Still Healing

It wasn't a very exciting weekend.  We had some visitors which was fun!  Other than that, Joshua didn't really have any new updates.

Yesterday and today have been a little busier.  His saturation level of oxygen in his blood has dropped below "normal" several times.  This is the reason that he has been on oxygen in some of the pictures.  They don't feel comfortable with sending him home with his saturation level dropping this often.  They think that one of the reasons that they might be dropping is because he gets in a deep sleep and has brief pauses in his breathing.  Therefore they ordered a sleep study for him.  This will give them an idea if his saturation level is dropping because he gets into such a deep sleep.  It's ironic that he's here because of spina bifida and they are worried about his sats dropping.  It's almost scary having him hooked up to this many machines because when we go home, we won't have any machines.  We will have to rely on our parental instincts.

Last night Matt signed me up for a women's spa night.  There was a salon and church that donated their time and services.  We had a very nice dinner followed by our choice of 2 out of 6 services.  Each of the services were 30 minutes long.  They had pedicures, hair cuts, massages, manicures, facials, and make-up.  I chose to get a massage and my hair cut....wonderful!  It was such a blessing for all of us.  It was also comforting to talk to other women who are in the same position as you are, living at the Ronald McDonald House or having children who are hospitalized.  Having Joshua in the NICU and going to this event has opened my eyes even wider to other people's situations.  There are so many who have been here for months or even a year.  With some of them it's an issue of recovery or maturation, and others have issues that they will struggle with for the rest of their lives.  We are not in the worst position.
 
Today when the doctors were doing their rounds, we pointed out some fluid that we noticed leaking on Joshua's back.  They paged the neurosurgeon who came to take a look at it.  When he saw it, he decided to put an extra stitch in the place where the fluid was leaking.  We don't know if it's cerebral spinal fluid (CSF) or fluid that has built up underneath the skin.  It may not be CSF because it wasn't coming directly from the incision, which is where CSF typically leaks from.  It was about 1cm away from the incision.  Please pray with us that this isn't CSF.  If it is CSF, it may be an indication that Joshua would need a shunt.  We should know within 12 - 24 hours if it is.  After they did the stitch in his back, they did an ultrasound on his head to look at his ventricles again to see if any hydrocephalus has developed.  The CSF could be an indication of hydrocephalus.  It looks as if his ventricles are still the same size.  They have put gauze on his incision to see if it absorbs anymore fluid.  He will be monitored closely during the next 24 hours and his incision will be checked often.  He is laying on his tummy to avoid extra pressure on the incision.  There is still hope for him!

We still don't know when we will be going home.  I'm sure people are getting tired of seeing us in the same 6 outfits. We're tired of seeing ourselves in the same 6 outfits!  As much as we want him home though, we want him home and healthy!  All in good time....




This is Joshua after his hearing test... which he passed :)

Over a week old!

Lots has happened! Yesterday when we held Joshua, we were able to snuggle closer to him.  We spend a lot of time watching him, feeding him and changing his diaper.  Matt's becoming quite a pro at diaper changing.  I'll feed him and Matt can change diapers...I love that idea.

I'm looking forward to losing the baby weight. It will be nice when people stop thinking I'm having a baby.  About a half dozen times I've been in the elevator and some bold human being asks me when I'm due or wishes me a "Happy Mother's Day" to an expecting mom.  It usually gets very uncomfortable for everyone else in the elevator when I tell this person that I delivered not too long ago.  That elicits an akward pause in the conversation.  However, just yesterday someone told me that she didn't think I looked like someone who just had a baby...FINALLY!

Today has been crazy.  We got to the NICU at about 8:30am.  We hung out with Joshua for a bit and then the doctors started doing their rounds.  We met Joshua's neurologist, got an update from his neonatologist, and an update on his incision from the neurosurgeon. 

The neurologist is waiting on an MRI for Joshua.  He is actually in the middle of it right now.  This will hopefully give the doctors a good idea if he has any brain abnormalities.  We'll most likely hear back from them tomorrow.

