Thursday, April 28, 2016

April 28, 2016

It's been a few days since we've posted anything. Gary was here in Birmingham and I was home with the kids and my parents for a few days. He and I came back Tuesday evening.
Zeke has had a rough few days, and we've gotten a lot of information that we're still processing.
Over the weekend, they did a head ultrasound, since brain bleeds are fairly common in preemies. They found that he had a Grade I bleed in the right side. It's mild and they're not really concerned about that. They also found that he's got some cystic areas in the white matter of his brain, called PVL (periventricular leukomalacia). This is more prominent on the left side of his brain. PVL is one cause of Cerebral Palsy. Right now, the PVL is fairly mild, although any kind of damage to the brain like this isn't treatable. They'll follow up every two weeks with repeated head ultrasounds to monitor the damage.
They believe that the PVL is possibly being caused by his difficulty keeping his blood pressure stable. He's had chronically low BP, and is on Dopamine to try to keep it up, but he's on the maximum dose for his weight, so as of today, they've added Vasopressin, which is another medication used for raising BP.
His swelling has been increasing throughout his body, but especially in his abdomen, and we were all becoming more concerned about it. They ordered ultrasound and xray this morning to try to see whether it was just the tissues expanding or if there was fluid built up in the abdomen. They did see a large amount of fluid, and were able to use a needle and syringe to extract about 80mL of fluid. That has been sent to be tested and have cultures done to determine whether it is just fluid, or if it is infection. He's currently on a 14-day course of three different antibiotics (Gentamicin, Vancomycin, Flagyl) since his surgery last week, but if there's so much fluid built up that, if there is infection, the antibiotics wouldn't be able to treat it.
The fingers on his right hand are still discolored, with his ring finger being the worst. That fingertip, from the nail bed up, is almost entirely black. His middle finger was worse, but looks better today than it has. They've been using a nitroglycerin cream to try to clear any microclots that may have moved and gotten caught in his fingertip. They're also hoping that the new BP med will help with that as well.
He is having some urine output - about 40mL per day. They've sent that for testing. With him being on dialysis, the machine is doing most of the work his kidneys should be, but there is a very small amount of kidney function. We asked the nephrologist (kidney dr) today whether there's any chance of the kidney function improving, and he said it's not likely, but there is a very small chance that it could. The last time they had to change out the dialysis pump, they tried to leave him off for a while to see how he'd respond, and he didn't like that. In order to get a good, accurate reading of his actual kidney function, he'll have to be off dialysis for a period to see the quality of the urine.
As of last night, he still hadn't had more than a bit of mucousy fluid out of his colostomy, so they gave him some oral medicine. They'd said he might spit some of it up since he's not used to having anything in his stomach. About 45 minutes later, he was spitting up quite a bit. We suctioned it from his mouth and nose as it came up. They'd decided not to do that again. Today around noon, as the surgeon came in to extract the fluid from his abdomen, he'd had some more solid output from the colostomy, which they're really happy with.
The struggle with having any infection in the abdomen, other than the fact that it's infection, is that it causes scarring, and that makes it more difficult for the peritoneal dialysis to work, once he's big enough and stable enough to be on that. So they're trying to keep that to a minimum.
Over the past several days, he's been fairly agitated and restless, so they put him on a low dose of Versed, in addition to the Fentanyl he's on for pain management. He's also still receiving the HAF (electrolytes, etc...), lipids (fats), and the heparin (blood thinner) with the dialysis.
He's still on a decent amount of Oxygen - he was up to 100% again last night, but right now is down to 40%, with a ventilator rate of 55rpm. He's still needing fluid boluses, as well as blood transfusions to keep his hematocrit up to a normal level. It's normal for any newborn to have low hematocrit for the first few weeks while the body is getting rid of the fetal red blood cells and making new ones, so hopefully in the next few weeks his body will start producing an adequate amount of rbc's and he'll be able to cut down the amount of blood he needs to receive.
They did switch his dialysis machine out today with no issues. They're leaving 5mL of fluid on per hour until he's more stable and able to tolerate in=out. The goal is to remove a small amount of fluid during dialysis and get his swelling and his weight down (right now he's at 2350g - his birth weight was 1440).
We're just hoping that the new med will help get his blood pressure stable, that his finger will start looking better, and that the fluid inside his abdomen was just fluid and not infection.
I'm sorry if this is really choppy and doesn't make much sense... It's hard trying to relay all of the information we get. We still appreciate the prayers and positive thoughts. Gary and I are headed home this afternoon to see the kids. I'll be back Saturday evening, so unless something happens, good or bad, we probably won't have another update until sometime on Sunday.


