Deep breath as I gather my thoughts and emotions right now. So much has happened in the last few days…
First of all, let me start by saying that Levi is stable and doing well. He is not necessarily making progress and has had some setbacks (we will get to all of that) but all of the issues are “non-life threatening”. I just want to get that out before I start this entry.
Tuesday morning started out well as I dropped Malachi off at school and headed into town (30 minutes from home) to run some errands. As you know, my doctor appointments were every Monday, Wednesday, and Friday so Tuesday and Thursday were my catch up days to get stuff done. After grabbing some lunch I stopped by the restroom for a potty break before continuing on my errands. As I sat down to empty my bladder I had a sudden major gush of blood and knew something was terribly wrong.
I immediately got in my car and headed to the hospital, calling the doctor on the way. I was trying my very hardest not to panic but as I drove I could feel my uterus starting contractions. I called Jake and told him to come quickly from the high school (about a 35 minute drive) and clung to the fact that I could still feel Levi moving inside of me.
I was able to get into a bed in the labor and delivery ward within minutes of arriving and they began tests to see what was happening. At that point I was contracting every 2-3 minutes, but when we checked the ultrasound little Levi was content as could be, playing with his toes. I was given a steroid shot under the assumption I would deliver that day and both teams of doctors (regular OB and high risk) talked to determine how to proceed. There were a few factors coming into play: 1) the longer you can delay after a steroid shot the better as it helps develop the baby’s lungs 2) I had my blood thinner injection that morning at 9am which could make operating a little risky for potential bleeding issues and 3) I had eaten lunch making my risk for aspirating during surgery high.
We waited as long as we possibly could, but as my bleeding continued the team grew more and more nervous. It was decided that we needed to do a C-section under general anesthesia (mom completely asleep) quickly, but Jake had left to go get Malachi from school and grab our hospital bags from the house. We waited until he returned, said a prayer, and to the OR I went. I had, in fact, had another placental abruption like I had done with Malachi and the blood thinning injections I had done through the pregnancy allowed the blood to manifest instead of clotting like last time.
Levi Daniel was born at 5:57pm on Tuesday evening, making him 34 weeks and 6 days. He was 4 pounds 8 ounces at birth and 18 inches long. He was having a little trouble with his breathing at birth so after an unsuccessful attempt at CPAP he was put on a ventilator to help him breath. Jake was able to go and see him and take a few pictures for me. Then they loaded him into an isollete and took him to Chattanooga to a higher level NICU. They did allow me to see him prior to him leaving, which was absolutely wonderful.
The plan was relayed to me that I would be transferred to the same Chattanooga hospital the next day so I could be near him. The next morning when the doctor rounded she said that was not in fact the plan, but rather they were going to try to discharge me to get me down there to him. This was shocking to me as I didn’t think they would release me so quickly after surgery, but I was grateful! Unfortunately my white blood cell count was elevated and they wanted to watch me for another 24 hours for possible infection.
In the meantime, Levi was doing very well and was able to be extubated and put on a nasal cannula. Jake dropped Malachi off and school and went down to spend time in the NICU which brought me peace.
After a very emotional Thursday morning I was finally discharged and raced to Chattanooga to spend time with my new son. Getting to be next to him brought me so much peace…he is such a beautiful boy. I even got to hold him, and seeing him try to find me when he heard my voice was such a special moment. We were reunited and all was well in our world!
Jake and I headed back home to pick up Malachi from school and pack our bags, as we had gotten the phone call about an open room in the Ronald McDonald House. By Thursday evening we were moved into our new home away from home.
Friday morning I headed over to visit Levi and found that he had been placed on CPAP. My heart wasn’t quite ready for our first complication and I absolutely lost it. I just wanted an easy and smooth road of Levi growing and us going home quickly, which I now realized might not be our reality.
Levi has a stridor, meaning he is having some respiratory distress making it a little difficult to breath. When he gets upset he is breathing so hard that he is lifting himself off the bed and his abdomen retracts to his spine. The nurse on duty said it was by far the worst retractions that she has ever seen and it truly is scary to watch him struggle so much to catch his breath.
The NICU doctors consulted with pulmonology who decided we needed to look inside his airways to see why Levi couldn’t catch his breath. The fear was a cyst or a node that was restricting his breathing, or a paralyzed vocal cord and the only was to know for sure was to send a camera down. Within the hour we had him in one of the surgical rooms under sedation exploring his throat. They found it was incredibly swollen and one of the vocal cords is completely raw from where the ventilator tube was placed the night he was born.
