July 23, 2010

Very little urine again. It is not enough. There is so much going in and not much coming out . You need all the things that are going in to keep you alive, but if nothing comes out...it makes you worse. So frustrating. Dr. Desoler is doing everything he can...that I know for a fact!
I came into your room around 2:30 this afternoon and you were doing very poorly. The nurse practitioner, Amanda,asked me where daddy was and they went to get him. Mommy finally got to hold you and I did for a very long time. You passed away around 6:30 p.m., in my arms. My tiny angel on earth...now in heaven.

I would like to say that Chris and I always knew from the beginning how serious things were. We chose to have hope, be positive , and give our sweet angel a chance to live. The Doctors, nurses, and staff were EXCELLENT in their care and we cannot thank them all enough. Every single one of them became like family to us and to Cruz.

July 22, 2001

Very little tee tee overnight. This is very worrisome. Still hoping. You looked very swollen today. You went to CT and mommy and daddy consulted with all the doctors afterward. We were hoping it wouldn't be as bad as they said in the beginning....but it was actually worse. It was discovered that your brainstem was being compressed....ahhhh...that's why there was so much trouble with the blood pressure and now other things are happening because of this. We have been noticing a downward trend in vital signs. We are still hopeful though. All we can do is pray. You are on every medicine possible and there is nothing left to give. We love you very much.

July 21, 2010

A rough day. Started out with the reservior placement. That went well,but still no urine. So, Dr. Desoler consulted with some specialists and they all came up with some different things to try...problem is that with your low blood pressure it is hard to put the IV in you need for the new meds. BUT...they got it in and your blood pressure was better when we left that night.....praying for urine. Your color looked a little better to me which means the medicine is working, the blood is flowing better. The kidney scan came back good, so no trouble there. Also, we are finally getting the much awaited CT tomorrow. They are giving meds for the fungal infection that is causing all these problems. Fungal infections take time to get rid of, but your on 2 meds for it. We love you and have everyone praying for tee tee!

July 20, 2010

Well , you stayed stable through the night again, but no urine. The doctor is trying to make adjustments in your medicine to fix this problem. They will do a kidney ultrasound tomorrow to see what is going on. The good news is that when they went to take out one of your chest tubes, the other one fell out with it. It wasn't even doing anything anymore and you didn't miss it a bit throughout the day! So, NO chest tubes now...:). Dr. Bermudez is going to do the reservior tomorrow for sure. We just gotta get that blood pressure up and make some tee tee!

Meagan was your nurse today and Lou was there this evening. You are in good hands! we love you and will keep praying for tee tee!

July 19, 2010

Well, today you were about the same. We are still waiting for your blood pressure to maintain on it's own and still praying for pee pee. Dr. Bermudez came to see you and said that he might do the reservior on Wed. Erica was your nurse today and Dr. Payne was there too. Your clamped chest tube will come out tomorrow and then we will work on the other one..:). So.... for now just alot of praying and hoping. We love you!

July 18, 2010...4 WEEKS OLD!

Wow..four weeks already gone!You are getting bigger every day! You are still having blood pressure issues, but that is beacuse of the infection....we need that to go away! So, for now , things are really the same. Chest tube #1 is clamped and you are still doing good with that. You open your eyes and look around often. The nurse practitioner, Amanda , brought you 2 cute tiny blankies to cover your eyes so you won't be bothered so much. nurse Ann was with you today and you did pretty good. We are praying for tee tee again since your blood pressure is low. This evening you were resting and all was quiet. We love you!

July 17, 2010

Quiet night last night! Couldn't wait to see you this morning. Pretty quiet day until after lunch. You had to be bagged for a long while because you didn't like the vent again. We got to keep praying about your blood pressure because you are maxed out on blood pressure meds. You are even on one they never use.....Yikes. Still hoping for that CAT scan on Monday. They had to put 2 IV's in your head today because 2 lines were no good any longer. This evening you were stable and all was quiet. We love you!

July 16, 2010

Another stable night last night! So happy you are doing better. Still trying to get off of blood pressure medication. A pretty quiet day. Doctor Payne is thinking about clamping your chest tubes. This will be a test to see if they are ready to come out. Dr. Bermudez did not tap today and hopes we can get a CAT Scan on Monday...:). Your still on the regular ventilator and we hope you can get off of that soon.You had your eyes open alot today.....soooo sweet. Nurse Jennifer was back today and Alli was there tonight. I think all of the nurses have gotten attached to you! They are so wonderful. Daddy was on call tonight, so we stayed the night at the hospital. We got to see you a whole lot :). We love you and will be in first thing to see you.

