3 weeks old!

It's so hard to believe that Benjamin is already 3 weeks old! We've had a great first week at home and things seem to be settling in. He's eating and sleeping well and we are so thankful!

Benjamin at home

We are enjoying having Benjamin at home! He had a good check up at the pediatrician on Monday. She said he looked like a normal healthy baby! We will have a follow up appointment with the Neurology team in a few weeks and hopefully they will say the same thing!

Here are some pics of Benjamin, he so sweet!

Bringing our baby home!

We were discharged from the NICU today around noon!! It is almost hard to believe that we are now at home with little Benjamin. Conner finally got to meet his little brother, "Benjaway" as he calls him. It has been such a sweet day. Thankful for so much.

Saturday 9/22 Update

Benjamin had his MRI today and we just got a call during dinner that there was nothing new on this follow up MRI! Praise the Lord!!! They have told us that he will most likely be discharged tomorrow sometime! We cannot believe this exciting news and are overjoyed at the thought of bringing our sweet boy home so much sooner than expected.
Cam and I were just talking over dinner about all the things we have learned from this experience. I think the biggest thing we both have witnessed is how absolutely amazing community is. We truly believe we have witness it as God created it to be. It is so powerful, uplifting and crucial. To be surrounded by friends, family, acquaintances and strangers in the way we have been lifted up is something I can't even begin to describe. We have been so humbled by and grateful for everyone that has reached out to our family whether it be by texts, calls, bringing us meals, praying for us, emailing us, etc. We are so grateful to walk through this with you.

Thank you for all your support!

Much love,
The Hardaways

Friday 9/21 update

No MRI last night and we got bumped from tonight as well. It is now supposed to happen tomorrow. But we are getting some good quality time together just nursing and enjoying each others company. Thankful for a good quiet day.

Pictures

Pictures from when Benjamin was on the cooling blanket:

Pictures from today:

Dee Dee & Poppa Hardaway

Thursday 9/20 Update

This afternoon I was able to successfully breastfeed Benjamin! We had been told we would probably need the help of the occupational therapist to teach him how to suck and swallow, etc. but little Benjamin said he didn't need any help. Cam got to be there and it was such a special time for us. 

The doctors were trying to get him into his MRI tonight, so please pray that it goes smoothly and that the results are clear! 

Praise His Holy Name Day 11-12

I know I have skipped over about a weeks worth of info but I just had to share our joyous news because I'm busting at the seams!

Yesterday morning the chest x-ray showed Benjamin's right lung had re-inflated. They took him off of the oxygen assistance mask called cpap at 3:20pm yesterday. I got back to the hospital around 4 and got to have some skin to skin time for about 2 hours! He did well and didn't need any oxygen assistance. He also was given 12ml of breast milk in his feeding tube and he was showing signs of digesting it. All of these are steps in the right direction.

Cam and Poppa came up to say goodnight to Benjamin around 8pm and he was still off the mask!

I went to sleep praying and believing that he would still be off the mask when I came in this morning. 

As I woke up I did begin to feel doubt but prayed that the Lord would take that doubt away. My sister also messaged me the words to the hymn "In Christ Alone" for encouragement.

In Christ alone, my hope is found! He is my light, my strength, my song

This cornerstone this solid ground, firm through the fiercest drought and storm. What heights of love, what depths of peace, when fears are stilled, when strivings cease! My comforter my all in all--Here in the love of christ I stand!

I also read this verse in the Jesus Calling devotional book:

17 For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. 18 So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.

2 Corinthians 4:17-18

So I walked in at 9am and saw my beautiful Benjamin mask free and just sucking away on a pacifier!!!! The doctors had ordered him occupational therapy to help him learn to suck and swallow. The OT came in earlier this morning to try to give him his first feeding by bottle. He sucked it right down with no problem and would have taken more. Really this is such a miracle! They had prepared me for lots of training ahead and that we would have to teach him to do this. But he did it all on his own!! And then he took the paci as well. Also such a good sign.

