We are finally home with Trinity after two weeks of being in the NICU. Trinity is doing pretty good. She got home Friday afternoon and enjoyed a peaceful weekend with her mom, while daddy and Aubree were in Iowa. Shannon got home last night and Aubree is going to stay in Iowa until next weekend. I really miss her and can't wait to see her next weekend!
Today the Home Health nurse came to see Trinity. She weighs 10lbs 4oz!! I don't think she has any problems eating!! She did point out that Trinity was a lot more fussy then the last time that she seen her. Shannon and I both feel the same way and are wondering if her back is starting to bother her. It is really hard to keep that area clean and we have the concern that urine and stool are getting up there. She will see the surgeon on Thursday and hopefully we will have made some progress with the healing of her back. On Wednesday she has an Audiologist appointment to have her hearing checked again. When she was a little over a week old she failed the hearing test on her left side. We continue to do the catheter once a day per the Urologist until we see him in a couple weeks. Hopefully at that appointment they will let us do it as needed since she has been urinating on her own with no problems.
Please keep Trinity in your prayers as her back continues to heal. Our biggest concern is that she doesn't get an infection in that area that is open. You can tell that it is bothering her and we feel so helpless when we can't help her feel better. Thanks again for your prayers and support! We love all of you so much!
Thursday, March 27, 2008
Trinity will be coming home tomorrow afternoon. On Wednesday night her surgeon put big steri strips on to pull the skin together and try and close the opening on her back without having to go back in for surgery. They will check this once a week for two weeks. At two weeks the surgeon will then take them off to see if the skin has come together at all, if it doesn't then they will consider going back in for surgery and possibly doing a skin graph. We are praying that this works and Trinity will not have to go back in for surgery. She will be on an antibiotic for another two weeks, but it will be oral and something we can give her at home. She has been such a trooper through all of this and all the nurses absolutely love her!! We have decided to let Aubree stay in Iowa for another week and then she will come home next weekend when Tiffany and Jerad come out to see us. This will give her some more time with everyone in Iowa and give Shannon and I a chance to get settled with Trinity before Aubree comes home. Please continue to pray for the healing of Trinity's back and safe travel for Shannon as he travels back to Michigan on Sunday.
* The picture is of Trinity's back after they put the steri strips on.
Sunday, March 23, 2008
We hope everyone is having a great Easter Sunday. We decided that cafeteria food is not the greatest thing to eat on Easter, especially when it is burritos. Aubree is in Iowa and enjoying her time with her cousins, she doesn't want to talk to her mom and dad on the phone (it makes mom cry). On Thursday Aubree got to enjoy a Spring Fling that the hospital had for the family and patients in the NICU and PICU. I added some pictures of her after she got her arms painted. She had a lot of fun!!
Trinity is doing pretty good. The healing process is taking a little longer then we thought it would, but the surgeons seem to think it looks better everyday. There is still an opening that they are concerned about, but they are trying different things to get the skin to come together. Tomorrow they are going to use steri strips to help bring the skin together. We are praying that this works and that she don't end up in surgery again. She continues to eat like a champ, she weighs 9lbs 6oz. She makes sure that she don't miss a meal!!! They are only doing the catheter one time a day and only getting small amounts. The urologist is hopefully going to see her while she is in the NICU and reevaluate her. She has diaper rash pretty bad, so at night they open her bottom up to a heat lamp to dry it out.
The nurses that Trinity has had the past 3 days have adored her. They told us today that they were fighting over who was going to take her home. They moved Trinity so she is not in her own room anymore she shares a big area with about 9 other babies. There are very rarely any quiet moments with the sounds of babies monitors and lots of babies crying.
Hopefully we only have one more week of being in the NICU and then we won't have to come back. She has 5 more days of her antibiotic. Shannon is leaving for Iowa on Thursday and then he will bring Aubree home with him on Sunday. I will be pretty lonely, but spending most of my time at the hospital. Thank you again for all the kind thoughts and gifts that you have been sending us. We can not thank you enough. God has truly blessed us with great friends and family.
Wednesday, March 19, 2008
Well we left the hospital yesterday with the understanding that Trinity was going to leave the hospital with a pick line (an IV that she could go home with) and come home possibly Thursday or Friday. When getting to the hospital today Trinity was due for her antibiotics and they were needing to do a new IV, but they wanted to wait until they new if they could do the pick line. After waiting for an answer from the surgeon and not getting one, they decided to put an IV in since they hadn't heard anything from the doctor. Because they had put an IV in about every vein in her hands and feet they decided to put one in her head. I was not real happy to see this and when the neurosurgeon came in to see her around 6:30 tonight she was also not happy. Babies with hydrocephalus should not have IV's put in their head so they had to take the IV out and as we were leaving they were trying to find a new place to put it. Trinity needs to be on this antibiotic for 2 weeks, so with that said we found out today that they will be keeping her in the NICU for another 9 days. We were not overly thrilled about this, but they really don't want to send her home with the pick line and they would like to keep an eye on the incision to make sure it heals correctly. On a positive note, she's urinating more on her own and they are doing the catheter twice a day. Her incision looks good and it has not been leaking like it was in the beginning.
Aubree will be going home with Boyd and Kathy, they are leaving on Saturday. Shannon is coming to Iowa the following weekend and he will bring her home with him. She's really excited to see everyone and Shannon and I both think it will be really good for her.
Please keep Trinity in your prayers as she continues to heal from her surgery. We would also ask that you pray for safe travel as Boyd drives to Michigan tomorrow and they leave on Saturday to go back to Iowa.
Monday, March 17, 2008
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.
Saturday, March 15, 2008
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.
Thursday, March 13, 2008
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.
Friday, March 7, 2008
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
Tuesday, March 4, 2008
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.
Saturday, March 1, 2008
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.