July 15, 2010

Another quiet night last night...I could really get used to this! You were stable this morning and Erica was your nurse today. They are still trying to wean you off some of the blood pressure medications. Daddy was working and saw you early this morning then mommy came and stayed a long time just watching you. Dr. Bermudez came in today and said everything was good , so no tap today. This afternoon was a little crazy because your O2 sat dropped and that had everyone thinking that your right lung had a pneiumothorax. A chest x-ray discounted that theory, so the respiratory team came and tried to figure it out. You had ALOT of secretions built up in your lungs and it took a while to get it all out ( they can only suction you every so often...not good to do it all the time). Mommy was there and was not leaving until it was all fixed. Then,they had to fix your endotrachial tube. Sounds easy, but it took hours....turns out you liked the bag better than the ventilator and it took some time to get you adjusted. You finally agreed to the vent. and then your O2 sat was great. Prayed for those lungs and that you have another quiet night. Every passing day without insult to your lungs is good! Before we left we met your night nurse Amy. This is her first night to have you, but she seems great. You are so lucky to have so many wonderful nurses and doctors watching over you. They amaze me and so do you! Also, a lady that daddy works with made you the cutest blanket to put over your isolette to keep light out of your face...it is sooooooo cute! We love you!

July 14, 2010

Super Cute this morning! Blood pressure was good and they turned you on your left because you really needed the position change. I was really liking the safety of your right positioning, but I know you needed to move. Dr. Bermudez came again and did a tap...10 ml. You handled that well and he said the fluid is clearer. Erica was your nurse today.
This evening Lou was back and your blood pressure was even better. They have been weening blood pressure meds, so yay! Your catheter is gone and you are putting out some serious urine...:). Chest x-ray shows lung improvement, but that sneaky bleb is back on the right lung. Praying hard for it to resolve without causing a pneumothorax. We love you sweet man, see you in the morning.

July 13, 2010

You had your eyes open this morning when I got there so I showed you some pictures of your dogs, family and stuff. Your vitals were stable and you were about the same. Dr. Sorrel came and put a Broviac catheter in today. This should make things easier as far as giving meds., sticks , etc. Praying that it stays infection free! You tolerated the procedure well and nurse Jennifer took that mean old IV out of your head, plus you got to have the PICC line removed..:)! Dr. Bermudez came again and did a small tap...7ml. Looks like you will need a reservoir next week. This evening you were resting (still sedated from the procedure) and looked sweet. Nurse Lou was there and all was quiet....praying for a smooth night. See you in the morning. We love you.

July 12, 1010

Stable this morning and very swollen. You are tee tee'ing and they say that the swelling is normal and will go away. Ypu had a brain scan and a kidney/ bldder scan today. Your brain is staying stable. Dr. Bermudez did a small tap today and the fluid was more clear, which is good, and still has no clots. We are hoping that you can avoid the shunt. Your bands were down which means the antibiotics are working, so maybe tomorrow the Broviac catheter will go in. This is to give new access for bloodwork, etc and can be done at the bedside. Your lungs are still stable and hopefully growing strong quick! An eye Dr. came to see you today and said your eyes were fine right now..:)...Later this evening you looked less swollen and had alot of tee tee. You opened your eyes and moved a little. Praying for good night with nurse Lou. We love you!

July 11, 2010..3 Weeks Old!

Well, GOD answered our prayers and you had 64 ml of urine last night and your blood pressure is holding! :)...Your right lung has a bleb and we are praying it does not cause another pneumothorax, but otherwise your lungs look good.Nurse Erica was there today and Dr. De Soler said that he was going to start coming down off the blood pressure meds now. They think you have a yeast infection , so more antibiotics.
Tonight your nurse is Dawn. She is Awesome just like all the others! You looked better and are tee tee'ing. Blood pressure was good this evening and mommy feels like you will have a good night. We prayed that you do. Darcie said she loves you and we do too. Tomorrow is another body scan...just to check everything. See you in the morning......We love you!

