As most of you know from our phone calls and e-mails, Daniel had a close call. For those of you that didn’t hear here is a brief over view of what happened to our little man. Some pictures will follow at the end of his story.
Tuesday, Sept. 23rd we had friends and family over to celebrate Ivy’s 2nd birthday. Everyone took turns holding Daniel through evening and he slept through almost all of it but that is common for newborns so no one thought anything of it. He nursed around 10 pm and went back to sleep and around midnight when Erin and I usually got to sleep he didn’t wake up and want to eat but again we thought nothing of it since he has just eaten and we have always nursed our babies “on demand” and not by a strict schedule.
Around 4 am I woke up and realized he had not woken to eat at all yet. And so I stretched and woke myself up so I could get him up to nurse. When I reached over into the bassinet our precious little man was cold to the touch. My heart jumped into my throat and I scooped him up. He was breathing but oh so cold. I quickly took his temp and it was down to 94 degrees. I started stroking him and calling his name and trying different things to get him to open his eyes. In response I got nothing. I called out for Erin while the tears started to roll across my cheek. Erin woke instantly from the sound of my panicked voice calling his name and telling him our son was cold and wouldn’t wake up. We tried for a few seconds longer to get a response and still nothing. I held Daniel close and wrapped him up in our blankets while Erin jumped up to call the emergency number. While Erin talked to the nurse Daniels temperature creep up a little bit here and there but he still wouldn’t even give us a flicker of an eye lid.
We were told to get him to the hospital a temperature drop like that usually meant infection in little babies. So Erin woke the older kids to tell them we were going to the emergency room while I tried to keep Daniel warm and get him to wake up. He grabbed a sleeping Ivy and we rushed off to St Francis Hospital.
Upon arriving they took all his vitals and also weighted him. Fully dressed he was 6 lbs exact. That meant he was really 5 something. Our hearts sank…he was 6 lbs 4 oz at birth and after the initial weight drop all babies do was back up to 6 lbs 2 .5 oz just a few days ago at his check up.
For 5 hours we sat in the emergency room while various Dr’s, nurses, and techs came in. They had to draw Daniels blood over and over because the samples would clot and they couldn’t use it. It was so hard to hold you tiny child while someone jabbed him with a needle over and over twisting it in his little hand this way and that. As hard and heart breaking as it was it was good to hear him scream and know that he still had it in him to do so after so much silence. They took chest x-rays and ran test and nothing showed up. They decided to admit him to the hospital and keep looking into what was going on. It wasn’t until THEN that they finally gave him an IV. He was so dehydrated the skin on his frail little body was sagging. In all the things going on over those 5 hours Erin and I both wish we had caught that and our poor little boy could have got some much needed relief sooner.
We were brought up to the 8th floor and settled into our room. Daniels temperature started to read almost normal. And they put him on an IV again. We waited for the doctor who would be making rounds to come in and when he did it brought no answers just more questions. Our son had been basically dying. His body had started shutting down….but why? There was no sign of anything wrong. So we started to go over his eating and other habits. He nursed every few hours, had poo and pee diapers, didn’t spit up or react in any other way to question. “Failure to thrive” was the diagnosis. All it took the Dr said was a few feedings that he didn’t get enough ….be it he was tired, not feeling well, lazy….what ever. I nursed and we weighted him. After a few times this revealed that even though he was sucking and I could hear some swallows Daniel wasn’t really getting anything. There was milk there but he wasn’t taking it in. So we started a very strict 2 hour routine. We tried to nurse, then we had to feed through a syringe, then I had to pump for the next feeding. This basically took 2 hours to do so Daniel and I just cycled through this basically non stop. A breast feeding specialist came up from the clinic to work with us. After talking though things, watching him eat and looking things over they said he has an over bite (which we knew) kept his tongue rolled back, lips sucked in, was lazy but on top of that has a high metabolism and slow growth rate (thus me not gaining weight during the pregnancy and him coming out tiny after a week and 1/2 late. So they started having me use a breast shield to teach him to latch better. After 24 hours of this his latch/lips was improving but he was getting nothing from me now instead of just a little. It just didn’t seem to be working right. They said keep at it. By the next visit I had basically lose my milk. He wasn’t moving the nipple through the shield. It improved his latch but what good was that if he wasn’t moving the nipple and getting any milk.