I can't describe the overwhelming joy and thanksgiving that I felt as I came in this morning and heard all of this news!

I took him in my arms and am still sitting here holding him! And blogging from my phone now that he is asleep ;)

But we just looked at each other like it was the first time we had met. His eyes so intently looking into mine and making funny faces and looking like he was just processing it all.

The doctors came by on rounds and were all so happy and joyous with me as well. They all commented on how he has made such huge strides and has surprised them all! Benjamin's resident doctor came by again and sat with me and shared my joy. She also said she can tell there is more at play here than just medicine in Benjamin's miraculous recovery. I told her that he has been greatly covered in prayer and she nodded her head. -- The Lord is working in the hearts here at the hospital through little Benjamin's life! Just like the verse said this morning-

"For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all."

Next step: We will begin to work on breastfeeding this afternoon!

He has a follow up MRI scheduled for Friday evening. Please pray for good results and that nothing looks abnormal. And that it would not be a traumatic experience for little Benjamin.

Thank you for all your prayers, the Lord has heard them and has answered in a mighty way! We are overwhelmed with thanksgiving & joy!

Day 6 - 10

By Friday morning, Benjamin was warmed up to normal body temperature of 98.7 degrees. He did well throughout the warming process and was stable through the night. He did require slightly more oxygen during the night but was back at room air using some pressure from the CPAP. 

Friday morning, I got there around 9am and they were doing an EEG to check his brain waves and look for any signs of seizures. He had to have some steroids because his throat was inflamed due to being intubated 2 times. 

I got to change his diaper for the first time that morning! Oh how the little things mean so much to me now!

That afternoon I got to hold my sweet baby boy for the first time! I can't describe it, but it felt so good. He was so content and just slept sweetly in my arms. He seemed to be making lots of progress and we left the hospital that afternoon in such celebration. 

Later that evening he was going to his MRI and I called to check on him. The nurse said he was getting upset because they were moving him, so Cam decided to go up there and check on him as he came back from the MRI. The nurses reported that they had seen some seizure like activity as he was going to the MRI. Cam witnessed him struggling and seeming upset as well. It was hard to get this news after such a day of celebration. 

They started him on a 24 hour EEG to monitor his brainwave activity to see if he was indeed having seizures. They did discover some activity on the EEG and extended it another 24 hours. They decided he was having "Sub-clinical" seizure like activity. These sub-clinical seizure that were registering on the EEG were not showing on the outside however. They started him on some medication called phenobarbital to control potential seizures. 

This medication made him very sleepy again and so it felt like we had taken some steps backwards. 

During this time, his right lung collapsed as well. They aren't sure exactly the cause, but he had been on his back for 6 straight days and had a lot of secreations in his lungs that he was not able to clear out. 

They started him on breathing treatments every 6 hours for the next few days. 

Monday morning we had a new doctor on rounds. It was hard to make this transition and begin hearing someone else's opinions and outlook on the situation. We were wanting everyone to be unified in the information they were communicating, but the reality is that everyone does have different experiences with patients which affect their opinions and outlooks. This doctor was not as positive about the hopes of Benjamin going home any time soon. Or the thought of him being able to eat well. She told us it was going to be a long road of occupational therapy and physical therapy to help him learn how to suck, swallow and breathe. Even though she said these things to us, I told her that we hoped Benjamin would prove her wrong. I believed in my heart that he would! 

The few days after Benjamin was put on the seizure medicine he pretty much slept all day. It was a good time for Cam to go back to work as well. Since we thought we were looking at a longer road of Benjamin at the NICU, he felt that being at work now was important. Thankfully his coworkers were very compassionate and understanding. We also got the official reading of the MRI that they did not see anything of major concern, but want to repeat it in a week since he had just come off the cooling blanket it may not have shown an accurate picture. 

So God was asking us to wait. It was so hard, but there was nothing new the doctors could tell us and we just had to wait and see what Benjamin would do. 

