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

Shunt surgery

Surgery number 2 is complete and is a success. Trinity went in for surgery today around 11:00 am. At 11:48 the surgery started and was complete by 12:45. Once again Dr. Gilmer-Hill came to greet us in the waiting room with a big smile and let us know that everything went very well. She explained to us that the shunt she had put in was a programmable shunt which could be adjusted with a special magnet. The shunt can be programmed to allow the proper amount of fluid to flow through it. How it will be set will be dependent on how much fluid the doctors think is accumulating on Trinity's brain. The two main risks with the surgery are infection and the potential for the shunt to malfunction. We continue to be thankful to God that he brought us a surgeon that is so wonderful and has a way with making us feel very confident in her ability. Following the surgery Trinity went back to the NICU and continued to impress the nursing staff with her ability to bounce back after the surgery. Not more than an hour and a half later she was back off the ventilator and breathing on her own. It was very plain to see that as she woke she was in a lot of pain. She was given more antibiotics and pain medication. By 6:30 she was back to eating like a champ. The doctor didn't want her to get sick so they only let her eat 1 ounce. She guzzled this down in about 4 minutes. It was a pretty special time for me getting to feed her for the first time. It's pretty apparent that whether her mom is feeding her or she eating from a bottle, she likes to eat. She is definitely not afraid to strap on the feed sack. The surgeon is telling us that if there are no infections or no other complications that come up she will probably come home in 3 to 4 days. We are very much looking forward to her coming home. We continue to be overwhelmed with the amount of prayers that the good Lord continues to answer. What a blessing God has given us with Trinity. Thanks again for all the prayers and support, it means a lot to Miranda and I. We will post pictures from the surgery tomorrow.

Shunt

We just wanted to update everyone on what we found out today. Trinity had her cat scan at 2:30 this afternoon. From the results of that she is showing severe hydrocephalus on the back part of her head mostly on the left side. She had enlarged ventricles when she was born, but since closing up the lesion this has caused the ventricles to get larger and shows more fluid on the brain. We knew this could happen, but we were hoping to be the 10% that it didn't happen to. She will have her surgery tomorrow at 10:30 am. The surgery takes about 1-2 hours. They will put the shunt towards the back of her head on the left side and it will run down her neck into her abdomen. The fluid will then absorb into the tissues. The main concerns with a shunt is failure and infection. We pray that the surgery is a success and not painful for Trinity. When we feel like we are just starting to get over the hump another one stands in our way. We are glad that they found this and are going to take care of it right away so we don't have to worry about it in the future. We will be sure to update tomorrow night with how things went and maybe some pictures. Thank you for your prayers and please lift our precious Trinity and the surgeon up in prayers as she goes into surgery tomorrow.

Trinity is EATING!!

What a great day we had yesterday! Trinity got to eat for the first time with Miranda breastfeeding. She did not have any problems and has done a really good job since. She's eating about 1.5-2 oz every 3 hours. This is really good for just starting out. She got her first one at noon yesterday. Miranda got to hold her and even take a nap with her on her chest for over an hour. Miranda was discharged yesterday around 3:00. We stayed at the hospital for Trinity's 3:00 feeding and then went home until her 9:00 feeding. This makes for long days driving back and forth, but it is so worth it. Today we got up and played with Aubree for a little bit and then headed back to the hospital for her 12:00 feeding. Unfortunately we didn't make it in time and they had to bottle feed her. I guess she is going to like to eat like her big sister! While feeding her at 3:00 Trinity made us very proud with her burping, she does it like a pro!!! The lesion is looking very good and starting to heal. The doctor is very happy with the results. Tomorrow Trinity will have a cat scan done to check how much fluid has accumulated on her brain after closing the lesion. The results of this will determine whether or not she will have to have a shunt. We continue to pray that she will be that 10% that don't need the shunt. The Urologists will also see her tomorrow to check and see if her kidneys and bowels are working properly. They will probably do a ultrasound to check the kidneys and see if they are dilated at all and make sure that she is urinating like she should be. As the days go by things continue to get better for Trinity. She has changed so much already in her looks. It is just nice to see her off all those machines and to be able to hold her. Please pray for Aubree, she is starting to really miss her mommy and daddy and she don't understand why she can't spend all her time with us. Hopefully we will have Trinity home with us soon and Aubree can start playing with her and do big sister things with her. We also ask that you continue to pray for the healing process of Trinity's lesion and also for the cat scan tomorrow. God has blessed us so much already. What an amazing God we have and serve!!

