Timothy James

I was admitted to the hospital on Dec. 8th because my amniotic sac was leaking and I had begun to dilate. I was ordered to lie flat on my back until the baby came ( I was due April 2nd!). Well, on Dec. 17th my water broke at 7:15pm and Timothy James decided to come early. He was breech and already on his way out, so the doctor did an emergency C-section and at 10:20 pm he was delivered. He went straight to the Neonatal Intensive Care Unit (NICU) and has been there ever since. Timothy was only 25 weeks along in his development (a "normal" pregnancy lasts 40 weeks) so he still has a lot of growing to do.

Age since Birth: 11 weeks
Gestational Age: 35 weeks
Weight: 3 lbs. 13.7 oz.

Timothy is particularly sensitive right now to all touch and sound post surgery. He is still sedated but can feel and react to discomfort.

His blood infection is still being treated, however, recent blood cultures indicate that his infection may be gone. This process occurs over days but so far the test for the blood infection is negative. The infectious disease doctor put him on an additional antibiotic because he was showing signs of another possible infection.

Breastmilk feedings were begun again at 2 cc's per hour (almost 2 oz. in 24 hours - remember 1 oz. = 30 cc's)

His platelet count in his blood is a little low. If he does not begin making more, they'll need to give him a tranfusion.

Praise - so far his swelling is not as bad as previous post surgery conditions
- his lungs continue to look ok on the daily x-rays

Prayer - continued recovery from surgery
-they had to go up on some ventilator settings while he recovers, so pray that they'll be able to begin weaning him off the ventilator soon
- platelet count would go up
- proper liver functioning

Age since Birth: 11 weeks
Gestational Age: 35 weeks (This is how far along he would be developmentally if he were still in utero. A normal pregnancy lasts about 40 weeks)
Weight: 3 lbs. 13.3 oz.

Timothy passed through surgery with flying colors tonight! The PDA was smaller that they had expected, but still needed to be closed off. All his vital signs stayed very stable throughout the 1 1/2 hours of surgery.

His incision runs under his left armpit and he has 1 chest tube coming out from under his left lung as a means for excess air from surgery to escape out of the chest cavity. Hopefully the chest tube will be removed in a couple days.

Now comes the recovery process. He is back on a continuous Fentanyl drip for sedation and an IV. They may begin breastmilk feedings on Saturday. After surgery there is a "fluid shift" in which excess fluid moves into the body tissue. This causes swelling (just like after his lung surgery). The fluid needs to be absorbed back into the body systems to be processed and expelled.

Praise - God sustained him through the surgery
- the PDA was not as large as originally thought to be
- the surgery went very smoothly according to the surgeon
- his lung x-ray and blood gas tests post surgery showed very good improvement

Prayer - that the swelling would go down quickly
- sedation and pain medications would be effective
- that the surgery would be successful in allowing him to get off the ventilator very soon

Timothy will be having surgery on his PDA today at 5:00 p.m. This procedure should help his heart function better and help him breathe more easily.

Age since Birth: 11 weeks
Gestational Age: 35 weeks
Weight: 3 lbs. 13.3 oz

Well, Timothy was scheduled to have surgery performed on his PDA today but it has to be rescheduled due to a family emergency of one of the surgeons who will be performing the operation. It may possibly be on Friday evening.

Tonight was daddy's turn to hold Timothy for a whole 45 minutes! (Mommy had a 2nd turn during the day :)
Jon said that after having held him finally, the words "God is holding him in His hands" means so much more.

He is still experiencing trouble with his liver.

Praise - he was put back on breastmilk since the formula did not have the desired effect (although he'll go off again for a while after surgery)
- Timothy tolerates, even seems to enjoy, being held

Prayer - wisdom regarding timing and staffing of his surgery
- improved liver functioning/lower bilirubin levels
- continued healing and development of the lungs

Timothy will be going in for heart surgery tomorrow evening. They will be closing off his PDA.

Prayer
-that God will guide the surgeons.
-Strength for Timothy through and after the surgery.

Age since Birth: 11 weeks
Gestational Age: 35 weeks
Weight: 3 lbs. 12 oz.

This was the most exciting day so far because . . .
I got to hold Timothy tonight! This was an answer to a lot of prayers. After giving him a sponge bath under supervision of his nurse, they transferred him- ventilator tubes, monitor wires, and all- right into my arms! I was able to hold him for about 5-10 minutes with daddy standing right by helping to support the ventilator tubing. It was a wonderful time!

Timothy has his 2nd echocardiogram on Thursday. They will be looking at the PDA (see Tues.) to see if it will require surgery. His primary doctor will be also be gone for a week beginning Friday so pray for the other doctors responsible for his care during that time and for peace for Jon and I.

