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Thursday, May 10, 2012

The Travels of Having a Baby....

Well, as you all know, we have not had the best time with Daniel.   So, I thought I would blog about it a little while.



Daniel was born on October 23, 2011.  They told me he was a healthy boy weighing 7 lbs and 10 ounces.  When we were in the hospital recovering, he dropped a lot of weight and was only weighing 6 lbs and 2 ounces.  They told me not to worry.  He was still healthy.  Just go home and keep feeding him the way that he is being feed now.  So, we got ready to take him home.

Yes, I was just nursing right before this picture was taken haha.
About four weeks later, we were really concerned with his breathing.  He had a few attacks where he acted like he couldn't breath at all.  He was gasping for air, breathing so fast some times.  We were so scared.  So,  I called the doctor in the middle of the night during one of these episodes, half in a panic.  They asked me to hold the phone up to Daniel's mouth so they could hear what it sounded like.  They then told me to be in the doctor's office the next day to run a few tests on his lungs.  That is when everything started changing...and it started changing for the worse.

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So, I dressed him up and got him ready for the doctor.  I figured they were going to tell me there was nothing wrong.  Everything was fine.  I was completely ready for that.  So, they did a few tests, we sat around, waited and waited and waited.  The doctor finally came back....he didn't look happy as he walked into the room.  He sat down and said (omg, I am already crying thinking back to this), "The preliminary test results are back, but we won't have the full results back for a few days.  It looks like your son has Respiratory Distress Syndrome, also called RDS.  The first six months of his life will be critical...."  That is all I remember him saying.  RDS, I heard of that...omg, my son has that!?!?  Don't babies die from that.  OMG...that is all that keep running through my head.  That and "Congratulations, he is a healthy baby boy."  What changed???  What did I do wrong??  Why is this happening to me!?!?!?!?  To my son!?!?!?  My HEALTHY baby boy!!!

I got home...yes, I cried.  I called my family and broke the news a few hours later when I thought I was alright to talk about it.  I wasn't.  I still am not.  When my MIL brought my other son home, she brought two Christmas ornaments home with her.  One that said Lucas and one that said Daniel.  When I saw them, I broke down again.  All that went through my mind was, is he going to even get to see his first Christmas????  Those first few days were hard.  All I did was cry.  Every time my son even moved a little bit I thought he was dying.  I couldn't sleep.  Nothing.  Of course, the first few things we did was get a humidifier for our room and an Angel Care movement and sound monitor.

And then, the doctor's office called.  The full test results were back...GOOD NEWS!!!  Daniel had a VERY mild case of RSD!!!!  They said he would be over it by the time he was six months old!!!!!  We were SOOO relieved!  Our son was going to see his first Christmas!!!!  And he did!


And then, the problems started again.  Fast forward to February.  I took him to a regular check up.  They asked how his breathing was doing.  I told him, well, now that you mention it he has been gasping an awful lot.  Well, this was normal with RDS as I was told.  We went home.  Three days later, Daniel started shaking.  It was a horrible shaking.  I thought he had a seizure!  I called the doctor's office...they said it sounded like regular baby shaking stuff.  I was not convinced.  I was even less convinced when 3 days later, he did it again.  This time we rushed him to the ER.  They admitted him.  And what did they do?  Nothing really.  They did an EKG and an Upper GI (which really confused me). There was absolutely no trace of a seizure.  I told them I was not joking...he was really doing this.  We ended up in the hospital for 3 1/2 days...and still left with no answers as to why my son was doing this.  As I call it, it was the most expensive hotel room ever.


They asked for us to do a follow up with his doctor the next day.  So we did that.  At this point my son is almost 4 months old.  The doctor decided to check on his RDS also.  So, he did that and ran the tests for that.  He also referred us over to a GI doctor.  While we waited patiently for the GI appointment, we found out some more good news...Daniel had no more traces of RDS!!!  Thank goodness!!!!  Now, we could focus just on this.  We started letting our guard down a little more and decided to sit down with a glass of wine while the kids slept.  Well, that is when Daniel's Angel Care monitor went off.  If you are not familiar with the Angel Care monitor, it beeps like crazy when there is no movement for 10 or more seconds.  Well...we ran...I thought we would never get to the top of the stairs to our baby...who wasn't breathing.  Corey got there first and screamed, "HE'S BREATHING, HE'S BREATHING."  As soon as I saw my son's eyes open and his chest move, I collapsed.  I was crying so hard I was hyperventilating.  When I calmed myself down, I just held my baby close.  I knew I would never let him out of my site for a long time again.  Wow, that was seriously the worse night of my life.  We thought maybe he rolled off of the monitor...but he couldn't roll yet.  We went through every possibility we could think of and couldn't think of anything besides he did stop breathing.