We are trying desperately to get his throat to heal enough that he doesn’t need oxygen support, but each time he gets upset it irritates it further. We have done several doses of steroids to try to speed up the healing but it will take time. Because he wasn’t getting the oxygen his body needed he was struggling with several other issues, like acidosis and circulation issues. In fact, his little feet turned black from lack of oxygen. He was also severely jaundiced requiring bilirubin lights, but his levels today have been decent.
In addition to his respiratory issues right now, his blood culture came back positive for an infection so we are starting antibiotics to treat whatever that may be. He also had to have a spinal tap this afternoon to get a sample of spinal fluid to make sure there is nothing brewing in there. Every time he has to have blood drawn of have an IV put in he gets upset and his throat just isn’t getting the chance to heal.
His weight is down to 4 pounds 4 ounces, but he is on a feeding schedule now which should help pack on the pounds. He is being fed my breastmilk through a tube down his throat.
Here are some pictures of his face during a mask change:
So our hopes for simply a “feeder/grower” situation are dashed as we start on yet another dreaded NICU journey. I have been trying very hard to compartmentalize the two experiences, putting Malachi’s NICU memories in a jar of their own and trying to not make comparisons. It is actually proving to be harder right now as Levi is very aware of the pain he is suffering and much more reactive to it than Malachi was. It breaks my heart to hear him whimper in pain and see the holes in his veins from the many IV sticks and blood draws. He currently has one in his head which is hard to look at.
Emotionally this has been a struggle. I can’t put into words how difficult it is to connect with a child in your womb, birth him, and then not get to be with him. As I sat in my room at the hospital I had to listen to newborns crying all around me as they carried them to their mothers from the nursery for comfort…the way it is supposed to be. It hurt to not be able to do that for my son.
Levi is not stable enough these days for Jake and I to get to hold. I was able to hold him on Thursday, and one other time but Jake has not yet. We sit by his bedside and hold his little hands and feet, but it is so hard to see him cry and not be able to do anything about it.
Our worlds are colliding in ways that my heart isn’t quite ready for. On Friday for his exploratory procedure they took us down the outpatient recovery rooms- the very same room we have sat with Malachi after each of his surgeries. The same room where he almost bled out after his heart procedure a few years ago. I still see all the blood when I look at that spot on the floor. It is very difficult to keep the two experiences each in their own compartment and not allow my flashbacks and emotions get the best of me.
Although it is another NICU experience, it is a different one as we know what to expect a bit more…which is a good and bad thing. Sometimes ignorance is bliss as I find myself stressing about what I know could happen. For example, they started him on some very strong antibiotics yesterday and I have been so upset as I remember this particular one burned through Malachi’s IVs. I told Jake yesterday that I am terrified they are going to ask to put a PICC line in Levi- and sure enough when I called at 4am the nurse mentioned the possibility of a PICC procedure as he burned through another spot last night.
So in summary, Levi is stable but we will be here for several weeks. There are just too many small things piling up right now to predict any timelines for going home so we are just focusing on day by day. We need your prayers that he will overcome his respiratory distress and heal completely.
Jake is on Malachi duty and some family and friends from church come by periodically to watch Malachi so Jake and I can go across the street together. Malachi loves listening to videos of baby brother:
Malachi also go the chance to meet him and touch his toes on Saturday. He was very aware that it was Levi and very intrigued by him. It was fun watching him process.
Malachi is handling “our adventure” as we are calling it better than expected. He is sleeping well for us in the Ronald House and Jake has been Superdad in regards to caring for him while I heal.
We will plan to keep you all updated as we continue through NICU round 2. I will probably aim to do a mid-week update as well so if you aren’t “following” the blog yet and want to get an email when I update make sure you do that.
But the most important thing you can do for our family right now is pray for strength. I have been able to keep my wits about me so far but I am starting to feel myself unraveling a bit. I am discouraged. I just wanted things to go differently this time, for the comfort of my son.
Pray that we are able to settle into a routine with Malachi where he is getting the stimulation and focus that he needs as well. And pray for health for our family. If any of us get sick we are required to leave the Ronald House and won’t be able to visit the NICU.
We are continuing the tradition of taping verses on Levi’s bed each night, and yesterday’s was as much for me as it was for him:
Deuteronomy 31:8 “Do not be afraid or discouraged, for the Lord will personally go ahead of you. He will be with you; He will neither fail you nor abandon you.”