Connor's nursery

Here are some pictures of Connor's nursery.  There are a couple more things I need to hang but who knows if/ when that will happen.  I am glad that I got the bulk of it done before Connor made his early appearance =)

we are home!

Last Thursday we got the go ahead to GO HOME!  YAHOO!!!!  The only test/ procedure still on the doctors list was figuring out the right amount of Lovenox (blood thinner) to be giving Connor each time.  Every person metabolizes the medication differently and it is important to always give the right dose so we would have to drive back to the hospital in downtown Houston on Friday morning for another blood test but I didn't care... after 9 long days we were finally going home!!!  I carried Connor in the front door and introduced him to our dog Maddie who kept her distance and just sniffed him.  Any time he cries she walks over to me and looks in his direction as if I can't hear the cries also.  It really is sweet.

Connor is just a doll.  He rarely fusses and if he does he is easily soothed.  He loves noise and being in motion (riding in the car, sitting in his swing or just being rocked).  He actually sleeps a lot better if there is some sort of noise and nothing is too loud not even Maddie barking at the door bell.

My mom flew down here last Saturday and had been so much help!  She drove us to doctors appointments until I got released to drive, has been cooking lots of yummy food and just being the best Grammy to Connor.  We have also made daily trips to the grocery store, Target, the mall and even to meet Anthony for lunch.

Anthony went back to work on Monday but calls often to check on our little man and can't get enough of him once he gets home.  Connor definitely knows Anthony's voice because he always perks up when he gets home.   Daddy and son really bonded during those first few days in the NICU before I was discharged from the hospital.  It is so sweet to see them together.

Thank you so much for all the prayers and good thoughts we truly felt the love and are so blessed to have all of you in our lives!

Cheering on his two favorite college teams on Saturday

ready to start riding bikes with daddy

father son bonding :)

Good day and good news

The neuro team ordered MRI's of his brain, neck and brachial plexus to check for any neurological problems which they said could take up to 4 hours and he has to be very still while in the loud MRI machine.  If he was moving too much they would have to put him under mild sedation which I really didn't want to happen.  One of the care flight nurses was with him the entire time and was stocked with breast milk and sugar "soothies" to help him be calm.  This flight nurse happens to part of a group that Anthony swims with and he known her and her husband for the past couple months so we felt very comfortable with her taking our little man to the tests.  He did great and did not need any sedation!!!

 Just a few hours later the doctors came to tell me the good news that his brain and neck looked totally normal and there are no signs of any clots or bleeding!  They did say there was some inflammation around some nerves in the brachial plexus causing mild nerve damage which correlates with the theory that he got his arm stuck or something while in utero which caused the blood clot and mild nerve damage.  They think this happened in the couple days before he was born when I noticed the decreased movement.  I am so thankful that my doctor wanted to go ahead with the c section and not induce me or just monitor the movement for another day or two.  The neurologist told me that she is quite confident that he will regain full use of his arm over the next few months!  Good thing his momma is a physical therapist!  I'm going to have to revisit my pediatric class notes :) They actually might send us to a a pediatric PT to get going with exercises.

We are just waiting for the two hematology tests tomorrow and if they turn out good we can go home!!!!  Finally!  Connor is 1 week old today and we are so ready to take him home to meet Madddie and start our life together out of the hospital!  Thank you so much for all the prayers and good thoughts they defiantly worked!

Sweet baby Mercer, Connor's neighbor in the NICU, passed away last night surrounded by family and friends.  They know he is no longer suffering and is in a much better place but it was just heart breaking to see what they were going through.  Sometimes I think we all need a reality check when things start going not our way and remember that it can always be much much worse.  As sad as I have been and as many complications as we have had Anthony and I have realized that Connor is by far the healthiest baby we have seen here and are so thankful for him.

Still in the hospital....

