Good News!!

We found out this afternoon that we can still plan on Hadley's line coming out Friday! I didn't know what to expect with this virus she's had. Today was the first day in a week she fully seemed like herself. She is back up to qtr. strength-which is great! Its gonna be so exciting to not have to carry around an extra bag on our shoulders, not worry about stepping on or getting caught up in the line. Not having to schedule mornings around a nurse twice a week.....I don't think we'll know what to do! haha She can turn around in her exersaucer without us having to undwind her line. I CAN'T WAIT to give her a normal bath in a baby tub instead of a sponge bath on the floor!! So many little things will make such big changes.

Other exciting news.....Hadley rolled from her belly to her back!! It was during her bath time. I wasn't sure if it was a fluke so I turned her back on her belly and she did it again. Lenny was at the store so later on when he came home I put her on her belly to show him. Needless to say this time she was mad (she hates being on her belly), but she eventually rolled over. When she was in the hospital, on February 13th, she rolled from her back to her belly when Lenny turned to answer the hospital phone, but she hasn't done it since so it must have been a fluke. Funny thing is that was also during bath time at the hospital.

Much Better Day

Today has been a much better day. Hadley is still continuing to get over the virus but today seems to be the first day she can tolerate qtr. strength again. Since Monday she has been pretty much on pedialtye. We tried a couple other times with qtr. strength but then she would cry in pain. The dietician should be calling back but I think her plan for Hadley tonight is to move to half strength and see how she reacts.

We got out the video camera today. Whenever Lenny would laugh a funny laugh out loud at her she just shrieked and giggled. Then I would start laughing at both of them and she laughed even harder. Much better day than the rest of the week has been-for sure!!

Unfortunately we had to continue with TPN (her bag of nutrition). I'm hopeful to unhook her by Tuesday. Hopefully they will still take the line out Friday. If not I'm guessing it would be the following Friday. Its just so different how a virus can throw her out of whack and then once she feels better she can quickly work back up to 3/4 strength formula.

For those who aren't quite sure what a central line is I'm posting a picture. This was at 3 mos. old while in the hospital. Its almost like an I.V. but it comes out of the chest and is threaded through an artery to quickly disburse her nutrition. It doesn't bother her at all. In fact, until recently she barely knew it was there. Now that she is really grabbing things and putting things in her mouth we have to watch her. She tries to eat the tubing and can get the caps in her hands and try to put them in her mouth. Each night I use a syringe with a needle and draw out liquid baby vitamins from a vial. Then I insert those through an opening in the bag of TPN (the bag of fluid) and shake it up. Then I hook up the tubing to the bag, then prime the tubing. When we are ready to change her out, Lenny changes the batteries in her pump each night and gets the bag in place in the backpack carrier. While he does that I unhook her line, flush the line with a saline syringe and then hook her back up. Each time I go to do anything I have to clean the area with an alcohol wipe. I've gotten pretty good holding three things at one time. You learn to improvise. Most of the time she asleep while we do this. We found it easier to do it this way. She tries to "help" if she's awake, and you don't want her hands touching the sterile areas.

Each Thursday I change the dressing that covers her line. Its not hard for me now that I've done it a few times, we just have to wipe everything with alcohol wipes, and keep our hands sterile along with the line site. I swab the area with 3 alcohol swabs and then 3 betadine swabs-without going over the same area. Then we cover it back up.Never in a million years did I think I could do this. I couldn't handle it when she had her 2 mos shots!

I stayed home today due to the weather we were expecting. Grammie and I agreed that it wouldn't be safe to be out driving. Turns out the weather wasn't as bad as expected, but it turned out for the better that I stayed home anyhow. Hadley had a slight setback today. She has ANOTHER virus, but this was brought out the MSPI symtomps......little rash on the face, pain when eating, hitting at the bottle (and my hands), pinching at me, fussiness, waking up crying during her nap. I knew this could happen, but I still wasn't prepared emotionally. It takes you right back.......the emotions, the worry, the crying, helplessness. We did a couple bottles back at quarter strength and it still bothered her so we will do pedialyte until I hear from the dietician tomorrow. Thank goodness for her!! Whenever I talk to her she hits everything right on.....Hadley's symptoms, how I'm feeling, everything!! She assures me that Hadley will be right back at 3/4 strength and that we won't have to start all over. We just have to wait for the virus to run its course. She had a little virus last week where she was spitting up what I called "mini geysers". That was nothing though, at least she was still happy, which was kinda odd. I'd rather change sheets and clothes 3 times a day and her still happy than have her MSPI symtoms get all out of whack.

This picture was from a week go Sunday before church. Can't you just see the difference!! She is so much healthier.

Pictures of Hadley

Lori requested that I post more photos of Hadley. These are from when she was in the hospital. Hadley really liked the Ocean Wonders Swing at the first hospital. It was the first time she would sit in a swing and not scream like mad. When we moved to University Grandma and Grandpa Cox bought Hadley her very own Ocean Wonders Swing and put it up in her room. Hadley also found that she liked to be propped up on pillows. We could lay her there and keep an eye on her and she would sleep peacefully. She also liked to snuggle there with me for a few hours in the morning. She would sleep in the crib but wake up at 4am so I would pull in her with me. I would doze a couple more hours before I had to be to work each day.

A Long Road Contiuned....