July 10, 2010

Started off bumpy today. Late last night your blood pressure was low. They think it was due to the brain tap or an infection. They gave you alot of blood pressure medicine. You weren't urinating because of the low blood pressure and you swelled up. Mom and dad were worried and went to bed around midnight in the hospital courtesy room. We were awakened at 3 am when the NICU called our room, but hung up after a half ring because you were in distress. Your endotrachial tube had gotten clogged PLUS there was a blood clot in one of your chest tubes. The nurse practitioner that stays the night, Amanda, changed your chest tubes and the respiratory team cleared your airway. Dr. Desoler came in to check on you and ended up staying the night too. One day you will be able to give them a big hug! Later your pressure was a little better, but now we have some infection and no tee tee. More meds for you. We prayed and went to bed that night in the courtesy room again. Hoping for some urine output. Praying to God for tee tee and good blood pressure. We love you.

July 9, 2010

Another quiet night for you! This morning was busy because they did a scan of your head and another on your liver. The liver scan looked good, just a little sludge in your gallbladder. This is due to you not being able to feed yet ( we are working on that). The scan on your head showed a little more fluid, so Dr. Bermudez diid a tap of the ventricles to relieve some pressure. He got 14cc off but was impressed that their were not any blood clots in it. Usually he sees alot of clots he said. This is good because we don't want clots. The blood is reabsorbing. The chest x-ray looks better today.Mimi and pawpaw have made their 3rd trip in to see you today and tomorrow. Ma maw, Papaw, Uncle Chip and Aunt Melissa, Uncle Downey and Lori, Papaw George and Doris , Miss Donna and Hunter have all been to see you. We all feel that you will overcome and God will heal you. We love you. You got your first kiss from mommy today! I think you liked it because your O2 sat went to 91 when I kissed you! :)

July 8, 2010

You looked great today! You opened your eyes some and moved around alot. Your vitals wre stable and your nurse, Jennifer, said they were going to decrease some of your meds. Your right lung is looking better, but the left still has 2 chest tubes. One tube had to be repositioned today. All went well and that just happens sometimes..well alot of times. The brain scan showed a little more fluid, but the jury is still out on the shunt...just have to wait and see. We are still praying for a great outcome. This evening you were resting with a towel over your eyes because you are sensitive to the light. You were stable when we left and we hope you have a great night. We love you! See you in the morning! Just want to mention you have had many wonderful nurses so far: Jennifer, Jeanine, Lou, Trish, Debbie, Monica, Erica, Evelda, Angela?...and I know there are more. I will have to catch up. Dr. De Soler, Dr. Payne, Dr. Bermudez...and an awesome Resp. team including Carolyn and Mike and some others I don't know well yet...PLUS awesome nurse practitioners too! I am working on these names.

July 7, 2010

Your swelling was down this morning...:) and you looked like yourself. Dr. De Soler was back today. He said he was going to make some pressure adjustments to the vent., so maybe that will keep your lungs from having another pneumothorax and it will allow them to heal. Dr. Bermudez seems impressed that your head has not swollen and said that you seemed neurologically stable. This evening you looked good and managed to open your eyes for a minute before you got tired and fell back asleep. Your O2 sat got low because your tube got out of position when you moved....but it was easily fixed and you were fine. We love you and can't wait to see you in the morning!P.S. The right chest tube is out! 2 more to go.

July 6, 2010...no mask!

You were still stable when we saw you this morning and a lady came and did an ultrasound on your abdomen to look at your kidneys, liver, etc. It showed everything was normal...:)...You looked puffy, but that is normal and should go away.You got to lose the mask today since you are done with the billi light and you look so handsome. You actully opened your eyes briefly and I know you saw me. We are praying hard over your lungs. We love You.

July 5, 2010...day 15

The NICU did not call last night..which is good. Mommy and Daddy got to the hospital this morning and walked right in when your right lung was having a pneumothorax. The nurse practitioner Kim got a quick chest xray and put a tube in. you were fine after that and Uncle Downey came by to see you. We were worried and stayed a long time. After lunch your O2 sat dropped , but it turns out your tube was clogged and the respiratory team cleaned it out...then you were good. A echo showed your PDA was still closed...that's good. Dr. Bermudez said you would have a new scan tomorrow on your sweet head. Yo stayed stable the rest of the day and Mom, Dad, Darcie and Greyson spent the night at the hospital...you stayed stable through the night. We are right down the hall and are going to get ready to go see you soon..:)....we love you and are praying about those lungs.