Well, we thought Connor was going to leave yesterday or today, but that is not the case. While all of his GI issues seem to have resolved themselves we are now back to his arm (the reason he was originally brought here). They did another ultrasound Monday morning and saw that Connor has a small blood clot in the upper part of his arm. The good thing is that the clot is not restricting his blood flow at a level that causes much concern.  When he was first admitted here they didn't find the clot, but are very certain it was there and that the tech doing the ultrasound simply missed it. A positive from this is that when they did do the initial ultrasound they tested his blood flow rate and the rate yesterday was better than on the first ultrasound. That fact lends validation to the idea that it is getting better. 

The severity of the clot seems to be fairly low to moderate, but he will have to be given a shot in his thigh twice a day for 6 weeks. Dr. Arnold does not seem to think that he has any sort of clotting disorder and that the clot was likely formed by whatever event happened inside Amy that may compromised his arm. 

Last night Connor got his first shot by the nurse and this morning Amy administered the shot. She did very well, but was nervous to stick her little man with a needle.  Amy and I both will have to be proficient in doing this before we leave as we will administer the shots from home.  They are waiting for some results to learn if they are giving him the correct dosage. Every kid is different in how much they require. 

The other issue is his the lack of movement in his left arm.  The great thing is that it has done nothing but gotten better since we have been here. The doctors seem think he could have a mild case of Erb's Palsy. If that is the case it will be something that usually resolves itself over time. However, the neurology team just came by and assessed him. They have ordered an MRI to be done on Connor just to make certain they can rule out any other type of neurological problems that may have been caused when he was compromised in utero.  They are pretty confident that the tests will come back negative, but they just want to be sure there is/was not another blood clot in his brain. Our doctor who has been very upfront and honest seems very positive that nothing severe is going on, but we won't know until after the MRI. 

A couple of things need to happen before we can leave. 1. We need to get the results from the MRI. 2. The doctors need to dial in the correct amount of blood thinner they will put him on. 3. Amy and I need to become proficient in administering his shot. 

Amy has been such a strong woman and I am so lucky to have her. Today she is struggling and has been sad as all she wants is to take her baby home with us and for him to be okay. Please continue to pray for our little man, that we continue to draw strength from Christ, and that the doctors are able to continue to treat any issues that arise. Please keep praying for Connor's buddy and neighbor Mercer and his family. 

Thanks again for sending prayers, positive energy, and thoughts our way. We can feel the spirit of The Lord working and can feel all of you in our hearts. 

Anthony, Amy, and Connor.

Sent from my iPad

Getting better

It's Anthony here, we wanted to give everyone an update. Connor had a good weekend. He began breast feeding (sorry if that is tmi) and this was kind of our last "test" with respect to ruling out any other GI issues. He has been processing his food very well, so the docs feel really positive that we have no more concerns with his GI issues.

Sometime this morning the neurologist will come and examine his arm and they have ordered another ultrasound. While his arm has made progress everyday it is still not 100% and they want to make sure they can rule out everything possible before sending the us home home.

We have been very blessed to have the Ronald McDonald house here on the NICU floor. Since Connor is in the NICU and we are not patients here we can't sleep in his room. The RMH makes it possible for us to be right down the hall.  This is amazing because if we didn't have it we would be staying in a hotel a few blocks away and it would make Amy and Connor's breast feeding sessions a lot more difficult. RMH will now be a charity that we donate too and if you're looking for somewhere to throw some cash we can attest that they do amazing things and make it very convenient for families going through hard times.

Amy is doing so great and is such a strong woman. Her doctor released her from the hospital a little early, so she could be with Connor and I. Amy was in lots of pain and could barley walk but she put her pain and discomfort aside to be with us. She is getting better everyday though.  She is an amazing woman and I couldn't be any luckier.

We hope to go home today or tomorrow. Please pray that that happens.  Thanks to everyone for Your prayers, positive vibes, phone calls, and everything else. This would have been a lot more difficult with out you all.  A special thanks to Amy's parents, my mother and grandmother for being with us through this time. We love you all.

One more thing, we have made friends with the parents of another patient in Connor's NICU.  Their little guy's name is Mercer and he doesn't have very long to live. His parents are followers of Christ and trust in God's plan for them and their little guy. While it kills me to even write about this right now it is such a testament to how strong people can be with the power of The Lord watching over them.  Please pray for baby Mercer and his amazing family.

