test results that revealed that the boys had head bleeds or PDAs. He was holding them in His hands the entire time and still is. I am constantly in awe at His answers to our cries. As Bryce was struggling on Sunday night, so many were praying and crying out on his behalf. On our way up the elevator to the 5th floor and the NICU, Paul and I stopped and prayed that Bryce's stats would be good and he would be "stable" when we entered their pod. He answered that prayer and Bryce, though back on the ventilator was resting peacefully and satting (oxygen saturation) well. When it was revealed that Grant's brain bleed was a grade two, we prayed that his bleed would stop. The past two head ultrasounds since then have been stable - his bleeding has stopped. When I cry out to Him for peace that my boys are in the hands of The Great Physician - that my boys will be just fine - He wraps me in His warmth in a way I cannot fully describe.

I am so humbled by the prayers that are being poured out for our boys by so many, including so many that we have never met. We have been so blessed by the meals that have been provided by dear friends to help ease our burden here at home. With all the back and forth to the hospital and all of the things that we need to have done around the house, not having to worry about meals in addition to that has been such a great blessing. Thank you to all of you that have so graciously taken from your time to help us out in that way!! You have blessed us more than we can say.

Update for Dec 7th

Both boys are doing fine today. They've had a verily quiet night & morning. Grant was started on breast milk feeds of 3mls last night. This morning he was still showing some green stomach bile and when they check his residuals, there's about 2mls so his gut hasn't quite woken up yet. There is a chance he'll go NPO later on today (taken off of breast milk feeds) but it is awesome to see that they are moving forward a little developmentally. He has some thick secretions in his lungs still and does protest a bit when they suction him out but then, so would I. Last night we got the results of his ECG and he does have a PDA as well as a PFO in his heart. Both are small. I'd explain what both mean but I'd botch it. The PFO is something he'll just grow out of. Its extremely common in preemies. The PDA is not uncommon in preemies this young as well. It is usually treated with medication to help close it. With Grant's brain bleed, they're holding off on treating it with medication since the PDA is small. Other than that, he's doing good.

Bryce's hemoglobin and hematocrit levels were a little low this morning so they are transfusing him. He is not liking his respiratory treatments so he does drop his oxygen levels during them but other than that, his stats have looked great. He also has not had any more episodes of bradycardia which is a blessing! His ECG showed a large PDA in his heart so they have started medication. He will have 3 rounds of the medication - one every 12 hours. So far this morning his murmur is still pretty loud after the second dose so there is a possibility that they will need to repeat the treatments. He also has had a quiet morning, otherwise.

Both boys will have a repeat of their ECGs later in the week as well as head ultrasounds. I am so proud of my little men and so glad that they have had such a quiet morning after such a rough few days for both of them.

The Birth and The Days That Have Followed

Last time I posted I talked about the nurses chasing the boys on the monitors. I was in a hospital bed, looking at the possibility of 8 more weeks of bedrest. I would love to still be at that point....

On Tuesday morning, Nov 30th, my water broke. Two hours later my precious baby boys were brought into the world. Bryce was first at 10:49am weighing in at 2 lbs 5 oz and 14 1/2 inches long. Grant was next a minute later weighing 2 lbs 9 oz and 14 1/4 inches long. The pride Paul and I felt when they were born was indescribable. They were so very small but they were perfect. I couldn't see them but I could hear them - two cries clearly protesting their early entrance. It was a sound that I will always cherish. A sound of two 12 week premature baby boys crying. The sound of two babies who came out pink - not purple or blue. That was a blessing for us and allowed us to breathe. Paul followed his sons up to the NICU while I was stapled back together. What has followed in the days since there birth has been a roller coaster of emotions.

