Part 6...The End

I know that there are those parents of babies who have had major health issues and have had extended stays in the hospital who are probably annoyed that I had such a hard time with a 10-14 day NICU stay, but I'll admit, it was really tough for me. I had not expected this at all and to have her with me one minute and then back in the hospital the next was such a shock to me. I've never been good with change and this was not how I had planned it!

For the next week or so the doctors went back and forth on whether she would have to stay for the 10 day round of antibiotics or the 14 day round. We went back and forth to the hospital trying to balance time with Em as well as the other two at home. For my birthday on July 8th we went to dinner before the hospital and the whole time we were eating I just wanted to go hold my baby. That day they also told us that it was looking like 14 days would be what she stayed for...Happy Birthday to me. The EEG had come back normal and the cultures had not grown out at all but the 3 other spinal taps that had been done (under sedation thank goodness) showed steady improvement in the quality of her spinal fluid. Still, it was frustrating to think that maybe it was not Meningitis after all and that her fluid had just been colored from the brain bleed, which had not caused any problems and would heal itself without intervention. At one point we had talked to our Pediatrician, whom we love so much and consider a good friend, and she also told us that if it was her child she would have done the same thing. Why couldn't we just get a straight answer from the NICU docs as to how they were so confident that it had really been Meningitis?!

Every time I kissed Em, put her back in that little hospital crib and walked away I cried. I knew she was in good hands and I knew that compared to the other babies in her NICU room she was the healthiest and I was so thankful for that. But it had taken me so long to actually decide to have another baby and I had been so excited for so long to meet her and the kids were so  in love with her that to have her gone after being home for such a short time was really hard on our family. When I was home it felt like she didn't really exist and when I was with her I didn't want to let her go. There were moments when I was completely consumed with the need to hold her and she wasn't there. When I was with her I would rock her and look at her IV's and monitors and get frustrated that I couldn't just hold her or change her diaper without having to untangle her before and after. I would watch her sats religiously while I held her, tracking her heart beat and oxygen and learned which alarms were ok and which ones weren't. It seemed like I would always arrive just after they had bathed her and that would make me sad. Feeding her while I was there was always so exciting because it made me feel like I could finally do something for her. I would hold her and cry because I was so afraid that she wouldn't feel loved or bond with me like she needed too. Even then I knew logically that those were irrational fears but they were fears all the same.

The kids came up to visit her once during her stay and loved the Kids' Room where there were crafts and video games to entertain them while they took turns going to the NICU with Matt or I. They learned how to "scrub in" and how to be careful of tubes and wires while holding her. They loved the nurses and Madison even got to pick out clean bedding and make and decorate a name card for Em's bed. They thought it was exciting to eat in the cafeteria and took full advantage of being able to choose interesting combinations of food for dinner.

We had to learn infant CPR and the Heimlich Maneuver on a fake baby before they would let us take home the real thing. When Matt joked that he figured it would be more efficient to use his foot to pump the babies chest while doing CPR the nurse was not amused and I figured they may keep her for a while after that just to teach us a lesson!  She also had to pass a carseat test that proved she would not quit breathing on the way home.

In the end she stayed for 10 days, not 14. I about threw a party when they called and said to bring the carseat when we came because she would be going home the next day instead of 4 days after that! Taking off the monitors and putting her in her little pink jammies with guitars and music notes on that Madison had picked out while I was pregnant was so fun. Saying goodbye and walking out of those NICU doors with my baby was like a dream. They told us to keep her away from too many public places and too many people for the next few months and then we were free! The last doctor that we talked to, the one who discharged her, really sat down with us and let us ask question after question without being condescending or rushed. She was wonderful. She was the one that finally told us that Em's chart had showed that her protein and sugar levels in her spinal fluid along with the color and white blood cells are what made a strong case that Meningitis was present. Nobody else had told us that....for 10 days!

