Brain Bleeds

Well, we got the results back on the ultrasound of Alyse's brain.  She has a bleed on both sides.  On her right side, she has either a grade 3 or grade 4 bleed, and on her left side she has a grade 1 bleed.  Grade 4 is the worst type, and grade 1 is fairly minor.  Is it possible to have a grade 4 bleed without significant long-term damage?  Yes, it is, but obviously the worse the bleed, the more likely it will be that there will be a long-term issue.  They will repeat the ultrasound in a day or two to see if things have gotten any worse.

Right now they are using everything possible, trying to keep Alyse's stats at decent levels, in hopes that eventually her body will kick back in & start making things work again.  Once again, she has to pee. It's very important that her kidneys start disposing of the waste.

On her chest x-ray today, her lungs looked good, but her heart is small.  It is not receiving adequate blood flow, due to the fact that she's sick, she has leaky capillaries, & the rest of her body is filling up with fluid, instead of pushing the fluid into her heart.

The Alyse of today looks completely different from the Alyse of a couple of days ago.  She's very "puffed up" from all of the fluid they are pumping into her.  Honestly, it's very hard to see her like this.  She's also gone from a very active little baby to one who *might* slightly move a hand or foot occasionally.  She's on pain medication that could be partly causing that, or it could also be because of her brain bleed.

Sadly, with the many, many things going wrong right now, it's hard not to start to lose hope.  I know that God can choose to heal Alyse and turn things around, but I just don't know if that's going to happen.

Holding Steady

Currently, Alyse's vitals are still strong and have been for a few hours; although, she is on a lot of support.  Right now her blood pressure is where they want it to be, which is a good sign.  We have been warned that she is "touch and go," and that she could have another episode at any time.

She had a brain scan earlier, and we're still waiting to hear the results.

We're still praying for that wet diaper...

As I type this, Alyse's blog has over 11,500 hits.  Thank you to everyone who is checking in on & praying for her.

Scary Moment

Alyse just had a major episode.  Her oxygen saturation bottomed out.  Several doctors & nurses rushed in, and she was given oxygen manually through a bag.  After several minutes, they were able to stabilize her.  They put her on nitrous oxide to help with the constriction of blood vessels.

We just came very close to losing our little girl, and it was very tough to watch.

Please keep in her in your prayers constantly today.

Acidosis

We just spoke with Alyse's doctor and surgeon.  She has something called acidosis.  Basically, her body is in shock, her PH is way off, & her kidneys are not functioning.  They are trying everything they can think of, but her kidneys have to start producing urine to get rid of the waste.  As I said before, her profusion is not good at this time.  She will have an ultrasound later today to make sure she has been able to continue to supply blood to her brain adequately and does not have a brain bleed.

If things do not turn around, her heart rate & blood pressure will start dropping, which will lead to heart issues that she will not be able to recover from.  If things do start to turn around, the first good sign will be a wet diaper.

Doing Well

Alyse is currently doing well, post-surgery.  All of her stats look pretty good.  Her blood pressure is a little low, which is a little concerning with everything they have her on to bring it up.  They keep using the word "profusion," referring to the ability of her body to pump her blood to her extremities.  Evidently her profusion is still not that great.

She is all "puffy" from all of the blood and fluids they have pumped into her.  It's very noticeable in her face and neck.  She looks like a completely different baby.

The doctors are very pleased with how she is doing right now.  Hopefully she will continue to trend in the right direction.

Thank you to everyone who has been praying!

Out of Surgery

Alyse is out of surgery.  She had three holes in her colon.  The surgeon removed a section of her colon and placed her bowel in an ostomy bag on the outside of her abdomen.  The plan is to surgically repair the bowel and place it back in the abdomen when she is bigger & stronger.

The surgeon opened up her omphalocele, cleaned out the waste that had accumulated from the perforated bowel, placed the intestine from the omphalocele in her abdomen, and closed.  He said that it's "not pretty" right now, but that it could be fixed when he goes back to fix the colon.  He said that he needed to close right away because her temperature was going down.

She lost some blood during the procedure, and her coloring looks horrible.

We've been warned that it will be a rocky night.

Her doctor just informed us that she will have a head ultrasound in the morning to make sure she didn't develop any brain bleeds during all of the rising and falling of blood pressures today.

Pray, pray, pray.

Having Surgery

They just wheeled Alyse back to surgery.  The surgeon came in and looked at her abdomen and omphalocele.  Her omphalocele has gone from being translucent and gray to opaque and green.  He said it is a sign of a perforated bowel.