Some encouraging verses from my mom & her friend: 

I wait for the Lord, my whole being waits, and in his word I put my hope. Psalm 130:5

No one who hopes in you will ever be put to shame. Psalm 25:3

The passages that our minister had prayed over Benjamin came to mind as well:

Romans 8:24-28 & 31-35

Encouraging scripture from my little brother Chas:

Psalm 27

The Lord is my light and my salvation--whom shall I fear?

The Lord is the stronghold of my life--of whom shall I be afraid?

When the wicked advance against me, it is my enemies and my foes who will stumble and fall. 

Though an army besiege me, my heart will not fear; though war break out against me, even then I will be confident. 

One thing I ask from the Lord, this only do I seek: that I may dwell in the house of the Lord and seek Him in his temple. 

For in the day of trouble he will keep me safe in his dwelling; he will hide me in the shelter of his sacred tent and set me high upon a rock. (Thatcher)

Then my head will be exalted above the enemies who surround me; at his sacred tent I will sacrifice with shouts of joy; I will sing and make music to the Lord. 

Hear my voice when I call Lord; be merciful to me and answer me. 

My heart says of you, "Seek his face!" Your face, Lord, I will seek. Do not hide your face from me, do not turn your servant away in anger; you have been my helper. 

Do not reject me or forsake me, God my Savior. 

Though my father and mother forsake me, the Lord will receive me.

Teach me your way, Lord; lead me in a straight path because of my oppressors. 

Do not turn me over to the desires of my foes, for false witnesses rise up against me, spouting malicious accusations. 

I will remain confident of this: I will see the goodness of the Lord in the land of the living; be strong and take heart and WAIT for the Lord.

My sister, Charlotte also shared this video with me that morning that really expressed how I was feeling as well. 

See post from earlier this morning titled Praise His Holy Name for the answers to that waiting the Lord asked us to do. 

Cooling blanket Day 1 - 5

From Saturday, September 8th at 8:40pm through Thursday, September 13th at 8:40pm Benjamin was on the cooling blanket and pretty much slept the whole time. His body was basically in a medically induced coma in hopes of allowing his brain and other vital organs to get the rest they needed to try to recover from the shock they experienced at birth as well as try to prevent further damage.

During this week we spent a lot of time talking to him, praying over him, singing to him and holding his hand. We were not able to hold him since he had to maintain the lowered body temperature.

Picture from this morning

Benjamin's Name

Benjamin Thatcher Hardaway

First Name: Benjamin 

named after Cam's paternal grandfather, Benjamin Hardaway 

and my maternal great-grandfather & great uncle Ben Broocks.

Middle Name: Thatcher

 I had been praying and wanting a middle name that was a sign of hope for Cam and I and my dear friend Emily C. emailed that same night with prayers for a protective covering and shield from the Lord in times of suffering and pain, and that the Lord had put the name Thatcher on her heart. It was perfect.

Here is a picture from the first time I got to meet little Benjamin. He was 3 days old.

Benjamin's Birth Story

Saturday, September 8th we went to the hospital around 8:30am to be induced. My OB and I decided not to wait past my due date since I had been experiencing severe back pain and since we are also so far away from our families and needed help with Conner, our 2 year old. The nurses started me on pitocin and my OB came in around noon to break my water. My contractions were registering on the monitor, but I was not really feeling them. I did lots of walking up and down the hall but that didn't seem to help much. They kept increasing my pitocin levels trying to kick start active labor. The nurse checked my progress around 4:30 but I had not dilated any more since the doctor had broken my water. This was discouraging since it had been over 4 hours. The nurse was concerned because the baby's heart rate kept dropping during contractions and she thought maybe he was messing with the umbilical cord. So I tried laying in a different position to try to help him move.