I remember thinking to myself, while Em was in the hospital and I ached to hold her, that I would not take her for granted when she came home. I promised myself that I would enjoy every minute with her. I think I made pretty good on that promise, well until she turned two I guess! It's hard to remember on the hard days how much I just wanted her here whether she was difficult or not! But bad days or no I am so very thankful that she is here, that we didn't wake up to find that she had passed away without any warning. My heart hurts just thinking of that possibility! We will never really know if she had Meningitis since the bacteria never grew. She still twitched occasionally after we brought her home and even Matt finally got to see it one day and admitted that it was a bit worrisome. Thankfully she has no side effects from her ordeal. Blindness, deafness and mental retardation can all be caused by meningitis. She was a bit behind with her motor skills and had some sensory issues when she was about a year old (which are also frequently found in kids who have had Meningitis at some point in their early lives)  but with therapy those things resolved and she is now actually ahead of the curve for her age.  She knows her shapes, can count to 20, recognizes numbers 1-9 and is learning her colors. Of course, I'm pretty sure that she has learned all of these skills from Dora, Elmo and my Iphone apps but hey, I'll take it!

I'll confess, I still wonder sometimes if it was all for nothing. It was really tough to feel so alone with such a wedge between Matt and I, it was horrible to watch her suffer and well, we'll be paying the medical bills from those 10 days until she is in Kindergarten! But when I think of what life might have been like without her here it makes every penny we will shell out worth it.



P.S. Thanks for coming along for the ride...




 

Part 5...10-14 Days

*I'm sure by now you are all wondering when/if this story will ever end. I'm sorry if my blog has become a bit boring as I reminisce and I promise that I will finish up soon. If you are not really interested in the rest of the story I won't mind if you dump me until next week when my regular blogging will resume. Thank you for your patience...*

The next morning I was woken up by Em's NICU nurse shortly before my phone alarm was set to go off. She had an update for me. I could feel how swollen my eyes were from crying and lack of sleep and hoped that I didn't look as bad as I thought I might. The nurse explained that Em was doing well and that they had started her on the IV antibiotics she would need for the meningitis. She told me that she no longer had a fever and was in fact having a hard time keeping her own body temperature up so they were going to keep her under a warmer until she overcame that obstacle. They had also put her on just a little oxygen as her sats kept going down. They were going to be doing an EEG later in the day to look for signs of seizure activity and the Neurologist was going to be coming by that morning to evaluate her. She mentioned that one of the other nurses had mentioned around 7:00 that morning that they were surprised that I hadn't come to check on my baby yet and she had informed them that I had not gotten to bed until 5:30am and needed some sleep. Man I was grateful!

After she left I went into the bathroom to inspect my appearance and oh boy...scary! My eyes were so swollen and my skin was blotchy. My hair was a mess and if I am really honest, I really needed a shower! I went out to the room's fridge and pulled out a couple of cold juice cans and laid down with them on my eyes. I sat there for a while and then called Matt to let him know that we were in the NICU and that I needed some toiletries brought up before I could, in good conscience, face the outside world.

When Matt arrived I gave myself a sponge-bath of sorts in the bathroom, requested a couple of rubber bands from the receptionist which enabled me to make pigtails out of my disheveled hair (luckily I had also worn a hat the night before so that went back on too) and I brushed my teeth. It's amazing how just doing a few simple things makes a person feel a little more centered in a stressful situation.

When we were ready to go see Em we were instructed as to how to properly "scrub in" for the NICU and then we were taken back to her little heated crib still in the quarantine area. She was about the same as she had been when I had kissed her goodnight in the early morning hours and it was wonderful just to touch her little toes again. Shortly after we made it to her bedside the neurologist came in along with a social worker. The social worker sat down by me and informed me that she was there in case I needed to talk about the situation with her. She told me that she had been informed that I was having a really rough time with all that had happened and wanted to know why I felt I was having such a hard time with it. I told her that I was ok, just worried about my baby, and of course....I started to cry. What I really wanted to tell her was that of course I was having a "rough time"! I was worried about Em, I felt terrible about all she had been through and  I felt completely alone in the situation and to top it all off I was post-prego hormonal!

