To say that we have been through a whirlwind is an incredible understatement. I will go ahead and give the story from this week and go back and finish last week’s… eventually.
We were seeing great results with both twins and were hopeful that they could be home within the next four days or so. On Friday morning, I slept in a little bit (because I desperately needed it) and Annalisa – my nurse that day – called me over for the 10AM feeding. Graham had been such a sport with nursing, so I took the screaming little guy out of his crib to eat. He was able to latch, but pretty immediately pulled off, got this deep furrowed brow, and let out a scream. I tried a few more times, but pretty soon, it became apparent that we couldn’t keep going. Instead, I tried to just snuggle with him and we were intending to just gavage (feed through a tube) for that feeding. It became obvious very quickly that something was off with Graham. He would not take the binky, he couldn’t calm down, and snuggling was not working. This behavior was really strange for Graham, so after about 45 minutes of constant inconsolable crying, Annalisa and I put our heads together to start thinking of solutions. We checked out his entire body to see if something was making him uncomfortable. I started talking about allergies that we’ve had to deal with in our other children. We checked the fortifier that they had put in my breast milk (adds two calories per ounce; I just wanted them to be able to gain weight so we could go home.) It had both corn syrup solids (Link allergy) and whey protein (Anjali allergy) in it, so I begged them to take both boys off of it. Calvin slept through all of this like the little peaceful angel that he is.
After about an hour and a half of insatiable crying from Graham, Annalisa got the ball rolling, called the pediatrician, and had x-rays ordered. We thought maybe he had something stuck in his gut. All the while, Dovy was trying to get a hold of me about insurance. It was a crazy, stressful, sticky situation. (Get the twins on insurance so we can pay for all this stuff, etc; take care of Graham before he self-destructs.) The reception in the NICU is horrendous (some of you may have noticed) so it was really hard for him to get a hold of me. Finally, after trying for a really long time, Annalisa gave a crying me a big hug, told me she would take care of Graham, and told me to take a few minutes. I was overwrought and exhausted. I came to my room and pumped and called Dovy. We both felt that something was really wrong, so despite the fact that he was trying to stave off the stomach flu at home (Link had thrown up the morning before) he found a willing sitter and quickly came to the hospital.
SIDE STORY: On Monday, I had started feeling an overall state of un-wellness. I had a very low-grade fever and some chills. I had a blessing that night telling me that whatever was ailing my body would pass from me, that I would be able to take care of my babies, and that one day they would both tower over me and love me. On Tuesday, I still felt yucky but tried my best to push through everything. On Wednesday, I started getting really worried. I had the chills so badly that I could only lay in my room, huddled under the blankets while in my fleece robe, and shiver without experiencing any sleep. I dragged myself over to the NICU for feedings. I called my doc who prescribed some antibiotics, had lactation come look at me to make sure I wasn’t getting mastitis, and drank a ton of cranberry juice to try to stave off any other infections. That afternoon, Dovy came and got me for some much-needed rest at home. I took an incredible shower, ate a little (I had NO appetite) and took a good nap in my bed. During that time, during one of my restroom trips, I discovered that I had passed a small egg-sized piece of placenta (it had veins and everything – ew.) I had Dovy take a look at it because I was so freaked out by it. Within an hour or two, all of my symptoms had disappeared. When Dovy and I came back to the NICU to do feedings late that night, the nurses said I dodged a major bullet. That could have been quite serious. One nurse said I was really lucky not to end up in the ER getting blood transfusions. Dovy then took me home to stay the night just so I could rest up a little. When I woke up for the 5AM feeding, I heard Link screaming uncontrollably upstairs. Dovy ran up and found he had barfed in bed. He yelled down to me to leave the home immediately so that I wouldn’t contract anything. I had to leave without even hugging Dovy goodbye, much less getting the chance to spend any time with the kids. I felt like my lifeline had been ripped from me. Thursday was really rough emotionally because of that. I missed my family and I just wanted to be together. :(
Fast forward to when Dovy arrived at the NICU to help console Graham. At first, the x-rays came back and we were told that Graham might have a broken rib. They wanted another x-ray to make sure. We tried a couple more times and then they decided that he most likely did not have a broken rib but that they thought something was there, but probably not a break. Dovy finally got Graham to peter out and fall asleep. It was about 4:30PM at this point. Dovy prodded me out of the hospital to get a bite to eat as I was so incredibly tired from the day’s events.
When we came back, we had no idea the hoopla that would greet us. The NICU was in a frenzy. Several nurses were hovering around Graham. Annalisa was supposed to have left for her shift, but she was over him, trying to work to help him. He had spiked a fever of 101.5 and was inconsolable again. They said that they were going to put in an IV and they needed a blood panel immediately. The pediatrician on call had run over, as well. They had to turn the lights way down so that they could use a special LED to find a vein just under Graham’s skin to do the IV. Annalisa found the vein, started the IV, and then had to prick him a few more times to try and get enough blood for the panel. (He has been notorious during this stay for his roll-y veins and blown IV’s.) They had to put Graham on another bed, Dovy and I on either side, holding his hands down and trying to calm him, another nurse assisting and holding him down. The whole time, he looked at me with worried eyes and a furrowed brow, and let out little cries every few moments. You could tell that he was incredibly tired and overwhelmed. My heart absolutely broke and I cried the entire half hour that they worked on him.
