Pictures After Surgery

Here are some pictures of Trinity's back after surgery. Things are going really good for Trinity. She had some wet diapers today and hopefully by the time we leave she will not have to be catheterized anymore. They are still giving her Tylenol as needed for her pain. Today she had some drainage from the incision, but the surgeon is not real concerned about it. They would like her to be on IV Antibiotics until Wednesday, so that means she will be in the NICU until then. We are blessed to still have Kathy (Shannon's mom) here so Aubree has someone to stay with while we make trips back and forth to the hospital. Thanks again for your prayers and support.

Surgery Comes Early

There was a change in plans for the Arthur's around 12:30pm on Friday. While giving Trinity a bath I noticed another place where the skin had not attached and was seeping out puss. Shannon called Dr. Gilmer-Hill and asked her what we should do. She had us go to the ER and told him that she would meet us there and get the incision closed up so Trinity didn't get infection. We got to the ER around 2:30. For those of you from small town Iowa, this was not your normal ER, in fact according to the Anesthesiologist this ER is the busiest ER in America and after spending 5 hours in it I can understand why. This was a long afternoon for poor Trinity. She had her last feeding at 12:30 and hadn't ate anything since. It is not that fun to try and hold a 3 week old baby that just wants to eat. Finally around 7:30 we headed to the OR for pre-op. They started the surgery around 8:00 and the doctor came out to talk to us around 8:50. She did the incision a different way and used different stitches that hold better. She also used steristrips that she will have on for 10 days. After surgery Trinity headed back up to the NICU. When she got up there mom and dad were happy to see that she didn't have the ventilator on. However, Trinity was in a lot of pain and very uncomfortable. They are giving her Tylenol for the pain when she needs it. Today the surgeon told us that she wanted Trinity to stay in the NICU for 3-5 days so she could be on an antibiotic through her IV. This of course was not something we wanted to hear, but if it helps with the healing process then we can't really complain. Unfortunately they are having to do the catheter every 6-8 hours. This was of course something that we wanted to avoid if we could, but hopefully she will recover from the surgery and start urinating on her own again. It has been discouraging to have to go back through all of this, but hopefully this will heal better and we will be able to start looking forward to the day that Trinity will have no more pain. Please pray for the healing of Trinity's back and that she would start urinating on her own again. The picture is of Trinity's back before surgery. It is not the greatest picture, but hopefully you get an idea of what it looked like. When we can get some pictures of her back after surgery we will try and put them on here. Thanks again to everyone for the continued thoughts and prayers, they are making a huge impact on our lives and others, as God continues to be faithful.

Another Surgery for Trinity

Today Trinity had a appointment to see the Neurosurgeon, Dr. Gilmer-Hill. Over the past couple of days Trinity's incision on her back has not looked very good and almost like there was an area that the skin did not attach to each other like it should. The doctor looked at it today and said that she would have to go back in and reconnect it. This would require her to scrape off the old skin and then reattach the new skin together. They will have to put her under again and she would be in the hospital at least for one night, if not more. This was really not the kind of news that we wanted to get. Just when things were starting to look up for us something like this happens. The surgery will be next Wednesday. Trinity is still urinating on her own and we are doing the catheter about once a day. We have a Home Health Nurse that comes once a week to check on Trintiy. She weighs about 8lbs and has no problem eating!!! We will keep you posted on how things are going and if there are any changes in the day of the surgery.

Trinity's progress

This has been a great first week at home with Trinity. Trinity is definitely a fighter and we truly feel like she is going to prove the doctors wrong. As we told you in the last blog, we are having to do a catheter every 4-6 hours, but in the past two days things have changed. Trinity has started to urinate more on her own. I called the urologist on Wednesday to check and see if we were doing something wrong, much to our surprise he told us that she could be on the road to recovery and starting to urinate more on her own. We have been able to do less catheters and Trinity has been having more wet diapers throughout the day. From the first day Shannon and I have both felt that Trinity would pull through this and prove everyone wrong. It feels really good knowing that even the urologist feels like she could pull through this and she may not have to be catheterized for life. We ask that you would continue to lift Trinity up in prayer. We as parents would love to see the day that Trinity would not have to be catheterized at all and that she would be able to empty her bladder on her own. She has been through more then Shannon and I combined in her 15 days of life and has handled it all with so much strength. God has used Trinity's life in so many ways to bring people closer to him. Someday I hope Trinity understands what a significant meaning her life has had on others. Thank you for your continued prayers and support. We can't wait for the day that she can meet all of you. Love-Shannon, Miranda, Aubree, and Trinity

Trinity is Home!!!!