July 4th, 2010...2 Weeks Old!

Well, this morning you were able to lay with your head straight. This is good to keep you from staying in one position too long. Your vitals were stable and we are still praying about those lungs. Dr. Payne said your chest x-ray looked a little better :). This evening the nurse practitioner fixed the IV in your foot because it was pushing your toes down. It looked better and you were stable when we left. Can't wait to see you in the morning! We love you.

July 3, 2010

Ok..so mommy is very nervous because tomorrow is July 4th and since you came on a holiday I am worried. Holidays are gonna make me anxious for a little while. The NICU called us at 1AM this morning to tell us that you had another pneumothorax in your left lung. Mommy and Daddy came straight there to check on you and you were stable. We stayed the night in the courtesy room because we were so worried. This morning you were still stable and we saw your chest x-rays. We need God to heal those lungs and make them strong! Be strong little man. Another chest x-ray this afternoon showed a little air still in the left lung at the bottom. Dr Payne didn't think it was a good idea to mess with it right now, but later this evening they ended up repositioning your chest tube and got rid of the air. You did really well with that and were stable when we left much later. I pray you stay that way. I hope you have a restful night and we will see you in the morning. We love you.

July 2, 2010

Well, the chest tube in your right lung came out today, but now there is one in your left lung. They say this is a common occurance with preemies..... but you sure gave us a scare because mom and dad aren't used to all of this stuff yet. On a more positive note......Dr. Bermudez looked at your scan and said it was better! Not sure if you will need a shunt or not...just have to wait and see. OT came today and fixed your positioning and your awesome nurse Jennifer sent a picture to us of you having tummy time (before the left lung pneumothorax). She said you really liked it.It's really crazy because you are so fragile that it seems like we wouldn't want to move you, but you need to be moved for alot of different reasons. It is a balancing act every day, but these doctors and nurses and staff are very good. Plus God is watching. Mommy is learning valuable lessons in trust and patience. I really hated leaving you tonight after all of this excitement, but nurse Debbie said she was staying right beside you and all your vital signs are stable. You are still on the regular vent!Your aunt Steph and uncle Jake came to check on you too! We love you!

July 1, 2010

Well, this morning you were down to 75% O2...:)...You are looking better and better. OT came today and propped up your hips and elevated your shoulders to help you grow right. You like to kick out your right leg which has us laughing. Dr. Bermudez came by and said that your tone was better and we will rescan your head tomorrow. Dr. Payne said that hopefully your chest tube will come out tomorrow too. Big Day. With the chest tube out you will be able to be on your tummy sometimes. Very worried about possible infections...we will be praying. We love you.

June 30, 2010

So, daddy went to work early this morning and calls to tell me that you are on the regular vent! This is good because your are a little closer to breathing on your own AND you get to be turned every 4 hours! When I got there you looked pretty comfy. I saw your sweet face for a minute while they turned the billi light off. You look like daddy!I pay that God heals the bleeds and makes your lungs strong and healthy. The nurse, Allison, gave me a sock baby to stick in my shirt while I sleep. She said it will smell like me and we can put it in your isolette. Also, you went from 95% O2 vent. to 85%...this is good.

June 29, 2010

You were still stable this morning which is good.Praying that the blood in your head resolves and that no cysts form. Your IV was moved from your right foot to your right hand. Daddy called his friend Whitt Bass today. He is a youth minister at First West. He came and did a baby dedication right in the NICU! He also annointed your isolette. I know you are gonna do great things. They also were able to turn your head tonight and mommy got nervous about your O2 sat. The nurse, Evelda, said it takes time for you to adjust. I did not go to sleep until midnight because I was waiting for you to adjust.....but you did.
I managed to find a teeny tiny outfit today that you might be able to wear when the time comes.

June 28, 2010

You looked handsome this morning. I saw you sucking on your tube again. You were very low on the Nitric when I saw you and daddy called at lunch and said that you got off the Nitric...:)!!!! Everything is stable, just praying about that sweet head. Dr. Payne said you might get some breast milk soon. I saw your sweet face again tonight.

June 27, 2010...One week old!

