Monday, June 3, 2013

Our Little Miracle, but aren't they all?

Disclaimer: I have tried to sit and write this particular post on a number of occasions. I stop due to tears from me, or possibly my other smaller people. I am already finding it hard to remember details and a lot of it feels like a bad dream. In the first few days of hospital dealings I truly didn't think I could make it through, and now here I am and I want to tell about it. To give God glory for sparing our sweet girl and for seeing us through in very intimate ways. I also know how blessed we are to have had such a best case scenario of a worst case situation.
I don't even know how to start this post but I want to remember it for a number of reasons, but mostly because God deserves ALL the praise and glory for bringing our family THROUGH a seemingly hard situation.
So I am starting from the beginning. On a Tuesday afternoon, after a great day SelahBelle started having a lot of blood in her diapers with her poop. I, of course, freaked out and called one of my best friends. Together she and I feel as though we could run a medical practice, better than most Dr's today. Her son had a milk protein allergy and had some blood in his diapers at times. She gave me the lowdown on what to do, but some of SelahBelle's symptoms weren't matching up so we decided I should probably talk with a liscensed Dr as well. Wednesday morning I was there when the doors were unlocked and saw a Dr. who was in a big fat hurry. Once I mentioned the allergy issue she said that was probably it and went to get my a gallon of formula, because I would "probably need it" she said. I started to cry because nursing is something I have worked VERY hard for with all of my babies and her flippancy was frustrating. She went on to give me some incorrect information on the allergy issue, so I decided she probably wasn't going to help me. I came with diapers in hand and lots of details that she wasn't that interested in. I asked her if she didn't think it could be something much more serious, because in my gut I just felt something was wrong. She said no and headed out the door. More crying for me. I headed home on my new dairyless diet and spent the rest of the afternoon sitting on the couch feeding SelahBelle and changing diaper after diaper of blood. I literally didn't move from the couch, stressing...texting pictures to my pseudo doctor friend. Who finally let me know that it wasn't the same as her son's and validated what I was already afraid of...this wasn't just an allergy. I waited for Mick to get home and once I got his approval that I wasn't being irrational, called Children's and they of course said to bring her to the ER. We went in and spent most of the night doing tests and XRay's. Everything came up fine. Phew. Thank goodness and then we came home with me still breastfeeding and on my strict eat hardly anything tasty diet. SelahBelle was still feeling limp and lethargic but the blood wasn't as bad. Then we get a phone call that her x-ray had a little problem and they wanted us to follow up with an ultrasound, back at the hospital. Our doctor's office seemed irritated and unaware by this finding and did little to help us get the ultrasound scheduled. I wont go into what transpired between I and a nurse but in order to get my point across I had to resort to sobs and shouts to get her to see the seriousness of the issue. Meanwhile SelahBelle had grown even more tired and a little bit unresponsive. Mick rushed home and we finally get an ultrasound. Our ultrasound tech was by no coincidence a believer. She easily sensed our angst and took our mind off things while she did a very long ultrasound by reminding us of our faith. At the end of the ultrasound we waited for a conference call with the Doctor that had seen us at our pediatricians office. She rattled off a lot of big words and gave us no time to ask questions. She said that they had seen something on the liver but didn't think it would be of concern. We should simply follow up with our Dr. in the am. Mick and I both lost it at that point because SelahBelle had grown more lethargic and no one seemed to want to help us. Ugh. Just thinking about the helplessness we felt at this point makes me want to cry and throw up all at once. I felt like I was taking crazy pills and that no one cared about our sweet girl. The ultrasound tech mentioned that we could go back to the ER again and let those Dr's look at our ultrasound. After we had just discussed our faith in Jesus, we weren't exactly a picture of kindness and grace, but we were super stressed and worried parents. I apologize profusely and was thankful that she already knew Jesus, since we at that time weren't doing Him any favors by our actions. So, we took her suggestion and headed back to the ER. After we got triaged SelahBelle continued to have worsening bloody stools. The doctor continued with the view that it was an allergy to milk in my diet (just to save confusion, they didn't think it was my actual breastmilk, but to the dairy/milk protein in what I was eating) and to better quickly help SelahBelle we would need to give her formula. He would then consult with a GI doctor and take a look at the ultrasound findings. At this point I just wanted her to get better so I agreed. And then sobbed at my failure to keep my 3rd child from the bottle. The doctor new I was upset but I just wanted to do whatever it took to get her better the quickest we could. After SelahBelle finished off 2 ounces of alimintum formula the ER dr came running in and told us to stop feeding her anything. I just knew he'd finally talked with a GI doctor and had come to his senses that my breastmilk was best regardless:) But instead, he comes in with a diagnosis of NEC a serious intestinal infection that I knew nothing about. At first I was relieved because this meant it wasn't my breastmilk...but I would shortly realize that a little allergy would have been a much easier alternative. They mentioned we were being admitted and that we would be there for (at least) a few days. I was so overwhelmed by the emotional roller coaster that I had to leave the room and sob some more. Ugh. Mick stayed with SelahBelle while they quickly did all sorts of bloodwork, tests, etc. Then we get the news that we are going to the Pediatric ICU. We get upstairs, SelahBelle on a big ole hospital bed...I couldn't carry her...double ugh. We are greeted by a team of nurses and doctors who are exceptionally nice but don't know what to make of our sweet girl. They can't believe she has NEC, an infection that affects mostly preemies and formula fed babies. She is neither. This doesn't help me feel calmer. By this point I am just crying everytime someone starts talking to me. They say they can't give us concrete answers...I am a concrete thinker. Then they drop the bomb that we are going to be there a minimum of 10 days. That she wont be able to eat for 7 of those days. I believe at this point I run from the room to sob somewhere else to keep them from admitting me to the hospital across the street. I felt so out of control and then kept thinking of my other babies at home and hearing SelahBelle's hunger cries were almost unbearable. Mick followed me out to "try" to talk some sense into me. I just couldn't get over feeling like all of this was my fault. Either from my breastmilk, or my overanalyzing or my insistence that something more was wrong had somehow willed it to be...Mick was of course having to deal with watching our baby in the hospital and watching his wife act like a baby. He reminded me sternly that the alternative in waiting things out could have been SelahBelle's life, and would I be willing to risk that alternative? Yeah, no way. So I got myself back together and headed back to be a Momma again. By this time my Momma had arrived and insisted I lay down while she held a pacifier in SB's mouth for 3 hours straight. I think I slept an hour that night and then woke up just the way I had laid down, tears just falling down. This was Friday by now. Friday was a good day. We got to meet the GI doctor and his PA. They gave us a bit more concrete answers, explained what they felt had happened and where we were headed. A control freaks dream. A plan. Finally. More tears for sure but much less hysteria on my end from then on out. They explained that the ultrasound showed air or gas on SB's little liver. This is not good. The only way gas can get into a little ones body is through bacteria from an infection emitting this air/gas. This is textbook for the aforementioned NEC diagnosis, which usually requires surgery. But since they had not seen any perforations or tears in the x ray's she had (the best kind:)) medical NEC. Most require surgery to remove the part of the intestines that is in a sense "dying", but since it appeared we had caught this early she would only need antibiotics and gut rest. Good news. Except this meant gut rest. Which means hungry newborn for a week at least. Everyone wants to know what caused this to happen and the answer is, we don't know, doctor's don't know and we will probably never know. It is an infection in the colon and there are thoughts as to how it gets there but there isn't anything SB did or was exposed to that caused it.  