Anyhoo, the Neuro came in and examined Em and a very strange thing happened. Every time she would stroke the right side of Em's head her whole body would twitch. The Dr. said it wasn't normal but that she couldn't explain it. She said to go ahead with the EEG and that this new twitching could be from the meningitis as well because the infection could be irritating her nervous system making her extremely sensitive to touch. She told us that Em would be in the NICU for the next 10-14 days on antibiotics. What?! We thought they would give her a prescription and send us home later in the day. Matt questioned the Dr. again as to why she even needed to be there if her cultures had not grown out at all. The Neuro was rather condescending to Matt and essentially gave him an "I'm the doctor so don't question me..."  kind of answer which didn't make matters any better for Matt. The nurses all assured us that she wouldn't be going anywhere for a while and that I should go home and get some sleep. We left the hospital with Matt more frustrated than the night before and me walking away from my baby with more tears running down my cheeks.

Driving home was one of those experiences where you try your hardest to stay awake and wonder how you got there when you pull into the garage. When I got home I took a much needed shower and fell into a much needed sleep. When I woke up a few hours later it occurred to me that it was July 4th. The other two kids had been at my SIL's house (bless her!!!) since that morning and I knew that they would come home excited for fireworks. I knew that we would have our annual cul-de-sac 4th of July party and everyone would be eager to see the baby...who wouldn't be there. There would be questions and I would have to answer them, hopefully without crying, while all I wanted to do was show off my beautiful new baby. The night was better than I thought it would be and we actually didn't end up going back up to the hospital that day and just enjoyed the holiday festivities with the older two while knowing that our baby was in good hands. It was hard on Madison not having Em around since she was already completely in love with her and had waited so eagerly for her arrival. Obviously nothing had gone quite the way she had imagined it would since the minute her new sister had been born!

Oh and P.S. - How cute is my sweet daughter for highjacking my blog to tell me that she loves me?! I love you too sweetie!

Part 4...The NICU

After Matt left I sat for quite a while wondering if Em and I had been forgotten about. A nurse came in to take Em's temperature and found that she had developed a slight fever. She left and we waited some more, me trying not to fall asleep on the chair and Em sleeping in her car seat hooked to her stroller with an oxygen mask lying on her chest to give her just a bit of extra help and an IV pole off to her side. After a while another doctor came in to make sure that I had received Em's test results and see if I had any questions. We talked for a minute and I started crying and she asked me if I was ok. I told her that I was just still unsure as to whether I had done the right thing bringing Em in and making her go through all of this. I explained that Matt was NOT happy with the situation and didn't think that she needed to be there and I just felt like I had let my baby and my husband down. She was so sweet. She sat down next to me and put her arm around me and told me that I had done the right thing. She told me that in newborns this young that sometimes the first indication that anything was wrong was finding them dead in their crib. I wish it had put my worries that I had brought her there for nothing to rest but it didn't. It was nice to hear her say that I had done the right thing though.

Finally, around 4:00am a nurse came in and told me that they were sorry that I had had to wait so long, that there had been a few traumas in a row that had come in but now that things had died down they were ready to admit Em to the NICU. I hadn't realized that she was sick enough for the NICU so this just worried me more. The nurse told me that hospital policy states that all patients have to be transported on a bed so I took Em out of her seat and placed her on the gurney as another nurse came in and strapped her to the bed. She looked so tiny on that big rolling bed! I followed behind with the stroller as the nurses pushed the bed through the halls, into then out of the elevator, and through the NICU doors. As we entered the NICU area I was told that I would have to wait for them to register her into their system and give her an initial exam before I could be with her. I took a seat on a wooden bench and watched them roll her away and out of my sight.

It was so quiet there in the hall. I looked around at the pictures on the walls, they were of the babies who had come and go from the NICU. The bench I sat on wore a plaque stating that it had been donated by a family in memory of their little girl. As I sat watching the seconds tick by on a clock and wondering what was happening with Em I saw one of the nurses that had wheeled her up there come out of the exam rooms and start talking to the NICU receptionist. I heard him tell her that one of the traumas that had come into the ER that night was a 4-year old boy that had been hit by a car and bled out. There was nothing they could do for him. I remember in that moment feeling such gratitude that my baby was alive and such sorrow for that little boy's parents. Someone had lost their child that night while I sat just doors away from them wondering what was taking so long. It was heartbreaking.