Saturday

We wanted to share with you some more pictures of Trinity and some from her surgery. The third picture down is a picture of her and her surgeon. After the surgery Trinity was left both on pain medication and the respirator. By 2:00 am Trinity was out breathing the respirator quite well. By 10:00 am this morning she was off the respirator and breathing on her own. This was very good except when babies this age are taken off a respirator that does the breathing for them, they often stop breathing. By about 1:00 pm she had stopped breathing about 8 times. When this happens an alarm sounds and the nurses come in and stimulate her in some way and she starts breathing again. These episodes last anywhere from 20 to 40 seconds. This is not something that is terribly uncommon, but when you are in the room it is quite nerve racking. By about 7:00 pm the breathing episodes had slowed way down. Big sister Aubree went to visit today and brought a beautifully colored Dora the explorer picture. She has become a very proud big sister that likes to touch and feel her little sister maybe a little too much. One of the difficult things for Miranda and I is the fact that we want to hold Trinity close and bond with her. Around 8:30 pm Dr Gilmer-Hill showed up to see how Trinity was progressing. She unbandaged the recently closed opening for the first time since the surgery was complete and was very pleased with how the lesion looked. One of the concerns when pulling the skin together over an opening like this is whether or not the blood will recirculate in that area. When the surgery was complete last night the area around the lesion was a very light pale color. After pulling the bandage off you could see that the color of the skin had regained its normal color. To help understand a quick way to check this if you poke your arm with you finger and pull away your finger quickly, you see a white pale color. As you see your finger print quickly disappear and turn to your normal color you know that your blood circulation to that area is sufficient. This is what you see all the way around the lesion. She was very happy with her progress up to this point as a whole. She is however saying that it is probable that she will need to have another surgery on Wednesday to put in a shunt. On Tuesday they will do a cat scan of her head to verify that she has fluid on her brain. At this point she still doesn't see where there is much fluid accumulating. She says that 90 percent of all babies will eventually acquire fluid on the brain. We will continue to pray that Trinity will be part of that 10 percent that doesn't. Miranda and I would like to thank everyone for all the thoughts and prayers. So many have sent us beautiful flowers, stuffed animals, and we even had someone that made her a beautiful blanket and some hats. You will never know how much all of this means to us and our families. Knowing that we have your support and that so many of you are praying for us and Trinity makes this easier to get through. We love you all so much and can't wait for Trinity to meet all the wonderful people that have been praying for her.
With lots of love-Shannon, Miranda, Aubree, and Trinity


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Surgery

Today was a long day for everyone. We talked with some doctors about our options for who was going to do Trinity's surgery to close up the hole. The Neonatal surgeon that was going to do it, if she would have been born on March 3, was out of town on vacation. This left Shannon and I in a bind trying to find someone that we trusted to do the surgery for our little angel. Shannon spent a lot of time on the phone and talking with other doctors. We found a lady surgeon that has privileges at Beaumont. She was scheduled to meet with us between 3-4pm. Well 3:00 and then 4:00 passed and no doctor. There was an emergency surgery that was being performed and Trinity had been set back a couple of hours. The doctor arrived in Trinity's room around 6:30pm. She talked us through everything and we were reassured that we had made the right choice in choosing her to do the surgery. They prepared Trinity and she was wheeled down around 7:15 and started her surgery around 7:50. The doctor came out to talk to us around 9:30pm and told us that everything had gone really good and that the surgery was a success and they were able to close the opening up. Along with that came the news that they would probably be looking at doing a shunt sometime next week. She noticed that her ventricles were swollen and that with closing up the opening this was going to give the fluid nowhere to go but on the brain. She will evaluate Trinity over the next few days and give us an idea of when they think they will put the shunt in. Trinity will be on a ventilator for about 24 hours to help make her comfortable. We are so happy that she made it through everything and that she did so well during surgery. Now we pray that she recovers good from the surgery and that there is no infection.
Tasha, Shannon's sister, also flew in today from Iowa. This was a nice surprise and we are glad that she could make the trip here. Aubree also got to see her little sister for the first time. She colored her a Dora picture that is hanging up next to Trinity's bed. Aubree is a very proud sister!
Thank you for all you thoughts and prayers over the last few days. It has been very exhausting and emotional for all of us. God is sooo GOOD and he always gives us the strength that we need to get through these things.
With lots of love-Shannon, Miranda, Aubree, and Trinity

TRINITY SUE

The day started at 4:30 am with the arrival of Randy and Paula. For this guy it didn't make much of a difference, a train through the bedroom couldn't have woke me. For Miranda who had hardly slept a wink, it was a very exciting moment to interupt the sleepless minutes which were dragging on. At 5:00 am Miranda was experiencing what was either cramps or the beggining of contractions. By 6:00 am I had awoke to the ringing and the sound of Kathy having given Boyd the wrong directions in the heart of the Detroit. That is quite a interesting conversation after Dad had be driving from Omaha Nebrasks to Detroit Michigan. At 6:30 we had a house full. By this time Miranda is convinced that she is having contractions and it's a good thing we are headed to the hospital. We arrived at the hospital at 9:45 am and by 12:15 we were headed into the operating room. At this point it was apparent the the good Lord had the C section moved up for a reason, Miranda's contractions were getting very intense. Without the C section being moved our parents would never have made the delivery. Thank you Lord! By 12:48 Miranda and I had been blessed with a 6 lb 13 oz, 19 inch, beautiful girl. The question at this point was what is the name. After weeks of back and forth debates I gave in and we agreed that Trinity Sue Arthur was meant to be. Trinity is doing great. They would like to get the surgery done on Friday, but all depends on the surgeon and if it fits into their schedule. The opening is a little bigger then what we had originally thought. The good news is that she does NOT have hydrocephalous. We were told on Tuesday that she did, but God must have worked a miracle and she is showing no signs of that. This does not mean that she can't develop it after the surgery or down the road, so we need to continue to pray for that. She is beautiful and looks a lot like her sister, just in a smaller form!! She is in the NICU and Miranda is a floor above her. I spend a lot of time going between the two. Miranda is doing good. She had a lot of nausea, but that is starting to get better for her. We have added some pictures that will show you the opening in her back and also how beautiful she is. Thank you for all your prayers during the day, we definately felt the love of our family and friends. We will keep you updated on when the surgery is and how that goes. Love-Shannon, Miranda, Aubree, and Trinity

