The Final NICU Days

Micah began making progress - very slowly - once he was off the ventilator. We learned that the recovery from a surgery like his goes very slowly.

They based a lot of how he was doing on the output that was coming out of his nasogastric tube (tube in his nose that goes down to his stomach that is hooked up to suction), his ability to pass stool, and his weight gain. Having the NG tube in allowed his surgical site in his duodenum to be at complete rest and recover after the surgery. Each day his NG output decreased, which was good. It just really took time to get down to a level that the surgeon saw fit to start feeding him by mouth.

His pain from the surgery was surprisingly controlled by tylenol alone. We learned that his abnormal posturing was most likely due his body's individual pain response and also to the morphine that he was receiving. This subsided and his posturing returned to normal after the morphine was discontinued and once the initial pain from surgery had passed.

On Monday, January 30th, (eight days after he was taken off the ventilator, and ten days after his surgery!) Micah got to eat for the first time! They started him off with 1 teaspoon every 3 hours! We had no idea how he would do, but he surprised us all and latched onto the bottle pretty quickly (it took a second to teach him what to do) and sucked that tiny amount down! At that point we were told it could still be a couple weeks he would be in the hospital...

During this time, Noah came down with a cold and Andy eventually got sick too. I then came down with the cold on Tuesday, January 31st and I went through Wednesday and Thursday without seeing Micah at all...there are no words to describe how difficult that was being separated from my baby. However, we got wonderful news on Thursday when the neonatologist called to update. She was updating me on his normal daily stuff and then threw in, "and he may be able to come home in a few days"!!!!

The next morning, I was feeling well enough to go see Micah and I was able to nurse him for the first time. Again, he shocked me with how well he did. I couldn't believe two and a half weeks had gone by without him having that, with how well he did!

Saturday, February 4th came, and was the day we had all been waiting for when we received orders for Micah's discharge from the hospital. It was all so SURREAL. We had been waiting for this moment for 19 days, and I couldn't believe it was finally here. We had been prepared to stay for a couple more weeks, but once Micah started eating, he made great progress so fast! We also found out on the day of discharge that they received the results of the chromosome/genetic testing, and it came back normal!

One thing I have struggled with off and on: I am the first one to say how faithful God is, and how grateful I am that He healed Micah and gave us our miracle. But I can't help but think about what if we were not so fortunate to have Micah come out of this like he did? What if our worst fears did come true and we lost him? (It's hard to even think about.) I don't know where I would be, but I do know this: God would still be just as good and He would still be just as faithful. I don't know that I would understand and I'm sure I would be angry at times, but I have to believe I would still know of God's faithfulness and goodness.

Home at last...

One of the Scariest Days of our Lives...

Continuing the story from the previous post...early Saturday morning, January 21st (around 4 a.m.), I had just found out Micah's incision was no longer looking infected, and his nurse Julie mentioned they were going to potentially be attempting to extubate Micah soon (taking him off the ventilator and removing his breathing tube). I'm not completely sure why, but this terrified me. He was on the most minimal settings you could be on, while still being on the ventilator. He was basically breathing on his own, with the tiniest bit of support at the end of each breath he took. So everything pointed in the direction of a successful extubation.

I made my way down to the NICU around 5 a.m., the time I knew they were going to attempt this. I didn't want to be at his bedside (nor do I believe they would have let me...), but I wanted to be in the unit. When I walked through the doors to the NICU, I had this heavy feeling that I knew something was wrong. Standing at the nurses station, I looked through the window to where Micah's isolette was and he was surrounded by what looked to be about 10 people.

At that point, two nurses at the desk came to me and I asked if they had extubated him. They said yes, but that it hadn't gone well. Micah's airway spasmed when they took the tube out and completely clamped down. At that point they were attempting to get the tube back in and open his airway back up to begin oxygenating his body.

I just about collapsed to the floor in that moment, and cried out to God like never before. I truly thought we were about to lose our baby (or have an emergency tracheostomy - incision in his neck to open his airway -performed).

I truly could not handle it. I ran out of the unit into the hallway and called Heidie to go stay with Noah so Andy could come down. I then called Andy to tell him that she was on her way and to get to the hospital as soon as he could (without trying to completely panick him - although he is much better about that than I am).

I then made a phone call to Steve and Celeste, who are truly like second parents to me. Steve is one of the pastors at our church, who was my youth pastor growing up. They were currently on their 20 year anniversary celebration down on the coast, and I felt awful calling them, but at the same time they told me to call at any point and they are the type of people that really mean that. I explained the situation and they cried with me, grieved with me, prayed with me and for my family and for Micah, and encouraged me through one of my darkest moments. I can't say how much that conversation meant to me.