Soon enough the NICU nurse came to get me and took me back to Em's bed. She explained that Em would be in that bed for 24 hrs as a sort of quarantine and then she would be moved to a proper NICU bed in a room with 5 other babies. I looked at her laying there in just her diaper with tubes and monitors and oxygen and I thought of how sick she was and how much she had been through and how mad Matt was at me and I remember feeling so lonely and so exhausted. I held her little hand and let the tears flow. They assured me that at this point she was very stable and that I should get some rest. The clock now read 5:30am. They showed me to a Family Room where families would stay with their special needs babies to practice taking care of them before they were allowed to go home. It had a pull out couch, a TV, a small fridge and a bathroom. The sweet nurse made up the bed for me and told me that Em was in good hands and not to worry about her.

Here's where it get's kinda funny (and a little embarrassing but it's part of the story so...). Remember, I had thought that we would be going back home that night and had only packed a small diaper bag for Em and nothing for myself. I was still, ahem, bleeding at this point from giving birth and my milk was coming in and was getting to the leaky painful stage. I had no feminine products or breast pads. I rifled through the diaper bag and came up with nothin' in the way of back up so I did the only thing I could think of, I used one of Em's little diapers as a pad and then folded up some paper towels to use as breast pads. Even I laughed about that!

After that was all taken care of and I had prayed for my baby girl I crawled into bed and the tears started again. By this point I was surprised that I had any tears left! I set my phone alarm for 3 hours from then and cried myself to sleep...





  

Part 3...Meningitis

**Disclaimer: The following section of the story is very honest. It does not paint a very pretty picture of my sweet husband and I during a stressful situation. Before I decided how honest I would be I talked to Matt and asked his opinion. He told me to write it how it happened and I have. It's actually quite therapeutic for me to write about this I've decided and I am thankful that I have a husband that is ok with me writing our "true story" so that one day we'll remember the good and the bad and our kids will see that we made it through it all!** 


*Oh and the computer tantrum continues so I'm not sure if there will be pictures for the rest of the story...dangit!*


The chocolate cake was gone, the tears had subsided for a minute and it was time to go back to the ER waiting room to see how my baby girl had faired. It was about that time that Matt called. He had finally gotten into his truck and had driven down the canyon and had seen my repeated attempts to call him. "What's up?" He questioned? I told him where we were and what had transpired to far. I told him that the first round of tests had come back normal and that she had then needed a CT scan and a spinal tap. He was shocked that so much had happened in his absence. He had left that morning with Thomas thinking that all was well. That his new baby girl was pretty darn healthy and now she was in the ER having painful tests. He was not happy that I had let them do the spinal tap but I told him that I could not get a hold of him before they did it and that I had just wanted what was best for her. He hadn't really seen one of her "twitchy" episodes and he was mad because he felt like I had waited until he left and then conspired with my sister (have I mentioned we're co-dependent?) and our paranoia had fed off of each others' until we decided that something must be wrong. I tried to assure him that Amber had had nothing to do with the situation and that I had brought Em to the hospital under the pediatrician's direction. He was still mad. He said he would be up as soon as he found somewhere for T to go and could find a neighbor to come up and help give Em a blessing. I hung up the phone and the tears started all over again. Now my baby was sick, I had put her through a very painful test that I wasn't sure she needed and my husband was mad at me....good times.

At this point it was about 10:30 at night and we had arrived around 8. Madison, my sis and I sat down in the waiting room and shortly thereafter a nurse came out to talk to us about how the test had gone. I bawled while he told me that she had done well in the CT scan and that although she was not happy during the spinal tap, she was calm now and I could go back to see her. When I got back to the room, there she was wrapped in a blanket with red puffy eyes and splotchy skin that I knew had been caused by heavy crying. I picked her up and rocked her and I cried some more. Us girls sat and waited for Matt and the test results, with me not sure of which one I hoped would arrive first. Turns out it was Matt.

Matt walked in with our neighbor and good friend Sam and told me that another neighbor had let T stay with them (thank heavens for neighbors). The guys sat and visited for awhile and then anointed and blessed Em that she would heal completely from whatever infection she had and that she would be comforted through the procedures she was going through. Then we all waited.....and waited....and waited....