April 27



Sunday, April 24, 2016

April 24, 2016

Zeke is still continuing to recover from surgery. He hasn't had anymore significant complications since, but he has been somewhat up and down. His belly continues to swell up, but after speaking with the surgeon, it's fairly expected after the procedure he received. They conducted a ultrasound of his belly and found a pocket of fluid and a possible encapsulated abscess (essentially isolated puss/infection). The surgeon said it was normal and he's already on antibiotics which should contain the infection. Right now they're just going to continue to monitor it, but it doesn't require any other intervention at this time.
They also conducted an ECHO (heart ultrasound) to try to find out what was going on with his fingers. They didn't find anything abnormal that would explain why they are purple. After speaking with the nurse practitioner, they're really just going to keep watching it, especially since it's now only on two fingers and the size of the discolored area has decreased. The nail beds have darkened though and are a deep purple, almost black color. The NP said that it could be a thrombus (blood clot) that broke off one of the multitude of catheters he has in him, but it's not getting worse so they're just going to wait and see how it develops.
During the ECHO, they did see that he has a PFO (a small hole in his heart). It's fairly common in premies so they're not worried about it and it wouldn't be causing any of the other issues that he's having. Again, they're going to continue to watch it and hopefully it will close on it's own in a couple months.
All of his stats are still the same, O2, ventilator rate, etc. His blood pressure was up and down yesterday and because of that they had to leave some fluid on during his dialysis which has caused him to swell up a little more. The kidney doc wants to be more aggressive today as his BP has stabilized and try to take more fluid off to reduce the swelling, especially in his abdomen.
All in all, he continues to recover well from his surgery. The doctors are all quite impressed with his recovery so we've been very blessed so far.

April 22



April 24




Wednesday, April 20, 2016

April 20, 2016

Yesterday morning we were informed that Zeke was going to need surgery. They weren't sure what the issue was, but that he had an accumulation of air in his abdominal cavity. The surgeon believed that he had a perforation in his bowels that was allowing air into his abdomen. They wanted to perform a colostomy where they remove the damaged portion of intestine and sew the end of the healthy intestine to the abdominal wall so that any stool empties outside the body into a colostomy bag.
Ezekiel was taken down around pre-op around 1145 and we met with the surgeon and anesthesiologists that would be working on him. The length of the surgery was dependent the amount and severity of the issues they found, so we were expecting multiple hours for it to be completed.
They started the procedure at 1230 and we got to hang out in the waiting room for them to call with updates. At 1330, the surgeon came and found us, and we were concerned that it had not gone well. We didn't expect it to go that fast.
The surgery went extremely well and was fairly straightforward. Once they started the procedure, they found that he had a perforation in the colon wall just above his rectum. That perforation had allowed a large amount of stool to pool in his abdominal cavity, which is why he hadn't pooped since he was born. They flushed all of the stool out and performed the colostomy, suturing the lower part of his intestines to the abdominal wall.
The surgeon explained that there were two possible causes of the perforation. First possibility is that he has Hirschsprung's disease, which is where portions of the intestines develop without the nerves that cause the bowels to contract and move stool through the intestines. The other possible cause is that since he was premature and had other developmental issues, there may have been a section of bowel that did not receive adequate blood flow and didn't develop properly. They removed a section of his bowel and sent it to the labs for a biopsy to determine if it was Hirschsprung's or not.
During the surgery, they also found that his bowels were malrotated, meaning that during their development they had twisted. The surgeon corrected the twists in the bowel and stapled it into place to keep it from reoccurring. The condition can be fatal in newborns, so it was a blessing that they had to conduct the surgery and found the malrotation.
They also found that his bladder was full of urine. The catheter that was initially placed had come out and was not draining. He's continued to produce small amounts of urine overnight. This is very encouraging as it gives us the hope that he may have some remaining kidney function. We still don't know yet what the quality of the urine is which will determine the actual function of his kidney's.
It's now 24 hours later and Zeke is doing extremely well. He was very unstable yesterday prior to the surgery with Brady's (heart rate drops) every couple minutes and as low as 60 bpm (normal is from 120-160 for him). He hasn't had a single Brady since we came in this morning. Last night he was on 70% O2 and 60 rate on the ventilator. Overnight he's weaned down to 27% O2 and 50 rate. He's back on dialysis with no issue. His poor belly is finally back to a more normal size and the swelling throughout his body has gone down. He does have some sweet scars now though.