Both were intubated upon arrival in the NICU. On Wednesday both had transfusions. Wednesday was a rough day for me emotionally but the boys were doing fine. Bryce was taken off the ventilator switched to a CPAP machine. Grant was not quite there yet. Thursday afternoon as I was helping with Grant's vitals, I noticed twitching. I asked the nurse about it and the nurse practitioner (NP) came in. They weren't sure if it was seizure activity or just premature muscle spasms. A few hours later, he did it again. This time, the episode lasted for several minutes. I felt helpless to fix what he was going through. The neonatologist ordered phenobarbital and a head ultrasound & EEG for the following day. Friday was a somewhat quiet day with only one episode from Grant. Bryce was still stable and happy. Grant is what they call a "touch-me-not" so his stats would drop at each set of vitals so they'd have to up his oxygen levels. He was given a tiny dosage of a sedative to help limit that response. At their 8pm vitals, Paul and I headed down to the NICU from my hospital room to see the boys. The NP was called in to talk to us about Grant's head ultrasound & EEG results. He had a level two brain bleed. My heart hit the floor and I nearly did, as well. There are 4 stages to brain bleeds. It can be an upsetting explanation. I felt like she'd told us we were going to lose our baby boy. I broke down into tears. What do you do with that? While Paul leanined up against his isolate and started praying, I grabbed the phone and went out into the hall to call our pastor. When he said he was on his way, I headed back into the NICU and asked to speak with the NP again. I needed her to reexplain. She said level 2 but my head said level 4. I had shut down shortly after she started explaining things and knew I missed a lot of what she said. Jenni (NP) came back in and reexplained the bleed. I felt a little better about it after that. Its just a 2 - there's not bleeding in the brain matter or swelling. They were going to be watching it closely. Pastor came in and prayed with us and we prayed over my baby boy. Paul and I both felt at peace after that and were able to sleep soundly that night. Saturday was discharge day. We spent the day gathering up my belongings and mentally preparing ourselves for leaving the boys and going home. They had a wonderful day and we were able to leave the hospital with peace that they were ok.

Sunday, things went south. Bryce had up to this point been the "healthy" one. He has pneumonia and a possible heart murmur but nothing that made us feel worried. Grant on the other hand was the one that was struggling. He'd desat (drop his oxygen levels) at his vitals and especially when they suctioned him. He has the brain bleed and seizures and was still requiring the ventilator. Sunday the tables flipped. Bryce had an episode of bradycardia (heart rate dropped into the 40s) at 11am. They continued to occur in growing frequency throughout the day. Paul and I went to their 8/9pm vitals and both were still ok, though they were transfusing Bryce in hopes that it would stop the bradycardia. We left with the boys still looking good. Paul and I climbed into bed that night and Paul was quickly asleep. I had been struggling emotionally so I had a harder time falling asleep. At 10:30pm, just as I was getting ready to nod off I got a phone call from NICU that Bryce was in critical condition, was going to be reintubated and they had found bloody mucus in his mouth. Paul and I immediately headed up to the hospital, calling everyone we could for prayer. As we headed up in the elevator, we stopped to pray and begged God to let him be stable when we arrived. I nearly passed out as I stood in front of the NICU doors, waiting for them to clear us to enter. We were met at the door by the charge nurse, scrubbed up and headed into their pod. Jen (charge nurse) explained that the bradycardia and bleeding were likely separate issues. They had ordered an ECG and had drawn a lot of labs to check for infection. He was started on another antibiotic in the interim. After intubation, his stats looked good. We stayed for 2 hours to make sure that he was not going to have any more episodes and then headed home, relieved that he was resting peacefully and was still with us. We both slept peacefully the rest of the night.

I called around 11:30am today to check on the boys and see if there was any word on the results of the head ultrasounds and echos that both boys had earlier in the morning. Bryce was still doing ok and his test results had not returned yet. Grant was also doing good and the results from the head ultrasound were in - it was stable at a stage 1. Such an answer to prayer! I called Paul with the news and he nearly cried in relief. He had been struggling with the idea of returning to work and this news certainly helped him relax a bit. Grant required another transfusion but it was a small drop and with the blood they have to draw out, that's expected. Later on in the afternoon I called to check on Bryce's results. He has a level 1 bleed on the brain but that is not worrisome. They will keep an eye on it. He had one more episode of bradycardia during the echo but they were pressing on his sternum right below his heart so that is understandable. He hasn't had any episodes other than that. He has a scope ordered for today to see where the blood that was in his mouth is coming from.

We literally live hour by hour right now. Paul and I constantly have to remind ourselves to leave these boys in the hands of the Father. I feel helpless to fix what the boys are struggling with. I want to swoop in and make them all better. My boys are 7 days old today. They are both on ventilators, have brain bleeds and some other minor issues. But they are both doing good for 28 weekers. We are trusting in God and fully leaning on His promises. It will be a long road but we will bring them home healthy and as ornery as ever.

Third Trimester! Wahoo!!

So I am officially into my third and final trimester which makes me very happy! The boys are still looking great and are as active as ever.