 The nurse came back about 5 minutes later saying she still thought he was messing with the cord and couldn't get a good heart rate reading. At this point I began to feel some leaking and thought it was just more water. I told the nurse since she was sitting there and she checked and discovered it was blood. Immediately she called code blue and there were several nurses in the room within seconds. The head nurse called for an emergency c-section because they could not detect the babies heart rate. Cam grabbed my hand and said the Lord had us exactly where he wanted us and everything was going to be alright. And then I was rushed down the hall to the delivery room and Cam was left in the labor room with no idea what was happening. My ob was called, but thankfully there was a surgeon on the floor at that moment to begin the delivery. I did not have an epidural yet, so I was put under with general anesthesia. I was told the rest of this information because I don't remember any of it. I am also communicating it to my best understanding of the situation. I am not a doctor and may get some of the information incorrect, but this is what I understand to have happened. At 5:30pm our baby boy was delivered within 17 minutes from the time they discovered the blood. He was given CPR, a blood transfusion and was then intubated. 

It was determined that I had what is called a "velamentous cord insertion". 

Wikipedia explanation: Velamentous cord insertion is an abnormal condition during pregnancy. Normally, the umbilical cord inserts into the middle of the placenta as it develops. In velamentous cord insertion, the umbilical cord inserts into the fetal membranes (choriamniotic membranes), then travels within the membranes to the placenta (between the amnion and the chorion). The exposed vessels are not protected by Wharton's jelly and hence are vulnerable to rupture.

My contractions caused the cord to separate from the membranes, causing the bleeding, and the baby to loose oxygen & blood. Since he had suffered such a severe shock, it was determined that he needed to be in a level 4 NICU. The hospital I was at only had a level 2 NICU, so he was transferred by ambulance, to the Lucile Packard Level 4 NICU at Stanford Hospital in Palo Alto. This is about 15 minutes from the hospital where he was delivered. The doctors decided to put him on a "cooling blanket" or hypothermia treatment, that might prevent or minimize the long-term consequences of brain injury due to loss of oxygen at the time of birth. This involved placing him onto a cooling blanket and quickly reduced his body temperature to about 88 degrees farenheight for 5 days. So he began the cooling process around 8:40pm on Saturday, September 8th. He was basically going to be in a medically induced coma for the next 5 days.

I was woken up just as the emergency team was discussing the cooling therapy with Cam, but remember very little about the remaining events of that evening. All I knew was that I did not get to see my baby before he was transferred. Cam stayed with me for a while in recovery and then went to the NICU to be with the baby.

Benjamin Hardaway Updates

Cam and I have started this blog in an effort to update family, friends and everyone supporting us through this difficult time. We have been overwhelmed by the love, support, prayers and generosity that everyone has offered up to our family. We could not walk through this on our own. We are so grateful to everyone who has reached out to us. Thank you so much for caring for us!

This is an especially meaningful passage to our family at this time, shared with us and read over Benjamin by our pastor, David Jones. 

  

"For in this hope we were saved. Now hope that is seen is not hope. For who hopes for what he sees? But if we hope for what we do not see, we wait for it with patience.

Likewise the Spirit helps us in our weakness. For we do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words. And he who searches hearts knows what is the mind of the Spirit, because the Spirit intercedes for the saints according to the will of God. And we know that for those who love God all things work together for good, for those who are called according to his purpose. For those whom he foreknew he also predestined to be conformed to the image of his Son, in order that he might be the firstborn among many brothers. And those whom he predestined he also called, and those whom he called he also justified, and those whom he justified he also glorified.

What then shall we say to these things? If God is for us, who can be against us? He who did not spare his own Son but gave him up for us all, how will he not also with him graciously give us all things? Who shall bring any charge against God's elect? It is God who justifies. Who is to condemn? Christ Jesus is the one who died—more than that, who was raised—who is at the right hand of God, who indeed is interceding for us. Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or danger, or sword?

No, in all these things we are more than conquerors through him who loved us. For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord."

Romans 8:24-39 

Much Love,

The Hardaways