December 27th...the day that started to age me by ten years...
It was a normal day for us and we were just starting to adjust back to life after Christmas. With toys all over the house and breakfast still smashed into the floor I started to get an uneasy feeling about Harper and the little things that kept catching my attention in her personality. From the beginning she has been such a good, easy baby. Adjusting to life at home was a breeze, she was so good at giving me her distinct cries when she was hungry, tired or needed a new diaper; other than that she would just hang out and take in her surroundings, so so sweet. This day though, it was different, something was off and I couldn't put my finger on it. David was off to work and it was just me and the kiddos hanging out at home. Throughout the morning Harper had been a lot more fussy than normal, but I just blamed it on our lack of sleep the past couple days so we kept just going about our day. A little later on into the day I started to get nervous because her cries seemed so different. She was crying as if she was in pain and I could feel it. I kept trying to talk myself out of it, telling myself I was paranoid or as David's dad would call me.."hyper-protective" lol. But 11 o'clock rolled around and I felt so strongly that something was wrong it had even brought me to tears so I called David and on the spot he rescheduled his students at work for the day and came straight home. I got Harper ready to go and once David walked in the door Harper and I loaded up in the car and headed to the hospital. I got to our doctor's office only to find out that my pediatrician was out of town due to the holiday for another week! So I walked down to the instacare which is in the same building and they proceeded to tell me that because of how young she is they would not work on her. By this time I was honestly ready to punch someone in the face. My baby is sick and these people just kept sending me elsewhere, so so annoying. So we got back in the car and I drove her over to the Emergency Room. They took us into a waiting room and took her temperature and vitals before admitting us into a room. Once the nurse read her temp., she immediately called to get us a doctor and said her temperature was at a critical level of 103. Anything beyond 101 is considered in the danger zone for a newborn, so this was a pretty scary thought. She then preceded to tell me about all of the tests they would need to perform due to such a high temp at such a young age. My heart sank.
They finally got us our ER room which is where we would sit for the next 8 hours doing tests for any and everything. The first thing the nurse did when she came in was put an IV in Harper's little arm. She had the hardest time finding a vein and literally poked and prodded every vein entry possible along with calling two other nurses to help, before finally getting one. I hated every second of this..the only thing that gave me a little less anxiety at the time was when the nurse told me she would try everything possible to not have to put the IV in her head, which was a relief to me. Three hours in, the ER doctor finally came in and had a release I needed to sign. This release was me giving my permission for her to perform a spinal tap on my 2 week old baby. Even though I knew it was important for her to get this done, it still felt like it broke my heart into a million pieces. It took me a good five minutes to talk myself into signing the paper, necessary or not, it was so ridiculously hard. Once I gave permission, the Dr. began prepping Harper for this procedure. Watching her pull the needle out and the tube made me cringe--I'm not sure you can ever be physically prepared to watch your baby go through such a painful procedure. The doctor had to roll her into a ball with three nurses holding her in place because it was critical she did not move. As she stuck the needle in Harper became completely quiet as if she were holding her breath waiting for them to finish. Needless to say, I cried more during this than she did! I was relieved when she finished and did not have to do it a second time. She had warned me ahead of time that sometimes that's necessary with babies who are so little because they can't collect enough. I thanked the heavens that that was not the case with her. They sent her fluid in for tests and called the next nurse in. Before starting any other tests they started her on oxygen therapy because her saturation kept dropping to extremely low levels. The nurse that came in next would swab for RSV. They finished that test then sent the X-Ray techs in. They took X-Rays of her chest and urinary tract to look for pneumonia or problems with the urinary tract. Once that was finished, because she hadn't eaten anything all day, they had to insert a catheter to get urine to test for a UTI. After this they had to send a phlebotomist in to collect more blood from her because they didn't get enough the first time to finish her cultures. At this point I was really irritated. She had just gone through all of these tests then had to get poked AGAIN because they didn't make sure to do it right the first time. I felt a little bad after that because I did feel the need to let them know they should've done it right the first time and she had been through enough. Luckily this was the last thing she would have to go through while we were there. It was now a waiting game to get results back from each test to figure out where to go from here.