By the time I made my way back into the NICU, Andy had arrived and we found out they got the tube back in and got Micah back on the ventilator! They couldn't explain the reason for what happened, but Julie and the respiratory therapist (Chris, who I actually worked with at Shriner's!) mentioned it really looked like Micah had a seizure as soon as the tube was pulled. I was worried about how long he had gone without oxygen and she reassured me it wasn't long because they were bagging him off and on during the time they were trying to place the tube. She did tell me his heart rate dropped to the 50's (his normal was 140+), and his oxygen saturation dropped dangerously low as well.

Micah still trying to suck on his binkie while on the ventilator.


So I guess there seems to be a common theme throughout my posts on the journey we've experienced with Micah: I have absolutely no control. It's the times when I try to control things I can't that anxiety gets the best of me because I am relying on myself. God is beckoning me - beckoning us - to place our fears, our worries, our anxieties, our shortcomings, our impossible situations - everything - in His hands. When we do this, He promises to give us peace...not that it will always be easy or free of pain.

"Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." -Philippians 4:4-7-----TRUTH!

Long story short (:-)), I was discharged from the hospital later that afternoon and had to go home without our baby (HARD, nearly impossible). I somehow managed to go to sleep that night and woke up the next morning and called the NICU to get an update around 7:30 a.m. The nurse was updating me on some random things and then mentioned, "And Micah was successfully extubated at 7:08 and has been breathing on his own with no oxygen or signs of distress since then".

AAAHHHHH, yay!!!!!!!!!!!!!!!!!

Oh, and it was my birthday.

God is GOOD.

The following are pictures of all of us seeing Micah for the first time after he was taken off the ventilator successfully.

The following is the devotion from "Jesus Calling" on my birthday, January 22, the day Micah was successfully taken off the ventilator:

"Strive to trust Me in more and more areas of your life. Anything that tends to make you anxious is a growth opportunity. Instead of running away from these challenges, embrace them, eager to gain all the blessings I have hidden in the difficulties. If you believe that I am sovereign over every aspect of your life, it is possible to trust Me in all situations. Don't waste energy regretting the way things are or thinking about what might have been. Start at the present moment - accepting things exactly as they are - and search for My way in the midst of those circumstances. Trust is like a staff you can lean on, as you journey uphill with Me. If you are trusting in Me consistently, the staff will bear as much of your weight as needed. Lean on, trust, and be confident in Me with all your heart and mind."

Amen.

Do You Believe in Miracles?

Micah did really well following his surgery. He was pretty sedated the majority of Friday, partly due to the anesthesia from surgery, but also because they gave him ketamine after his surgery to place a PICC line. We spent all of Friday evening with him and I headed back to my room once Andy and Noah went home. But I still wandered down to the NICU during the night to spend time with Micah every couple hours (I was on a strict pumping schedule...so glad that's over!).

His nurse Julie, was amazing. She was so good with Micah, and she held nothing back from me. She was having concerns about his posturing. Typically a newborn curls into a ball, and when they arch their back and keep their arms stretched out, it could be due to a number of problems, including brain damage. It was one more thing that caused me extreme worry, and one more thing I just had to let go and put into God's hands in order to have some sense of peace. I tried to keep telling myself it was just his body's way of reacting to the major surgery he just went through.

Sometime Friday night (I think around 1 a.m. - it's all such a blur :-)), I called Julie from my room to get an update. She mentioned that she was very concerned with his incision. It looked fine when she first started her shift, and in a matter of about an hour it had turned very red, inflamed, and very warm to the touch. My heart sank as I made my way from my room down to the NICU...one more thing. It scared me to look at it, as I wondered what was going on inside his little body. An infection that came on that fast? Had something gone wrong with the surgical site inside?

I made my way back to my room (again with my crazy pumping schedule), called Andy to let him know what was going on, and spent the next 20 minutes praying specifically that God would place His healing hand on Micah's incision, that He would heal our baby, that Micah's body would be spared of going through any major infection.

I then tried really hard to get some sleep.

A couple hours later (maybe around 4 a.m.), I called Julie again to get an update on how he was doing. She went on and on about how his pain was, the ventilator settings, random other stuff, and then threw in, "Oh and I'm not sure why or how, but the redness in the incision is almost completely gone."

Needless to say, tears streamed down my face as I thanked God for an amazing answer to prayer.

A picture of Micah with the posturing he was doing: head arched back, arms stretched out to the side; you can also see the redness in his incision here.