Around midnight Sam offered to take Madison and Amber home for us since they were getting tired and I was left with my unhappy husband to await the test results that still hadn't come (why do things in ER's take so blasted long?!). At some point they moved us to another room so that they could have the resuscitation room for a trauma that was coming in and again we waited.

After a while a doctor came in with the results which showed that Em had a small brain bleed which he said could have just been from delivery and that her spinal fluid had been a dark cloudy yellowish brown color instead of being clear as it should be. He said that her spinal fluid had a higher level of white blood cells than it should (normal being none) and that indicated an infection also. He told us that at this point they were pretty sure that she had meningitis and that she was a very sick little girl. I, of course, started crying again. He told us that they would start her on medicine as a precaution and then wait for her samples to grow out in the lab. The catch was that in babies that small much of the time their samples didn't grow out, even when they were positive for meningitis, because they could only take a very small amount of spinal fluid. Whether it grew out or not they would treat her as if she had tested positive because babies who do have meningitis, especially at such a young age, could go downhill fast. Matt wasn't happy about her being there without a sure answer that she did indeed have meningitis and when the doctor left the room I knew that Matt was not happy. He still didn't think she seemed sick enough to be there and was still feeling like I had gone behind his back.

Before the doctor left he had told us that someone else would come in to admit her and that she would then be transferred to a more permanent room. After waiting forever AGAIN Matt asked if he should stay or go get the other two. At this point it was around 2:00am I was exhausted (I had just given birth like 6 days ago for crying out loud!) and I was pretty peeved at his lack of support and I told him that quite frankly I didn't want him there anymore and to just leave...and he did.

Part 2...The Spinal Tap

I have no pictures to put with this post because I can't get to them off of my other computer right now. It is throwing a tantrum...

So we got to the ER and checked in. They took all of her vitals and sent us back to a room (which since then I have learned was a resuscitation room for the most critically ill patients and apparently they don't put you in that room unless they are really worried. I'm glad I didn't know that back then...). When the doctor came in they started examining her and took some blood samples. They told me that her coloring was redder than it should be and that she was more floppy than she should be (she didn't pull her legs and arms up like most newborns do, instead preferring to lay with her legs and arms relaxed and straight. I just figured she was a really "chill" kind of baby!) They also told me that she was dehydrated and would need some fluids. They told me that they had put a rush on the blood samples and would know shortly if her levels were off (sugar, potassium, sodium). Again I didn't worry too much, thinking that all would be well with some fluids and possibly a glucose drip and Madison and my sis and I visited and waited.

By this time I had tried repeatedly, starting when we left the house, to try to get a hold of Matt to let him know what was going on but he was somewhere in the mountains and out of range.

A short time later the doctor came back in saying that her levels all looked good except that she was indeed dehydrated. Then he proceeded to tell me that with newborns they never stop at the first round of tests when possible seizures are present. He told me that after the basic level checks they move onto trying to find an infection in the brain or spinal fluid which meant doing a head CT and a Spinal Tap. This is where the worry started to set in and my calmness began to crumble. I was perfectly ok with them taking a little blood or putting my 5 day old baby in a machine to get a picture of her brain but sticking a rather large needle into her spinal column was an entirely different story! I asked them the pros and cons. Could she be paralyzed? The chances were incredibly low. Would it cause a spinal headache? Again, very unlikely. What if I choose not to and there is something wrong? Was there another way to find out? Not if it was an infection in her cerebral fluid and if there was one and we didn't catch it the results could be severe brain damage and, in an infant that young, a rapid death. Would it be painful for her? Unfortunately, most likely. Because they were trying to find this mystery infection before it had a chance to harm her they couldn't wait for her to be sedated. Are.You.Kidding.Me. I thought we were coming for a little sugar water! I tried to call Matt one more time before giving them the go ahead......no answer. I remember looking down at Em wrapped in her blanket in nothing but a diaper and feeling like I had failed her somehow. She was 5 days old! She was supposed to come into this world and be loved and cuddled not poked with needles in her tiny little back! And what if it was all for nothing?! What if they stuck that needle in and everything was fine and I had put her through that for ABSOLUTELY NOTHING?! I had heard how painful lumbar punctures could be and the thought of doing that to my brand spankin' new baby was horrible! I asked them if I could stay with her while they did it and they told me that they didn't recommend it. They told me that it would be hard to watch and that they would let me stay but would rather I leave and come back in 20 minutes after both the CT scan and the Spinal Tap were done.