The plan is to open an area in her abdominal wall, find the perforated area & take out whatever is necessary, put in a colostomy bag for now, and correct her omphalocele.

This is obviously very risky for a baby of her size, and she's not the most stable right now.

Of course, please pray.

Possible Surgery

Alyse has had a really rough morning.  She is showing signs of a perforated bowel.  They have taken two x-rays, both of which have been inconclusive.  Her abdomen & her omphalocele have changed in color slightly.  Her profusion is not good.  They have having a difficult time getting her blood pressure reading because the blood is not pumping to her extremities as it should be.

We are currently waiting to hear from the surgeon, who is in another surgery, to find out if he thinks she has a perforated bowel & if he wants to do surgery now or wait.

They have given our little girl a paralytic.  It's sad to see her not moving at all...

Please pray.

Up & Down

Since neither of us are at the hospital right now, we have to make frequent calls to check on Alyse. Before last night, we had gotten a good report with every call. When Joey called last night, the nurse said Alyse had just given them a scare.  She said she had extubated her ventilator tube, and that they had to bag her and reintubate. Scary! But the nurse said she was fine, & everything had calmed down.

Joey called again just a little bit ago, & they're having trouble keeping her blood pressure up again. They've put her back on the high-frequency Jet ventilator and meds to raise it.

Keep those prayers coming! Little Alyse is starting to struggle again, & we don't want it to get as bad as the last time.

Back at Home & Missing My Girl

We came back home last night.  It's hard to be torn between two places and two children.  Ethan needs his mommy & daddy, too; so, there's going to be a lot of back and forth for a while.  He's starting Kindergarten in August, & although I had full intentions of working to get him prepared for this new venture over the summer, my extended hospital stay changed those plans.  I sure have missed my little man.

As for Alyse, Joey has called and talked to her nurses several times since we left yesterday.  She is doing very well.  Her most recent blood work showed that her white count is going down.  They have taken her off of the high-frequency ventilator and put her back on the ventilator she was on before "the episode" of the last few days.  They are leaving her on the antibiotics as a precautionary measure, & those will end Wednesday.  Hopefully after that they will start feeding her breast milk.

Once again, thank you for the continued prayers!

The Disappearing Infection

We just spoke with Alyse's doctor and almost all of the signs of her infection have disappeared.  He said he wasn't sure what had happened, since she showed so many signs of an infection and then pulled through it so quickly.  Personally, I'm attributing it to answered prayers.

Although Alyse is receiving breast milk as oral care (small amounts dipped in a Q-tip & spread in her mouth), they are still only feeding her nutrient packets.  There had been talk of starting her on breast milk before everything went haywire a couple of days ago.  Now, the doctor wants to make absolutely sure that she is clear of infection before introducing anything new.

Keep up the prayers!  They're definitely working!!!

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Alyse already has Daddy wrapped around her little finger.

Weaning Off Some Meds

After quite a struggle with Alyse's blood pressure being too low this morning, things have finally started to move in the right direction.  Her blood pressure is actually a bit on the high side now, which is fine... It just means that they need to start weaning her off the meds and find the "sweet spot."

They also switched her to a different ventilator earlier today, which has greatly improved her CO2 levels.  They were too high & now they're too low.  This has allowed them to reduce her ventilator support.

Basically, most of what looked so bad earlier today, now looks a little better.  Hopefully we'll keep moving in that direction.

They've been messing with her so much today that we've had a lot of opportunity to talk to see her & talk to her when the incubator is uncovered and open.  I noticed and her nurse agreed that when we're talking to her she is working really hard to open her eyes.  It's too cute!  It may not be long before we'll get to see those precious peepers.

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Joey & I went out to run a few errands earlier and bought Alyse her first teddy bear.  It's a Build-A-Bear Small Fry.  Her nurse suggested taking her pic with the bear every week to show how much she's grown.

Today Alyse is 1 week, 2 days old.

Rough Nights and Bumpy Days

I called to talk to Alyse's nurse around 6:00 this morning, & she informed me that she had been by Alyse's bedside all night long battling her low blood pressure.  Since yesterday, they have started her on two different blood pressure meds and given her fluid support in hopes to raise it back up.  Since none of these measures were helping at all, her doctor today decided to put her back on hydrocortisone.  He explained to us that they were trying to avoid the steroid because it suppresses her immune system, & since they believe she is trying to fight off an infection, obviously they do not want her immune system to be suppressed.  Unfortunately, since her blood pressure dropped extremely low & nothing else was working, they were forced to put her back on the hydrocortisone.

Since being back on the steroid, Alyse's blood pressure has gotten slightly better, but it's still low.