Trinity is finally home after 11 days in the NICU!!! Shannon and I got to bring her home around 7:30 last night. Yesterday when I got to the hospital the doctors were doing their rounds and asked if we were comfortable bringing Trinity home and doing the catheter. Since Shannon and I have both got to do the catheter a few times with the help of the nurses we both felt comfortable doing it on our own. Before Trinity left the hospital they did an ultrasound on her hips to make sure that they are in place and the ultrasound showed that her hips looked good. Although it is exciting to bring Trinity home, it is somewhat overwhelming and scary. We are doing the catheter every 4 hours and she is eating about every 3-4 hours. She's also on two different medicines. One is to make sure she don't get infection on her back and the other is to make sure she don't get bladder infection from the catheter. The nurses were very kind in making us a schedule so we don't miss anything. I forgot what it is like to wake up in the middle of the night and take care of a baby. We are doing the catheter and then feeding her while the catheter is in, otherwise we would have to sit and wait for it and that usually takes about 20 minutes to drain her bladder. She does her job and we usually are back in bed in about 1 hour. We are very blessed with Trinity and Aubree. Trinity rarely crys and is such a calm baby. Aubree has been really good since we brought Trintiy home and although it has been an adjustment for her she's been a great sister to Trinity, she even shared her blankie with Trinity today. Shannon is back at work and my mom is still here helping me. My dad flys in tomorrow night and then my mom and dad will leave on Sunday morning. It will be really hard having them leave, but Kathy will be here Sunday night to help us for two weeks. We have a lot of followup appointments for Trinity in the next two weeks. This makes it challenging when we have to do the catheter every 4 hours. Trinity's lesion looks really good, it is still leaking, but they don't seem really concerned about it. We have a Home Health Nurse that is coming to our house 2-3 times a week. She came today and looked at Trinity and went through some paperwork with me. She has another patient with Spina Bifida and gave me the mom's phone # so I could contact her and get some info to help us contact different people that can help us with some of the medical bills that we will have with Trinity. It will also be nice to talk to her for support and also since she knows what Shannon and I are going through. The nurse is really nice and has a lot of information that will really help us get through this. It is hard sometimes to think of what we have to do for Trinity, but like the nurse said today, Trinity will never know any different and someday Shannon and I will not either. This is definitely going to be an adjustment for our family, but with God and each other I know that we can get through anything. God always tells us that he will not give us more then we can handle. I have come to realize that someone somewhere always has it so much harder then we do. If you remember back to my blogs when I was doing the NST(non stress test) I had met a lady by the name of Liz. They were also having a baby with Spina Bifida. Unfortunately last week when I was checking her blog I found that they had lost their baby boy, Luke, on February 19. They show amazing strength in their blog and I can't imagine what they are going through. Please pray for them during this tough time and ask God to give them an understanding as to why he chose to take Luke at such a young age. We continue to appreciate all the support that we have received from all of you. It is overwhelming sometimes to think that this many people are lifting us up in prayer. We really feel your love and your prayers. God has blessed Shannon and I with so much in our 4 years of marriage and I can't wait to see what he has in store for us in the future. We have posted some pictures of when we were leaving the hospital and when we got home. There is a picture of us and our favorite nurse, Marsha. We were very blessed to have such great nurses while Trinity was in the NICU. Marsha was definitely one of our favorites and it always made us feel good when we knew she was taking care of Trinity.

Trinity's progress

Another day comes to a close and changes both good and bad happen in Trinity's life. Miranda and I learned on Friday that Trinity's bladder is not working the way it is supposed to be. The doctor did an x-ray in which he filled Trininy's bladder with three ounces of a dye filled liqued. A baby's bladder at Trinity's age only holds approximately one ounce before emptying. One hour later the doctor x-rayed her bladder again and found that she in fact was not empying like she should be. The solution to this problem is a catheder. Miranda and I learned that every 4 to 6 hours we have to drain her bladder. Miranda for the first time today successfully cathederized Trinity. At first it seems a little intimidating but Miranda handled it like a champ. We have a very seasoned nursing staff that showed us what to do, and this is certainly helpful. Secondly, Trinity's back is starting to leak some sort of fluid. At the top of the lesion there is also some swelling that has became more apparent over the last 24 hours. A combination of these two things warrented a call to Trinity's surgeon. Although she is not on call this weekend she made the drive from the city of Detroit. Once again showing that she is not only a surgeon, but a very caring person as a whole. After looking at the areas of concern she said that the nurses need to start weighing the bandages every time they change them to try to get a better feel for how much liquid is being lost. As a whole she didn't seem overly concerned. On the positive side of things, an orthepedic surgeon came and did an eval on Trinity's reflexes and leg movement. He was very happy with the response that he saw from her quadrecepts. The quad it the primary muscle that facilitates peoples ability to walk. This doesn't mean that braces won't be needed, but he said that it was probable that she would some day walk. As you can see by the picture, big sister Aubree is very proud of her new shirt and sister. Miranda and I continue to be very overwhelmed with the cards, meals, phone calls, gifts, thoughts, and prayers. Since Trinity's birth, both Miranda and my parents, my sister Tasha, and Adam and Paige Carlson have all been out to visit and support us. The help has been much appreciated and shows how caring of family and friends we have. Thanks again for everything it is truely overwhelming. Thanks lastly to our Lord and savior for all the answered prayers and healing hands.

Trinity's Progress

Today Trinity got moved to a crib!!! You can only imagine how excited we were to get that news. They removed her IV this morning and the dressing on her head. She is now wearing clothes and is sleeping in a crib. She's still hooked up to the monitors to keep an eye on her heart rate. The doctors are saying that she is making great progress and her lesion is looking really good. I got to change her diaper for the first time today. It was pretty interesting and not quite the same as when I changed Aubree for the first time. We have to make sure that nothing gets on her incision so it makes it very difficult when you are cleaning her from a dirty diaper. Things are just going to take more time and we are going to have to be patient with that. They were going to do an ultrasound today of her kidneys, but the neurologists decided that it didn't need to be done right now since she has pretty good wet diapers. They may look at doing that down the road. We still have to be very careful of her back so when she is laying down she needs to be on her stomach or on her side. They are checking to see if she will be okay to ride in her carseat, if they feel like she can't be on her back for that long then they will have us purchase a carbed. We are hoping that by the time we leave the hospital she will be okay to be in a carseat, since the carbed is around $200. We finally feel like there is an end in sight. The doctors think that she might get to come home maybe Monday or Tuesday. Although we would love to have her come home tomorrow or sooner, we feel comfortable knowing that the longer she's in the NICU the better her incisions will heal. We posted pictures of her in the crib and after her surgery yesterday. Please continue to pray for Trinity and her healing process and for Shannon and I as we prepare to bring her home. God bless