Our son had a sudden and unique start in life, and he faced (and overcame) innumerable challenges in his first three months on this earth.  These posts tell his story in the Neonatal Intensive Care Unit, and share our family's struggles, hopes, fears and praises along the way.  Thank you for reading!

These posts are in reverse chronological order, starting with his birth and continuing until he came home from the hospital.  To read them from the beginning, scroll down to the bottom of the page and click on "older posts" until you get to the first one, and then read from oldest to newest.

Home Sweet HOME

We're Home.  All of us.  Together.  Since my son's blood pressure was stable, and we weren't having any problems, the doctors decided we did not need to stay another night, so we were actually discharged yesterday, February 15.  It was a long day, because there was SO much that had to be done before he could go home, but we got it done, and now we're home.  Home, sweet home.

We said goodbye to this:

And this:

 

And especially this:

And packed up our little guy to go home.

 

I still can't believe that after 97 long days, it's finally over and he's HOME!  Thank you so very much for all your prayers and encouragement.  God is so good!

Rooming In

After a baby has spent the first days (or weeks or months...) of life in the NICU, it is a huge adjustment to suddenly bring the baby home.  To ease this transition a bit, and make sure parents are 100% confident and ready to take care of their baby on their own, without monitors and nurses and doctors, the hospital requires parents to spend the first night or two with the baby at the hospital. 

So tonight, I have begun this rooming in process.  They wheeled my son's crib into a small, private room, unattached to any monitor, cord, or tube.  I am now fully responsible for keeping up with his schedule, feeding him, changing him, checking his blood pressure and learning how and when to give his many medications.  The good thing about still being in the hospital, however, is that if I have any questions, problems or concerns, his nurse is just down the hall, a simple phone call away.  It is incredibly reassuring to know they are here to help me as I get adjusted to taking care of him on my own. 

I can't even express how amazingly wonderful and exciting it is to finally hold my child without being attached to anything.  I can cuddle with him, or walk around the room with him, and I don't have to constantly worry about leads coming detached or tubes being pulled out.  I am loving every second of my time alone with him, and feeling really ready to bring him home.  I just know his sister is going to adore him, and I can't wait to see them together, under the same roof! 

Let the Countdown Begin!

It's finally here!  My son is finally, FINALLY able to come home!!!

Tomorrow I will begin to room in at the hospital, and will be rooming in for two nights, so he should be discharged on Tuesday, February 16. 

I'll explain more about what rooming in is soon, as well as all the details about his coming home, but right now, I have to go make sure I have everything ready for him to come home!!!

So only three more days until he is HOME with his family!!!!!!!

Three Months

At 1:21 this morning, my son turned exactly three months old.  Today he is spending his 93rd day in the hospital.  I don't think I have to tell you that this has been an incredibly long three months, or that I am so beyond ready for him to come home.  But in spite of everything, I continue to be amazed at what God is capable of.  The strength that He provides, and the amazing miracle that is my son.

 

  

  

  

 

And even though he is still in the hospital, I am so thankful that he is doing so incredibly well.  There are a million things that could have been worse, and I always try to keep things in perspective.  And although he is not quite where a full-term three month old would be developmentally, he is big and strong, and will catch up in no time.

Thank you so much for your prayers.  We are praying everyday that his blood pressure will go down so that he can come home!    

So Close

Overall, things are going great.  My little guy is eating really well and gaining weight, and is now up to 8 pounds, 15 ounces.  He is a happy baby, and is no longer struggling to breathe, or dealing with a stressed out heart.  They've even taken off his pulse oximeter which was monitoring his oxygen saturation, because he no longer needs it.  After months of watching him struggle and watching those numbers dip, and being on and off different breathing machines, I never thought the day would come when we didn't even need to monitor his oxygen anymore.  

If only we could get (and keep) his blood pressure down. 

A nephrologist (kidney doctor) has been monitoring him and trying to figure out the right dosages of medication.  He is now on one medication 3 times a day, another twice a day, and then a third if his numbers are still too high.  Because we have not been able to get it down and keep it down, he decided today to start him on a diuretic to make sure he gets rid of all excess fluid.  If he is retaining any fluids, they could be adding to the high blood pressure.  I am hopeful that this, along with the meds, will do the trick.  As soon as his blood pressure is down to normal levels for a baby his size (right now he has the blood pressure of a healthy adult), he can go home.