We talked to her doctor for quite a while this morning about the whole situation.  He told us that there is a better chance of Alyse being able to fight off this infection than her not being able to.  But he told us to be prepared for the next few days to be very "bumpy."

Diaper Change

I got the chance to clean up Alyse's mess for the first time this morning. I never thought I could get excited about changing a diaper. Those teeny, tiny Pampers are so adorable.

Progress Update 07/26/13

Well, Alyse's first week went very well.  Things seemed almost perfect.  However, we were warned over and over again that things would not continue to go that smoothly.  Then, yesterday & today, a lot of small things have started to go in the wrong direction.

They have had to increase her oxygen levels to around 50%, where she had been in the 20% range.  Because of her change in attempts to breathe on her own, they have increased the number of breaths from the ventilator from 35 breaths per minute to 50 breaths per minute.  She was taken off of her blood pressure medicine a few days ago because she was regulating it on her own, but today she had to go back on the meds to raise her blood pressure.  Her PDA (blood vessel in the heart that is supposed to close after birth but often doesn't with young preemies) has gotten larger, and today a heart murmur can be heard when listening to her when that wasn't the case before.  Her platelet count has dropped.  They think that she might have a fungal infection (possibly caused by the antibiotics she was on) & have done a culture, but it could be several days before we know for sure what is going on there.  There's a chance that the vast majority of these things are being caused by some sort infection, whether it be fungal or bacterial.

It's a different world in the NICU.  There's so much going on all the time, & it's so hard to understand even a portion of what is going on...

Please pray that they will figure out exactly what is happening with Alyse so that they can treat her with the correct meds as soon as possible.

One Week Old

On Friday, June 14, at 18 weeks along in my pregnancy, my water broke.  Earlier that day my high-risk pregnancy doctor gave us the scary news that Alyse had an omphalocele, which means some of her intestines had stayed in the umbilical cord instead of retreating to the abdomen earlier in the pregnancy.  We already knew Alyse had an issue, but we had been told it was most likely gastroschisis in the weeks prior.  Gastroschisis is very similar to an omphalocele, but omphaloceles are very commonly associated with fatal chromosomal issues, while gastroschisis is not.  With this new information, and the fact that the doctor saw a couple of other "markers" that could point to additional issues, it was recommended that we have an amniocentesis to rule out or be prepared for other things.  We were told the chance of my water breaking after the procedure was 1 in 1600, since it was being completed by a highly-trained professional.  After the procedure, the doctor told us it was as straightforward as it could have been, and that we had nothing to worry about.  One hour later, while eating at Cheddar's restaurant, water started gushing down my legs.

The weeks following were crazy.  I spent the next 34 days in the hospital at St. Mary's in Evansville.  There was one attempt to send me home on bed rest, which led to complications and had me back in the hospital after four hours at home.  After my water broke, it resealed, built back up, broke again, and built up again.  In my last days at St. Mary's, it had built back up to the higher end of normal.  Everything was looking like I could carry Alyse for weeks and weeks to come.

Because of Alyse's omphalocele, my doctor wanted to transfer me to St. Louis once I was 23-24 weeks along.  I needed to be in a place with neonatal surgeons, whenever Alyse decided to make her arrival.  We decided on St. John's Mercy as our hospital, and I was all set to transfer to their Antepartum Unit on Thursday, July 18.  But then things changed quickly...

In the early morning hours of Wednesday, July 17, my body started telling me something was very wrong.  I had been contracting more frequently, my blood pressure was rising, and I started to feel like I had a case of heartburn that was 1000x worse than I had ever experienced.  We soon discovered that I had developed HELLP Syndrome, a form of preeclampsia, which stands for: H (hemolysis, which is the breaking down of red blood cells), EL (elevated liver enzymes) and LP (low platelet count).  The only cure for HELLP is to deliver the baby, and if not acted upon will be fatal to the mother.  So, I went to St. Louis a day early, by life-flight.

During my very long, scary, and painful labor, I never dreamed that Alyse would still be with us one week later.  She was born at 22 weeks, 6 days.  When I was pregnant with Ethan, I had been told over and over again that 24 weeks is viability for a baby.  In my mind, Alyse was just too early to survive.  I had no idea that my little 1 lb, 8 oz baby would be such a fighter.

One week old.  She has defied the odds and survived seven days.  And although she's still an "hour by hour" baby, we feel so blessed to have had her in our lives for a full week.

Thank you to all who are keeping Alyse in your thoughts & prayers daily.  Prayer changes things.  Believe in miracles.  I know I do.