The first test to come back was the RSV which came back negative. The X-Rays looked as though she was starting to contract pneumonia, but they were not 100% sure. The CSF test was the one I wanted to get back asap because this is the test that would detect if she had contracted Meningitis. Meningitis is one of the most serious infections a newborn can contract and ultimately can result in death if not caught early and treated accordingly. My doctor described it as being scary because even if it is caught and treated the child usually ends up with brain damage or worse as the inflammation is around the spinal cord. I think this is a scary thought for any parent and I just prayed that I had brought her in early enough. The results from the CSF showed that she did not have Meningitis, but that there was inflammation and they needed to figure out why. Her blood cultures eventually came back showing that she did have GBS Sepsis--which stands for Group B streptococcal septicemia--this is a severe bacterial infection that causes a newborn to be critically ill. It is basically the start of Meningitis. My doctor used this description-- The baby contracts GBS which if not caught soon enough leads to Meningitis which ultimately will result in death. I had never heard too much about this before. With Beckahm I did not have the GBS bacteria so this was all new to me. I did have GBS with this pregnancy, but was given two doses of the penicillin while in labor (you only need one to be in the 'clear') is what they said...and Harper was monitored after the delivery and clear of any of the symptoms that would show she had contracted the bacteria. They say that if a baby does contract this within 7 days of delivery it's easy to know that most likely the penicillin did not work during the delivery and that is where it came from. A 'late-onset GBS' is far more difficult to know for sure how the baby contracted it. Which will always leave me wondering exactly how it all happened. But with that being said they called the paramedics in and transported her over into the Peds unit at Dixie Regional. This was the start of our 8 day stay.
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| Our first night in the hospital |
Friday, Dec. 28th--
Two different antibiotics were started and would be administered every six hours to fight this bacteria and kill it completely. Once both the Ampicillin and Cefotaxime were in her system they came in to take another blood culture to test her CRP levels. If the levels came back low this would be a good sign and a possibility that this wasn't an extreme case of GBS because it was caught so early. A 'good' level for a CRP is anything under 1. At this point Harper still was not eating and my milk supply was slowly going away. I knew that Harper would need breast milk now, more than ever so I asked for a pump to try to save the small supply I still had. We spent most of this day cuddling in our hospital bed and praying for good news on her CRP Levels. The Nurse described the level numbers with this--If they come back around 1 or 2 that's a good sign, if they're higher like 13 or 14 that's when we need to start worrying.
Saturday, Dec. 29th--
First thing in the morning the nurse came in to let me know that Harper's CRP levels were at a 2.2.
CRP stands for C-reactive protein, which is a protein found in the blood, the levels of which rise in response to inflammation. This was a relief to me knowing that she was still close to that normal range either meaning this bacteria was going to respond quickly to this antibiotic OR that we just caught it at an early stage. They had to poke her little foot again and would take another blood culture to send to the lab to test these levels again. This is the easiest way to monitor inflammation and the most accurate. This day David packed me a bag and brought it to the hospital as we were thinking Harper and I may just have to spend the night to make sure her levels are in the safe area the next day. We had high hopes and were already missing daddy and brother and just wanted to be back home. That night Harper's hand was really damp and seemed more than just sweaty. I had asked the nurse to check it to make sure her IV wasn't leaking, because if it was that would mean the antibiotics were not getting put into her system. She looked at it and said it was fine and Harper was probably just experiencing a higher body temperature/sweating from everything she was going through.
Sunday, Dec. 30th--
I had a hard time sleeping and woke up extremely early this day. At 4am I called the nurse in to ask about Harper's IV again because her arm was feeling really wet and something seemed so wrong. It was a new nurse (thank goodness). She came in to check and sure enough Harper's IV had burst the night before and all of the antibiotics she should have been receiving had just leaked into her tissues. Another instance where I really wondered how the previous nurse had a job, it was clear that her hand was not just sweaty. So the new nurse took the IV out and proceeded to try to administer a new one. She tried 3 times and burst two veins in the process. She then had to call in another nurse who then, failed 3 times...I was getting extremely frustrated by this point. What had turned out to be the start of a very bad day for my little angel was just the beginning. The doctor came in after the sixth poke and let me know that her CRP results had came back. He asked me if I had a plan for my little boy who was at home because we would be staying and getting admitted into the NICU. I knew the news was far from what we had hoped for. Harper's CRP levels had raised to 15 overnight and were at an extremely dangerous level. Which also meant that her antibiotics not getting into her system could be very detrimental to her. This was definitely not what I was expecting and I just started to stress out about what my new baby was going to have to go through to get through this. At this point I had already been bawling my eyes out because of how hard it was to watch them stick her over and over again, break blood vessel after blood vessel and not be able to do anything to comfort her. At this point I was freaking out because she hadn't had any antibiotics and I knew she needed them. I asked the doctor how we could get something into her system when the IV's were failing and he decided to get two more nurses in to give her 4 sets of shots that held the dose of antibiotics she would need for the time being. The nurses came in and gave her all of these shots in her tiny little legs--this was somewhat relieving to know that she had her antibiotics for the time period and didnt have to suffer through those pokes for now. Next a PICC Line Specialist came in to talk to me about putting a PICC Line in since the IV's were beyond ridiculous and after the CRP news we had just received we would be here for at least another week anyways. PICC Lines are definitely more invasive than an IV, but they only need to be put in one time and can last up to 30 days. The Specialist assured me numerous times that this was the way to go and it would be better for Harper where she was receiving so many antibiotics and IV's (if they don't burst like hers) only last 3-4 days anyways before the site gets irritated. I knew this seemed like our best option and he kept assuring me that he was the best at what he does and that we could be down and back in 30 minutes and she wouldn't have to experience any more needle pain except her foot pokes again so I agreed and we headed down to the NICU.