Knowing we are this close is making it even harder to be patient.  But it is important that the doctors do not start him on more medication than he needs, so they have had to start very low and gradually increase.  At some point, though, he will be on enough medication to keep it under control. 

We are not there yet, but we are so close.

A Light...

...at the end of the tunnel.

Well, friends, I hesitate to even say this, because things could change in an instant, but I believe we can finally see a light at the end of this long long tunnel.

For the past few days, my son has been drinking six bottles out of his eight feedings, and almost every time he gulps the whole thing down.  I have a feeling in the next day or two they will let him drink a bottle at every feeding and see how he does.  They need to make sure he can drink the whole thing (over two ounces) each time, and all the while still gain weight.  They don't want him expending so much energy eating that he is burning more calories than he is taking in.

In addition to that, they are still trying to get his blood pressure under control.  We were optimistic at first, because the new medication he was on seemed to be working, but since then, it has continued to be high.  They have slowly increased the dosage, and we are hoping they will soon find the magic number to keep it steady and where it needs to be.

And then?   

THEN, he gets to come home.   

THEN, he gets to meet his sister for the first time.

THEN, life can get back to some semblance of "normal."

THEN, we can begin to figure out life with two small children, 11 months apart.

It's going to be amazing.  I don't think I will ever again complain of a fussy baby.  Or a baby who doesn't sleep through the night.  Or a baby who dirty's a diaper 30 seconds after I put it on.  No, because at least they will be home, with me, where they belong.

And I absolutely can't wait.   

Mommy's Little Hero

This sweet 

 

little boy

 

is my

 

HERO.

Good News

Over the past two days, we have had some very good news!

1.  My son's renal ultrasound was all clear and everything was normal-kidneys, bladder, etc.  So there are no abnormalities, or blockage or kidney stones.

2.  Although it is still unclear what is causing the high blood pressure, he is now on a new medication which, so far, is keeping it down and consistent.

3.  Yesterday, every time my son took a bottle (three times) he drank the ENTIRE thing.  This is the first time he has done this in a 24 hour period. 

4.  Tomorrow, the doctor is going to let him try (finally!) to drink a bottle four times and see how he does.  Hopefully he will show them he really likes to eat!

Unfortunately, I still haven't gotten the video of my daughter walking loaded on my computer yet.  But I promise to try sometime soon!  What I do have, is a picture of my sweet, sweet boy in a swing at the hospital.

This and That

I know I am thoroughly delayed in updating you all as to my son's progress, and for that, I am very sorry.  We had quite a busy weekend, and I have a sinus infection to boot.  Anyway, onto the update...

He is doing well.  Although his surgery has made breathing infinitely easier on him (and his heart), recovery from surgery was a little tougher on him and took a little longer than we anticipated (seems to be a theme around here these days).  It took a bit longer to get him extubated than they originally thought, longer to get off morphine, and longer to get used to being off morphine (he had to be on another drug-Ativan-to help calm him from agitation from no longer getting the narcotic).  But he seems to be doing much better as far as all of that is concerned.  He's happily breathing room air with no issues at all, and only gets Tylenol if he seems to be in pain.

Now, however, it seems we have a new hurdle.  He has been struggling since his surgery with high blood pressure.  At first, we assumed it was because he was in so much pain, as well as a result of his body adjusting to a now closed ductus, and all the blood flowing the way it is supposed to.  He has been treated with blood pressure medication, however, and it does not seem to be doing the trick.  It will bring it down for maybe a few hours, but ultimately he needs medication again later in the day.

Today, the doctors did an ultrasound on his kidneys to see if there was anything going on to cause the high blood pressure.  Apparently, high blood pressure can be related to problems with the kidneys (a problem with blood flow or some sort of blockage), so the doctors are checking those first.  Also, a blood pressure specialist (I'm not sure what their official title is) is going to be checking on him today.  So hopefully in the next day or so we will have some answers, and can resolve this issue for him.

He is still only getting a bottle three times a day, and so far hasn't been too consistent with his eating.  Sometimes he gulps down the whole thing, other times he will only drink half or so.  But I have been able to start working on breastfeeding again now that he is recuperated, and today he did fantastic!  So I'm feeling very confident that he will be able to do it when he gets home.