My perinatologist came by yesterday evening to check up on me and discussed with me a bit more about what their (my OB & peri) plan is. The main concerns that they have is that a) I'm bleeding and b) I'm already dilated to 3 cm. As far as the bleeding, apparently it can be very unpredictable in pregnancy and can go from nothing to very heavy (as was the case when I came in) and that's a big issue. The other issue - my being 3 cm - is a big concern because my last labor was less than an hour and they don't want to send me home to give birth on the way to the hospital. I figured as much with both and my OB had said as much but at least now I know where my peri stands since my OB said it is ultimately up to my peri as to if they release me prior to delivery.

I will have the steroid shots repeated (did I mention this in my last post??) around 29 weeks. They want me to have ultrasounds weekly to check fluid levels and the boys' positions and growth ultrasounds every three weeks. My peri also said they've officially changed their policies on mono-chorionic twins in that the farthest they'll let me go is 36 weeks so I have 7/8 weeks left at most if these boys hang in there. My OB is having me do my glucose test this week (GAG) also which I'm definitely NOT looking forward to. Hopefully I'll still have an option of something other than orange even though I won't be going to the lab to do it. I do get wheel chair rides 1 hr a day now which makes me SO excited as I haven't been outside since the Tuesday that I came in for the bleeding. Paul was able to come up for a little while and take me outside and I cannot tell you how good it felt to breathe in the outside air (even if someone was totally ignoring the "NO SMOKING" sign. *sigh*

Every day I have an NST (non-stress test) to check on the boys' heart rates and my contractions. They need a solid 20 minute strip on their heartbeats before I can come off the monitor. Almost every single day someone from L&D has to come to the floor and help track down the boys so they can get a solid strip. Thursday was quite interesting during my NST. The floor nurse came in and tried to get me on the monitors. She was able to get Grant on pretty quickly but was having a heck of a time tracking down Bryce. After fighting with it for about 15 minutes or so, she called up L&D and asked someone to come help (they monitor me from L&D Triage). A triage nurse came in, found a heartbeat and went back to watch the monitors. I realized after she left that they were tracking the same baby. So, about 10 minutes later, here comes a nurse from L&D. She tries and tries to find Bryce and then calls for the ultrasound machine to locate the heartbeats. This whole time both boys were moving so we knew both were ok. They just had to have that 20 minute strip. A nurse comes in with the ultrasound machine and they find the heartbeats. However, when they looked at the strip, they were still tracking the same baby so after about 15-20 minutes of trying to figure out where two separate heartbeats were, in came the OB hospitalist. He used the ultrasound machine and found that Grant and Bryce were back to back which explained the difficulty finding two distinct heartbeats. By the time I was able to get off the monitor, I'd been on the monitor for over two hours. I honestly feel so bad for the nursing staff every time the words "they want you on the monitor" are mentioned because its almost always a chase/challenge to get both boys on the monitor and get them to STAY on the monitor for long enough to get a good strip. I'm very blessed to have fantastic nurses who keep a smile even when the boys are being difficult.

So, overall we're doing very well and only 7-8 more weeks at most! :)

Note to self...

Don't read a Christian romance novel when you're in the hospital long term. I was 3/4 of the way through the book and had to put it down because it was making me miss my loving husband. *sigh*

I woke up this morning feeling good. My contractions have been few and far between since yesterday morning when they'd picked up for a couple of hours. The boys have been active as always and keep the nursing staff in and out trying to keep them on the monitors to get a good 20 minute strip (NST). Friday night it took them 3 hours and 4 different nurses to get a solid 20 minute read on either of them. Yesterday they tried in the morning since they seem to be overly active in the evening and ended up having to give up and try again last night. (They do NSTs once daily.) I've got to ornery little boys! LOL They haven't put me on the monitors today so we'll see how it goes.

When Dr. Williams came in yesterday he let me know that I'll be doing my glucose test next week. Blech. At least I don't have to hang out in the lab for an hour for that, right? :) My perinatologist, Dr. Fraser, also came by today. He ordered an ultrasound for either today or Friday to check on the boys' and measure fluid levels to make sure all is well. He also wants me to repeat the steroid shots in another week or two as an additional boost for the boys. This is a pretty new thing that they've studied (this hospital being one of the places they tested at). I have faith that these boys will make it far enough that they won't need the aid of those steroid shots. :)

I have had a lot of guests in the past few days and have so greatly enjoyed the visits. I was even brought some festive decorations to make it feel more "Thankgiving-y" which I love. I got to see Brooklyn for the first time in a week yesterday evening and seeing her brought me to tears. I miss my baby girls so much and was so thankful to get to see her cute little grin and hear her babbling away.