The first few panels came back within the hour. (STAT, they said.) Those first panels showed that Graham was definitely fighting off an infection. They immediately put him on three heavy types of antibiotics to ward off anything that could be attacking his body. We were also unfortunately told that the floor had filled up so much that they had to move us to the pediatric ward again. It was an awful night. Friends from our ward came and helped give Graham a blessing. He was promised that he wouldn’t have any lasting effects from this condition and that he would be protected and administered to. I was given a blessing, as well, that told me that angels were ministering to us, those of our ancestors, and others who would be a part of our family one day. It was a really special evening despite how difficult it was. The only way I got him to settle down that night was a deep massage on his back and legs. I figured that if I had felt even a fraction of what he was feeling at that moment earlier in the week when I passed the placenta piece, then Graham surely felt horrible.
We checked on Graham a few more times throughout the night. I ended up sleeping through the morning feeding because we were both so tired. I called in to the NICU and the nurse said the pediatrician was on his way. Dr. McArthur came and talked to us. Graham’s results had come back positive for Group B Strep (possibly fatal to infants) and indicated that he had sepsis. (A friend of mine who had had sepsis once told me that it hurts very badly and every muscle and joint in your body hurts excruciatingly, which is why Graham was probably in so much pain.) This was the first pregnancy that I’ve ever been Group B Strep positive and I couldn’t believe that among all of the people in the world, we were all of the sudden dealing with this condition. The doctor said that he would need to do a spinal tap to check for meningitis but that we probably didn’t want to be around to see it. We asked if we could come see Graham before he did that so he led us back to the NICU.
They had separated the boys again in beds across the room from each other. Graham was whimpering in another nurse’s arms. As soon as they gave him to me, he nestled in, calmed down, and stopped crying. I could literally feel him wanting to be with me. I wanted to be with him. Dovy sat next to me. The tears rolled down both of our faces. The nurses brought tissues, closed the curtain, and let us be together to cry. We talked about Graham’s blessing and recounted what he had been promised. We tried to have faith in that moment. It was a quiet, grim moment, but underneath it all, we found an underlying current of peace that carried us through it. We checked on Calvin one more time, kissed our little Graham, and left our little boys behind so Graham could get the spinal tap and we could head back to the pediatric ward.
We ate, showered, changed, and packed up the day’s belongings. We came back to the parent’s lounge and made our way back to the NICU to see how everything had gone. The tap was a success and all we had to do was wait. We camped out in the NICU all day long, holding the boys when we could, talking with the nurses, feeding, resting, and waiting.
Finally, we received word that the culture for meningitis was a preliminary negative. We were so relieved. We were told that they would keep him on antibiotics until we got all of the results back in. Those came in today and Graham definitely does not have meningitis. They took him off the two major antibiotics that would have helped with that. They are more abrasive and can have lasting damaging effects, so I’m really glad that he is finally off of those.
Today has been a much better day with Graham. You can tell that he feels much better. He rested peacefully in my arms for a while this morning without looking like he was in pain. It was as if somebody had taken my Graham away the last two days. He is back to himself now. They attempted to put a PICC line (a more permanent IV that uses a catheter and starts in the arm and goes up to the shoulder and chest, resting right above the heart) in Graham. It was unsuccessful because they believe his veins are so tired and worn out from all of the antibiotics he has already had. They will try again tomorrow.
There are so many blessings that we have realized these last few days. We were so disgruntled about being stuck in the NICU. However, if we had not had this extended stay, Graham may not be with us now. The nurse that I had is probably the most keen one that we have had since we got here. I have never seen anyone go to such great lengths to accomplish a job. She is incredibly thorough and writes extensive detailed notes about everything. We were impressed that she had the foresight to call the pediatrician and get the ball rolling on Graham’s care. It seemed like Heavenly Father placed certain people and circumstances in our lives so that Graham’s life could be saved. Even my experience with passing that piece of placenta this week helped me understand a little bit of my son’s pain so that I could empathize and find a way to relieve him in his hour of need.
All of the nurses here have been incredible. Each has empathized with us. One that I have become close to came and sat and cried with me when she came in for her shift and saw the incredible changes that had been wrought on Graham. One nurse made a blanket for me. She said it was my own personal hug, there for me through all the things I was going through. (Her name is Carolyn, and she also happened to be my very favorite nurse back when I delivered Lincoln.) It has been special being here and seeing and feeling the physical and spiritual angels that have administered to us.
Thank you to each of you for your prayers and support. Throughout this pregnancy, we have faced many challenges and difficulties. We almost lost Calvin when I tore his placenta back in the first trimester. Your faith and prayers helped saved him then and your faith and prayers have helped saved Graham now. We have felt an other-worldly humility and gratitude throughout all of these experiences. I have often wondered how those around me have gone through really difficult trials – trials that seemed capable of absolutely burying those that they encompassed. I now have an inkling of how they have survived through these trials. It is not because of any particular strength of their own, but by the strength of the Lord that has buoyed them up. I have literally felt carried through this last week and a half, but especially in the last two days.