In other, totally unrelated news, MY DAUGHTER STARTED WALKING LAST NIGHT!  She has finally overcome her fear of letting go, and walked about three feet back and forth between me and my husband.  I got a little of it on video, which I will be trying (very hard!) to figure out how to post it later tonight (wish me luck!).  My husband, unfortunately, only managed to tape the kitchen counter.  So it's not very much that we actually have on camera, but maybe we can get some more footage tonight. =D

Whew.  Well, I think that's all I got!  Thank you for your concern and prayers for our little boy and family!!  

Time to Eat!

Today was a good day.  Late yesterday the doctors took the CPAP off my little guy and he is doing great.  We decided to visit last night (which is odd, because normally we visit during the day), so we were wonderfully surprised to see him alert and awake and WITHOUT any oxygen.  No ventilator, no CPAP, no high flow cannula.  Nothing!  So we got to spend some really great and much needed time with him, and also got to help give him a "bath,"* which is something we have never gotten to do.  The nurse couldn't believe that this was our first time helping with bath time, considering he is now 79 days old, but we usually aren't there during the night shift.

*Bath actually means laying a water proof pad down on his bed, cautiously scrubbing him with wet, soapy cloths, meticulously avoiding his battle scars from surgery, then quickly drying him with a blanket and getting him dressed again.    

So it was a good time, and today, because he is doing so well off of oxygen now, the doctor decided he can begin bottle feeding again.  At first, she decided he could try once a day.  But I went to see him, and talked to the nurse and doctor, and explained that he was taking a bottle three times a day before surgery.  So after he drank just about the entire bottle this afternoon, she said he could try three times a day, and we'll see how he does. 

This is a big deal, because he cannot go home until he can eat his entire bottle at every feeding (eight feedings a day).  The doctors start slow, to see what babies can do, and increase bottle feedings until they are drinking a bottle (or breastfeeding) at every feed.  Therefore, to start with three feedings a day instead of one gives us a little bit of a jump start. 

If he does well, they will let him try to eat on his own four times a day, then six, then eight, until he is eating well enough that he can GO HOME.  So for now, it is time to eat up, and show the doctors that he is strong enough and capable enough to chug those bottles and grow big and strong!

 

 

Slow But Steady

Well, the doctors were finally able to successfully extubate my little guy yesterday, but immediately put him back on bubble CPAP just to be safe.  He has been breathing comfortably and sleeping well, so thankfully, he no longer needs the ventilator.  After the rough time he had Tuesday, however, the doctors don't want to rush anything.  So he is still on bubble CPAP, and is not trying to bottle feed (or breastfeed) at all yet.  

As far as recovering from surgery goes, he is doing well.  He is no longer on morphine, and finally had the chest tube taken out, so that can begin to heal now.  He is on another medication to help keep him a little sedated so that he can rest and his body can get used to being off morphine, but they will be weaning him off of that soon as well.

Other than that, nothing has really changed, except that he is continuing to grow.  He is up to 8 pounds, and growing pretty consistently now that he is no longer on IV fluids and lasix and other drugs, and back to eating two ounces of milk every three hours.

Thank you for your prayers, I will continue to post updates. =) 

What A Day...

This morning, the doctors decided to try to take out the ventilator.  At first my baby was doing well, and they believed he did not need oxygen.  After about 20 minutes, however, the nurse noticed he was struggling with stridor, a sort of gasping for breath, choking noise.  This was caused from inflammation in his airway because of irritation from the breathing tube.  The doctor tried twice to give him recemic epi to get the swelling down and allow him to breathe, but that did not work.  Then she tried him on a CPAP to help provide oxygen and flow through his airway, but he was on 100% oxygen and still in distress.  So, ultimately, she had to re-intubate him. 

It is so frustrating to know that all of this was caused by the ventilator, but the only solution was the ventilator. 

So instead of breathing room air, and starting to work on bottle-feeding again, he is still on the ventilator.  He is now getting a steroid medication to try and (hopefully) get the swelling down so we can try again tomorrow.  Unfortunately, there is no way to know if it has gotten better until they try to extubate him again.  Please be praying that this will do the trick, and that he will not go through this again tomorrow.  He hates that breathing tube so much, and will be so much more comfortable when he can breathe without it!