Tuesday, April 19, 2016

April 19, 2016 - Surgery Day

Gary and I got a call this morning when we were getting ready to come over to the hospital. They were concerned about how swollen Ezekiel's belly was, so they did an xray and found that there was a lot of air accumulated. This means there is likely a perforation in his intestines somewhere, which is letting gas, and possibly bacteria, leak into the abdominal cavity, which is obviously not good.
They're taking him down to surgery within the next hour. They'll look for the problem, and once they find it, the plan is to remove that section of bowel. The surgery comes with a lot of risks, not only during and right after, but it also will have an impact on his ability to receive peritoneal dialysis.
Please pray for Ezekiel, and for the doctors. He's a fighter, and we believe he'll get through this. We'll update as we can.


April 19
Pre-Op


Post-Op


Monday, April 18, 2016

April 18, 2016

Yesterday was a pretty rough day for Zeke.

They had a larger tube with two smaller catheters (one for blood to go in, one for blood to go out) inserted in his umbilical vein, (called a UVC - umbilical venous catheter) which is what they've been running the dialysis through. They were afraid that it may clot, because that's what the umbilical vein/artery tends to do. The dialysis machine can only run for up to 72 hours, and then they have to switch it out. He was due for a new pump yesterday morning. They got everything all changed over, and after running for about 30 minutes, the pump stopped working because there was a clot in one of the catheters. They put some blood thinner/clot dissolver in the line and left it for a few hours. They tried again, and they were getting some blood return, so they turned the dialysis machine back on. Again, it ran for about 30 minutes before it stopped. They decided to leave the thinner in the line and try again after about 6 hours. They still weren't getting enough blood flow, so they wanted to leave it overnight and try again this morning.

He was receiving lipids, extra calories, electrolytes, etc... through his IV, and was also getting a small amount (1mL/hour) of breast milk through an OG (oral gastric) tube. He was tolerating this all extremely well, but when they had to turn off the dialysis, they took everything extra out, and had him on a minimal amount of clear fluids. Even with the IV fluid reduction, because he was off of the dialysis all day, poor Zeke was retaining so much water and swelling so badly. His blood pressure was dropping, down to the 20's, and they had to increase the amount of oxygen they were giving him. He got up to 60% oxygen. We were really starting to worry, with the low blood pressure, because that's what was happening on Monday in Pensacola, when he had the cardiac tamponade (air around his heart) three times, where they had to remove the air with a needle, and said that he likely wouldn't survive. They had done a chest xray about an hour before and said that everything looked ok, so they started him back on dopamine to increase his blood pressure. It did the trick, and he was stable for the rest of the night.

When they tried to pull blood through the line this morning, it was still clogged. They talked to surgery about putting a line in his neck (called a vascath) that goes into his jugular, and that's how they'll run the dialysis. They've tried to avoid this, since it's more invasive than the UVC, and they're hoping to use the UVC for longer. Surgery was backed up this morning, so the doctors that were in this morning decided to remove the UVC that was clogged and attempt to insert another one. These don't often work for very long, but the longer they can use a UVC, the stronger he can hopefully get before needing another surgical procedure to place the other catheter.