Just some PICC info...
A PICC line is a peripherally inserted central
catheter. It is a long, slender, small, flexible tube
that is inserted into a peripheral vein, typically in
the upper arm, and advanced until the catheter tip terminates
in a large vein in the chest near the heart to obtain
intravenous access. It is similar to other central lines
as it terminates into a large vessel near the heart.
However, unlike other central lines, its point of entry
is from the periphery of the body the extremities.
And typically the upper arm is the area of choice.
A PICC line provides
the best of both worlds concerning venous access. Similar
to a standard IV, it is inserted in the arm, and usually
in the upper arm under the benefits of ultrasound visualization.
Also, PICCs differ from peripheral IV access but similar
to central lines in that a PICCs termination point is
centrally located in the body allowing for treatment
that could not be obtained from standard periphery IV
access. In addition, PICC insertions remain for a much longer duration than other central
or periphery access devices.
Using ultrasound technology
to visualize a deep, large vessel in the upper arm,
the PICC catheter is inserted by a specially trained
and certified PICC nurse specialist. Post insertion
at the bedside, a chest x-ray is obtained to confirm
ideal placement.
At this point I had called David and told him I really needed him here with me for this procedure because I really felt like I was going to have a nervous breakdown from all of the stress. He was at work and said he would be there as soon as he could, but didn't get off work for another hour. In my head I'm thinking well you'll never make it in time because this procedure is supposed to only take 30 minutes. The nurse asked me if I wanted to sit outside the room or wait upstairs...seriously? You're doing this invasive procedure on my little girl and you really think I'm going to leave her side? Once again...I wanna punch this person in the face moment occurs....I had way too many of those during our hospital experience that's for sure. So they began prepping her arm and because she didn't have an IV at the time they would not be able to give her any pain medication which literally broke my heart into pieces. The specialist kept assuring me that once he got under the skin she would not be able to feel it, but I knew she could--everything in her cries told me how uncomfortable she was and I hated every second of it. The Dr. took a look at her arm(the only arm he could put the PICC in since her other arm had been butchered with IV's already and said he was sure he had found a good vein. For the next two hours..yes 2 HOURS..he attempted to intravenously place this picc line but could not get it to run all the way up. After trying three veins he let me know it was going to be impossible to do it intravenously and that he was going to have to perform a small surgery where he cuts into her arm so he can pull the veins out and wrap it through that way. This was hard to hear and even harder knowing that she, once again, was going to have to feel this pain. She was such a little trooper and endured so much within these 4 hours I was so so proud of her. Finally David arrived as we were getting her ready for the surgery. I was so happy he could be there with me for that. It was one of, if not, the hardest thing I had to watch during our stay. After he made the cut he began digging--literally-through her poor little arm trying to get a vein that would hold up. It was so hard to watch him do this, I could tell he was even getting really frustrated that it wasn't working out as planned. Her veins were just so tiny it was making everything impossible. At this point David said he needed to sit down and when he got to his chair he passed out. Not to say he's a complete light weight ;), it really was that difficult to watch, especially on our new baby. Finally when we started into the fourth hour of trying to place this line he finally got it. He had made the incision small enough that she would only need 1-2 stitches when the time came. I was thankful to say the least
, that this was finally over with! All that was left to do was to make sure the line wasn't too close to her heart and she would be all set. He took some X-Rays and it did end up being too close (imagine that). But it seemed fairly easy to pull the line back a little bit and get it right in place. Once it was, it would not move again and she would be all set to receive her meds through this line. This will definitely go down as one of my toughest experiences as a mother. I don't think I've ever cried so much in such a short time period. It was a painful experience for Harper too, I just know. David and I were standing outside of the room while the X-Rays were being taken and a couple came over to us and gave us a bottle with Christmas treats inside and told us how sorry they were that she had to go through what she was going through. They said they saw us in that room and had flashbacks of when they were in there trying to save their little boys life and they just wanted to do something to make our day a little better. It was the sweetest thing and made me so grateful for such thoughtful people. This is a day that still weighs heavy on my heart and I pray neither of my kids will ever have to go through something like that again. Definitely the day that aged me ten years!
