No more breathing tube and other great progress!

I apologize for not posting an update before now.  The time has flown by these last few days between visiting the NICU, pumping every three hours, and trying to find time to get some rest.  Joshua has made so much progress since Wednesday - we could not be happier with how well he is doing!  I was discharged from the hospital Friday afternoon (finally) and we made our way to Decatur after packing up stuff at home for our extended stay.  I was so anxious to get to Egleston to see Joshua!  Being able to see and and touch Joshua again was unbelievable!!  David said the swelling and redness around his tummy had improved quite a bit since the morning. Unfortunately, he still looked quite uncomfortable with the breathing tube in and he kept trying to pull at it with his little hands.  This morning David and I walked into the NICU to see Joshua with his eyes open and without his breathing tube in!  He looked like he felt so much better without that pesky breathing tube in. 

And then the best part about no breathing tube - Nurse Nancy told me I could hold him!!  I was giddy with excitement!  I held Joshua in my lap for over an hour and it was amazing.

Things just kept getting better today.  When we went to visit with Joshua this evening, I was able to change his diaper for the first time!  He is such an agreeable little baby, even with all the unpleasantness he's going through.  I can't wait to visit Joshua tomorrow and see what progress he's made!

Joshua's first full day - and it was an eventful one!

After Joshua left my hospital room at 2 am, I received a call from a nurse at CHOA around 4 am letting me know he had arrived safely and she needed my verbal consent for him to be evaluated and have surgery.  I quickly agreed and anxiously waited for the next call.  The call came at 5:15 from the pediatric surgeon - Joshua was doing great and she had been able to perform a primary closure!!  There are two options for gastroschisis patients: primary closure which involves tucking the intestines back into the abdominal cavity and surgically closing up the hole, or a silo where the intestines are packed inside a sterile bag and hung above the hole in the baby's abdomen so they can slowly be reintroduced into the abdominal cavity over the course of several days to a week.  Primary closure is preferred, but is often not possible because the abdominal cavity is not large enough to fit everything and it puts pressure on the baby's already strained lungs.  We were hoping for a primary closure, but expected a silo since that is the necessary option more often than not.  I was thrilled to hear the surgeon say that Joshua was an excellent candidate for a primary closure since he did not have too much of the intestines out and his lungs were nice and healthy.  Our little boy was already put back together and whole!!  I am dumbstruck and elated at how fortunate we are with this outcome!  Don't get me wrong, I know there is still an incredibly long journey ahead of us since the real issue with gastroschisis babies is getting the intestines to have healthy activity and absorb nutrients the way they are supposed to.  Joshua will still be intubated for several days since he is on morphine to control the pain and the ventilator is necessary to keep his breathing at a normal level.  He has a PICC line for IV nutrition, a catheter for emptying his bladder, a tube for emptying his stomach contents since his intestines aren't working yet, and a long way to go before he can start on feeds.  The feeding process is the trickiest part of recovering from gastroschisis and can take anywhere from a few weeks to a few months.  In about two weeks, Joshua will be introduced to his first real food - 1 milliliter of my breast milk.  From there the amount of milk will be slowly increased if his body is able to process it.  Often times babies take two steps forward, then one step back.  Since the intestines have never functioned properly, it can be a very arduous process.  But, so far Joshua has exceeded all of our expectations and I cannot doubt our little champ - he will fully recover and I strongly believe it will be more quickly than usual.  I am so proud to be this extraordinary child's mother! 

Joshua after his successful closure surgery

First page of the journal David and our excellent nurse, Nancy, started together

Scratch that last post, July 31st is JD Day!

I knew it was a good possibility that we would not make it to 8/13, but a lot can happen in a week.  To fill in the other gastroschisis moms that may find their way to this blog, let me start at the beginning.  On Monday night after dinner, I felt a drastic decrease in Joshua's movement.  This is concerning because he was consistently more active during the evening hours and I felt little to no activity after about 7 pm.  I didn't want to freak my husband out so I kept this observation to myself and vowed that I would stop by my doctor's on the way to work the next morning if I hadn't felt any significant movement.  On Tuesday morning Joshua remained too still so I called my doctor on the way to work to let them know I was planning on stopping by to have them listen to his heartbeat.  The nurse told me to hold tight and wait for her to call back with the doctor's instruction.  I went to work, immediately got the call from the doctor to go to the hospital for fetal monitoring, then called my husband to meet me there (just in case).  I felt a kick or two on the way to the hospital and thought I was probably overreacting, but wanted to err on the side of caution.  I was put in a triage room, hooked to the fetal monitor, and felt immense relief when I saw and heard his steady heartbeat.  David and I both thought I would be monitored for 30-60 minutes then I would go back to work.  No big deal, right?  The OB on call came to do an ultrasound and I was immediately worried.  I have had many ultrasounds throughout the pregnancy due to Joshua's condition so I know what is normal for him.  He had no movement at all even when the doctor tried to stimulate him in different ways.  He was no longer making practice breaths which he had been doing the two previous ultrasounds.  Our perinatologist was called in on his lunch break to check me out.  The ultrasound technician, Linda (love her!), showed up first and I felt relieved to be dealing with someone who has been monitoring Joshua throughout the pregnancy.  She and the perinatologist both concurred there was little to no movement even with acoustic and physical stimulation.  My heart sank as Dr. Rosemond confirmed my fears - the baby is under distress and needs to come out today.  The monitoring showed I was having minor contractions, but I wasn't even feeling them and unfortunately, my cervix was completely closed.  The decision was made to ripen my cervix for 12 hours with Cervidil then start pitocin the next morning to induce labor.  Calls to family were made as David went home to pack bags for us and I was moved into a labor and delivery room.  Plan A (really Plan B since Plan A was to be induced on 8/13) did not end up working out because after 5 hours on the Cervidil, Joshua was showing signs of cardiac distress including frequent accelerations and decelerations of his heart rate.  After much back and forth, the OB on call decided to pull the Cervidil and prep me for a c section.  I walked into the OR around 10 pm, received a spinal block, and the medical team quickly came at me from every direction strapping limbs down, draping my belly, inserting catheters, and many others things I am not even sure of (and probably don't want to know).  It was a bizarre and frightening experience, but I knew the end result was worth it - our baby would soon join us!  Joshua was born at 10:37 pm weighing 6 lbs. 4 oz. and was 18" long.  Hearing him cry as he was pulled from my womb was the most anticipated, amazing sound I can imagine (even as I turned my head and vomited profusely from the anesthesia).  After all the worries, concerns, tears, and sleepless nights fearing for my little boy... he is here and he is alive!  My goals after finding out about his condition were accomplished: he made it past 37 weeks and weighed more than 6 lbs.  I know have given him the best shot I can at a healthy outcome - now the rest will be left to God, Joshua, and the talented medical staff at Children's Hospital of Atlanta.