Wow, I forgot how much this picture affected me...this was Daniel at his worse....

Fast forward about a week.  It was time for the GI appointment.  I told him about what happened the night with the Angel Care monitor.  He ran a new Upper and Lower GI.  Took a lot of blood and came back.  My son definitely had Sandifer's Syndrome.  This explained almost everything.  He was probably having a horrible acid attack and that caused him to hold his breath that horrible night.  It explained the huge weight loss, as you can probably tell from the picture right above when he lost about 3 lbs in 2 weeks.  It explained the seizure like activity, his weird yoga like positions, his consistent crying....everything.  We finally had an answer, and a medication!!!  



He started getting better and better.  He started gaining weight and was FINALLY in 0-3 month clothes!  Today he still has a lot of healing to do.  He still has his Sandifer's and the most that shows up is the neurological side of it.  I can handle that!  After everything else!  He is now 6 months old...so out of the super scary time period.  He is moved up to 3-6 month clothes!!!  Weighing in at a whole 15 lbs now!!!!



We no longer live in fear.  We thank God for every day we get to spend with him.  Me and my husband spent the whole night talking the day he turned 6 months.  We never thought he was going to make it to 6 months old.  But he did....and he's getting better and better!!!
  

27 comments:

  1. Wow, Nicky, I had no idea you guys were going through this!!! I am so sorry! What a terrible experience that must have been! But remember that God is using this trial to produce something great in the end!

    Father, I pray for Daniel. Oh God, I thank You that he has made it and is growing and the medication is working!! I pray You will bless Nicky and her husband as they continue to go through difficult times such as this. Father, thank You for Your love and Your grace and Your purposes. May Your purposes prevail and Your will be done for this little one! In Jesus' Name! Amen :)

    Also, as a side note, Lila is 6 months and as of today, she weighs 13 lb, 11 oz. So 15 pounds is not that bad!! :)

    love you!

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  2. So glad he is doing better! I can totally understand what you went through. At 28 weeks pregnant I started bleeding and we went to the hospital, where I thought they would give me a magical shot and I would no longer be in labor and go home still pregnant. Didn't happen! We got there at 8am, and we were quickly told I was in full blown labor and would need an emergency c-section! Um, I planned a water birth with a midwife, no needles and drugs. So after having 20 plus doctors, nurses, NICU doctors and NICU nurses in the room asking us questions and telling us the procedure, I was rushed back for a c-section. At 2:21 my son Eli was born, weighing 2 lbs 14.7 oz. He spent 7 long weeks in the NICU. Thank god he had no serious issues and just needed to grow. Now he is a healthy 21 month old and a big brother. Turns out I had a placental abruption with him and with my daughter I was diagnosed with an incompetent cervix. So scared to get pregnant again, I was in labor at 29 weeks, 33 weeks and 34 weeks with my daughter and they were able to stop it every time. She ended up holding on until 39 weeks, and was almost 8lbs!

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  3. No, 15 lbs is great! Especially seeing what he was at (he was about 7 1/2 pounds pre medication). Thank you Jen. You are truly amazing. Love you too! And miss you! Next time I get up there we will totally have to get together!

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  4. Crying...it's hard to imagine you going through this. Wish you weren't so far away. I'm so Proud of you! Love you guys!

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  5. D. Marie Hicks: that is an amazing story. So happy you were able to be blessed with not just one, but two children!!! That is amazing!!! I am so happy to hear that your son is doing better. That must have been so scary!!!

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  6. Love you too Janelle!!! I know, through all that I was SO tempted to come back to NY so I had all of you around for it but at the same time I was so scared to travel with him!

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  7. My heart breaks again over this. I remember reading status updates and waiting for you to update. So glad that he is getting better & better! Love you lady!

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  8. I never realized how bad it actually was. It's really breaking my heart. I really hate you being so far away. We all miss you so much. I hope that you can make the trip now that he has the correct diagnosis and medicine. Poor baby im just thankful he's doing better!