I don't know how we would have gotten through this without each other, and without all the support from family, friends, and church. Lenny was my rock through this whole ordeal. He always put on a brave face, even when I was in the midst of breaking down (in the beginning), and he was the one who kept it together. As my mother said "you wear your emotions on your sleeve" which is so true. We never had to worry about meals. Church was bringing us food once a week. So many people were gracious enough to pass on their leftovers to us or prepare us meals. We had friends bring up food and meet us in the cafteria. We received many gift cards and cards of support, e-mails, phone calls, and most of prayers. We are so lucky to have both of our families' support. Our parents, grandparents, everyone! We didn't know what we would do and they helped keep us going. Right now we are fortunate to have Hadley's great grandparents help take care of her until she gets to go to daycare. I don't know how people manage when they don't have family in town. I could never understand why we couldn't get a break. It felt like things would move forward and then, boom, there would be a setback. I questioned God daily, but then felt guilty because I knew Hadley will grow out of this and there were so many other babies who were in the hospital for much longer periods of time that were much much sicker. I truly believe though, that everyone's prayer have helped Hadley's quick healing. I was told yesterday by the Dr.'s office that Hadley is only the second baby in the last eight years for this Dr., to go from a line to the bottle. She skipped over the NG tube (feeding tube in nose). I am so thankful we didn't have to deal with NG tube again.

A Long Road

So, here we are. Hadley is now 4 months old and we FINALLY have a happy baby. I don't even know where to begin. I don't even know if there is any way I can articulate what we all went through in a minimal amount of words.


The day after Hadley was born I was ready to do it all over again. I had an easy pregnancy (I was still doing Body Pump at the gym two weeks before she was due) and pretty easy delivery compared to what I thought it would be like. She was 5 days late, but she was ready to show up.....5 hours and 45 minutes is all she took. I seriously told Lenny the next day I wanted another baby after Hadley turned one. Has our attitude changed......

The second week Hadley was home is probably when it all started to unravel. What seemed like all of a sudden...she wouldn't nap unless she was held tummy to tummy which meant lots of time spent in the front carrier. She started being fussy in the mornings which grew in to screaming, and some nights hysteria. We would drive her in the car, run the vaccuum, creat white noise with her monitor to no avail. We made countless trips to the doctor. At least once a week, if not twice. I even took her to Children's Urgent care so the doctor could see what I was talking about and they wouldn't think I was crazy. At first a doctor told us she had colic. As she got worse they told us she had acid reflux.

I was so jealous of all my friends who had babies that were "so happy and well behaved". I would feel awful whenever I complained about how miserable our household was and how we had a "fussy baby." I can now say without guilt that the majority of my maternity leave was spent in misery feeling like I was a "bad parent" because all my baby did was cry. Don't get me wrong, there were some days that were better than others. We spent a lot of time shopping and walking in the mall. The car ride would put her to sleep, and the motion of the stroller would help her get in a nap. Most days she slept a TOTAL of 9-10 hours. Most normal newborns sleep 18-20 hours a day, but the pediatricians told me "not all babies need as much sleep."

My breaking point was when a nurse told us that a pediatrcian in the office couldn't understand why her medicine wasn't helping the "reflux" and to wait (6 days) for her nurse practitioner to get back in the office. I had it. No one there understood the severity of our situation, and no one listened. They didn't live with they constant crying, fussing, and lack of sleep. By the grace of God I found a new pediatrician, and called the pediatric G.I.'s office at the Med Center. There I left a message and a dietician/nurse I call "Hadley's angel" took our message and called us back. Finally, after 10 weeks (don't ask how we made it that long) someone was willing to listen. They suspected by our message that she had MSPI (Milk Soy Protein Intolerance), which was confirmed within the first 2 minutes of meeting with the doctor.

Although it didn't feel like it, the week of January 9th, started us on the road to happiness. The doctor had us immediately discontinue formula and breast milk. He wanted her on pedialyte only to giver her gut a rest. I was told to modify my diet to eliminate all milk and soy proteins, and discontinue nursing for 72 hours. I did so immediately, I was determined to continue nursing and get her well. We tried the 1/4 strength of neocate the very next day and Hadley was not able to tolerate it. After 24 hours of a modified diet they let me try nursing her because she would get so angry when I was holding her, and she couldn't nurse. Her skin immediately broke out in a rash again so I was told to stop. That was the last time I could nurse her. I never realized how attached I was to her when I was forced to discontinue. I still get emotional when I think about it. It wasn't her choice, it wasn't my choice, it was what had to be done.

By Thursday evening it was determined Hadley needed a feeding tube (inserted through the nose). Home health care came to our house to set everything up. Normally the baby is admitted to the hospital but there were so many RSV cases at the hospital, and she was so week, they wanted to avoind admitting her. By Friday when the nurse came I was a wreck. I couldn't keep it together, I just broke down sobbing at every turn. I felt so much guilt and so much anger at her original mis-diagnosis. I felt like I was her mother and failed to protect her. I now know that I did protect her, and that we took matters in our own hands.

The tube was placed and Hadley still did not appear to tolerate the feeding tube of just pedialyte, but they had us try the Neocate. Right away I could tell she was in pain so we went back to pedialyte. The constant screaming continued. We had to make a decision that Saturday night. She was admitted to the hospital.

The next 30 days were spent in the hospital. I could hardly sleep at night I was so worried about her. Lenny and I would try to take shifts to sleep. When I think back now, just a few short weeks later, some of it seems like a blur. The doctor tried IV fluids, then the NG tube again. Hadley still couldn't tolerate 5ccs (basically 1/2 of the amount of infant tylenol dropper) an hour through an NG tube. That Thursday the doctor said she needed a central line placed. I was totally freaked out. A week after the NG tube was first placed at home she had a scope done to to see exactly where she was inflamed. It appeared that all her internal organs had irritation, but the most damage was in the large intestine.

Five days after Hadley's line was placed she got a staph infection in her line. We were moved to University hospital as a precaution in case she would need their PICU. Luckily, she never did. After she was over staph she got rotavius. The first day we were scheduled to come home she tested positive for RSV. Luckily, her symptoms from both rotavirus and RSV were not too bad.

Since we have been home she has done remarkably well.