Aunt Brittany, Taron, Erin and my mom all come by for visits and I felt much better. I felt so good indeed that I sent Mick to Coach the state tournament since he was coaching his high school baseball team in the playoffs. Nana came to help with SelahBelle. I lay down to finally rest and they come running in again that we've gotta move rooms. We are being taken down to the NICU because they need our room in the PICU. I totally understand there are sicker babies that need help so I am good with that, but change is not my friend and we had just gotten used to our new "home". Once we get down to the Newborn ICU though we realize we have just hit the jackpot of nurses in that these ladies are unbelievable at dealing with people like us and babies like SelahBelle. She is an old lady compared to these babies and an anomaly in that she has been home before. These babies are all sleeping soundly and SB is screaming her lungs out for a good part of the day. Hoping just maybe a nurse hadn't read her chart and would give her a drop of something. She especially disliked me since I was producing the very stuff that she was dying to have...milk. But each day she got better and by day 5 had almost come to terms with the fact that we were just NOT going to feed her. Over the course of time she had x-rays, bloodwork and all sorts of pokes and prods. She was such the fighter and trooper. Since she had been home and held, a lot. She was impossible to leave at the hospital. The nurses were awesome but SB was a fulltime job. Mick and I took 5 hour shifts over nights and then during the day he or I would possibly get to go home. I literally lived minute by minute for that first week. I realized after the 3rd day that I'd been wearing the same clothes for a long time. Yikers. I just couldn't bare the thought of SelahBelle waking up at night and not seeing a familiar face, more importantly, her Momma or her Daddy's face. She was already dealing with so much that the things I could control to help her I was determined we do. I haven't even mentioned Micah and SadieJane...oh mercy. That was a whole nother nightmare. I rarely leave them and I definitely don't just disappear for days without explanation. Knowing I could not be with them was a second breakdown for sure. This all transpired over the last few weeks of school for them, Micah's birthday and mother's day. Boo hiss. Timing...ha....I am not thinking there is a good time to have your baby in the hospital. But my mom, Mick's mom and so many of our friends and family stepped in to take care of our big babies at home. My mom took the hardest job of all, bedtime and nighttime. So thankful for all that went on. Our family got to experience the true body of Christ and how it is supposed to work. So often there are problems, etc. but we just sat back (well, sat at the hospital) and watched everyone around us dive in to help us in real and tangible ways. My preschool family brought snacks, gift cards and money for food parking, etc. Mick's baseball team took up a huge donation so that we could afford to eat in the cafeteria, etc and not leave SB for more than a few minutes. My close friends saw to it that I had a Mother's day present. Matilda Jane no less:) Taron and my mom brought my kiddos to me to play so that I wouldn't have a breakdown about that. Mick's mom came and stayed with SelahBelle so we could celebrate Micah's birthday. Mick's sister kept the kiddos. My cousin Jessica, friend Erin, Debbie, Katie and Taron all took turns with shuttling the big ones here and there.  My friend's Brittany,  Amy, Angie, April and I am sure others I have forgotten brought us food, and came to sit with me or hold SelahBelle so I could remain sane. It was amazing. More people than I can list (or respond to;)) texted and messaged me offering words of encouragement and prayers. Mick and I both were simply overwhelmed by the way we were taken care of...and were so thankful to shed some happy tears every now and then. At day 7 (really day 8 for us and SB because we came and stayed at the ER and she had been on limited diet from then on;)) we got the exciting news that SelahBelle had no gas or air in her abdomen or liver and would get to slowly start eating again! Oh happy day that was, some of her old nurses even came back to celebrate and witness the big event!! Unfortunately she did not get to go back to my breastmilk. I had continued pumping throughout our stay because it was the one thing I could control, but new in my heart I probably would never nurse again. Sad realization but after all that had transpired the GI doctor wanted to hold off on offering my breastmilk since it had been questionable originally. He mentioned it would probably be months before we would try to reintroduce. After painstaking plugged ducts and analyzations I made the decision to close up shop and stop the pumping a week or so after we came home. I didn't think I could keep it up nor did I think I would want to risk rocking the boat by reintroducing something that might cause a setback, even a small one. So, my 3rd and most likely last baby only got 5 measly weeks of breastmilk and I have all sorts of failure issues about that whole decision but I had to do what would work for our family and do what seemed wisest to me. No judgment here on nursing struggles any longer. Anyways, we came on home on day 12 and had our last little hurdle last week, which is a barium enema. We are awaiting those results now but assume no news is good news. There are a few other things I want to write about the whole ordeal but I think I've maxed out this post. I wanted to close it with all of the ways we SAW God's hand in this situation. I am sure there were more than we could count of His hand that we didn't SEE.
- My friend Taron's knowledge and experience with the milk protein allergy allowed me to be more confident in my instinct that something was wrong.
- Even the Dr's lack of concern for me initially worked for our good that I refused to just go back to them but rather went back to the ER that night out of frustration...who cares why we went looking back, just glad we did.
- Oh my stars, every last staff at Children's Healthcare of Atlanta Scottish Rite were ordained by the Lord, I just know it. They are indeed a post all their own.
-Specifically our interaction with the ultrasound tech who was the first person to validate that my gut instinct might be right.
-Mick and I did not fight or argue or even have an ugly glance for at least the first week. We worked like a well oiled machine, solely by God's grace allowing us to do so.
-We named SelahBelle for a reason and were able to use her name to witness to so many people and opened up so many conversations about Jesus that we wouldn't have otherwise had.
-I only wish I'd had the mind about me to write things down as they happened because those moments of seeing God's hand are what continued to see us through day to day.
Lastly, I know this situation could have been much worse. I also now know even more acutely that there are all sorts of hurts and sicknesses in this world that we don't even see or hear about until you are in the hospital room next to them. Healthy children are a blessing not to be taken lightly. Lesson is definitely learned here. We will take nothing for granted and when I do, I'll just come back and read this post to jog my memory.