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| Right after getting the picc line put in |
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| Still such a little sweetheart and happy after all the pain she was put through |
Monday, Dec. 31st--
This was our first day in our NICU room. During the rest of our stay I was the one who would check all of Harper's stats, do temperatures, administer her Align (a probiotic needed to try to keep the good bacteria in her system since she had so many antibiotics trying to take the bacteria out), and keep her oxygen saturation at good levels. During this time she was still on the same antibiotics, but they did add the Align as well as a Nystatin to help fight off a yeast infection which is more proned to happen with all of the antibiotic dosage. Her CRP Level results came back once again and they had dropped to a 6! Still really high, but good to see that the antibiotics were back to working and getting her down to a better level. I just wanted her out of double digits and it had happened so it made for a good day! Her blood was taken again and sent off for another CRP test. We ended our night celebrating New Year's Eve with Dad for a few hours. We didn't quite make it to midnight, but it was still a really good night.
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| This was our celebratory picture! |
Tuesday, Jan. 1st--
Happy New Year to us!!! We woke up to AMAZZING CRP results...1.3 Woo hoo! This made our whole day! Not only was this such good news, but we were also told that this would be Harper's last blood draw as long as her results stayed on track and came back lower once again. We crossed all of our fingers and toes and hoped for good news. She was still on all of her antibiotics, but cefotaxime got replaced with a different antibiotic, I can't remember the name, but it was one that needed to be monitored closely because too much of it causes deafness in infants. So our room was full of nurses each hour, but we were completely okay with that! I can't think of a better way to start the New Year than to know my little girl did not need to get poked and prodded anymore and that she was on the downhill of this sickness. Such good news!
Wednesday, Jan 2nd--
I couldn't sleep all night with the thought of us finally being able to take our baby girl home, so I was more than awake waiting for my doctor to come in with good news. He came in with a huge smile on his face and it made me wanna jump for joy. CRP is .8 which means she is in the clear, her body has destroyed the bacteria and she will be able to go home within the next couple of days! Wahoo!!!! We mostly just hung out this day and celebrated...A LOT...that we were going to be able to say goodbye to our hospital beds this week!
Thursday, Jan 3rd--
Today Harper received a hearing test to make sure that the antibiotic had not affected her in any way. She passed with flying colors! No CRP tests to be done, no more shots, just antibiotics :) Today I
packed up all of our stuff and got everything ready to finally leave this place and get back to our normal lives.
Friday, Jan. 4th--
We woke up with smiles on our faces today!!! The PICC Specialist came in and was ready to take Harper's line out. The lab had come in shortly after wanting to draw her blood to use for her two week tests and to our happy surprise the specialist told them they didn't need to because he should be able to get enough blood from her picc line to do the tests. This made my day! So we went down and got her picc line taken out, blood taken from the line to do the tests and stitched up her incision and were able to be discharged by Noon! We were sent home with a weeks worth of antibiotics and align, but other than that she was given a clean bill of health and we were more than ready to get back to our normal lives!
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| One of the pictures David's dad sent me of B while we were away |
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| Getting ready to leave the hospital FINALLY! |
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| First day back home |
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| So great to finally wake up to this face again |
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| After a long exciting day of being back home :) |
Since we've been home and finished the antibiotics Harper has been doing amazing and is right on track with her growth and development. I could not be more thankful for such sweet miracles and blessings that have been with my family during such a trying time. Thank goodness for great family and friends that were able to help us with Beckahm during such a difficult time. I'm grateful for the power of prayer and for the blessings of the priesthood being in our family. I will never forget to count my blessings and thank our heavenly father for my beautiful family and their health and happiness.