Micah's Surgery and the Wonderful Dr. Keller

I met Dr. Keller on January 18th, the day after Micah was born. I was still processing the fact that Micah needed surgery, and Andy and I had many questions. She came into the NICU and found us by Micah's bedside (where most of our time was spent), and introduced herself. We began talking, and she described in a lot of detail the procedure she would be performing on Micah.

She described that his duodenum was completely closed (an "atresia) and the site was very high, right past the point of his stomach. She would go in and make incisions on the duodenum above and below the atresia, and attach those two sites, and leave the atresia there and off to the side. She explained the reason for this is that there are many connections and ducts to the pancreas and gallbladder from that portion of the duodenum, and removal of that section would disrupt a lot of those (if that makes sense...she explained it a lot better!). She also mentioned that there was a potential that once she saw inside, that Micah could have what is called malrotation, or twisting of the intestines, which is often seen with duodenal atresia (although neither one causes the other).

After talking with Dr. Keller, Andy and I felt a lot more comfortable. As much as we did not want to be in the situation we were in, she truly made it as easy as it could have been, she was truly a God-send. Noah also loved her from the beginning! She was so good with him, and always included him in the whole journey. She always took time to give him a high five and joke around with him.

The morning of Friday, January 20th came around, and Micah was scheduled to go to surgery sometime mid-morning. I spent most of Thursday night off and on at his bedside holding him, talking to him, praying for him. Andy, Noah, Grandma Eileen, Grandma Heidie, and Papa Bill all arrived that morning to spend time with him before his surgery. Shortly before he was sent to surgery, Pastor Eddy, the senior pastor of our church, arrived and we all prayed for Micah. I also asked him to read a portion of Psalm 139, which has always been a favorite of mine, and just something I wanted to hear read over Micah before he had to leave:

"For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be." -Psalm 139: 13-16

Everyone gathering around to pray for Micah before surgery.

Noah saying goodbye to his baby brother!

Our last look at Micah before he was wheeled to the OR.

Daddy saying goodbye.


Dr. Keller allowed us all to stay in my post-partum room as opposed to the surgical waiting room (another reason I loved her, she was so thoughtful!). She said as long as she knew where we were, she would come find us to update us after the surgery. Andy and I walked with Micah as they wheeled his isolette to the pre-op room. I must admit, that was definitely hard squeezing his tiny finger one last time before they wheeled him down the hall to the operating room...

The surgery lasted about two and a half hours, and our time was spent hanging out in my room. This was especially nice for Noah because he got to just sit with me and cuddle and we watched movies on the iPad. We had been updating everyone at this point, through facebook, phone, and the prayer chain at our church. So many people told us that they were praying, and I have to say, we FELT it. It's hard to explain, but there was an overwhelming PEACE in that room. Not to say it wasn't hard, wasn't emotional...it definitely was. But I just really felt at peace in the midst of it.

Dr. Keller came to my room after the surgery was finished. Grandma Eileen and Grandma Heidie took Noah to get some lunch while she talked to Andy and I. She said the surgery went GREAT, and that Micah did GREAT! What an amazing thing to hear, and what a relief! One story we loved was when she told us that she made the incision above the atresia and was having a hard time finding the spot to make the incision below. Right after that, she said a small portion of bowel literally popped up, as if to say, "Pick me!".

She also told us that Micah did in fact also have malrotation, on top of the duodenal atresia. She corrected this by performing a "Ladd" procedure, where the intestine is straightened out, the small intestine is folded into the right side of the abdomen, and the colon is placed on the left side. So Micah's entire large intestine is on his left side, where normally it wraps around the outside of the abdomen. Because of this, she removed his appendix because if he ever developed appendicitis, he would experience left upper abdominal pain instead of right lower, and some doctors would not know to check for that. Crazy!

They said there was a chance Micah would stay on the ventilator after surgery, and he did end up coming back to the NICU still on it. It was definitely hard seeing our baby intubated...but it was amazing getting to see him, hold his hands, talk to him and tell him how strong he was and how proud we were of him.

This was the devotion from "Jesus Calling" on January 20, the day of Micah's surgery:

"Approach this day with awareness of who is Boss. As you make plans for the day, remember that it is I who orchestrate the events of your life. On days when things go smoothly, according to your plans, you may be unaware of My sovereign Presence. On days when your plans are thwarted, be on the lookout for Me! I may be doing something important in your life, something quite different from what you expected. It is essential at such times to stay in communication with Me, accepting My way as better than yours. Don't try to figure out what is happenning. Simply trust Me and thank Me in advance for the good that will come out of it all. I know the plans I have for you, and they are good."