Thanks friends,

Recovery

So far, my little guy is doing ok.  They put him on a ventilator to breathe while he recovers from surgery and adjusts to having the ductus closed.  Although he is still on it, they are trying to wean him off, and have already been able to lower the settings and the amount of oxygen he is getting.  He also still has a tube in his chest to help drain the fluids from his chest and lungs, but I am hoping they will be able to take it out soon so that he can begin to heal.  I think that tube might be more painful for him than the actual incision from the surgery.

Right now, the nurse is trying to keep him comfortable, while also weaning him off the ventilator.  This is a very fine balance.  Because he is in pain, which is also causing his blood pressure to be high, they are giving him morphine.  But being drugged up on morphine hinders his ability to breathe entirely on his own.  So they are doing the best they can.  Obviously, they do not want him to be in pain.  We are hoping that by tomorrow his pain will be more under control and they can get him off the ventilator.

This morning they were able to start his feedings again, slowly, and he is tolerating it well so far.  For the time being he is only getting 20 ml every three hours (before surgery he was eating 60 ml).  One good thing about this is that it gives me a chance to get a little ahead in pumping milk for him.  I was getting behind, as he eats more in a day than I can pump.

Overall, he is tolerating things well.  It is so incredibly hard to see him hooked up to so many tubes again, after feeling like we were past all the IV's and breathing aids.  And it is definitely hard to see him squinting in pain.  But we're hoping by this time tomorrow the worst will be over, and being so small and young gives him a huge advantage as far as recovery goes (babies bounce back much faster than older children, and much MUCH faster than adults). 

Thank you so much for all your prayers.  We absolutely see God at work in our son's life, and continue to trust in His plan.

PDA Ligation

UPDATE:

The surgery went well and my son is now back in the ICU resting.  He has not woken up from the anesthesia yet, and is having some trouble with his blood pressure.  Right now, he is still on the ventilator, and is not getting feedings, just IV fluids.  Other than that, the nurse is just trying to help control the pain so that he can rest peacefully.  As the anesthesia wears off, they will begin to wean him off the ventilator, and continue to watch him to see when they can begin feeds again.  Hopefully within a day or two they will be able to move him back over to the progressive side of the unit.

Original Post: 

I apologize for being late with this update, but it has been a busy couple of days.  After consulting with three different cardiologists, our son's doctor decided that his PDA has gotten too bad, and is causing too much stress to his body to wait any longer.  He called the surgeon yesterday and now has surgery scheduled for tomorrow (Friday) afternoon.

Thankfully, to close the PDA will not require open heart surgery.  Instead, they are performing a ligation.  The surgeon will cut a small incision on his left side, go through his ribs and tie the blood vessel closed.  The total time in the operating room will be about an hour to an hour and a half, but the surgery itself should only be 30-45 minutes.  He will still have to be under general anesthesia, and received a blood transfusion today to get his blood count a little higher before getting the anesthesia and having surgery.

During and after the surgery he will be receiving IV fluids, will have a tube in his chest to help drain any excess fluids, and will also have to be put on a ventilator.  Hopefully, the surgery will go well and recovery will be quick (about a day or two).  Once he is recovered, he will begin working on feedings again, which I am anticipating going much better, and progressing much faster once his PDA is corrected.

Please be in prayer for my son, that he would handle the anesthesia well, and not have any complications, and that the surgery will correct all the challenges he has been facing for the past 71 days.  Please also pray for the doctors performing the surgery, and the nurses who will be caring for him during recovery.  Thank you so much, friends.  I will try to post an update tomorrow as soon as I am able.       

Results

Well it has been a very long day, and with it, a great deal of waiting.  But finally this afternoon we were able to talk with our son's doctor for a few minutes and discuss all his test results and where we will go from here.

The echocardiogram from yesterday showed that his patent ductus arteriosus (PDA) is still large and causing stress to his heart.  His doctor called for a cardiologist to come and see him (hopefully sometime today or early tomorrow), to help make some decisions about what to do next.  It seemed to me that his doctor is not nearly as optimistic that it will close on its own anymore, and is starting to think that he may need heart surgery.  Hopefully, consulting a cardiologist will help shed some light, and allow his doctor to make the right decision for him at this time.  We are hoping to hear back from the doctor tomorrow so that we will have a better idea of what their plans are, so please be in prayer for all the doctors who are seeing him right now.