Thank you so much to all of you for your continued prayers and support.

Quick Update

Not a lot has changed since I last posted. The boys are still safe inside my belly and are as active as ever. They really give these poor nurses a run for their money. When they monitor me in the evening, they spend 20 minutes at a time trying to get both boys to hold still long enough to get a good strip. Friday night, I was on the monitor for over 2 hours while they chased them around my belly. LOL

I have been having regular contractions on occasion but they are thankfully not productive. Dr Williams came in to see me today and we talked about the idea of letting me go home before they're born. He has the same concerns as Paul as far as my going into labor at home and not making it here. So as it stands right now, they're still wanting to keep me until the big day.

I'm so thankful for the visitors that I've had and the incredible nursing staff here. I've had a couple of rough nights but I'm so blessed that the boys are still baking and God has given me so much peace about it all. :)

So begins the wait. :)

These twins have kept us on our toes the majority of this pregnancy and this week has been no exception. Tuesday morning I woke up with an incredible amount of pressure and cramping. Started some heavy bleeding around 10:30am. I called Paul to let him know I was going in and Krista picked me up to take me in to L&D (I had locked my keys in the van).

Got checked into L&D Triage around 11:30am. There was a woman in the latter end of labor a couple rooms down so it took a little while to see the nurse but they went ahead and put me on the monitors in the meantime. I was contracting about every 1-2 minutes at that point. The pressure was still quite intense. The nurse came in a short time later and checked my cervix and I was dilated to between 3 & 4 cm. They immediately transferred me over to L&D, started an IV and gave me the first dose of steroids (OUCH)as well as terb to stop the contractions. The put me back on the monitors and I was still contracting pretty regularly. After about an hour, they started me on nifedipine since the terb wasn't helping. Spent the rest of the afternoon & evening being monitored and the contractions had slowed down considerably by that evening. Took an Ambien and was able to sleep well until about 3:30am and then my body decided it was time to wake up. My contractions had picked up a little during the night but they were very spaced out and irregular by morning. The extreme pressure from Bryce was also so much less.

The contractions continued to die down, only picking up as the nifedipine came close to being due. Dr. Williams came by shortly before 10am and told me that I'm going to be here until they arrive which will hopefully be later than sooner. That was a little discouraging to hear but if it means the boys stay in longer, so be it. I had a quiet morning and napped early in the afternoon. I had my second round of steroids at 2:30pm and Dr. Redfern (the hospitalist that checked me Tuesday - he is a fantastic OB. I had him frequently with Brooklyn, too) came in to check me again. He said the pressure from my cervix was gone and there was no more change. WAHOO!! That meant I could have my first real meal since Tuesday morning and then they'd move me to the floor so I could actually see out a window and not have to stare at the infant warmer. Wanted to throw something at that thing. LOL

Around 7pm, I was transferred to my room (one of the same that I was in with Brooklyn, complete with "Rear Window" view) and settled in. Got those lovely leg cuffs to help with clot prevention but I now had bathroom privileges and hopefully shower privileges will come shortly. I was given a heplock after Dr. Redfern checked me so I no longer was hooked up to any cables, tubes, etc. which I was grateful for. I will have daily NSTs but will not be hooked up 24/7 at this point. :) My really good friend, Kim Harrod came by to see me and Paul with all 4 girls in-tow soon followed. I thoroughly enjoyed visiting with Kim & Paul and seeing my sweet girls! They left around 8:45pm and I *tried* to settle in for the night. It actually took me until almost 1am to fall asleep but sleep eventually came. My acid reflux is bad and Bryce is still low so I was up and down throughout the night going to the potty and trying to squelch the reflux but that's ok. :)

I have so far had the same nurses as when I was on the floor with Brooklyn last year which makes me excited. They are such great nurses. :) When my nurse came in this morning to give me my next round of nifedipine, she said that she had put in for me to get a private room (I am in a shared room right now, though I don't currently have any roommates). She said it may be tomorrow or Saturday before I am transferred over but this makes me very excited because a private room hopefully means no more "Rear Window" though I'm still very thankful to have a view and I don't have to worry about having not-so-polite roommates like I had for the first part of my visit with Brooklyn last year. :)

I will do my best to keep this up, like I did with Brooklyn, so I can keep everyone updated on how things are going. :)