All week long I have been taking notes in my phone about the uplifting things I want to share with you, and we will definitely get to those but frankly I am in a pity party mood so allow me to get the frustrating updates out of the way…
Levi is still stable but not really improving at all. Not getting better but not getting worse. His stridor (wheezy breathing) is still very bad and the doctors can’t seem to pinpoint exactly why it is taking so long to heal. A typical stridor is usually healed by now. We are going to meet with pulmonology again this week to pick their brains.
After an aggressive change in oxygen levels, we have decided it is best to park Levi at 4 liters on the nasal cannula until the stridor heals. He gets upset and starts crying, can’t catch his breath from the stridor inflammation, and then begins to hyperventilate. When he does this they have to turn up his oxygen percentage to try to help him relax and calm down. He has been very easily agitated the last two days and these angry spells are getting more and more frequent. The last two days he has been getting so upset that he is vomiting during these episodes and a few of those have had some blood in them. We are hoping the blood is simply irritation residual but will be watching it to make sure.
Today was a doozy of a day. For the last week or so I have been having some pretty intense pain in the right calf that feels exactly like a pulled muscle. This was interesting to me as I couldn’t think of any reason that my leg would be that sore. I would stretch it before bed and each morning when I awoke it would be at the same level of pain as the day before. Of course I did what we all do when we think something is weird and I googled it. “Leg pain after C-section”. Immediately articles came up talking about the potential for blood clots and the signs and symptoms of one. I read through the list and the only one that fit my situation was leg pain…no swelling, no redness, not hot to touch.
On Tuesday I mentioned it to my OB and she said that usually blood clots are higher up in the leg, more behind the knee and my pain was in my lower calf so she wasn’t overly concerned. She said the only way to know for sure was an ultrasound and I told her if she wasn’t concerned we would just wait and watch it. I was eager to get back to the hospital and be with Levi and didn’t want to wait around for an ultrasound.
As the week went on the pain lingered. Last night I told myself that if it wasn’t better by morning I would visit the ER just to make sure. So this morning I headed down a few floors from the NICU and checked into the ER. This was such a hard decision for me as I HATED not spending the time with Levi. The triage nurse practitioner said the same thing my OB had said and almost sent me on my way, but I had already waited over an hour and a half to get into the triage room and I figured I would just keep going through the steps. I was taken to a room where the doctor said the SAME EXACT THING. No redness, no swelling, not hot to touch, too low in the leg. She said we could get an ultrasound just in case but it would take several hours since it was a Sunday.
Those words- “Several hours”- just broke my heart into a million pieces as I watched time tick away and I was not sitting with my son. I started bawling my eyes out and once those hormonal floodgates open you can’t dam that flow! I told her that I couldn’t wait several hours and would just have to come back another day. She went and talked to a supervisor who just happened to have experience in ultrasounds and they wheeled in a machine. Within about three seconds the supervisor spotted a clot behind my right knee. I was taken to the vascular lab who confirmed the clot and said it is completely occluded (blocked) and looked to be aged about a week.
There is something called Deep Vein Thrombosis (DVT) that can happen after trauma or surgeries where you have to sit or lay for awhile. A clot forms, commonly in the legs, and if pieces of it break off they travel to your lungs and can cause a Pulmonary Embolism, which can be deadly. They have started me on twice daily blood thinner injections to prevent other clots from forming, which I am now at a higher risk for. These thinners won’t necessarily shrink the existing clot but my body will dissolve it over time (3-6 months). Until that happens we have to watch carefully for the signs of an embolism and head to the hospital ASAP if those signs appear.
When he found the clot those floodgates opened yet again and I cried my eyes out. I am just so tired of being “the percentage”. There is always a small percentage that __________ will happen (insert the worst case scenario), and somehow we hit that mark each time. I am just craving a complications free few months for every member of my family.