They were able to get the new UVC in, they got good blood flow through it, and his dialysis was turned back on today around 2pm. He's had some issues today keeping his body temperature up, which was happening when he was on dialysis before. They put the heating pad back in his bed, and turned the heater in the bed up as well. We're hoping that he can get his temperature regulated and keep it up.
His blood pressure was looking really good, so they discontinued the dopamine this morning. He kept his blood pressure up all day. He was also keeping his oxygen saturation up, so they were slowly lowering his oxygen levels. He was down to 42% when we left at 5pm. The respirator is still set to 60rpm.

He was having a lot of trouble with his heart rate dropping (bradycardia) today though, dropping down to 70's and 80's at times. They said there could be several reasons he was having brady's - the increase in fluid he was retaining, his low body temperature, the position of his breathing tube, etc...
We've had a rough couple of days. Gary and I are both pretty exhausted and overwhelmed. We're still on the waitlist for the Ronald McDonald house here in Birmingham, so we've been hotel hopping, which is getting old. But we're so blessed that we're able to be here, and have amazing family and friends to take care of Ryker, Zadie, and Ezra.

At this point, we're praying that the UVC stays good for a while, that he continues to tolerate the dialysis and they can increase the amount of fluid they're removing, and they can restart and increase the amount of breast milk feeds he's getting. Once they get a lot of the fluid off him, he should be more stable and able to wean off the ventilator faster.


April 17
Daddy's Hand




April 18
Papa's hand


Saturday, April 16, 2016

April 16, 2016

I have a few minutes to type up another update.
Wednesday afternoon, we had another meeting with some of the doctors. They said that they had talked to the doctors in Birmingham, and they were willing to accept Ezekiel. This was huge, because Monday and Tuesday they had asked, and had been told no both times. They weren't willing to take on a 'lost cause', basically. So the fact that he was doing well enough on Wednesday that they were willing to take him and try, was huge.
We were basically given an ultimatum at that point. There was nothing else they could do for him in Pensacola. His toxin levels were rising, and there was nothing they could do to help that. The only thing they could offer us was to keep him on support until we were ready, and at that point, remove him from the support and spend whatever time he had left - minutes, maybe hours - with him, holding him, take him outside, etc...
They weren't totally convinced he would survive transport. Even if he did, they had never successfully done dialysis on a baby this small. They had never even attempted a baby his size. We were looking at a zero success rate. Even if he could withstand the dialysis, they gave him less than 5% probability of surviving to a year.
Five percent is better than zero. One percent is better than zero. We would take the chance that he MIGHT survive transport, that he MIGHT be able to tolerate dialysis, that, by some miracle, he MIGHT live to see his first birthday if we transferred to Birmingham, over the knowledge that if we chose to stay in Pensacola, none of these things would ever happen.
We took Wednesday evening to weigh the pros and cons of both options. Would it be better to keep him comfortable for the rest of his life and let him go? Or should we try to save him, knowing how much he would go through in his life. How much poking, prodding, how many procedures, etc... he would endure. We chose life, as we have since we first found out about his condition.
They flew him to the Children's hospital at UAB on Thursday afternoon. Gary and I drove up that day and arrived around 9pm. When we got here, they were already running some tests and getting things ready to start hemodialysis. They inserted a new catheter into his umbilical artery for the dialysis, which sometimes will work, but a lot of times they'll have issues since the dialysis catheter is so much larger than the typical umbilical catheter. They got it in with no problems.