The neurosurgeon said that his incision looks like it's healing great.  He can be laid on his back which is important for his MRI.  But the best news is that we can finally hold him!  I mean actually hold him!  It was such a great feeling to finally cradle him in my arms.  It sure makes feeding him a whole lot easier too!

We also met with the physical therapist who taught us some stretches to do with Joshua's legs at home.  This will help keep his legs loose and limber. 

The orthopedic doctor came by and looked at him. Unfortunately we weren't there because it was during the hours that the NICU is closed.  We should be able to meet with him on Monday. 

As you can see...a busy day!  We're still at the hospital and a little exhausted.  Looking forward to getting the MRI results tomorrow and hopefully breaking out of here before too long!

-Kim and Matt

PROGRESS!

Sorry it has been a few days since our last update, but it has been a little chaotic.  I was discharged Monday at 4:30 from the hospital (it was supposed to be noon). Literally, in the last hours of my stay at the hospital, there became availability at the Ronald McDonald House. Huge relief! Unfortunately, the Ronald McDonald House doesn't have internet access. In combination with a crazy schedule, it has been difficult to update. I apologize.

Joshua's last few days have been really productive. All the doctors do their rounds in the morning hours between 7-9, so Matt and I try to get to the hospital by 8am (when the NICU opens). His neurosurgeon has been monitoring Josh's head to see if hydrocephalus has developed. The day after his surgery, his head size increased slightly. We thought that would be the beginning of a steady climb. However, by the next day, it decereased back to the original size. Since then, it has not grown AT ALL! God continues to show how faithful He is!! So, if it continues to maintain no growth, we will be going home with no shunt, which is exciting... a little scary, but most of all exciting. Typically if hydrocephalus is going to happen, it forms within a week of when the surgery for the closure is performed. Then, after that week, the possibility of needing a shunt goes down. After the first year of life, if no need for a shunt has presented itself, the possibility decreases dramatically.

They took the bandaid off of Joshua's incision two days ago. The neurosurgeon warned us that it wouldn't look pretty, and he didn't lie. However, he was really happy with the closure. When they do the closure, they try to pucker the skin as much as possible to prevent cerebral spinal fluid from leaking. So, even though it looks scary, the doctor is really happy with it. Of course it is really emotional to see Joshua's back look like that, but since the doctor is happy, and we're happy. It's about 4 inches long and is risen off of the skin about 1/2 an inch.  As Joshua grows, it will flatten out more.  They are keeping the incision clean by routinely washing it.  They also have what are called "mud flaps," (yes...that's what they are called and that's what they look like!) to protect feces from entering the incision.  It basically looks like saran wrap that sticks to his skin right below the incision.  The plastic is then folded back and sticks out of his diaper to prevent a rash.  His diapers are worn backwards so that it is easier to clean him up.

They are also continuing to catheterize him to see how much urine he is not empyting from his bladder.  They will allow up to 20 ml to be left in before they feel the need to be on a catheterization plan.  They begin by catheterizing every 4 hours.  Then they move to 6, 8, 9, and 12 hours.  He is now being catheterized every 12 hours because the amount of urine hasn't been too significant. This is great news because it means that we will most likely not need to go home on a catheterization plan!  Only time will tell.

Orthopedics have completed x-rays and have discovered that he has dislocated hips.  We haven't met with the doctors yet but they will tell us what treatment will most likely look like when we see them.  At this time we also have not noticed any movement in Josh's legs and feet.  Please, please, please pray for healing.

Originally the doctors told us that I wouldn't be able to breastfeed for at least a week after surgery.  When we talked to the neurosurgeon yesterday and he gave me the thumbs-up to start trying.  Of course I am not able to hold Joshua like I typically would but it is exciting to be able to start feeling more like a mom and less like an observer.  The only way we've been able to hold him is by laying him tummy down on a pillow up to this point because we can't put pressure on his back.  Today I got to have him nuzzled up close to me while he layed on his side.  These small victories mean the world to us. 

