Landon is ten months & five days old. To be honest, it isn’t very easy for m to look back on his first few weeks of life – I talk about my emotions with certain family members (the hubby is an obvious one), but I try my best to keep it to myself – why? Because I guess I don’t want people thinking I’m living in the past – I’m not. Those first few weeks – seeing *MY* precious miracle baby go through so much… even if they did happen 10 months ago, they’re STILL my present, the days are burned into the back of my brain. I can pull out one of Landon’s onesies that no longer fit him and I can name a day he wore it while inside the hospital. I guess you can say, I have a mild form of PTSD – or at least, I have several symptoms of it. There are nights where I can’t sleep because my mind keeps going back to the days at the hospital – or, the nights I actually DO sleep… my dreams are full of nothing BUT the hospital.. One reason I started this place is to clear my head & to get things off my chest. I guess… you won’t really understand me unless you read what happened with Landon. Yes, this post is taken from Landon’s Legacy, but all the same…
We brought Landon home, and everything went smoothly – surprisingly. I was breastfeeding and supplementing with formula (as my milk supply had not fully come in at this point). The day after we came home, Landon had his first doctor’s appointment. That was when we learned our baby had jaundice – I remember looking at our pediatrician as if he was crazy – he said Landon’s skin had an orange tint to it, and at the time.. I could not see it. Looking back at the pictures taken during that time period, I can see the orange “glow”. We went to the pediatrician’s office every day that first week – finally a bilibed was prescribed for Landon to be in.. our entire family nicknamed it as his “Tanning Bed”
On May 24, after we left the pediatrician’s office, we received a call from a nurse in the practice. She said that Landon’s first newborn screening test had come back, for us not to worry until the second test was done but that Landon had tested positive for galactosemia. She informed me to continue with our routine and that the positives they received were due to human error. We went again on the 25th and repeated the bilirubin levels and the newborn screening. Two days passed, and May 27th came.. He was exactly a week old. We went to the pediatrician [yet again] for another bilirubin check, and it had increased dramatically since the last visit. Not to mention, Landon had gone from 6lbs 14 ounces to 5 lbs 12 ounces. He was hospitalized for “failure to thrive” as well has high jaundice levels. Our pediatrician stopped me from breast feeding and put Landon on soy formula stating it was a precaution for the Galactosemia – this was one of the hardest things to watch at the time. Landon was not keeping any of the soy formula down – he couldn’t tolerate it. The next day, after the night nurses confirmed that Landon was not keeping any of the soy down, the doctor put him on Nutramigen – thankfully, time it was given to him… Landon started eating for the first time in that 24 hour period. Two days later – Landon’s bilirubin levels had come down and his weight had increased.. the Pediatrician, however, kept him in the hospital for another 24 hours just as a precautionary because Landon had ran a slight fever that morning. I was beyond frustrated – I was a new mom who was away from her husband due to being stuck in the hospital. In my mind, it wasn’t fair to Landon because HE deserved to be home with BOTH of his parents. I felt like Jerry was missing out on a critical stage of our child’s life. However, I could not argue with him. I was exhausted – since the day we had been admitted I got little to no sleep because I was VERY worried about Landon. I watched his every breath, every move, and I watched him every second. That same afternoon, it was confirmed that Landon did indeed have Galactosemia – and my heart fell when I heard those words. In my mind, I had been slowly poisoning my son with my breast milk.. I felt angry – and instantly began reaching out to the Galactosemic community. That night passed by quickly, and by 2pm on May 31.. Landon and I were happily leaving the hospital and going home with Jerry.
Jerry knew what my sleep habits had been like while at the hospital (due to 3,4,5,6,and 7am text messages) so the instant we came home, he told me to go get some rest and he’d take care of Landon. I, feeling at ease for the first time since that Monday, willingly agreed. I kissed him and Landon both and went to sleep. I slept until around 7pm that night.. and I remember waking up because I had the feeling as if something was not right. I checked on Landon – he was fussy. I called Landon’s God Father and asked if he could possibly pick up Gas Relief medicine (thinking that was the issue). Landon seemed to quite down afterwards. I felt him, and he felt a little warm to me. It was hot – as it was Summer time in South Carolina, so I suspected it to be from the heat. Never the less, I called the pediatrician on call – he instructed me to take of Landon’s onesie and give him a bath and if the fever persisted, for me to call back. After I removed his onesie and gave him a bath, he was fine. Jerry could tell I was still exhausted and told me to go back to sleep – he promised me he would check Landon’s temperature at every feeding and told me not to worry. I remember waking up at 10am that morning, frantically searching for Landon – he was not in his bassinet. I walked out to the living room and found him in the arms of my Grandmother. Panic gone, instantly. I asked her if she minded watching Landon for a little bit so I would be able to clean the house up some, and she agreed. Taking Landon to her house (which was not that far from ours) I started to clean. Less than an hour later…my cell phone rang and my Grandmother asked me a question that started the whole hospital struggle – “Can you bring his thermometer up here, he feels warm.”
I panicked, and ran to her house immediately with the thermometer. I checked his temperature – it was 101.2 Very high. I removed his onesie, as I had been instructed to do the night before and immediately got on the phone with the answering service for the pediatricians. While waiting for the pediatrician on call to call me back (which was ours, this time) I re-checked his temp – it had gone back down to 98. I remember thinking “This is not right.. something is wrong…” I just didn’t know HOW wrong it was. I took Landon back to our house, and waited a little longer. When the pediatrician called, I explained to him “I’m not sure if the thermometer is broken or not, but his fever was 101.2 and then it was 98 something a few minutes later..” He asked how I had taken it and I explained, rectally, and he told me to give it 20 minutes and to check it again and call him back with the reading. 15 minutes passed – just as I was about to re-check the fever… he called. He said he had talked to the doctor who had been on call the night before and since Landon had ran a slight fever then, it would be best for me to bring him back to the children’s hospital to be checked out.