Carrie Cochran said...

I am so proud of you and how you wrote this. It is all so beautiful, though wasn't at the time. You are so brave.

Tracy Carson said...

Oh Stephanie. What an ordeal. We were certainly praying for you all from California. We love you so much and trust that SelahBelle will be happy and healthy from this point forward!

Anonymous said...

"you sure you dont want chickfila?"

beth ewing said...

Wow! I don't know if you knew but I had to take Lorelei to the ER at 5 days old b/c she was projectile vomiting. It turned out to be the formula but it was so scary. So I only know a fraction of what you must have felt and I know how upset and scared I was. What a blessing that you have such an amazing community of help. Although I love our Army life, I kept thinking that if something happened here, we'd practically be on our own. There is something to be said for being about to build a community somewhere. So glad she's ok now. Also wanted to say I hope you're considering a new pediatrician. I was appalled at how they brushed you off. I'm sure they get lots of new moms that come in for nothing but there is something to be said for mother's instinct and pediatricians need to realize this. Ours in VA was amazing at that. She always trusted my instincts first.

Anonymous said...

What a witness you are and an amazing story for you to share. You will have many opportunities to help others through this experience. Be open to whatever God leads you when it is your turn to witness or share your story. Faith is a prized possession and God will always see us through. Love you. mkm

EMU said...

Oh Stephanie! I had no idea all this was going on. So glad all is well now. God bless little SB!!! xoxo