My beautiful baby boy after being prepped for transport to Atlanta.  I had about a minute to rub his head, hold his little hand, and wish him well on his big journey before he was gone.

August 13th is JD day!

Unless he decides to come earlier, Joshua David will enter the world on Monday, August 13th!!  I had an ultrasound yesterday and my doctor advised me to schedule to be induced at Week 39.  Turns out doctors don't schedule inductions on the weekend so instead of being born on Saturday, August 11 - Monday the 13th it will be.  We are so excited to meet Joshua in 19 days!  I will have one more ultrasound the week before the delivery to confirm Joshua is still looking good for an induction rather than a c-section.  Right now he only has one loop of mildly dilated intestine that has not worsened since the last ultrasound two weeks ago.  He has also gained 1 lb 2 oz so he now weighs in at 5 lbs 7oz.  This is really good news!  The one piece of negative news we received is that one of his kidneys is retaining fluid at a moderate level.  The doctor did not seem very concerned, he said it was not a reason to induce the baby sooner.  He also said whatever was causing the kidney to swell would likely resolve itself once the gastroschisis issue has been tended to.  We are scheduled to be at St. Mary's in Athens at 6 am to begin the (rather intimidating) induction process.  A specialized team will be present to transport Joshua to Children's in Decatur where he will be evaluated to see if he is a candidate for immediate closure surgery which is the best case scenario.  David will follow closely behind and I will join them hopefully the next day.  I can hardly imagine what an adventure we are about to begin and how immensely gratifying it will be to bring Joshua home after this process! 

4 weeks to go!

I had another ultrasound yesterday with our perinatologist and he was pleased with Joshua's progress.  This was a huge relief after the technician told us "not to freak out", but she saw a slowing in the baby's growth that she wanted to talk to the doctor about.  Of course, I immediately started freaking out!  The doctor, however, was not concerned.  Joshua measured at 4 lbs. 5 oz. which is only in the 12th-13th percentile for weight at this gestational age, but because the abdominal circumference is a big part of approximating the baby's weight and his condition prevents an accurate abdominal measurement, size of gastroschisis babies are frequently underestimated.  The excellent news is blood flow through the cord is good, Joshua is practicing breathing indicating good lung development, and his intestines are still not showing signs of inflammation - this was a really pleasant surprise to the doctor since he expected to see dilation of the bowel by this point.  So for now we are still planning on a regular delivery around 39 weeks which means only 4 weeks to go!  The ultrasound pictures are hard to make out at this stage since things are pretty squished in there so I don't have a good picture to post. 

Instead, I will post pictures from the baby shower the ladies from David's family had for me several weeks ago.  I lucked out in the in-law category, these ladies are the best! 

A special thank you to Linda & Alysun for their hard work organizing such a fun event!!

Like Clemens, no steroids for me!

We had an ultrasound this morning with our perinatologist and received very good news!  Our baby is growing at a normal rate, my amniotic fluid level is normal, his heart rate is good, his intestines are not showing any signs of inflammation, and he is no longer breech.  If everything continues along this path, the doctor now thinks I can carry to 39 weeks and have a vaginal delivery.  And he does not think it is necessary for me to receive the steroid injections I was supposed to get this week - woohoo!  So for now we are still dealing with a best case scenario for his condition which is wonderful.  I guess I need to take birthing classes after all - I had crossed those off my list when I thought a c section was inevitable.  I know we have a lot of people supporting us and we are so grateful for your prayers and positive energy!  Please keep them coming!!

Wow, nurses are amazing

We went on a tour of the Egleston NICU today.  I cannot say enough about how competent, caring, and dedicated the nursing staff is.  I know we will be in good hands and feel very reassured about possibly not being there for the first three days since I may be recovering from a c section.  We were able to see two gastroschisis babies, one who had received the closure surgery and one that was still waiting for his surgery.  To see how vulnerable and defenseless these little babies were brought tears to my eyes.  It was tough to see all of the different lines and tubes going in their tiny bodies, but it is good to be mentally prepared for what our little guy is in for.  The nurse who took us on the tour recommended we be prepared for at least a six week stay.  I say let's do this thing, bring it on!  I am ready to get the process started so we can bring our son home.  But, he needs to keep cooking for awhile so I have to be patient.