That night, they also tried again to insert a catheter into his bladder and couldn't get it in, so they inserted one surgically through his abdomen just above his pubic bone.
Around 11pm they began prepping for dialysis - blood transfusion, starting machines, getting fluids ready, etc... They finally started the machines at 2am. It was surreal, several doctors, nurses, and other people standing here watching, hoping it would work. They told us that generally, when dialysis is started, the baby's vitals will change - heart rate, oxygen saturation, etc..., and with him, nothing changed. They couldn't even tell from looking at him that they had started. Gary and I didn't sleep much, if at all that night. Nurses and doctors were constantly coming in to check on him, check the machines, etc... He is the smallest baby they've ever tried dialysis on at this hospital, and so far, he's tolerating it extremely well. Right now, they're doing in=out, so they're not pulling any extra fluid from the blood. They're waiting to make sure he tolerates this well. He's receiving Albumen, which helps draw extra fluid from the tissues into the blood, which will hopefully bring some of his swelling from water retention down.
Yesterday during rounds, they ordered a few tests. They did a head ultrasound to look for brain bleeds (which can happen with any preemies, but especially if they're on blood thinners, which is is for the dialysis), another chest xray, and some other blood tests. The head ultrasound showed a mild (grade 1) brain bleed outside the ventricles. They're not super concerned at this point. They'll do another one at 30 days, but said that the majority of brain bleeds happen in the first week. The chest xray showed that the chest tube they had inserted to relieve the pressure from around his lungs had moved and was no longer working to suction, so it was basically doing nothing for him other than adding another source of potential infection, so they decided to remove it. They also added a PICC line (in his left arm) and another IV (in his head), to give extra blood, medicine, fluids, etc... They have him on iv fluids, lipids (fat), a fluid to add extra calories, as well as the dialysis fluids.
When we came in this morning, they had decided to start giving him oral feeds (through an oral/gastric - og - tube). Right now he's getting an extremely small amount - 1mL per hour - but so far he's tolerated it without spitting up or any other problems. The nurse said that since she started that, he seems to be a bit more content and less restless.
His temperature is up and down, so he's got a little heater underneath him, in addition to the heated air in his isolette.
He's a little jaundiced, so they started him under the lights this morning, and have the shades on his windows open so he's getting some sunlight as well.
He's had to receive blood because his hematocrit levels are dropping from the dialysis, but they said this is normal.
He's still on the ventilator, 60 respirations per minute, at 42% oxygen.
The goal here, is to continue hemodialysis (cleaning the blood) until he's big enough to receive peritoneal dialysis (where they put fluid into his abdominal cavity through a port, the fluid cleans the blood via the capillaries, and they drain the fluid and add new). They'll do this constantly in the hospital until he's big enough, and at that point he'll be able to come home and just do it at night. This usually doesn't happen until the baby is the size of at least a 6 month term baby, so it could be quite a while before he's able to come home.
Now that things are more settled, I'm going to try to be better about updating daily. Things will change a little bit here and there, but we're hoping that everything will stay as stable as it is, and just get better.