I gathered my emotions by the time they discharged me and headed to the Ronald House after my 5 hour ER visit. It was 4:00 in the afternoon and I had not eaten all day or pumped for several hours. But all I wanted was to be with Levi! I scarfed down some peanut butter and crackers while I pumped, and sent Jake and Malachi on their way back to Benton for the night as Malachi has therapies tomorrow.
My night was all planned out…jump in the car and drop off my prescription for blood thinners and head over to spend time with Levi before they closed the NICU at 6:30. I jumped in the car and turned the key only to find the battery was dead. That was the last straw for me and I lost it right there in the parking lot. I couldn’t drop off my prescription which is now a life or death thing, I couldn’t drive over to spend time with my son, and walking seemed like a daunting task with a still fresh incision and a leg cramping with a blood clot in it.
I let myself cry it out for a bit then decided that being with Levi was priority number one at the moment. I took it slow and easy and walked across the street to the hospital. On the way I took breaks and texted some friends who I knew might be at church in the area. One of them was able to pick me up at the hospital at 6:30 and take me to get my prescription filled. Levi and I had a wonderful visit and I got to snuggle him for about an hour.
Unfortunately I don’t think I can make that walk again right now as it is quite a ways to go and exhausted me earlier. I also don’t feel 100% safe here at night. So this will be my first evening without a visit, which is hard for this momma.
Okay so drama over….let me transition into the positive updates.
Levi has been opening his eyes more and more, and they are absolutely breathtakingly beautiful. This photo was taken with my horrible iPhone camera… they are even more sparkly in person!
He has such a sweet temperament most of the time and will just look around and soak up his surroundings. I took this video earlier this week:
Thanksgiving Day the pod was down to just a few babies and I asked if we could bring Malachi and Jake in for a visit. Our babysitter system has been working decently but with it being Thanksgiving Day I knew that we wouldn’t have a sitter. Malachi cherished every second and when we asked him if he wanted to go bye-bye he used his signs to tell us “No” and looked back at baby Levi. We asked him again and again and each time he indicated to us that he didn’t want to leave Levi. It was so sweet to see that intentional communication from him.
Jake and Malachi also visited on Friday as we were able to give Levi his first bath! Now granted, it was a sponge bath but still a big deal. That sweet little boy loved every minute of his pampering and just stayed wide eyed in amazement. So sweet!
Thanksgiving Day was a big day for me as it was the first time I felt confident holding and maneuvering Levi. He is deceptively tiny and the pictures don’t quite convey his accurate size. He dropped down to 4 pounds 3 ounces this week and is a skinny, long baby.
So another week of NICU life down in the books, and not many changes to report. It is still up in the air as to how long we will be here, as we have plenty of steps to complete before that reality happens. I would absolutely love to be home by Christmas, but I don’t know if Levi will go along with that plan!
Levi’s verses this week have varied in content, but here are a few:
Psalm 91:11-12 “For He will give His angels charge concerning you, to guard you in all your ways. They will bear you up in their hands, that you do not strike your foot against a stone.”
Isaiah 40:29&31 “He gives strength to the weary and to him who lacks might He increases power. Yet those who wait for the Lord will gain new strength; they will mount up with wings like eagles, they will run and not get tired, they will walk and not become faint.”
And finally, as I have shared with you before on the blog, one of our prayers for Levi’s life is that God uses him is a special way. I have been fascinated with John the Baptist and how the Bible tells us that he was filled with the Holy Spirit even before he was born. My prayer is that God chooses Levi for an important task on this earth as well. Luke 1:14-15 “He will be a joy and a delight to you, and many will rejoice because of his birth, for he will be great in the sight of the Lord.”
What a powerful testimony!
Please remember us this week in your prayers. I will be meeting with doctors to discuss the clot issue, and we are just desperate for Levi to make some huge steps of progress. Please join us in prayer that his body strengthens and overcomes. Pray against any and all complications regarding our family. And continue to pray for wisdom and guidance as we navigate through the week.