Change in plans!!

We are now going to have our baby on Thursday the 21st, tomorrow @ 12:15!! The hospital is called William Beaumont Hospital, Royal Oak, Michigan. Things are coming to fast, but God is GOOD!! My parents will be here around midnight and Shannon's parents will be here early morning. We feel very blessed to have such great parents that they will drop everything to be here. Plus, it will make it a lot easier on Aubree. Please pray for safe travel and that the weather cooperates. We will be sure to let you know all the news as soon as we can get to a computer.
Love-Shannon, Miranda, and Aubree

38 Weeks/C-Section Friday!!

Well we have some unexpected news. Today I had my normal NST, OB, and Ultrasound. The baby did not pass the NST so they had me go to Triage to be hooked up for longer. My OB came in and checked the strip only to see that the baby is not real reactive. Because I already had a ultrasound scheduled they let me go ahead and go down for that. During the ultrasound they are seeing that the baby is developing hydrocepholous (water on the brain) and that the amniotic fluid is lower then it should be. They had me go back up to Triage to be checked for a ruptured membrane. The membrane has not ruptured, but I am dialated to a 2 and 70% effaced.(Please don't quote me on all of this because I received so much information that I can't really remember all the doctor told us) The fetal medicine doctor recommened to my OB that they move the c-section up. They decided to do that for this Friday the 22nd. WOW, are we not prepared for this news. So we will have a new baby girl on Friday. We do not know the time yet, but they will let us know that tomorrow morning. My parents are going to drive out Thursday morning, so we will have someone here during the birth. They will stay until the 9th and then Kathy will fly out. I ask for all of your prayers. Shannon is very busy at work and I am not prepared at home. Please pray for good weather for my parents also. Plus, we feel like we haven't spent a lot of time with Aubree lately. We also don't have the name picked out! She might be nameless for awhile, I hope not!! We are hoping to have Shannon's laptop at the hospital so we can post some pictures. It might not be until Saturday or Sunday, but we will try to get some pictures of our new addition ASAP. Thank you in advance for all your prayers. This is going to be difficult not having our family and friends here, but we know you will be here in spirit. We love all of you!!

36 Weeks

Sorry for the delay in writing, but I didn't have a lot to write about. Last week I had two NST done. We failed the one on Tuesday and then on Friday we almost failed, but she prevailed right at the end! Whenever she has failed she always passes the BPP with an 8/8 so I usually don't worry too much. She is just not an active baby. Today I had another NST and she did a fabulous job. She passed with flying colors and didn't make me miss my OB appointment. My OB went good. Just gaining weight, but I think at this point I would much rather hear that then really bad news! They are keeping me scheduled for March 3rd for the c-section @ 1:30pm. We are counting down the days and trying to spend as much time with Aubree as we can. Next week I will have another ultrasound so they can make sure the baby is growing good. Last week she weighed about 4lbs 11oz. I don't think she will be as big as Aubree!!
We will keep you updated if anything new comes up. Thank you for all your prayers.

35 Weeks

Today I am 35 weeks!!! It is getting closer and closer. We found out on Friday that they scheduled us for the c-section on March 3rd. Exactly one month from today. I was hoping for a little sooner then that, but that is not for me to decide.
Our NST tests went pretty good last week. On Tuesday the baby didn't pass the test, so they had to send me down to have an ultrasound. She passed 8/8 so that was great. They did want to hook me up to an IV for fluids. They said I was dehydrated, but I bargained with them and said that I would drink more fluids. I hate IV's. Friday the test was the best one we have had yet. They said her heartrate was great and she moved quite a bit. They are keeping me hooked up for longer then I am used to, but if that helps her pass, then I can handle being there longer.
On Tuesday I met a girl by the name of Liz. She is expecting with her first child. They are also having a baby with spina bifida. As we talked she told me the many other problems that her baby is going to face. It's esophogus isn't attached to it's stomach, and only has one kidney. I would ask that you would pray for her, the baby, and her family. I can't imagine facing more then we are right now, but I know God does not give us more then we can handle. She's 32 weeks.
Aubree continues to sleep in her big girl bed. We do struggle getting her to sleep, but hopefully we can have that figured out before the baby comes. Shannon is busy at work and I am just preparing the house for the baby and spending time with Aubree.
Take care and we love all of you!!