Family united!

I was discharged from the hospital this morning and after a brief stop by the house I came down to memorial Hermann children's hospital to see my two boys!!  Thankfully I have had my parents by my side this whole time and they are planning on staying through the weekend.   Anthony's mom and grandmother have been down in Houston with Anthony and Connor the past two days.  We are so thankful they have all been here with us and don't know how we could have made it hrough this time without them!

Connor is absolutely adorable are getting better every day.  They don't think we will ever know what exactly happened to his arm.   They think that he had it caught on something or the cord was wrapped around it or something like that.  The important thing is that it he is moving it more, has a increased grip and his skin color is normal.  There are still two red areas and he will fuss a little bit if we mess with it too much.  They are going to have a neurologist look at it on Monday.  As for his belly he had meconium plug syndrome.  The first poop that babies have is called meconium and usually occurs in the first 24 hours.  When there is a meconium plug it is harder for the baby it pass and they usually need a little help.  This is what happened with Connor and as soon as they gave him an enema it all came out and his distended belly started getting better.  I am hopefully going to get to breast feed him tomorrow and hopefully he will start having normal poops which will allow us to go home sooner.  His breathing is great now.  He was only intubated for one day and then on  C-pap for one day and now he is breathing on his own and his O2 saturation is 100%.

Anthony and I gave him his first bath tonight and he hated it at first but LOVED getting his head rubbed and hair brushed.    

Thank you for all the sweet notes, texts, emails and prayers!  We are going to keep updating this blog when we have any news.  

Baby Connor is here

Connor Joseph Hilbers was born October 3 at 4:00 pm. He weighed 7lbs, 8oz and was 19 inches long.

Monday evening I began to notice him moving much less in my belly. By Tuesday morning I was very concerned and went to my doctors office first thing in the morning. Connor had a great heart rate but had very little fetal movement. We spent the rest of the day in the hospital while I was being monitored.  After tests and an ultrasound they decided I could go home but needed to go back to the doctor first thing Wednesday.  At that time his heart rate was good but he was still not moving much.  My doctor recommended that I have a c-section as soon as possible due to the decreased fetal movement and she didn't think Connor would have tolerated being induced basically he just needed to come out.

My surgery went well and Connor came out crying and looked great!  About 30 minutes later when the neonatologist was examining Connor they noticed that there was a bump near his left elbow and suspected it might be broken... After the x ray showed no break they started to worry about some sort of vascular issue (possibly compartment syndrome) and decided he needed to be transferred to another hospital with specialists.  I made them let me get out of bed so I could see my baby before he left on the helicopter.   When the care flight team arrived I was holding his hand and talking to him.  His breathing was really labored due to pain and from being agitated so much so they decided to intubate him (breathing tube in his throat).  Connor was careflighted to Memorial Herman children's hospital in downtown Houston about 9:00 last night.  Anthony drove down there and has been with Connor all night and today.  Connor's arm has been getting much better without any intervention and they are no longer concerned about the arm.  His abdomen became distended and firm so they placed a orogastric tube which began to drain a greenish fluid.  They suspected that his intestines might be twisted so they did an x ray with dye but that didn't show any problems which is great and he didn't need emergency surgery last night.   He has already had a couple poopy diapers today so that is good news especially since they were worried about his intestines.   

Basically something was/is wrong with Connor but they are not sure what.... All the potentially bad things they suspect are being ruled out which is reassuring.  Anthony has been by his side this whole time holding his hand, talking to him and letting him know how much we love him.  He is still in the NICU and is still intubated, but hopefully they will take it out this afternoon.  We really do not know what is wrong but all the original problems are getting better.  He is moving his arm more, the color is more normal and his abdomen is much less distended.  

My doctor came by this morning and said that she will let me leave tomorrow morning which is 2 days early so that I can be with Connor.  We are planning on getting a room near the hospital downtown so that I can start breast feeding and be with Connor (I have never even held him).  Please keep us all in your prayers for a speedy recovery and no new problems so that all 3 of us an go home together soon!