Graham’s prognosis is good. They expect a full recovery as long as the medication keeps working. They will continue to draw blood daily and check his cultures as the antibiotics take effect. Calvin, on the other hand, is doing swimmingly. He is on request feeds at this time, which means that he can demand food whenever he wants, isn’t required to eat a certain amount, and can go home as long as he gains weight. So, we’re plugging him full of my breast milk and hoping for the best. (I’m kind of famous around here for how much milk I can make. Thank you, Fenugreek! I’ve never made so much milk – times about eight. The freezer in the back has an entire shelf devoted to my milk. It’s pretty impressive. Go, Super Boobs!) Cal is, right at this moment, working on passing his car seat check. (Sits in car seat for 1.5 hours, while having his vitals checked every 15 minutes.) He will probably go home soon. We will most likely go home with him and I will come back and check on Graham every day. It will be hard, but we know that Graham needs to have his care here at the hospital. He will need to be on antibiotics for 9 more days here at the hospital. Both boys are off of oxygen and their feeding tubes (as they are fine with Graham also taking request feedings). It is our hope that Graham will be completely ready to come home as soon as he finishes his meds. We will continue to work on feedings and he will probably be completely ready soon.
Now that we’ve been here long enough to get to know so many nurses, we’re grateful we know whose hands will be taking care of him. We will miss him dearly while we’re apart, but we’re comforted in knowing and seeing how well these women have taken care of our little angel babies. Thank you, AF Staff! We love you so much!
So, on Monday morning, our nurse, Julie, came in and said, “Well, you’re getting your wish. [Being able to take the babies home together.] But probably not in the way that you wanted. He’s acting just like Graham did this weekend and I’ve already ordered x-rays and blood panels.” We went in to hug and hold Calvin and could clearly see that he was not doing well. The pediatrician said he needed to do a spinal tap on him, too. Dovy gave Calvin a quick blessing and then we said goodbye to both boys and came back to our room to contemplate, discuss, and commiserate.
Long story short, Cal’s results have come back the same as Graham’s, only his levels weren’t quite so high because we caught his illness earlier than his brother’s. Lightning really did strike twice and here we are with two little babies with late-onset Group B Strep (GBS). Dovy contacted a doctor in Texas who has been researching everything on this condition for the last 40 years. Of the 11 sets of twins that she found with late-onset GBS, only 3 had cases where both twins contracted the condition. She was very reassuring in telling us that our pediatricians had taken the proper courses in treatment, and even though we were worried about infecting the boys through breast milk and nursing, assured us that it was the best thing for them and to continue to do so. Our pediatricians may be submitting their findings to her so they can further their research and one day find a vaccination for this type of illness.
It’s been really strange to be a statistic – and a very rare one at that. When I was threatening to go into labor, my OB said that we should run the GBS test (as it is standard for all pregnant women) just to get it out of the way. When I came in for my next appointment, he told me I was positive. I literally thought he was joking as I’d never been positive before with my other pregnancies. “No, really, you do,” he had said. We talked about what that entailed, about the antibiotics I would need and that they may or may not be putting the boys on antibiotics, as well. I talked to friends about the condition. So many people have this particular bacteria in their bodies (almost half of women at any given point) that it is hardly thought of as a problem. Many of my friends said that they had had it and it was no big deal. Both boys were treated with antibiotics after birth and their cultures had come back negative last week when they were born. We really thought we were in the clear.
We were wrong.
That’s why this entire story has been so baffling to everyone around us. Late-onset Group B Strep simply just doesn’t happen very much. Of all the nurses and pediatricians I’ve worked with (and many have been doing this for decades) only ONE has said that she has seen the late-onset version of this infection. It was on a pair of twins last year, but only one twin contracted it. To have both of our twins have this infection is so incredibly ultra-super rare (in the words of our physicians) that it is really puzzling. Mind-blowing, even. I feel like we’re in a sci-fi movie.
Above all, we’re grateful that we were here to get the help we needed. Calvin’s car seat is sitting in my hospital room, empty and unused. I’m grateful that he didn’t use it and that he didn’t come home. The pediatrician told me we were very fortunate to be here and catch these problems early. Graham is on Day 4 of treatment. Calvin, as long as his cultures come back negative today, is on Day 1. Both boys need 10 days of the antibiotics. Graham will more than likely come home a few days before Calvin. Cal, in fact, will probably not even be home by his due date. We never anticipated any of this, nor can we quite believe it, but we are still ever so thankful that Heavenly Father’s hand has been here the entire time, taking care of our boys.
Weeks ago, when my pre-term labor was starting, I was given a blessing promising me that if the twins came early that I should not worry because Heavenly Father loves these little boys and he has a plan for them and he would save them. I didn’t realize how incredibly true this would be. Another blessing I received this last weekend told me that Heavenly Father was pleased with the incredible love that I have for these little boys, but to remember that he loves them even more. He is watching over them and he will take care of them.
I know it.