April 14
Moving Day





April 15
Crazy setup at Children's of Alabama



April 16
Getting a suntan


Thursday, April 14, 2016

April 14, 2016 - Move to Birmingham!

I'm mobile, so this won't be a super long post. I'll update more when I'm on the laptop.
Gary and I are on our way to Birmingham. A transport team came via jet around 2pm to pick up Ezekiel and take him to UAB. He's doing well enough that they were comfortable transporting him, and the doctors at UAB were willing to attempt dialysis.
He's definitely not out of the woods yet, but this is definitely am improvement. Everyone's prayers are so appreciated. I really believe thatit's only by the grace of God that he's still with us today. He's a fighter.
Ryker, Zadie and Ezra are all doing OK. They're with some friends of ours. It's tough for all of us, being separated like this, but they're troopers.

Tuesday, April 12, 2016

April 12, 2016

It's been a rough almost 48 hours, literally an emotional rollercoaster. Things have been up and down and back up and rock bottom.
Zeke's right lung collapsed Sunday night, likely from the ventilator pushing too much air, causing some of the little air pockets in the lung to burst. This let the air out, and it surrounded the lung, filling up the space with the air that should have been inside. They inserted a catheter to remove the air, and it worked for a while, but they ended up having to insert a chest tube into the right side of his chest.
He seemed to be doing ok on Monday, so Gary went home to let the dogs out and see the kids. He hadn't been home very long when he had to come back. Zeke's blood pressure was dropping really low and wasn't coming back up. The doctors were really concerned. They did a chest xray, and found that there was a lot of air collecting around his heart, which was causing it to not work well enough. They had to insert a needle into his chest and draw the air out for his heart to work. They did this the first time a little before 4:00pm. His blood pressure was dropping again by about 4:30, so they did another chest xray, same thing, so they stuck him again. After the second time, they told us that if they had to do it a third time, he was unlikely to survive. Around 5:30, we were at that point again. We told the doctor to do it again, because we weren't giving up. They did another chest xray right after the third time, and she said air was already starting to collect again, and that if we wanted to hold him, now would be the time, because they would not do it a fourth time.
So around 6:00, they took him out of his isolette, all his cords, tubes, wires, and hardware, and we held him for the first, and what we all thought would be the last time. We watched the clock, and watched the numbers on the monitor, waiting. Finally, it was 3am, and his numbers were ok. Not great, but we still had him, so it was good. We had passed a major hurdle. Nobody expected him to make it through the night. They had a photographer from Now I Lay Me Down To Sleep come in and take pictures for us, they did footprints, we were prepared to say goodbye. But it wasn't his time to go.
Today has been a rough day. We're constantly battling what's best for him, fighting the odds, not sure what's going to be next.
He still hasn't peed yet. He's on a high volume of fluids, but it's not working like they hoped it would. They did another bladder ultrasound, and there looked to be more urine than yesterday, but yesterday they couldn't get a catheter in. As Gary and I were leaving tonight to get dinner, the urologist came in to try to get one inserted. If he's making urine, which it looks like he may be, they want to test it to see how 'good' it is - whether his kidneys are actually filtering or not. If they can't get the catheter in, they may be able to do bladder taps (like what they did when he was in utero), where they insert a needle into his bladder and drain the fluid. They'll send whatever urine they can collect, through the catheter or bladder tap, in for testing to see what the next step is. His potassium levels are pretty high, which isn't a good sign for the kidneys.
At this point, he's not stable enough to transport for dialysis - they're not sure he'd survive, even with all the machines he's hooked up to. He's too small for them to do it here, and unstable enough that they're not sure if even a larger hospital will take the chance. The lung issues are huge, and would be huge on their own, as well as the kidney issues. Combined, it's not good at all.
At this point, we're relieved to have jumped the hurdle last night. He's still with us, and that's so much more than we were expecting. He's still on a high frequency ventilator that's breathing for him (even though he'll occasionally try to breathe over it), as well as oxygen. He's gone from 100% oxygen late last night/early this morning, down to 27% (room air is 21%), and it was back up to 35% when we left earlier. He's on a few different medications to try to keep his lungs open, keep his blood pressure stable, as well as an antibiotic, fluids, etc...
We'll try to update daily, but at this point, being with Zeke is the most important thing for us. We're not answering phone calls or texts from anyone other than our parents and the people who have our kids (who are doing fine, btw). It's just too much. We love you all, and are so thankful for your prayers and support.
**UPDATE**
They weren't able to get the catheter in. They'll do another ultrasound tomorrow morning, as well as another chest xray. If there's enough fluid in his bladder, they'll attempt to drain it with a needle.

April 12





Monday, April 11, 2016

April 11, 2016

Ezekiel Martin Austin (Baby Zeke) couldn't wait to join our family. He barreled into the world in a hurry, butt-first on April 10 at 9:12pm, at 29 weeks 3 days. He was 3lbs 3oz and 16in. He didn't wait for Dad, didn't even wait for the Dr, and definitely wasn't waiting for a c-section.
Not for the not fun news. 
His lungs are really small and severely underdeveloped. He wasn't breathing on his own, so he's on a ventilator that's breathing for him, and medicine to try to help his lungs work. They're not sure about kidney function at t his point, either. They did a renal (kidney) ultrasound this morning and it didn't look good. He still hasn't peed yet, which isn't a good sign. They couldn't get a catheter in, so if he hasn't peed by this afternoon they'll do another u/s to see how much fluid is in his bladder and see whether they want to have the urologist try to put a catheter in. The preliminary testing they did doesn't suggest that he needs dialysis right now, which is good, because most places wouldn't do it on a baby this small, especially with lungs in this condition, and they don't know that he'd survive transfer to another facility. They're increasing his iv fluid intake in hopes that it will help with the kidneys. He's stable for now, but it's all very touch and go, and if his lungs aren't working, there's nothing they can do.
Please keep him in your prayers. He could use all the help he can get. We'll try to keep the group page up to date with info so it's all in one place. If you're not on there and would like to be, let me know.
Fun fact. Gary picked the name. Ezekiel means "God strengthens", and Martin (after my dad, brother, and grandpa) means "warlike". This guy is a fighter.