My midwife came that night and helped me latch him on the breast with a tube attached to the syringe that we slipped in his mouth (NOT an easy task!!!!) and worked with him for awhile trying to get him to suck. He would work at it but then get angry. He was so confused and still weak. I didn’t have enough milk for his feedings and so upset! Instead of getting better things just seemed to get worse! My midwife called another midwife that we knew and that dear Angel came to the hospital at 11pm and smuggled in some of her breast milk so we didn’t have to give Daniel formula. The next day my best friend smuggled in some of her breast milk. Another friend said she would pump but couldn’t get anything so she called a friend of hers and that angel shared 9 bags of her frozen breast milk.
5 days in the hospital brought no more answers. Just head scratching. Dr’s tried to scare us into bottle feeding with formula and things like that. Some Nurses tried to guilt trip us by stating we were hurting our baby and didn’t care about what was best for him. But a bottle and formula wasn’t going to “solve” anything. They said I needed to just put him in the “crib” at night when I wasn’t feeding him and hinted my keeping him against me 24/7 was endangering him. When in truth he needed my heart beat, breath, and warmth to keep him feeling safe and loved though such a horrible time as did I need him! God had made me his mother and him my son. We had been one and would fare though this as one.
We started using a fortifier with the breast milk to give him the added calorie boost he needed and we were seeing small weight gain. The Dr doing rounds that Sunday morning said we could go home. We had to stick with the strict schedule and bring him to the hospital every day to have him checked out. What a wonderful feeling to walk back into our home with our little man. It wasn’t and still isn’t easy keeping his schedule and darn need impossible to keep house, cook and take care of 4other children’s needs. But we are working together as a family to get it done and learning that we are stronger then we knew we were, capable of doing things we thought we couldn’t (like washing our own socks and underwear or staying awake for over a day) We are also learning to laugh more (like putting Ivy’s clothes on Danny and not noticing its wrong, comforting a crying child in the middle of the night only to find your rocking the sound to sleeping child and the crying child is still crying because he is in the bassinet still or shutting off your older kids’ lights and telling them to go back to sleep because it’s the middle of the night when really it’s time to go to school. Luckily Dad happen to get up soon after this one and woke them all up so they made it to school) God does supply you with what you need even when you think its falling apart. He gives your more strength then you know, more love they you can fathom, and never lets go of your hand.
Over the course of the next few weeks several different women have donate their breast milk to our baby boy to help make sure he was getting the “pure gold” that God created women to make for precious new life. Because of them it’s been 5 weeks of nothing but my milk and theirs for our little man. 5 weeks of all those antibodies and god things that he so desperately needs! They saying goes” it takes a village to raise a child” but in Daniel’s case … it takes a village to feed a child! We are so blessed to have this “village” of women and their families that are willing to help feed our precious baby. To know these women and see their hearts brings tears to my eyes! They are most defiantly Daniel’s Guardian Angels!
We have also been blessed with an amazing church family. It took us a lot of searching and prayer to figure out why God had called us to leave the ministry we were in and where He wanted us to go next. He laid on our hearts certain things that would be a key roll in knowing His will. One of those things was the importance of children. We knew we needed to be somewhere where children were seen as a blessing and a treasure to all. We felt God was telling us to spend time nurturing our family and children and when we found where He wanted us this would be a major part of it. Little did we know 3 months ago how much we would need it. To know each day our child was covered in the prayers of our Father’s warriors brought more comfort I can not even begin to explain. To feel their love and kindness so deep whether in meals prepared, children cared for, phone calls, hugs, even simple smiles. We knew our Little Daniel was seen as God’s precious tiny child in their eyes and thus part of their family and a treasure.
We are still trying to figure out what is wrong. Still having to force food into him some days. Still feeding with a bulb and tube. But he has gained over a pound! So even though he still has a long road ahead of him, as we figure this out, watch for developmental problems from all this, and closely keep track of what he eats and how he grows…he is here! Our little man we prayed so hard for is still here with us and even blessed us with the gift of a first smile and coo. The next few weeks we will try out a few different possible avenues to see if they could shed some light on his struggles. Please keep praying for him and finding a solution!
Daniel laying on the hospital bed

Daniel’s tiny feet

Tiny feet and toddler feet

Miss Ivy loves her baby brother soooooo much!

Daniel gets to go home!!!

Come back in a couple days and see how much I have grown since the day I came home