Praise - Timothy did very well as mommy held him tonight
- He is having fewer bradycardia/desatting spells
- He is requiring less pain/sedation medication
- His incision from the lung surgery seems to be healing well

Prayer - Wisdom for the doctors responsible for his care over the next week
- peace and rest for mommy & daddy

Timothy had some more exciting changes this afternoon. Up to this point he has had an endotracheal (ET) tube down his throat and has been on a ventilator which does the breathing for him. For a couple of hours this afternoon he was placed on something called CPAP (continuous positive airway pressure). The ET tube was removed and nasal prongs reaching to the back of the throat were inserted. A constant stream of air is blown through these prongs and into the baby's lungs at a low pressure. This helps to keep the lungs partially inflated but the breathing is actually done by the baby. So for a little over 2 hours Timothy was breathing on his own today! This was a trial run and there will be more as he tolerates it. This is usually the step in between ventilator breathing and breathing completely on his own.

Weight:3 lbs. 12 oz.

When Timothy was born he was diagnosed with a condition known as PDA. In utero, the baby receives oxygen from the mother through the placenta and the ductus arteriosus allows blood being pumped from the heart to bypass the lungs and go directly to the body. At birth when the baby begins to breathe on their own this ductus arteriosus closes so the blood can travel through the lungs to pick up oxygen. Timothy had his echocardiogram today and it showed that his ductus arteriosus is still open (PDA). This can lead to heart and lung complications and needs to be corrected through medications or surgery. At this point, his PDA cannot be corrected through medication so surgery may be required. Timothy's situation is complicated because of his other issues, liver failure, low platelet count, recent lung surgery, etc. His doctor is consulting other surgeons in order to determine if and when surgery should be performed.

Prayer
-wisdom for doctors regarding the heart

Weight: 3 lbs. 11oz.

Mommy spent most of the afternoon with Timothy today and he had pretty good afternoon. His heart rate has remained high enough( no bradycardia spells). He has been producing a lot of secretions that need to be suctioned out of his lungs and endotracheal tube hourly.

His blood infection is very serious and he is on contact cautious alert which means anyone who touches him for any kind of care must wear gloves and gowns in order to prevent spreading the infection which is very virulent. The doctors cancelled the 2 antibiotics he was on and changed to a different one.

He had his renal and brain ultrasounds but the results will not be available for several days. His echocardiogram was rescheduled for Tues. am.

His bilirubin levels are still high (liver issue). No word yet on whether or not he'll be able to go back on breastmilk soon.

His lung x-ray this afternoon looked much better!

Praise - he had a great nurse today who really kept a good watch on him and involved me in some of his care
- improved lung functioning

Prayer - less secretions in lungs
- that he'd be able to go back on breastmilk soon
- successful treatment of blood infection

Weight: 3 lbs. 11 oz.

Timothy's x-ray this morning (he has them daily) showed a slight improvement in his lungs.

He is experiencing liver failure to some degree. It is just not functioning the way it needs to and there's not a lot the doctors can do about it.

The lab results are back regarding his blood infection. He has a bacterial strain that no one in the NICU has encountered before (leave it to him to be unique and special :). The doctors consulted an infectious disease pediatrician who knows about the "bug" and was able to prescribe 2 antibiotics to treat the infection. Unfortunately, the medication usually used to combat this "bug" successfully cannot be given to Timothy because of his liver condition so let's pray that these other choices will be just as effective.

Several weeks after his birth Timothy was diagnosed with a brain condition known as periventricular leukomalacia (PVL). It is a condition which ultimately may affect brain functioning in the areas of motor development (possible cerebral palsy), vision, and learning disorders. He has periodic ultrasounds to see if the disease is progressing over time. For the past several weeks there have been indications on the ultrasounds that it is progressing and more of the brain is being affected. He has one of his follow-up ultrasounds tomorrow (Monday).

Several of you have asked about when they are projecting he might come home. It will probably not be until his original due date (April 2), but more than likely, it will be quite a while after that because he has been so sick.

Praise - they identified the blood infection and are treating it specifically
- he had fewer bradycardia/desatting spells today
- some improvement in his lung situation

Prayer - Tests on Monday - Brain ultrasound
- Renal ultrasound
- Echocardiogram (heart)
- blood test to check bilirubin levels (liver)
- blood gas test to check air exchange in lungs
- successful treatment of blood infection
-continued healing of his lungs
-proper liver functioning

Weight: 3 lbs. 10 1/2 oz.

Timothy is having some trouble with his right lung again. The doctors have made some new ventilator adjustments in hopes of correcting the problem. Beyond this, they're not sure what else to do for him.

He has also been having "spells" where his heart rate drops (bradycardia) and oxygen saturation levels drop dramatically for anywhere from a few seconds to several minutes. The doctors are not sure what is causing these spells.

Prayer: - wisdom for the doctors in finding out how to best treat him
- complete healing of his lungs so he can breathe on his own
- comfort and rest so his body can heal and develop

*God has brought Timothy (and us) through a lot. We have experienced his faithfulness in bringing Timothy through time and time again when the doctors couldn't do anything else. We are trusting in that faithfulness and the knowledge that God loves Timothy even more than we do. We believe that He is able to accomplish what concerns Timothy in the future. We are claiming His precious promise in Jeremiah 29:11: " 'For I know the plans I have for you,' declares the Lord, 'plans to prosper you and not to harm you, plans to give you a hope and a future.' " We do not know what that future holds or how long it will be, but we know Who holds the future! God is in control!