Sunday, April 10, 2016

Sunday, April 10, 2016

6:10pm - I've been having pretty strong contractions off and on since Wednesday afternoon. They've been able to get them to stop with a pill every 6ish hours, but that's not working today. I'm dilated about 3-4cm. They're putting me on magnesium to try to stop the contractions. If it doesn't work they'll move me up to labor & delivery tonight to keep an eye on things. If I keep dilating they'll do a c-section because the baby's heart rate is dropping with the stronger contractions.


7:50pm - On meds (mag) to try to stop contractions and protect his little brain. Started another round of steroids for his lungs. Praying this little guy stays put for a few more weeks. 29 weeks 4 days today.



Friday, April 1, 2016

28 Weeks

I hit 28 weeks this week. Also, tonight will be night number 18 here. 2 1/2 weeks down. Going into my third weekend. And I'm not completely crazy yet.

This week had ups and downs. Sunday was Easter and Ryker's eighth birthday. I was pretty bummed that I wasn't going to get to spend the day with the fam. I was sad to miss the Easter egg hunts, to miss church, not to get to see the kids in their new Easter outfits, to miss Easter dinner and Ry's birthday dinner. I wanted to be home SO BADLY. Gary's mom spent spring break here to help with the kids, and she was flying out Sunday morning. They decided to come here and spend the morning with me instead of going home and going to church. Gary had brought over the stuff for the kids' Easter baskets for me to put together, and I had them all ready when they got here. They were really excited - they all got new bike helmets, and some little toys and candy. We had cake and gave Ryker his present from my parents out in the courtyard. It was pouring rain, but the kids had fun playing in the box that Ryker's scooter came in. We hung out and watched movies for a while, and they left. It was so nice to get to spend part of the day with them. There were just a few pictures (they forgot the camera), no fancy Easter clothes, or dinner, or egg hunt. Just a low-key morning hanging out together.

 

I had ultrasounds Monday, Wednesday, and today, like I have the past two weeks. On Monday, there was fluid in his stomach and bladder for the first time since I've been here. At the end of the ultrasound, his bladder was empty, so she looked for fluid, and found a 7mm pocket. I was pretty happy about it; hopeful that they'd be able to infuse fluid into the tiny pocket, but it was too small. There was fluid in the stomach and bladder on Wednesday, and again today, but no other fluid around the baby either day. I talked to the MFM and my OB, and there's got to be fluid somewhere around the baby, at some point, because he's getting it from somewhere to swallow. We're just not sure what's going on.

Monday morning, Zadie lost another tooth!


Gary and Ezra went to the beach on Monday, and then came to see me. I seriously love when they come!


My awesome friend Jill sent flowers and a bag full of goodies on Tuesday. Lots of yummy snacks, and a coloring book and colored pencils to keep me busy.


On Wednesday, Dr Doom came in and woke me up. I wasn't having an awesome morning to start with, and he was really the last person I wanted to deal with. I was hoping he'd let me sleep, but no luck. He started talking about how they were "concerned that the baby's lungs were severely underdeveloped because the ultrasound was showing that his chest was measuring small," they were "concerned that there seemed to be fluid around the heart," and they were "concerned that he would have zero lung function," and a few other things. I just said 'uh huh' and nodded, because I wanted him out. None of what he said made any sense or coincided with anything anyone has said the entire time I've been here. The last time they did measurements during an ultrasound was on March 15th, and everything was measuring normally, except for the kidneys and bladder, which we were expecting anyway. He was measuring right where he should be - at about 65-70th percentile. So I was ridiculously confused and frustrated. When Dr B came in on Thursday, I told him how I was so frustrated and angry, and that I didn't want to see Dr W anymore. I explained why, and he looked at my ultrasound and said everything looked fine, and not to worry.

A super sweet friend and her cute little boy came for lunch on Wednesday, which was the absolute highlight of my day.