The nurses have been doing a great job of preparing us to take care of him.  We are starting to feed him more, change his diaper, and tomorrow we will learn how to clean his incision.  He's finally starting to feel like ours!

So as you can see, God has been doing some great things.  He has also continued to stretch our faith.  Thank-you everyone for your e-mails, calls and text messages.  We haven't been great at returning all of them because of time constraints but they have encouraged us in ways that words can't express.  It doesn't feel like we're alone here...we have all of you with us. 

Kim and Matt

Happy Mother's Day!

Happy Mother's Day to all the moms!  It was a beautiful Mother's Day for me. We headed over to the NICU this morning at about 8:30am.  Joshua had a really great night.  They had him on oxygen all of yesterday just to be safe.  He was teetering on needing it and not needing it.  It kept falling out of his nose anyway because he only lays on his stomach. Since he did so well without it they decided to remove it. 

When I came in, the nurse told me "Joshua and Brandi (his nurse) made something for you last night."  They had put Joshua's handprint on a little paper doylie for Mother's Day.  It made my heart melt!  I held him on his little pillow for about an hour.  I had to leave for a bit and when I came back they told me that I could feed him his first bottle!  Originally the nurses said that they were going to attempt to give him a bottle after he was finished with his morphine.  Since he was so alert though, they felt that it would be a good time to be able to try.  Plus they knew it would be special for Matt and I to be there.  He didn't take the bottle as well as we would have liked but he drank about half an ounce and the nurses said that it was successful being as how this is the first time he's drank from a bottle.  They were going to try 2 more times tonight.

I love the nurses here!  Both at UAB and at Children's Hospital.  We couldn't have asked for better people to be working with our little man and myself.  The nurses here at UAB have sympathized with my situation and been completely understanding about me coming and going.  Joshua's nurses have been extremely caring and have made some of the milestones like holding him and feeding him possible for us.

Please continue to pray for joy and peace for us. We pray Romans 15:13, "May the God of hope fill you will all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit."  We are literally only held together by the Lord and one another these days.

Our first family photo! It's Matt and I and in that little tiny box in the corner is Joshua. :)

The first time I was able to touch Joshua Eli.

2 Days Old!

I can't even begin to explain to you how cute this little boy is!  Of course I'm partial but believe me when I say HE IS PERFECT!

Today started with us rushing around this morning so that we could quickly get to Children's Hospital to see Joshua.  We were told that today we would probably get to hold him so we didn't want to delay.  It was so wonderful....needless to say, an emotional moment.  Since his back is in the process of healing, he had to lay on his tummy.  They put a pillow underneath him and a little "donut" for his head and he was able to lay on our laps for about an hour each.  Lucky for Matt, I needed to pump otherwise I'm not sure I would have let go of him.  This gives us so much excitement for when we get to pick him up with no restrictions and cradle him in our arms.  We probably won't put him down for a year! :)

They still haven't fed him yet. He's getting lipids and vitamins intravenously for nutrition.  They didn't want to feed him before his surgery and now he is on morphine for pain so they don't think he would be very receptive to a bottle.  They don't foresee me being able to nurse him for at least another week unfortunately.  Something else to look forward to!

We went back to UAB so that I could rest for a few hours while the NICU is closed for shift change between 2pm and 4pm.  We visited him again tonight for a few short hours.  I had to take it easier today because I pushed my body too far yesterday.  My nurses weren't very happy with me but I don't regret a second of it. :) 

We look forward to seeing him again tomorrow. It will be my first Mother's Day and a wonderful one at that! 

It's a Boy!!

Yesterday Joshua Eli was born at 10:15am at 7 lbs 11 oz and 19 inches long. He surprised us in a few ways...he was much bigger than we thought he would be, he has a head full of beautiful brown hair, and he was a boy:) It has been so exciting to meet the baby that we've been imagining for so long.