That was one of the longest drives. Upon arriving, they weighed Landon, I signed paperwork, they took blood and then they did a spinal tap. My grandmother was with me in the hospital room waiting for Landon and the pediatrician to return. Upon arriving after the spinal tap, the doctor said “Landon has meningitis – and I have to send the cultures of the spinal fluid and blood to the lab to be checked..” My heart fell. He then told me I needed to get the father up here because we would not know if Landon was going to live or die – we wouldn’t know anything for 48 hours. My heart sunk even more, if that was even possible. I remember my grandmother crying, instantly.. and me trying my best to keep it together…. I walked my grandmother out to the parking lot (my father drove us) and I was carrying Landon’s carseat since he would not need it in the hospital… I got half way into the parking lot before I started breaking down. I had to explain to my father just WHY I was crying and WHY I was carrying Landon’s car seat.. and instantly got on the phone with Jerry. Jerry drives a wrecker for a living – and that particular weekend, he was on call.. I was very worried that if I told him everything over the phone he would drive like a maniac to get to the hospital.. or worse, he would wreck on the way.
Instantly, phone calls from relatives began coming. One of my cousins called me and told me “Shelby, everyone is on their way to you. The whole family is coming – and I know this is hard to hear, but Shelby you need to get one of the chaplains in that room and pray over Landon..” That was one of the kickers.. The thought – the IDEA of possibly losing MY son.. the one I had prayed so hard over before, during and after pregnancy.. who was not even two weeks old yet… it killed me. Next thing I knew, the hospital room was filled with my family.. and the chaplain..
48 hours passed, Landon was still alive. It was decided that he would have a broviach placed in his chest due to the amount of medicine he would receive and the length of time he would receive it. After antibiotics were started, his fever didn’t go away so the pediatrician ordered two ultrasounds of his brain – neither one of them showed anything. Since he was scared we were missing something, he ordered a MRI – which showed there was fluid on his brain. That day, we met with the Neurosurgeon and Infectious Disease Specialist. The ID doctor recommended stronger antibiotics, and the Neurosurgeon informed us another MRI would be repeated a week later and what would happen if the fluid was worse. Surgery. The next day, Landon had his first surgery – the placement of the broviach port inside his chest.
That weekend went by great – for the most part. It was mine & Jerry’s first wedding Anniversary [June 9] and it was spent inside the hospital – other than me having to leave the hospital Sunday night to come home due to a medical issue of mine. Thankfully, my sweet and VERY Helpful Grandmother stayed with Landon that night – she has been SUCH a big help since his birth.. I can’t put it into words. The next day, I returned. Landon had not ran a fever in 24 hours.. The next night, which was Tuesday night, the doctor was VERY happy with the no fever – and decided to do the second MRI two days early. We were very hopeful that the MRI would not show anything on his brain.. and at 7am on Wednesday June 12, I took Landon down to radiology. The tech’s informed me that Landon would be in there for an hour, and so I went to the cafeteria (after making sure they had my cell number) to get something to eat. I returned at about the time they told me he should be coming out of the MRI… and yet no one had heard anything yet. Next thing I knew, 9:45 came.. Landon had been gone for almost 3 hours.. I was on the edge. I was in the hospital room and our pediatrician called the room number. His exact words were “I didn’t want you to be a sitting duck – but I’m letting you know now the MRI did NOT go as expected – Landon HAS to have brain surgery TODAY. I’ve already contacted the neurosurgeon and they should begin around 11.”
Landon was three weeks old. THREE WEEKS OLD. And he was having brain surgery. I was beside myself – crying, thinking the worst, snapping at everyone I spoke with on the phone, and asking GOD “Why?!” Landon’s father rushed to the hospital immediately, followed by my Aunt. Jerry and I took Landon down to radiology – yet again – for another extensive MRI so the neurosurgeon knew exactly where to go in at. We met with the Neurosurgeon who explained things to us – said that Landon would come out of surgery on a ventilator and he would most likely be in the ICU ward for a week or more, and that it depended on him. We waited.. Surgery began.. they called with updates at first, and then it stopped. Landon lost a lot of blood during the surgery, so they had to give him a transfusion. Next thing I knew, it was around 5:45.. I finally got the call that they were out. I walked into the room in recovery – and I freaked out. There was no ventilator – and instead of me being happy.. I thought he was dead. The nurse had to explain to me three times that Landon was breathing on his own and did not need it. After I calmed down, we took him to ICU. We heard from the Neurosurgeon and Pediatrician – and the pediatrician told me I needed to go home that night and get some rest since Landon would be well watched in the ICU. After my husband stepped in and told me the same thing, I left. I called the ICU nurse 13 times that night before I finally went to sleep. The next day, Landon was taken out of ICU and put back into his regular room on the infant & toddler floor. He had done so well. He was in ICU for a maximum of 18 hours.
The rest of June was downhill from there – our precious miracle had pulled through the surgery with flying colors. He began to improve immensely. I watched as he transformed to a VERY weak baby into a very STRONG and STUBBORN and VERY healthy baby. Soon, we were able to go home. He was hospitalized two more times after we left the hospital – each for a GI issue, only for two-three days max. I’m so thankful there have not been any more hospitalizations since. He truly is our miracle baby – and GOD has definitely watched out for him.