And an awesome friend of ours has been watching Ezra while Gary has been going to work a few times a week. She brought him and her two sweet little girls down for lunch on Thursday. It was nice to visit with her, and I really enjoyed having more one-on-one time with Ezra. We hung out in the courtyard (a common theme when people come to visit), and caught bugs.


I've been doing NST's (non-stress tests - basically an hour on the monitor) one hour, every six hours or so, throughout the day. I went on the monitor Thursday afternoon around 5:00 and came off a little after 6:15. They came back in around 6:30 and told me that baby's heart rate was down longer than they wanted it to be, so the dr wanted me to go back on for an hour and see what he did. Apparently it happened again, so they put me back on for another two hours. Happened again, so they decided to keep me on the monitor all night until I could have an ultrasound today. The nurse came in around 5am to adjust the monitor, because I had rolled over and they lost his heartbeat. I told her that I couldn't... I was tired, I hadn't slept most of the night because I was uncomfortable, and the monitor was irritating my skin. She took me off. I went back on around 9:00am. Dr Medlock came in while I was on the monitor and talked to me for a while. He said everything looked fine, exactly what he'd expect, and that he wasn't too concerned. We talked about my frustration with being here, and after that conversation, I felt a lot better. I had my ultrasound around 2pm. No ultrasound pictures from this week. They'll do a longer scan next Monday or Wednesday, and actually do measurements and estimate baby's size again. Hopefully they'll be able to get a good image to print for me then. :)

Back in the middle of February, we ordered a new car. They had told us it would be 6-8 weeks before it came in. Gary got the call on Monday that it was here. He went in today and traded the Pilot in for my new Traverse. I'm so excited to see it when they come visit this weekend!


As of Wednesday, I'm 28 weeks. Just two weeks from 30, which is the first, 'soft' goal. At 28 weeks, the survival rate of a healthy baby is about 75-85%. At 30 weeks, which is when Ezra was born, survival is 90-95%. There's still the question of lung development and kidney function, neither of which we will know until after he's born.

When I was talking to Dr Medlock, he had mentioned that if I was really adamant about going home, he wouldn't be incredibly opposed to it, but it would have to go through MFM. I don't think that, even if the doctors said I could go home, I'd be comfortable leaving. If something serious happened and I was at home, I'd regret it forever. As much as I hate being here, I'm more comfortable and reassured that we're doing everything possible for this baby. Part of me, the 'good mom' part, the patient part, the logical part, wants to be here as long as possible. At least until mid-May. May 11th, I'll be 34 weeks. That's an awesome milestone... That's 5 1/2 weeks from now. That would put me here a total of 8 weeks. Every day that I'm here helps the baby so much. I've been here this long... I'm in it for the long haul.

The selfish, less logical, frustrated, homesick part of me wants to go home. The control-freak part of me wants the baby to just come. I can't stand the not knowing. I hate not knowing what we're dealing with, not having a plan; I hate everything being "what if" and "maybe" and "hopefully."

I need to be here for this baby. This baby, right now, is my priority. The other kids have Gary. They're in their routines, they're fine. I need to focus on staying sane, staying healthy, and keeping this baby inside and growing as long as possible. We'll deal with what's coming when it comes. I can't rush things. I need to focus on staying positive. I need to cry when I feel like it, get it out, and get on with my day. I need to do things to keep myself busy,

Prayers, good vibes, whatever you can send our way, are still appreciated. We're feeling all of the blessings with every day the baby is still alive and safe, with every day I've still got a shred of sanity, with every day Gary and the kids get where they need to be and accomplish the things they need to. We are so very grateful for everyone who has helped us out so far, for the love and support, the visits, the phone calls, the text messages, the gifts, the meals for my family, the people helping out with my kiddos and giving Gary a break... For all who have offered help and haven't been given anything to do. We're trying to be as self-sufficient as possible right now, because we don't know what's in store for after the baby's here, and we're likely to need a LOT of help then. We are so thankful to be part of families and a ward and a community that are all so willing to help us out. We feel the love, and hope to be able to repay it one day soon!