As planned, we had an amnio scheduled for May 4th to check to make sure that the lungs were mature.  The doctor went ahead and schedule me for my delivery on May 5th being 95% sure that everything would be in order for a May 5th delivery.  I began prep for my c-section at 8:00 and was finally wheeled into the OR at 9:45. They got him out at 10:15. Because the sac that covers the exposed area on his back was ruptured, they took him into a separate room within the OR immediately to cover his back with a sterile plastic covering and placed him in an enclosed isolet. It was then that we first saw our beautiful baby boy. Man is he chubby, especially considering that during the amnio the day before they measured him at 6 lbs 10 oz. My OB shared after Joshua's delivery that the only fluid she could find to take during that amnio was right next to his penis...we were none the wiser:)

Rather than the original timeline of 4 hours with us at UAB hospital, the doctors and nurses felt that it was in Joshua's best interest to transport him over to Children's Hospital 2 short hours after his birth due to the risk of infection to his back since it was ruptured. Matt was able to be with him while he was transported and my sister was able to come and be with me in the OR recovery. The nurses told me that with permission or not, they were going to find a way for me to see him even if it meant wheeling him in with a blanket over his cart:) Allison and I were in conversation when we suddenly heard the tiniest muffled cry because he was in his isolet. When they brought him in, they opened his 5 inch round window and we had our first physical contact by holding hands. Though this seems small, it was the highlight of my day.

Once over at Children's Hospital, the NICU did their own assessment and got him settled in while Matt handled his paperwork. We're very pleased with the quiet, peaceful environment that Joshua is in and how loving the staff is. It helps us sleep at night knowing that he's receiving such good care.

By the end of the day, Matt was able to meet with Joshua's neurosurgeon, neonatologist, and anethesiologist. They put Joshua on the schedule for early the next morning to do the closure on his back. Needless to say, I was exhausted from delivering and Matt was exhausted from running back and forth.

Today we arrived at Children's Hospital at 6:30am to meet with the neurosurgeon before Joshua's scheduled 7:30am surgery. It was a very emotional moment when I was able to be reunited with Joshua since I was only able to spend about 2 minutes with him the day before. He had received a sponge bath that morning and the nurse gave him "church hair"....it was parted and combed down on each side of his head.

The OR staff brought Matt and I back with Joshua to where his surgery would take place. We got to say good-bye and they gave us a pager for the OR staff to contact us every hour to give us updates. Surgery lasted a little over 3 hours and we got 4 updates. Each update was very positive about his progress. Since Joshua's repair was quite large and a little tricky, the neurosurgeon called in his colleague to work on one side while he worked on the other. After the surgery was finished the neurosurgeon spoke to us about the healing process which will likely take 4-6 weeks (not the original 2 weeks that we were told). He will lay on his stomach for the first week to allow his back to heal. If by next week he needs a shunt, they will do the procedure at that time. The doctors still do believe that it's a 90% chance that Joshua will need a shunt. We're really hoping to get the opportunity tomorrow!  Joshua is on a morphine right now.

The nursery closed from 2:00pm until 10:00pm today because there was an emergency so I took the opportunity to head back to UAB to get some rest and continue to recover from the c-section. Even though I need the rest, we were excited to possibly have the opportunity to hold Joshua for the first time tonight. Unfortunately it just didn't work out.  So we're hoping for tomorrow!

Thank you all very much for your love, support, encouraging messages, and most of all, prayers. Please pray for peace, upcoming tests that Joshua will have, as well as shunting and God's healing for him. We will put up another update tomorrow!

35 weeks and counting...

We're 3 weeks away!  Time is flying by.  We just had another appointment this past Tuesday.  The baby's ventricles still look within the normal range.  Great news again!  Although the doctor still predicts that the baby will need a shunt because of the size of the sac on the baby's back, we are praying for a miracle.

An amniocentesis has been scheduled for May 4th.  They will process the results and as long as the lungs are mature, we will pursue delivery on May 5th.  We are going to have a Cinco De Mayo baby!  Maybe we'll have a celebratory flan!  :)

Please keep our little one in your prayers during these last few weeks!  We are still praying that God will do a miracle!