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  9. Love ya too Trel!!! Thanks!

    Don't let it break your heart Janelle!!! This was to say good-bye to all that and to move on! He is doing so much better it's not even funny! Even ask Gram! She notices the difference just from talking to me over the phone.

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  10. My DD is 17 months now, and thinking back to her first few weeks still makes me break down in tears. She was born with Trachea Esophageal Fistula, her stomach wasn't connected to her esophagus, so she couldn't swallow... Every time I got her to breastfeed she'd end up choking as the milk would reach the end of her esophagus and come back up. She had three blue spells that first day in our room. I really think those were the worst, seeing your baby not breathing, turning blue, and unable to do anything about it was truly terrifying. The second day she was finally diagnosed, and had surgery to repair on the fourth day. She came home from the hospital only ten days after her repair, weeks earlier than the doctors thought she would. Then she started having stricturing (tightening) of her esophagus, from scar tissue at the original repair sight. She's had to have 12 dilations for her esophagus, but the last one was 6 months ago and she seems to be past that part of her life now. We'll always have difficulty with her food, she has to have soft foods and small portions.

    It was a wild roller coaster ride, but we have our wonderful, beautiful, happy, healthy girl now.

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  11. Powerful story Carrie. Thank the Lord she is okay and a swift surgery was available to help her out!

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  12. Wow Nicky! I didn't know you were going through all this! I am so glad he is doing much better! Oh and 15 lbs at 6 months is great! I think my dd was that at a year old! :-)

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  13. So glad to hear your little fella is doing well!! My thoughts & prayers are with you all!

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  14. So scary! I'm glad he's doing OK now. He's such a cutie!!

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  15. Pray it's all working out now. Austin keeps choking himself on his hands teething. #8 on way. It's so scary seeing them suffer!

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  16. That must have been so scathe to go through I'm glad he us doing well now, he is precious!!

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  17. praying hes getting better everyday!

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  18. I sat and read this all the other day and just couldn't bring myself to comment. Your little guy is almost 2 months younger than mine is. He was born at 34 weeks and spent a while in the NICU because his lungs weren't developed. I still can't look at the pictures where he wasn't breathing, or at our hospital before they transported him. He had IUGR and is still struggling to grow. He's currently in the 7th% for both his height and his weight (17lbs 9oz at 9m). He was in preemie clothes for nearly three months. He's doing okay though. I know that doesn't really compare at ALL...but reading about your struggles with your little guy kind of brought up the raw emotions and I wasn't quite prepared for it.

    I hope your little guy continues to do well!!

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  19. I hope he continues to thrive and get better each day. What a scary experience. My first had horrible reflux. We got no sleep until he got on a medication that made him more comfortable. It is soooooo hard. Hang in there.

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  20. Oh my god, I couldn't imagine being in that situation. I'm so glad to hear your son is doing better now. Would love to get another update soon!

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  21. Hoping your family continues to do well. My thoughts and prayers are with all of you.

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  22. Wow, that is so scary! My daughter has reflux (pretty bad reflux) and they told us they wanted to run a bunch of tests for sandifers, luckily she doesnt and is doing much better at 4 months. You and your family are in my prayers.

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  23. It is great that you put your story out there so that others can be aware of the symptoms. I am one of those people that feel doctors don't do enough until things get scary. Sure, they'll hand out medications, but sometimes they aren't the right ones. For me that was more often than not. Now that I'm a Mom I'm much more adamant about understanding what is going on with my daughter. In the future we will be trying all of the alternatives before giving her a bunch of medications, because I know from years and years of experience that it is not the only answer available. It is awesome that you were persistent and had supportive doctors who helped you through your son's medical needs. It is great that he is thriving thanks to modern medicine! I look forward to reading more about the little guy in your future posts.

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  24. What a horribly scary time for all of you! I'm very very glad that things are improving for you. It's great of you to share your story with other families.

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  25. I didn't know you and your family were experiencing this-how difficult this must have been! you are all in my prayers. Good to know he's doing better!

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  26. I am so glad you discovered what was wrong and that things are getting better. That is so scary. It is definitely important to do what you did and keep questioning the doctors. Often it seems like they just want to rush patient out of the door.

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  27. Wow! I'm so glad he's alright now.

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