I have to say that laying her back on that ER bed, kissing her little head and walking away was probably the hardest thing I have had to do. I don't know how parents do it who have to leave their children while they undergo major surgeries or medical treatments. I pray I never have to find out!

So I left the room and the tears started. I tried so hard not to show Madison how worried I was because I didn't want her to worry but the spinal was my limit! Madison and Amber and I walked to the cafeteria and tried to drown my sorrows in chocolate cake while I counted the minutes as they ticked by. Now, you have to remember that I had just given birth less than a week ago and my hormones were NUTS so that didn't help matters either. I would just get control and stop crying and then 30 seconds later I would start again. I could not stop thinking about my tiny girl being folded into a ball while they put that needle in her back. Was she hurting? Was she scared? Why the heck was 20 minutes taking SO LONG?





 

A Trip Down Memory Lane...

Since I mentioned our Meningitis episode with Emilia in my last post I have been thinking a lot about it and "what if" we hadn't have caught it. I know it happened 2 years ago but this blog didn't exist 2 years ago so I figured I'd write about it now so that it's recorded for the future. It's a long story so I'll break it up into a few posts and I'll understand if you don't read all of it...

Back then Emilia was a little (a 10 lb. 5 oz. "little") newborn. She was a month early and when she was born she had a really hard time coming around. Her shoulders had gotten stuck on the way out and when she came out she didn't cry. She didn't really move. She was really floppy and I think back and realize that I was not as worried about her as I should have been, after all her first Apgar score was a 2 out of 10. I suppose I took for granted that my other two had been healthy so she would be too. What if she hadn't come around? I remember the nurse not wanting Madison to see her at first, just in case..., while they tried to get her going and then only getting to hold her for about 5 minutes with oxygen near her nose before they whisked her away. I remember seeing her hooked up to oxygen and IV's and monitors and them telling me that she had been stuck 4 times to place the IV line and she still hadn't cried and that worried me.

Over the next 3 days she steadily improved, coming off of the oxygen and the glucose drip, and I finally heard her cry. It was hardest to watch Madison because she had been so excited for this baby and had wanted to be the first to hold her and then never got to on the day she was born. Then she wasn't allowed in the nursery because she was too young. I remember being in the nursery and holding Em up for the kids to see through the window and turning to see tears rolling down Madison's little face as she looked at this baby that she already loved so much and had been dreaming of holding for so long. One of the nurses saw me start to cry and asked how old Madison was. I told her she was eight and she said, "Hurry! Let's sneak her in for a quick second!" I will never forget the sweet look on Madison's face as she held her baby sister for all of about a minute.

A day later we brought our baby girl home and she was held non-stop. Then I started to notice something, something that I had never seen my other two babies do. Emilia twitched...a lot. It wasn't a "startle" like all babies do. She would be sleeping in her car seat and her arm would twitch repeatedly for a minute or so. I would be holding her and her arm and leg would twitch so I'd hold her a little tighter to try to get it to stop, and it wouldn't. The problem was, I was the only one who had seen it. Then, the third day we were home, Matt had taken T four-wheeling and Madison and I were watching TV on my bed with Emilia on the boppy in front of us and she started twitching again. Her little arm started jerking over and over, the longest yet, and I decided that it was time to call the doctor (I have since then looked up videos of newborn seizures found this on Youtube which is exactly what Em was doing.). I called the Pediatrician and she told me that she thought it might be from low blood sugar since she was such a big baby and that I needed to go to Primary Children's to get her sugar, potassium and sodium levels checked. I left the house with Madison and the baby in tow accompanied by my sister (who had already been on her way over to hang out) and we headed to the Children's Hospital fully expecting to be back in a few hours after some tests and maybe a little glucose...