On the bright side, he had an MRI today to look at his head and check on the hemorrhage around his brain, and it has cleared itself up, AND it did not leave any scarring, which could have led to some permanent damage.  So we are very excited and thankful for that!

ALSO, I was able to try and breastfeed for the very first time today (he is now 69 days old).  It is most definitely something he will have to work on and practice, but he can definitely do it, so I was very encouraged!

Even though he still has several heart defects, he is growing and doing unbelievably well.  He has been off of oxygen for a full week now (the longest period of time yet), and when he is breathing well and awake, is capable of drinking an entire bottle, which is fantastic.  There are babies in the NICU who don't have any heart defects who are not interested or have the stamina to drink their bottle.  So we are very proud of him, and convinced he is a remarkably strong boy!

Thank you so very much for your continued prayers!

 

One Step at a Time

Well, my little boy is making progress, one tiny baby step at a time.  He is still only getting a bottle three times a day, but he's doing really well.  Today, he drank his entire bottle at 8 o'clock and 2 o'clock.  What is really amazing about that, is that they have taken him off his nasal cannula again.  I am trying not to get too excited about his being off oxygen, because they have tried soooo many times (and after a day or so, it ends up back on), but this time he really seems to be doing well.  So far, he has been off for almost 48 hours, and has done pretty well with his three bottles a day.  I'm hopeful that he is finally off it for good!  (I'm also hopeful that tomorrow I will remember my camera and can take some pictures without the cannula!)  

He is also gaining weight like crazy, and is now 7 pounds, 1 ounce.  He has already outgrown his preemie diapers, and he will probably outgrow his preemie clothes before he goes home (if he hasn't already).  I just can't get over how big he is!  Tonight his nurse went on and on about how much he's grown (she hasn't seen him since Christmas) and what a cute, sweet baby he is.  I love hearing things like that, haha!

    

He is scheduled for his next echocardiogram on Monday, to look at his heart and see if any of the holes have closed or gotten any smaller.  I am praying everyday that his PDA is closed, so that hopefully he will not need heart surgery.  We should have results on Tuesday, so I will keep you posted! Thank you for your prayers as well!!   

Stretching

 

Two Months

My baby is two months old today!

Two months old, and the size of a full term baby.  He is now up to 6 pounds, 12 ounces.  It's funny how perspectives can change.  When my daughter was born, she weighed 6 pounds, 3 ounces and seemed so incredibly tiny.  Now, I look at my son and marvel at how big he is!

He looks so beautiful and perfect.  It breaks my heart knowing that he is still struggling.  He has to work so hard to breathe.  I know that one day this will all be behind us, and will seem like such a quick blink in time, but right now, it feels like the longest two months of my life.

But we will get through this.  He will get though this.  And I know he will be unbelievably strong.  One day.

Weekend Update

My little man is doing well.  He is getting so big, and stronger everyday.  His PDA (patent ductus arteriosus) is still open and causing some problems.  He has to work a little harder to breathe, still has some dips in his oxygen saturation, and some moments when he breathes too fast, and is having some trouble with fluid retention in his body and lungs.  Every couple of days, the doctors give him lasix, a diuretic that helps him get rid of the excess fluid, and that seems to help.  He seems more relaxed and not as labored in his breathing.

They have also taken the nasal cannula off for now to see how he does without it.  They had weaned him down to a very very low flow, and he was doing fine, but whenever he took a bottle, he needed extra oxygen to help him out as he worked on breathing and eating at the same time.  So we will see how he does.  They may need to put it back on if he is not able to eat and gain weight like he has been.

Also, he is up to three bottle feedings a day (out of eight feedings).  Most of the time, he does really well, and drinks all or almost all of it (he gets 60 ml of milk every three hours and often drinks at least 45-50 on his own before the remainder goes in the feeding tube).  I was able to feed him yesterday, and I can definitely tell a huge improvement.  He is getting more coordinated, and is learning not to take things too fast.  He will chug a few sips, then take a few deep breaths, then drink some more.  If he seems like he is still able to do this well without his cannula, they may start to increase his bottle feedings this week.  We're certainly hopeful!

Thank you all so very much for your prayers and encouragement.  We are so thankful that our son is doing well, and trusting in God's wonderful plan for him!