I can't believe a week has gone by. It has been very Crazy. I had a dream last night. There was a rainbow and you were there. Not sure what that means, but I know it's good. Today you were sucking on your vent. tube. You moved your arms and legs alot. Tomorrow is a new scan on your head. The doctors tell us it's serious, but they don't know mommy very well. I am reading the Atlas of Neonatal Sonography so I can be up to speed on this stuff. They are very smart, but I feel like God has a different plan. You got off the billiboat today and you got your comfy gel pillow too.We pray that the ventricles are smaller and clearer.

June 26, 2010

Today was a good day for you. All vital signs were stable and you look better and better everyday. We are hoping you can get off the oscillator vent. so we can turn your head and get some movement going. I was thinking today how I always felt you that you would come early....just didn't think it would be this early.

June 25, 2010

You are about the same today with no internal changes. I think you are looking a little fuller. I wonder about bringng you home. I keep thinking about a Halloween costume for you.....it's my favorite time of year. Daddy said that you will have 2 birthday parties every year...June 20 (the day you came) and the other will be whatever day you come home.

June 24, 2010

You were moving around a little today. Mommy and daddy got to touch your hand (they are long!). You look a little better on the outside with each passing day, but we are very worried about that sweet little head. The nurse said your head decreased in size a little which is good. we can't touch you too much because it will increase your blood pressure and that could effect your brain bleed, so we wait patiently and watch you get stronger.

June 23, 2010

Very rough day. A pneumothorax in your right lung had me very upset, but you recovered well and never had any distress. The PDA in your heart has closed which is good. I finally saw that beautiful face and you look just like daddy when he is asleep. Wecontinue to pray for the best outcome.

June 22, 2010

Today I am begining my quest to pump breast milk. I realize how important this will be for you in the future. Your bruises are begining to go away and they took out your catheter. We learned to day that you have a grade III brain bleed on your left and a grade IV on your right. This is not good they tell us, but mom and dad have studied this information and are praying about this. We feel it is in God's hands and we will wait and see. I think God told me to be patient because he has an awesome plan for you, me and daddy.Mommy has always had a hard time with patience, so I know God is touching me because I am being patient.

June 21, 2010

I briefly saw Cruz the day he was born. I was on medication and really don't remember alot, but I awoke Monday and thought everything was o.k. Chris explained to me that he was critical but alive. He took me to the NICU to see him and that was when I realized just how serious it was. So many wires, meds, and a very tiny bruised baby. I was at a loss. I was trying to understand what was happening and process all of the information. Monday was still fuzzy...so many visitors and I was tired,hurting and stressed. As soon as I saw Cruz I noticed he had his daddy's leggs, lips and hair. I could not see his face because he had to wear a mask to protect his eyes fro the billi light. In spite of it all you did smile.

Sunday, June 20, 2010....Father's Day

Well, I will give you an overview of the events leading up to this day. Chris and I found out were were expecting in January and were a little suprised because we really didn't think we would be able to concieve so easily due to the fact that I am 37. Turns out it wasn't that hard. We were excited but nervous because of all the risks that go along with a pregnancy after age 35. We thought it would be good to keep it quiet until we got past 12 weeks. At 10 weeks I began to bleed and thought the worst. I went to the Dr. and they said I had a subchorionic hemmorage and it will resolve itself ...or not. The baby was fine and the bleed resolved after about 2 weeks. What I didn't know at the time is that women with this type of problem are at risk for developing chorioamnionitis (I did) and preterm labor (I did)or stillbirth. So, off and on throughout my short pregnancy I felt bad and just blamed it on being a little older and being very busy all the time. Finally, on Saturday, June 19, 2010 I began to feel a little more tired than usual and laid on the couch most of the evening. My back hurt. When I went to bed my back still hurt and I awoke in the middle of the night with chills and sweats. I thought, "Well, I am getting sick." Sunday morning I still felt bad and I told Chris that I was sick. He took my temp.....100.5. I laid on the couch as he called the Dr. and tried to feed our other children. Just after he spoke to the Dr. very hard contractions started up suddenly. I managed to get to the bathroom where I discovered a little blood. Then everything just happened so fast. We headed to the hospital and when we got there I was in hard labor. They tried to stop it with drugs, but the baby was coming ( the infection was what caused the labor). Vaginal delivery was attempted , but then the baby's hand got in the way and we had to do an emergency c-section. Very scary for me. After a few minutes the baby was out and off to the NICU he went. At the time I had no idea how serious it was for him.